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The New GuestBooks @ Pituitary System: A new GuestBook / Forum system is available on a test basis. Please go to http://pituitary.mgh.harvard.edu/gb/ and choose the specialties area that addresses your interests. The old GuestBook system has been shut down. The Archives will remain, but new posts will no longer be accepted to the old system Please go to http://pituitary.mgh.harvard.edu/gb/ and choose the specialties area that addresses your interests.
REMEMBER: These Public GuestBooks are intended for Patients, Family and Friends as a way to:
Please Note: This is an unmonitored guestbook. We can not endorse or be responsible for its content. It is not, of course, an appropriate place to seek medical advice; rather to provide mutual support. For medical advice consult your physician. Note: We do not ordinarily edit the posts to these GuestBooks, so please be careful with what information you post. If you do not want to be contacted by others, then do not post your e-mail address. Remember - these are public GuestBooks and search engines will find your e-mail address. THANK YOU ! GUESTBOOK
1999
Hi everyone!! Happy Xmas and
millenium!! I´ve just been to see my doctor and he is very happy
with the results. My periods began on the night before Xmas,
haven´t had periods for 2 years!! My Diabetes Insipitus is still
on, i have to spray 1-2 times a day. I am losing weight, have
lost about 10 kg since august, think that is 20 pounds. I haven´t
felt so great for many years. My best wishes for a happy new
year!! Eva Just found this site.. I love it. I had a tumor and my entire pituitary gland removed 3 years ago. I feel preety good but am very unhappy with all the meds I take and the cost is any one out there on Growth Hormone therapy??I've been on it for 6mo and it did make me feel much better. Please let me know if anyone out there has this same condtion. Thanks, Carol Carol <zasrokc_AT_execpc_DOT_com> watertown, wi - Wednesday, December 29, 1999 at 00:49:52 Hi! I am a 15 year old female with a prolactinoma. I would appreciate any e-mails from young people my age going through this horrible experience! I cannot tolerate the medication for the tumor and am my wits end! Can anyone out there help me to understand this illness better? My mom is trying to do all the studying-up on it she can, but there is nothing better than voices from experience. Thanks, Krystle Krystle Tullos <eieio_AT_pacbell_DOT_net> CA - Tuesday, December 28, 1999 at 21:01:40 Diagnosed with a pituitary microadenoma about 6 weeks ago. I am in the process of gathering as much informatiion as is available and would like to know if anyone out there knows of informative web sites or where I can get good up-to-date information about pituitary tumors and support groups also. Onlia Cherry <onlia1_AT_msn_DOT_com> Oklahoma City, OK - Tuesday, December 28, 1999 at 16:05:16 Hope everyone had a great Christmas. I have 2 questions for anyone who can help answer them. Does anyone know of a good endo. in Western North Carolina or the surrounding area? Also, does anyone have a general idea how much Dostinex cost per month? Thanks for reading and I hope everyone has a Happy New Year. DeeAnna Russell <dean_russell_AT_worldnet.att_DOT_net> Canton , NC - Tuesday, December 28, 1999 at 10:58:16 27 year old female with a pituitary tumor treated with medication heidi stallings <stallingsheidi_AT_hotmail_DOT_com> nampa, id - Monday, December 27, 1999 at 21:44:31 HI EVERYONE...IM NOT DOING TO BAD..I WAS WONDERING IF N E ONE CAN TELL ME WHEN I WILL BE ABLE TO BLOW MY NOSE....I HAVE BEEN USING SALINE...BUT STILL FEELS LIKE THERE IS SO MUCH STILL IN THERE...THANX... TINA <GIRL-2-LUV-U_AT_WEBTV_DOT_net> MCDERMOTT, OH - Sunday, December 26, 1999 at 18:23:44 I was operated on to relieve a large cystic craniopharyngioma in 1965. Until 3 years ago I had no contact with 'fellow patients', when I heard of the Pituitary Foundation and it's local support groups known as PitPat. I attend meetings in both Bristol and Oxford. They ard both informative and supportive and a really enjoyable social occasion. Look out for info at your GP or BRI in Bristol. Good luck. janet wright cheltenham, glos - Sunday, December 26, 1999 at 13:07:10 I HAD A PITUATARY TUMOR, IT BURST DURING A SURGERY AN CAUSE DAMAGE TO MY OPTIC NERVE NOW I HAVE A PROBLEM WITH MY VISION. IT HAS BEEN A YEAR. THEY TOLD ME THE VISION WOULD RETURN BUT IT DID NOT. NANCY CARPENTER <NANCARP_AT_ AOL> TUCSON, AZ - Wednesday, December 22, 1999 at 03:17:37 I have been dealing with a pituitary adnenoma for 3 months now and have yet to know the answers. I have gained a tremendous amount of respect for the specialist in this very complex and confounded medical area. I feel confident in the treatment to come and the long term results of the treatment. My advise to anyone undergoing this medical problem to take the time to educate themselves on the subject. The word tumor, adenoma, etc. will scare the dickens out of us laymen, but knowledge is power, so fellow patients, get busy and learn as much as you can. The more that I know, the better I feel. This is a great place to start, right here. Take advantage of the great work of those dedicated physicians and researchers that take some of their valuable time to make this knowledge availible to each of us that have this delimma in our lives. Thank you all and God Bless and have a safe and healthy New Year! Jennifer J. Colvin-White <jfyre_AT_aol_DOT_com> - Tuesday, December 21, 1999 at 19:54:20 HELLO EVERYONE...I HAD MY SURGERY FRIDAY...IT LASTED 6 HRS...THE ONLY DISCONFRONT...I HAD WAS NOT BEING ABLE TO BREATHE THREW MY NOSE...( AN STILL CANT ) THE DOCTOR TOLD ME THAT HE GOT IT ALL...IT WAS BOUT 8MM...I STILL FEEL WEAK ...AN ALITTLE OFF BALANCE...BUT I GUESS IT WILL GO AWAY...HOW LONG HAS N E ONE ESLE WAITED TO BE ABLE TO BREATHE...I HAVE A COOL MIST GOING IN MY ROOM...MY NOSE IS STILL DRAINING...HAS N E ONE ESLE FELT LIKE WHEN THEY SWALLOWED THAT IS WAS PUSHING STUFF OUT OF UR NOSE...I DO FEEL ALOT OF PRESSURE IN MY EARS AN NOSE...THANKS TINA TINA <GIRL-2-LUV-U_AT_WEBTV_DOT_net> MCDERMOTT, OH - Monday, December 20, 1999 at 16:26:39 Hi, Has any one had a radiosurgery for the treatment of pituitary adenoma ? Please share your experiences of the same. Thanks much Vishal Vishal <vishal_manakame_AT_hotmail_DOT_com> Bellevue, WA - Sunday, December 19, 1999 at 14:43:44 Hi Everyone, It's been a long time since I posted on this web page. I was diagnosed with a 2.5 cm prolactinoma in Aug. of '97. At the time I weighed 215-220 pds. My endocrinologist started me on Dostinex (2 pills/twice weekly). My weight went down nearly 40 pounds within a 6-8 month period of time. I have been able to maintain this weight since then. The weight used to be a big problem for me as I would try to lose it and no matter what I did, it would always come back. I have been very successful with my treatment on Dostinex not only with weight loss but with shrinkage of the tumor. At my last MRI in Sept. '99, the tumor had shrunk nearly 2/3 of its original size. The medication is the only treatment I have had, no surgery or radiation. My pituitary gland is functioning normally. I hope you have a very merry Christmas season and healthy new year. Please feel free to contact me should you wish to discuss further. Take care. Tom Tom <tebkww_AT_bellatlanitc_DOT_net> PA - Sunday, December 19, 1999 at 12:28:17 has anyone taken Dostinex once a day? I thought you are only supposed to take this every few days. Now i wonder if I am taking too much and feeling ill because of this? Jo joanne - Sunday, December 19, 1999 at 11:11:01 I HAD A 4 CM PITUITARY TUMOR RESECTION IN 1999. SURGERY #1 WAS TRANSPHENOIDAL, SURGERY #2 WAS BYY CRANIOTOMY. BOTH SURGERIES WERE WITHIN 4 WEEKS OF ONE ANOTHER. I HAVE JUST UNDERGONE MY 6TH MONTH RECHECK AND UNFORTUNATELY FOUND THAT THE TUMOR IS BACK AND AT 3.3 CM. I AM SCHEDULED FOR RADIATION THERAPY AT THIS TIME. IF ANYONE HAS ANY SUGGESTIONS, COMMENTS OR INFORMATION IT WOULD BE GREATLY APPRECIATED. hugh R. Herring <randyhezmony_AT_worldnet.att_DOT_net> sarasota , FL - Saturday, December 18, 1999 at 17:22:35 Hello. I had a 9mm prolactinoma removed on 12/9/99. I was in the hospital for 5 days and it wasn't near as bad as I thought that it would be. My surgeon decided to go through the nose and so far it seems that it was a success. I have no bruising, no stitches (except for on my abdomen where he removed a fat gragh), and only had minor swelling. All of the tumor was removed. My surgeon said that it just seemed to fall out. My prolactin level went from 93 before sugery to 6 after surgery (3-17 normal). I go Monday for my follow up appointment. So far, no daily medications, my goal. If it wasn't for my faith and the prayers of my loved ones, I would have never made it through it. God is going to see me through this to the end. He has TOTAL control. I hope all of you have a Blessed Christmas!!! Donna <Dbowen_AT_intermediatn_DOT_net> TN - Saturday, December 18, 1999 at 11:53:36 Hi everyone its been awile since I last posted,everything seems to be okay (prolactinoma removed in 1997 some signs of reoccurence) I would just like to whish everyone a very merry Christmas and all the best in the newyear crystal <charrison_AT_pc.pein.org> Dauphin, MB - Friday, December 17, 1999 at 14:30:33 Hi everyone...my time is drawing near...I went an had my test done today...well most of them ...I have to get them finished up thursday...wish me luck...I have my surgery Friday...an i am getting more scared...I want to thank everyone who has talk to me ...an their support...I will let everyone know how i am doing ...when i get home...thanks again....an i hope u all have a wonderful xmas an a happy happy new year TINA <GIRL-2-LUV-U_AT_webtv_DOT_net> McDemott, oh - Tuesday, December 14, 1999 at 21:52:06 To everyone, just wanted to wish you a safe & happy christmas & a wonderful new year. And to DeeAnna, you will probably find that weight gain seems to be part n parcel of this whole pit tumour thing. I was diagnosed early in the year but have been gaining weight for a while. Im VERY SLOWLY getting some of it off being extremely careful with what I eat but I must admit I dont excercise. My levels are now lowering so hopefully that will help. Good luck and feel free to drop a line. Take Care, Peace & be Happy!!! Julie <milly_AT_eisa_DOT_net.au> Melbourne, Vic - Tuesday, December 14, 1999 at 19:34:53 I HAVE A REOCCURING PROLACTANOMA. THE TUMOR WAS FOUND IN 1992(12MM). I HAVE GOTTEN RID OF THE TUMOR TWICE NOW(WITH PREMAX ALSO KNOWN AS PERGOLIDE) AND HAVE BEEN BLESSED TO HAVE TWO WONDERFUL LITTLE GIRLS. MY BIGGEST PROBLEM IS THE ADDITIONAL WEIGHT THAT IS ADDED. DOCTORS HAVE TOLD ME THAT THE TUMOR IS NOT TO BLAME FOR THE WEIGHT BUT I NEVER HAD A WEIGHT PROBLEM UNTIL THE TUMOR. HAS ANYONE FOUND A SOLUTION TO THE WEIGHT OR HAVING A SIMILAR PROBLEM? DeeAnna Russell <dean_russell_AT_worldnet.att_DOT_net> Canton, NC - Tuesday, December 14, 1999 at 14:58:21 Hi there. I was just wondering if anyone has had a similar experience to mine. I have had a prolactinoma since 1991. I had surgery in 1995 and my prolactin levels dropped for a while but now they are back up at 101 even though I am taking 10 mg of Parlodel a day. I have been feeling really tired and achy lately and have been having headaches. I called my endocrinologist (who is my second attempt at finding a decent doctor) and he said that the headaches probably aren't related to the tumour and that I should just go and see my G.P. He also said the headaches could be due to the parlodel, but i have never experienced this before and have been taking the drug for years. I told him I would like another CT scan but he said the one I had a year ago should be sufficient! He said that the only option (as Norprolac and Dostinex aren't available in Canada) is to stop the Parlodel and go on the birth control pill. He said that at least then I would have some estrogen. The thing is, I want to try to get pregnant in the spring time and when I told him that he basically laughed in my face and said that my levels of prolactin are so high that I probably would never be able to get pregnant anyway so I might as well take the pill. I was so devastated by his callousness that I got off the phone and cried. I feel so frustrated because I am running out of doctors in Winnipeg. My husband shares my frustration and I am at a loss of what to do? Does anyone know of the side effects of not producing estrogen? Should I just go on the pill? I have been on it before but I don't like it. I feel like this is just a quick fix to get me to shut up. I refuse to believe that I can never have children and I want to find a doctor who will support me positively. THanks to everyone for writing on this web page. It has really helped me to feel like I am not alone. Alison <baileyau_AT_autobahn.mb.ca; or AlisonA_AT_tds.mb.ca> Winnipeg, - Monday, December 13, 1999 at 21:23:31 first time on meghan lederhaus <fsdjklghfiaothjrkl> windsor, sc - Sunday, December 12, 1999 at 21:48:27 I had surgery on November 9th for my pituatary abenoma. Things have been going really great for me since then. I was in the hospital for 6 days I will still need to be off work until the first week in January. My tumor was discovered in late October. The only symptom I had was back in June I stopped having my period. My doctor ordered a blood test when all my pelvic and pap exams came back normal. My prolactin level was high, so that triggered a MRI test. The rest is history. My surgery was done through my nose. I believe it was the best soloution. What a better alternative to opening my skull! I was put on steroids right away, but 2 weeks ago, my endocrinologist said thigs looked great and took me off of them. He will monitor me very close, but I feel so fortunate. The tumor was benign. It was big enough that medication would not help. I was told to expect all these different side effects, and to possibly be on a lot of medication for the rest of my life. I can't believe things have turned out as well as they have. The only problem I have now is my medical bills. But hey, it is better than all the alternatives. I have read many of the experiences from the others on the site, and my heart goes out to everyone. Having to deal with this is hard enough, but doing it alone doesn't have to be a problem. Please feel free to talk to me at any time. Andrea Andrea <onion_gutowski_AT_hotmail_DOT_com> Wausau, WI - Sunday, December 12, 1999 at 18:24:17 a dear young friend has been recently diagnosed. my concern for her causes me to want to know all i can. she is experiencing many side effects from parodel, i believe. i do hope to find her information and perhaps more help for her treatment. thank you for this site. connie bockwich <connieb79_AT_yahoo_DOT_com> - Sunday, December 12, 1999 at 10:27:09 My husband was diagnosed with a pituary tumor in"87 ". After many tests we were told that if he didn't have this tumor removed he would go blind in 3 months and probably be dead in a year.The surgury was done in "88". Everything went as planned and was released from the hospital 3 days later.He had 5 weeks of rad. He is now on synthroid, hydrocotasol and testosteran.He battles with his weight every day.He is doing real good as long as the flu bug stays away. Mar <mtgar.nittanylink_DOT_com> pa. - Saturday, December 11, 1999 at 21:30:57 My cousin in Lebanon just had an operation on her pituatary gland, she asked me to help her out and find out if their are others out their that have had similar experiences to her as it is not a common problem in lebanon. after seeing this site I know I can do my bit on the other side of the world to help her. Joumana <jkalach&hotmail_DOT_com> sydney, nsw - Friday, December 10, 1999 at 16:43:07 My cousin in Lebanon just had an operation on her pituatary gland, she asked me to help her out and find out if their are others out their that have had similar experiences to her as it is not a common problem in lebanon. after seeing this site I know I can do my bit on the other side of the world to help her. Joumana <jkalach&hotmail_DOT_com> sydney, nsw - Friday, December 10, 1999 at 16:43:02 Are there any psos support networks in England please? Patricia White <Patricia.White_AT_uwe.ac.uk> Bristol, - Friday, December 10, 1999 at 04:31:53 My son, aged 46, has had apituitary tumor since 1991 that we know of. He went almost totally blind before it was diagnosed. The ophthalmologists (spelling) diagnosed his situation as extreme stress and told him to come back in two months. He wound up in February of 1992 in the hospital in Redwood City, California and had 90% or so of the tumor removed thru the nose. Since then it has returned. He has very blurred vision with his left eye and almost no peripheral vision with his right eye. He has very good vision in that eye but can only see a small diameter of what he is looking at. Tunnel vision, I guess. Something is going on with a "third nerve" regarding his left eye, so they want another MRI this Fri, Dec 10. His last MRI was this November 4. We are hoping to find anything we can from anyone on this subject. I have little experience on the internet but will start doing what I can to get up to speed. I am retired and am 73. My vital signs are good and I have come down to South San Francisco to be with my son while he is going through this. He probably will have to take disability leave or whatever on a permanent basis. I am digging into that now. I will probably have to give up my Washington State apt to be with him here as he goes though the medical thing. Thanks. Lou. Louis Giraldin <http://www.aa7qt_AT_hotmail_DOT_com> Fall City, WA - Wednesday, December 8, 1999 at 16:58:01 has anyone here went for many years sick with a pit. tumor before getting diagnosed??? leslie <astorshome_AT_aol_DOT_com> astor, fl - Wednesday, December 8, 1999 at 16:57:40 My name is Sue. I've known about my tumor since February. I've just recently learned how to use the internet,and I'm finding out a lot about myself. I don't know what kind of pituitary tumor I have, but I'v also have something called Virchow-Robin spaces. My doctor is pretty vague about telling me what I need to know. This Friday I find out what type of tumor I have and possibly when I will have surgery. Wish me luck! Sue <me_AT_virtualtrials.org> Eau Claire, Wi - Tuesday, December 7, 1999 at 10:42:21 Hi, In '92 I was told to see an endocrinologist because I was having brest discharge. He took blood test and did an MRI. The MRI did not show anything but the blood results were high into the 100's..I had to see the dr every 6 months.After a year then a small pituitary tumor appeared about 3mm. My Dr didn't have me on any meds until I stopped menstruating..He put me on parlodel..to help me menstruate.I have been telling my dr that I have been gaining weight,have no energy but he also told me it's not the tumor. Now I am taking dostinx once a week.My blood level is down closer to normal. I was having MRI's every year but last year he decided I didn't need one because the tumor hasn't grown for a long time. Iam getting upset because my dr doesn't seem to care. I go to the office he looks at his paperwork on me ask a couple of questions and states were going to do blood test see you in 6 months. I went into the hospital in Nov for kidney stones and the drs there thought it may be related to the tumor but again my dr seems like he doesn't care. How often should I have blood work done 2-3 times a year? One time I told my dr I wanted the tumor out because I was tired of being on meds and he told me they could mess up and I could still be on meds for the rest of my life..Let me know what you think. Thanks for your time. Mary <bobobug1_AT_aol_DOT_com> Omaha, NE - Monday, December 6, 1999 at 22:41:58 Tracy, email me directly to compare notes regarding Parlodel and Dostinex. I have taken both medications to treat my prolactinoma. Lori Email:ToMajestic_AT_aol_DOT_com Lori <ToMajestic_AT_aol_DOT_com> MI - Sunday, December 5, 1999 at 00:00:00 My pit tumor increased 0,5 cm in eight months, my prl levels are from 34 to 56, the doctors keep saying that my symptoms ( weight gain, tiredness, dizzyness, insomnya) are not related, i woul love to hear from someone who has experienced this, and who knows why the tumor is growing so fast: is this normal? i `ve read that those tumors have a slow growing... well, mine has now 9mm, i hope to hear from you soon. greetings of brazil virginia Virginia <hulihu_AT_uol_DOT_com.br> - Friday, December 3, 1999 at 23:25:13 Does anyone experience any side effects taking Dostinex?I have just started taking it and I feel real tired all the time. Please let me know of any other side effects there might be while on this medication. I have also taken parlodel and permax. tracy fresno, ca - Friday, December 3, 1999 at 16:04:09 I was just diagnosed with a 9mm prolactinoma about a month ago. I have been doing research since then trying to find out my options. I have set up a surgery date of 12/09/99 for a transphenoidal resection. This seems to be the best cure, only complete cure. I DO NOT want to take medication for the rest of my life and I feel that this is my only option. The only complications that I am curently having is occational left sided headaches, possible infertility, delayed menstrual cycles. The MRI showed that the tumor was "bleeding within itself"? I would love to speak to someone who has had this surgery or might have a hemorrhaging tumor that is "bleeding". God bless... Donna Bowen <Dbowen_AT_intermediatn_DOT_net> Church Hill, TN - Wednesday, December 1, 1999 at 19:38:37 I had a tumor removed from my pituitary gland in 1992. My symptoms were: very bad headaches every morning, blurred vision, gained 75 pounds, breast grew to 48DD, carpal tunnel in both hands, mood swings, and depression, monthly cycle came on every 3 months. Yep, I felt like the woman from Mars. My husband constantly told me that I needed to loose weight. I tried, but nothing worked. My tumor was discovered after I passed out in the doctors office. A cat scan and MRI were arranged and the tumor was found. It was the size of 4 green peas. Radiation treatments followed that made me sick and tired of being sick and tired. I lost 75 pounds, my vision is great and I published my own book. Hey, my advice is find you a good doctor like Dr. Penix (Virginia) and you shall overcome too. Ritta <va4u_AT_hotmail_DOT_com> Chesapeake, VA - Wednesday, December 1, 1999 at 16:07:23 I have a pituitary tumor. I have been on parlodel since May of 99. I need to find a doctor in the area. I'm new here. Any suggestions? Kathy Isabella <jturner7_AT_uswest_DOT_com> COLORADO SPRINGS, CO - Tuesday, November 30, 1999 at 23:41:48 Hi Tina, The most important thing is to find a surgeon who does this transsphenoidal surgery alot. You can find a dr who will do anything you want..but it is best to have one the best at what he does. I have had two different approaches done for my pit tumor removal. My first time was through the nostril. My second surgeon used the under the lip approach for years and then went back to the nasal approach. His own personal prefrence. He attempted nasal approach on me and then had to switch to under lip due to scar tissue build-up. Pe They both basically end up in same area...through your sinus cavity into the sphenoid sinus below the sella turcica. I didn't notice any big difference between the two approaches, except for stitches in my lip. The stitches were not painful. Drive on up to Cleve we have a great neurosurgeon up here! Trish Trish <acrowhat_AT_aol_DOT_com> Cleveland, oh - Tuesday, November 30, 1999 at 12:54:17 Hi everyone...I go see my surgeryist tomorrow...I will find out if he can do the surgery though the nostril...If he can't I am going to fid one that can...I will get me results of my echo of my heart also...Wish Me Luck...An please give me a little prayer...Thanks to everyone you have been there ...when I really needed someone to talk to...Thanks Tina <GIRL-2-LUV-U_AT_webtv_DOT_net> McDermott, OH - Tuesday, November 30, 1999 at 08:15:30 Hi everyone...I go see my surgeryist tomorrow...I will find out if he can do the surgery though the nostril...If he can't I am going to fid one that can...I will get me results of my echo of my heart also...Wish Me Luck...An please give me a little prayer...Thanks to everyone you have been there ...when I really needed someone to talk to...Thanks Tina <GIRL-2-LUV-U_AT_webtv_DOT_net> McDermott, OH - Tuesday, November 30, 1999 at 08:09:54 I was diagnosed in July of 1994 with a large prolactinoma with levels that exceeded 10,000 when discovered. The only side effects that I had were nasal congestion and weight gain (especially in the chest). I have been on Parolodel and now on Dostinex. The tumor is still at 70% of its original size, and because of its position, my endocrinologist feels that surgery would not benefit me. My prolactin level is now at 250 to 300. I am also taking Testosterone replacement therapy, Testoderm TTS because my pituitary gland is no longer producing testosterone. I am wondering if any males out there feel fatigued quickly when excersizing, whether running or weight training or even carrying shopping bags from my car to my house I feel that my muscles get burned out quickly. Also, any males having weight problems and what are you doing about it? Robert F. Calise <bob_AT_loa_DOT_com> Providence, RI - Sunday, November 28, 1999 at 22:33:00 This site was helpful in explaining some of the details that I had questions about. Thank you. Robert F. Calise <bob_AT_loa_DOT_com> Cranston, RI - Sunday, November 28, 1999 at 21:44:11 YOUR SITE IS PACKED WITH VERY SIGNIFICANT INFORMATION INVOLVING PITIUTARY ADENOMAS!!!!!! WONDERFUL CC. CHARLOTTE CUPPER <CUPPER SETH_AT_CFNET.WEB> JENNINGS, LA - Sunday, November 28, 1999 at 06:53:52 To seth_AT_cfnet.web : I tried to send you this through email but it keeps coming back no host for your address. Hi, I'm Melissa and I have had Addisons disease for ten years now. Now that I have a prolactinoma I have gained weight also. The tumor has caused my thyroid to mess up so I have gained weight. I think that there are so many possibilities of medical conditions that can be caused by a pituitary tumor. If your pituitary puts out more TSH your thyroid tries to make up for it by producing less thyroid hormone. If your pituitary ask for more ACTH of ADH then it gets it. If your pituitary asks for more adrenaline hormone than your adrenal glands produce more which could cause cushings disease or the opposite could happen and you get Addisons disease. Now isn't that all good to know. Your pituitary is like the brain for all your hormones. I didn't read your whole message I just skimmed through it. There is alot there. I hope you get a good endo. They pretty much know how to deal with them. I think that there are certain stages that everyone goes through. I hope that someday there is a good book about them. There is a good book on Thyroid diseases and I highly recommend it "The Thyroid Solution" I got it at Barnes and Noble. I will never read it enough. It is very helpful. I think all that Lasix is bad for you . You are losing alot of potassium and whatnot. It probably makes you feel tired all the time, drains you of all your much needed essentials. I at first when I started to gain weight started to take Lasix thinking that it was water well it wasn't and it made me have heart palpitations because it lowers your blood pressure because it take out your volume for your blood. I wouldn't think that it is healthy for your bowels either. Doctors do make mistakes and try to treat you for the symptoms instead for the underlying 'cause. Well, it's Thanksgiving and I don't feel very sociable so I left early from the family dinner. I seem more happy alone these days. I take a whole lot of antidepressants passed up paxil along time ago. I can't sleep if I don't take them. I take 150 of trazadone , 30 of Remeron, 150 of Effexor if I start to not sleep I have to increase the trazadone so I can. You see my steroids that I take for Addisons makes me immune to my meds faster than anyone. Well I am going to let you go. I like to respond to at lest one person when I look at the guestbook. And this time I picked you. God Bless. Melissa <lazymae34_AT_hotmail_DOT_com> Corpus Christi, TX - Thursday, November 25, 1999 at 23:31:04 Hello, I am a 38 y/o male diagnosed Dec. 96 with 5mm. pituitary microprolactinoma. I was taking parlodel for the first year with side effects being a severe stuffed up nose every night, some nausea, and some increased head pains. The parlodel did lower my prolactin levels to normal range and my tumor did not increase in size at annual MRI. I am also getting quarterly lab work and quarterly vision field tests. My endocrinologist suggested Cabergoline or Dostinex that I take 2.5mg split into two doses a week. The side effects I have experienced with the Dostinex are...Day after taking meds I feel extremely fatigued, have trouble concentrating, have short term memory problems, and have more intense head pains. What I am wondering is if the Dostinex is making me feel this way or just my tumor? Some of my other troubles are...Weight gain, trouble speaking because of memory and concentration problems. The days I am to take my Meds. I have more frequent head pains and memory problems. Even a couple times driving the car I had problems paying attention even to the point of running a couple of red lights! NO accidents thank God. I am also experiencing fatigue, sleeping problems, some sexual dysfunction, and some mood swings. I greatly welcome any responses from people experiencing similar problems. Address e-mail to jayl2661_AT_aol_DOT_com Subject: Pit Tumor. Good luck to all of you! Thanks, Jay Jay <jayl2661_AT_aol_DOT_com> Spokane, WA - Tuesday, November 23, 1999 at 02:54:49 WELL HERE GOES! IT ALL STARTED IN 97'. I WAS DIAGN. WITH CROHNS, (JUNE 97). I WENT TO COLON RECTAL SURG. HE PRESRCIBED PREDNISONE 60MGS, NIGHTLY ENEMAS,ASACOL 400MGS (6 DAILY),.FAITHFULLY TAKING MEDS. STILL NOT GETTING BETTER. HE DIRECTED ME TO GASTRO. DID UPPER AND LOWER GI. UPPER CLEAR AND LOWER DISASTER!MY NORMAL WT. IS 165-170 LBS. HT.5'10". VEGATARIN DIET, VERY ACTIVE. SUMMER HEAT WAS MY BEST FRIEND! PUFFY ALL OVER. GOT WEANED OFF OF THE PRED. STILL NOT GETTING BETTER. TAKING SYCOSPORUM, PURINETHOL60MG.,PAXIL 20MG. WENT INTO HOSPITAL NOV.1,97.STAYED 9 DAYS. TPN GIVEN. WENT BACK FOR FOLLW UP. BARELY MAINTAINING.I WOUND UP BACK IN DEC.97.I SPENT 13 DAYS THIS TIME HAVING A SUBTOTAL-COLOTOMY. MORE TPN. FEELING BETTER SO I WENT BACK TO WORK JAN.98. WENT FOR HEMROID SUR. AND STAYED FOUR DAYS MARCH 98. WENT HOME TO RECOOP. WEEK AND A HALF LATER BACK IN CROHNS FULL BLOWN HAD TO BEG SUR. TO OPERATE. HE SAID MORE MED. FIRST. NO-WAY. WENT THROUGH MY FOURTH SCOPE IN SIX MON. CALLED HOUSTON TO VERIFY. THEY SAID NOTHING FURTHER COULD BE DONE. SPHYTER GONE ULCERARED FROM MOUTH, THROAT LARGE COLON. I RECEIVED MY ILLEOSTOMY ON MARCH 98. STAYED TWENTY THREE MORE DAYS. GASTRO SAID A NEW WORLD AHEAD BE HAPPY. REC. 28 BAGS TPN. WENT HOME TO MY NEW WORLD. TOOK IT SLOW. WENT FOR A SIX MON. SCOPE GASTRO SAID LOOKED GOOD. MY WEIGHT UPON LEAVING HOS. WAS 180. NOW SCOPE TIME 233LBS. HE SAID TO WALK. SET UP NEXT SCOPE IN A YEAR. IN FEB 99 WEIGHT WAS 245 LBS. BREAST LACTATING. I THOUGHT IT WAS MY PAXIL. GASTRO UPPED TO 40 MGS. I CALLED NURSE FOR SOME LASSIX FOR FLUID AND SINCE I HAVE A ELLI. ONLY COULD GET WEEK'S SUPPLY AT 5 MGS. TOLD HER OF LAC. SHE SAID SOUNDS HORMONAL INBALANCE, SEE GYN. WAITED TILL JUNE 99 WENT TO SEE GENERAL MD. WEIGHT WAS 272LB. FLUID HORRIBLE! DEPRESSED! HE PUT ME ON LEVOXIN .125MG LASSIX 20MGS. DID MRI. PIT.ADENOMA! BROMO. .5MG DAILY. STILL WAS NOT HAPPY WITH TREATMENT ,MY T'S WERE ALL NORMAL. SOMEONE TOLD ME TRY AN INTERNIST. I WAS DESPERATE! I WAS STARTING TO HAVE DULL PAIN IN CHEST, SMOTHERING FEELING NEVER DID SLEEP SINCE CROHNS STARTED. AVERAGING 3-4HRS A NIGHT. MY CHECK IN WEIGHT WAS 289LBS. HE PUT ME IN HOS. FOR 4 DAYS. INTROVEIN. LASSIX.SEPT. 99. FLUID BUILD UP HORRIBLE IN LOWERLIMBS. REDNESS BURNING. HANDS SWOLLEN. DROPPED 28#. SETUP APPT W/ ENDO. WAITED 1 MONTH TILL HE COULD SEE ME. BY NOW LASSIX 160MG.DAILY, CHANGED TO SYNTHROID.1MG. ALONG W/CROHNS MEDS. HE ORDERED SECOND MRI. 24HR URINE. BLOOD WORKUP. TWO WEEKS GONE BY. ALL TEST NORMAL! FAXED HIM RESULTS OF SEC. MRI. HE SAID TUMOR IS DISSOVLED! I CRYED BECAUSED HE SAID I WAS HIS LAST STOP. HE'D FIX ME! I WEIGHED 284# FOR HIS APPT. I WAS DEVASTED. BREAST LACTATION STILL HEAVY. ALL SYMP. STILL THERE! I CALLED MY INTERNIST BEGGING HIM TO HELP ME. HE SAW ME THAT DAY NOV.15, 99. MY WEIGHT WAS 2923LBS! HE PUT ME IN HOSPITAL AGAIN. INTROV. LASSIX STAYED 4 DAYS, 18# FLUID THRU FOLEY! NOW I AM ON POTASSIUM #4 2X AND TRYING TO GET AN ENDO. AND NEURO. TO SAVE MY LIFE. MY WGT. AT PRESENT IS 269#S. I'M A FEMALE, 41 YRS. OLD. FLUID IS AWFUL, WEIGHT IS EXTREMELY DIFFICULT TO LUG AROUND. I JUST HOPE GOD DOESN'T GIVE UP ON ME! I LIVE FOR THE CALL I FOUND ENDO. AND NEURO. TO SAY MERRY CHRISTMAS! EMAIL ADDR. SETH_AT_cfnet.web seasea SEASEA <SETH_AT_CFNET.WEB> JENNINGS, LA. - Monday, November 22, 1999 at 23:22:56 I HOPE I CAN FIND OUT SOME INFO. ON PITIUTARY ADENOMAS,PROLACTINOMAS,SEVERE WATER RETENTION,ETC. seasea <seth_AT_cfnet.web> Jennings, La. - Monday, November 22, 1999 at 21:59:52 I was wondering if any one else experieces blurred vision after looking at bright lights? The reason I was asking is I have been putting up xmas lights the last several days an I get really blurry eyed ...Thanks Tina Tina <girl-2-luv-u_AT_webtv_DOT_net> Mcdermott, Ohio - Saturday, November 20, 1999 at 22:28:26 I was wondering if any one else experieces blurred vision after looking at bright lights? The reason I was asking is I have been putting up xmas lights the last several days an I get really blurry eyed ...Thanks Tina Tina <girl-2-luv-u_AT_webtv_DOT_net> Mcdermott, Ohio - Saturday, November 20, 1999 at 22:28:19 I have had two surgeries and radiation to remove a lemon sized non-secreting pituitary tumor. My web site gives a detailed description of everything that I have gone through. I would be glad to answer any of your questions. God bless, good luck and keep your head up. Steve Howard <showard_AT_one_DOT_net> Cincinnati, OH - Saturday, November 20, 1999 at 21:39:29 I was wondering if some of you felt better on some days?An bad on other days.I am not on any meds,an there are some days that i feel so dizzy an out of wack.An other days like i dont have a tumor.I mostly feel bad after i have had my period.Could someone please tell me if they have felt the same way.I have a appointment the 17th of Dec to have mine removed.Thanks Tina <GIRL-2-LUV-U_AT_WEBTV_DOT_net> MCDERMOTT, OH - Thursday, November 18, 1999 at 20:43:52 I BELIEVE I MAY HAVE CUSHINGS, CAN IT BE POSSIBLE TO HAVE THIS FOR SEVERAL YEARS BEFORE DIAGNOSED. PLEASE PLEASE HELP! i am so tired of feeling bad! thanks, leslie LESLIE <ASTORSHOME_AT_AOL_DOT_com> ASTOR, FL - Wednesday, November 17, 1999 at 19:05:35 I am writing you in the hope that you will be able to tell me more about my medical problem. So I am going to tell you my clinicall history: I am 26 years old woman and in 1994 I went to a doctor because I had strong Headaches and I didn't see very well and also because I didn't have a normal menstrual cyclicity; so my gynaecologist said to do some exams(Rx and blood tests) the RX said that I had a macroadenoma with 1 cm and the blood test said that I had 196 of prolactin, so my doctor told me to take bramacriptine and I begun with 2,5mg once a day and then I increased the doses until the prolactin levels returned to normal. The problem is that now I am taking 30mg of bromocriptine and the prolactinlevel begun to increase again and the last time that I did the blood test(04-07-99) I had 47,3 prolactin level. Maritza <maritza.barreiro_AT_netc.pt> - Wednesday, November 17, 1999 at 17:08:39 I was diagnosed on September 13, 1999 with a 1.5 cm macroadenoma pituitary tumor sitting on the optic nerve. I really have no symptoms except for extreme weight gain. Now I am not sure what symptoms are normal and what my be the tumor. My prolactin level is only 51. So, the tumor is probably non-functioning or non-secreting and probably will have to have surgery. I am on Parlodel 3.75 mg/day with no major problems. I have had visual fields test (normal) and a full endocrine lab workup (within normal ranges). I am schedule to go to Mass Gen Pituitary Center on December 6, 1999 for a consultation. What questions do I want to make sure I ask? Also, can anyone assist me in understand the different surgical procedures there are and why you selected the one you did? The people with large tumors, are you all effected with vision problems, before and/or after surgery? Also, after surgery does the weight come off? The biggest question, I have had that I don't seem to get a direct answer is, How long have I had this tumor? If this tumor is slow growing, what does that mean? When is the point that you decide to have surgery and why? Cindi <IJohansen_AT_prodigy_DOT_net> NJ - Wednesday, November 17, 1999 at 09:16:43 Has any one with acromegaly that did have surgery have any problems with osteoporosis? Steve Bechtel <sbech10345_AT_aol_DOT_com> Marietta, Ga - Monday, November 15, 1999 at 19:44:30 COULD SOMEONE TELL ME (FEMALE) HOW YOU FELT WITH A HIGH PROLACTIN LEVEL TINA <GIRL-2-LUV-U_AT_WEBTV_DOT_net> MCDERMOTT, OH - Sunday, November 14, 1999 at 20:27:58 Im mad! Im sad. Why does this have to happen to me? I have hypothyroidism due to my pituitary tumor and I hate it. I have addisons disease for ten years now and now this. I never was fat before now I wear large whats next extra large. I want to be skinny again. I usually don't cry or talk about it because I am on so many dam antidepressents. I have been getting hand trembles and now I can cryso I probably need more antidepressent. I can't sleep very long anymore. I keep running out of clothes to wear and have to buy some more. I don't have anything to wear to church tommorrow. Oh yes I have a closet full of clothes but they do me no good. Why does a doctor have to wait eight weeks before testing TSH agin? I wish she could just fix me now!I know there other people worse off than me. I'm sorry for complaining but I needed to. Melissafats-so <lazymae34_AT_hotmail_DOT_com> corpus Christi, TX - Sunday, November 14, 1999 at 00:10:23 I WAS WONDERING IF SOMEONE CAN TELL ME IF THE HIGH PROLACTIN LEVELS CAN MAKE YOU BLURRY EYED AN STRANGE FEELING IN THE HEAD..MY PROLACTIN IS 95.3 IT TRIPLED IN JUST 13 DAYS...I AM HAVING IT REMOVED THE 17TH OF DEC...PLEASE REPLY TINA <GIRL-2-LUV-U_AT_WEBTV_DOT_net> MCDERMOTT, OH - Saturday, November 13, 1999 at 22:24:17 I am considering FRACTIONATED Stereostatic Radiosurgery (probably five treatments in one week) for a 2.2cm prolactinoma. I would like to hear from anyone who has had this type of treatment. Thanks, Arnold <arnoldk_AT_att_DOT_net> NJ - Saturday, November 13, 1999 at 07:05:07 On Dec 20, 1996 Dr Tatter (at MGH) performed a craniotomy to remove a 6 cm craniopharingioma. I was extremely lucky to get such a great doctor, and I was able to get out of the hospital four days later on Christmas Eve. I then had radiation treatment at the Harvard Cyclotron Lab four months later. I just wanted to say thanks to all who helped me, and If anyone else out there is going through somethig similar feel free to e-mail me if need someone to talk to and maybe my story will help. I'm not a doctor so I can't give advice or answer questions, but sometimes hearing about what someone else has gone through can calm some of those fears. Derek <heimdall_AT_wn_DOT_net> Norwell, MA - Friday, November 12, 1999 at 15:21:04 I was wondering if n e one has had blurred vision,with numbness,an eye pain.Due to the high prolactin level.Please would u e-mail me .My surgery is 12-17-99...an i am really scared TINA <GIRL-2-LUV-U_AT_WEBTV_DOT_net> MCDERMOTT, OH - Thursday, November 11, 1999 at 21:33:35 Prolactinoma patient. diagnosed 5 years ago. Inital size was 2.5 CM X 3.5 CM with a prolactin level of over 6400. Prolactin levels now below 100! This site has been helpful for me and I am always happy to answer questions others may have. Bryan Kean <BKean10_AT_aol_DOT_com> Kirkland, WA - Thursday, November 11, 1999 at 15:27:02 advice on what to look for lynn nash <g_AT_nashw.freeserve.co.uk> axminster, devon - Tuesday, November 9, 1999 at 00:45:08 Hi everyone! I went to surgery in late august 1999 and everything went very well. But i got diabetes insipidus and therefore i have to use nasal sprey, Minirin 2-3 times a day. Can anyone give me information about diabetes insipidus. Is there cure, will it go away or do i need to stay on the Minirin for ever. It is very difficult to get proper information about DI. Thank you all, and if anyone needs information about prolactinoma and surgery i will gladly help. I would also get to know someone that has prolactinoma via email. I am a 24 year old Female. God bless, Eva Eva <evag_AT_sks.is> Reykjavík, - Monday, November 8, 1999 at 08:17:46 I was diagnosed with a prolactin-secreting pituitary about a month ago. I am a 31 year old male. I have a macroadenoma -- it is about 2.3cm in size. My prolactin level was nearly 2500 ng/ml. My internist prescribed bromocryptine, and referred me to a neurosurgeon, a neuroendocrineologist, and a neuro-opthamologist. I was on 2.5 mg of bromocryptine for about a week, and my prolactin dropped to 600 ng/ml. The neurosurgeon was encouraged by this and is not recommending surgery at this point; he wants to see how far it will drop, and get another MRI in a month or so to see if the tumor is shrinking. I am hopeful things will work out. I can't find too much information on advanced research on the 'Net. Michael <threecatz68_AT_hotmail_DOT_com> Baltimore, MD - Sunday, November 7, 1999 at 19:37:19 I am planning to move to Atlanta, Goergia in about a month..can anyone reccommend a good endocrinologist to treat my prolactinoma, and pituitary microadenoma??? would appreciate a referral..thanks Denise Denise <misty_AT_kasnet_DOT_com> Kingston, - Sunday, November 7, 1999 at 00:44:17 Hi. My microadenoma has grown 2mm since january. My prolactin levels are "low" ( from 34 to 60 ), and I was wondering if someone has a microadenoma of this kind. My last cortisol test came high, too, but the doctor is not sure about cushings. I am feeling more tired every day. I need informations on dostinex also, this drug is no avaliable here in Brazil, does anyone know what company makes it? Please email me, any information would be helpfull. Thank you, take care. Liliane <lilianea_AT_voyager_DOT_com.br> Camaqua, RS - Sunday, November 7, 1999 at 00:32:53 Hi everyone. I had transsphenoidal surgery on September 20, 1999. I am looking for support both here in San Diego which is where I live, or through the mail. This whole ordeal has taken its toll on me. They have not told me exactly how big the tumor was only that it was the size of a pencil eraser. My surgery was performed at the NIH in Bethesda Maryland.I will add to the guestbook in a month or so and let everyone know how I am doing. Thanks. Timothy O'Keefe <trucking55_AT_hotmail_DOT_com> La Mesa, CA - Saturday, November 6, 1999 at 15:35:58 I have several symptoms that have led me to this page, along with the fact that my sister was diagnosed with Carney Complex (an endocrine disorder where one grows benign tumors (myxomas) throughout the body. My chronic symptoms are headaches, nausea, constipation, lightheadness, gastrointestinal upset, abdominal pain and lethargy). Does anyone else have these problems and have they been diagnosed with anything. Also, an MRI showed that I have pituitary nodules. Thanks. Michele <mmtraum_AT_mindspring_DOT_com> Rochester Hills, MI - Saturday, November 6, 1999 at 10:59:16 Lorrie, What kind of dr is a RE? m m - Saturday, November 6, 1999 at 10:11:25 Hi, I was diagnosed last month with a 5mm prolactin secreting pituitary adenoma. I have had high prolactin levels (100)for about ten years... a CAT scan done when first recognized showed no tumor and my Dr. didn't treat the prolactin level in any way. Fianlly after all this time of going through everything you all are so fimiliar with I made an appointment to see an RE. He ordered an MRI and found the tumor. I have been started on Bromocryptine/Parlodol and the side effects are finally waning with only the dizziness remaining. I have a few questions in all of this... (1) I have read of the weight gain problems which I have and have been fighting to no avail... has anyone been succesfull and if so, how??? I have tried both low fat and then low carb along with an exercise regime. (2) I experience a "heaviness" in my right eye... I cannot explain this very well, but first thing in the morning and while I am having a severe bout of headach I find it difficult to open my eye... it is like the lid is heavy. Is this fimiliar to anyone? (3) My RE is also testing me for endometriosis and PCO due to my lack of menstrual cycle... I realize that the amenorrhea is a "normal" occurance with the tumor, but I'm wondering if there is a relationship to other disorders as well? I am happy to finally have part of the answer to my health problems and am very optimistic that as my prolactin levels go down my cycle may return and I may be able to get pregnant after 13 years of trying! Many prayers to all of you... and thanks to whoever is responsible for a site gives hope through the experiences of others! **Special hugs** Lorrie <plwhhome_AT_northnet.org> - Friday, November 5, 1999 at 20:52:37 Looking to see if anyone out there is also having hypothyroidism difficulties in addition to their pituitary problem. I have been treated for the past 12 years first with Parlodel and now with Dostinex. In addition to that I now have to take synthroid for my thyroid. My doctor mentioned that if I did not start to take the synthroid my thyroid would be working so hard and force my pituitary to work so hard that it could raise my prolactin levels. Anyone else dealing with this? Thanks in advance for any responses - Jeanette Jeanette <Jeanette.McGuire_AT_saucony_DOT_com> - Friday, November 5, 1999 at 12:30:41 In 1993, I had surgery to remove a Pituitay tumor. Unfortunately after the surgery my prolactin levels remained high. Since the surgery I have taken Norprolac with fantastic results. I am interested to hear from other people who have also taken Norprolac, to see how this drug worked for them. For me personally I thought I would never be able to get pregnant, and now I have three healthy children. Looking forward to hearing from other readers. Charlene Lewko <clewko_AT_telus_DOT_net> Abbotsford, BC - Friday, November 5, 1999 at 01:40:27 Belle, I tried to email you, but the new email address you supplied doesn't seem to work either. Please contact me or post some additional information on why you are off Dostinex, especially while still lactating. Also,how often will your prolactin levels will be measured? Did you have problems with Dostinex that caused you to stop taking the medication? Thanks! Lori Lori <ToMajestic_AT_aol_DOT_com> Livonia, MI - Thursday, November 4, 1999 at 08:03:36 I learned today that my thyroid levels are low. Is there anyone out there that has prolactinoma on the pit gland and has low thyroid. This is very discouraging to me since I'm trying to stay out of OR. I cannot take Dostinx because it worsens my depression. BJ Williamson <jcwbjw_AT_aye_DOT_net> Georgetown, IN - Tuesday, November 2, 1999 at 17:10:42 I received an e-mail from Lois Marsicek. But there was no message. I would still like to hear from you. Do you have an e-mail address? Thanks, Kristy Bartel Kristy Bartel <bwb_AT_ev1_DOT_net> Spring, Texas - Monday, November 1, 1999 at 21:54:21 Beel, Glad to hear you are feeling great off the Dostinex, but what are your hormone levels doing? Wish you the best , <,> - Monday, November 1, 1999 at 12:10:55 Hi, it's me again. I'm not sure if I know if this is the right e-mail or not. Last time I put jysprks and that's definately wrong. I think jyspks is correct. Anyway, it has been 1 and 1/2 months since I quit taking Dostinex and I feel great! Breast milk is still there, but head has only hurt a little and no more nausea or dry heaving! I keep hoping this is all behind me, but worry I may have only a reprieve. I say a little prayer for you all, everytime I think of all this, which is fairly often. I would like to encourage you all to stand your ground when telling your doctors your symptoms, you aren't losing it, just very sick. If you don't feel comfortable with your doctor or aren't getting respect or answers go somewhere else! Belle Sparks <jyspks> Hayden, Alabama - Sunday, October 31, 1999 at 17:22:46 To Lisa who was concerned about affording mediation (no e-mail address given): Have you tried contacting the manufacturer of the medication (for example, if it is Pharmacia & Upjohn or whatever company is your mediation's main manufacturer)? Sometimes these companies will give you the medication at a reduced rate (or in dire circumstances, even free if extreme need is shown). If you do not know the manufacturer of your medication, ask your pharmacist. Then, get on the phone or the internet and start trying to determine the right department/person with that company who can help. Your doctor could even write a letter to back up your need and financial situation. It is worth a try - I have known it to work for others in similar circumstances. K. Wallace <kwallace_AT_deckerjones_DOT_com> - Thursday, October 28, 1999 at 16:15:02 PLEASE E-MAIL ME INFORMATION ON THE LATTEST RESEARCHES ON PITUITARY TUMORS IM A 35 year old male.SUFFERING VERY SEVERE HEADACHES. THANK YOU WALID WALID ROMAITE <gloriasc_AT_uniweb_DOT_net.co> CALI, - Thursday, October 28, 1999 at 02:11:13 PLEASE E-MAIL ME INFORMATION ON THE LATTEST RESEARCH FOR PITUITARY GLAND TUMOR. THANK YOU WALID ROMAITE <gloriasc_AT_uniweb_DOT_net.co> Cali, - Thursday, October 28, 1999 at 01:20:15 10/26/99 I was diagnosed with a "Pituitary Microadenoma" in 06/97. I was on the recomended maximum doses both Bromocriptine and Parlodel in which case neither worked for me. I then went on an experimental drug called "Norprolac". Trying to get pregnant for 3 yrs. and not having much success with "Norprolac" also started a fertility drug "Clomid". I am now amazingly 6 months pregnant and am \ searching for anyone who has gone through childbirth with an "adenoma" and what their experience was like. Or if interested in talking about this subject, please e-mail me. Great health and spirits to all! Sherry <kobe_AT_telusplanet_DOT_net> Ab. - Tuesday, October 26, 1999 at 23:11:41 I am forty years old and had surgery to remove a benign pituitary tumor. I have acromegaly and am being treated with sandostatin LAR. I was also treated with proton beam radiation. Julie B Racicot <KSRUSMC_AT_aol> North Andover, MA - Tuesday, October 26, 1999 at 20:52:54 I am a 64 1/2 year old man, and, I was diagnoesd in Jan 1998. I have had many days and nights of unrest, and anxienty. My Pituitary Adenoma has no secretion at all. I was told that surgery was the only way to get rid of it. How ever, I don't have insurance now due to the fact that I was placed on leave of absence by my employer, because I could not stay at work. I had dizzy spells and still have them, also, headaches, blurred vision. My total system was "shut down". Thyroid, Pituitary and Adrenal Glands according to the specialists who were treating me.I am not able to drive anymore due to those problems. The Cortisone I was taking made me feel like I was Hallucinating from the inside. Does anyone know what I mean by that? ,,Thanks,, Lee Reuben Lee Douglas <leedoug_AT_gulftel_DOT_com> Foley, Al - Tuesday, October 26, 1999 at 17:23:15 I am a 24 year old female who was diagnosed a few months ago. My prolactin level was over 600 and I felt like I was a basketcase. The things that I have felt and gone through I didn't believe anyone else could understand. As I read the comments on the website, I felt like crying, because now I can talk to others who really understand. I am doing well on paralodel. My prolactin level dropped from 600 to 60 within six weeks of starting these pills. But my tumor cannot be removed, so I will have to continue to take this medicine for the rest of my life. My problem is that it is very expensive and I don't know how I'm going to pay for it. I have no insurance and I work at a minimum wage job. Social Security and SSI say that they can't help me pay. Does anyone know any places that will help? I am desperate, because , as you know without this medicine, I could die. Thanks for your help!!!! Lisa - Tuesday, October 26, 1999 at 15:07:35 Hello. Any information on the herbal medication Chasteberry (Vitex), in treating pituatary disorders, would be appreciated. Sara <sara.prowse_AT_astra.ca.astra_DOT_com> toronto, ont - Monday, October 25, 1999 at 15:15:52 For those who are looking for a Website that has Cushings information and Support here is a great resource... http://world.std_DOT_com/~CSRF/index.html It is the Cushings Support and Reserach Foundation Teresa Sullivan <sully_AT_ismi_DOT_net> Brighton, MI - Sunday, October 24, 1999 at 11:56:15 Hi my name is Steve. I was diagnosed with hypothyroidism about 2 years ago and have been on thyroid medication ever since. My problem is I still suffer from chronic fatigue and was wondering what tests are performed to determine if I have hypopituitarism or Cushings disease. All info would be greatly appreciated. Stephen M. Orr <Sorr404736_AT_aol_DOT_com> Campbell, Ca - Saturday, October 23, 1999 at 19:21:47 Pituitary Disorders Education & Support Group Will meet in Lansing Michigan People with pituitary disorders, their relatives, friends, and health care professionals are invited to attend. Learn about pituitary disorders and treatments. Meet other patients and share coping skills. Meeting Date: November 6, 1999. 10:30 am - 1:00 pm Coffee and Refreshments will be served upon arrival. Guest speaker: Ved Gossain, MD. Professor of Medicine, Chief, Division of Endocrinology and Metabolism, College of Human Medicine MSU Topic: “Growth Hormone Replacement” Who needs it? Many patients do not know why diagnosing GHD (Growth Hormone Deficiency) is important. Dr Gossian will discuss why it is important, proper testing and treatment. Location: Sparrow Hospital. 1215 E. Michigan Avenue, Lansing Michigan. The meeting will take place in the auditorium. For additional directions to Sparrow Hospital by phone call theVoice pilot: (517) 483-2700 extension 4895 Visit Website http://community.mlive_DOT_com/cc/pituitarytumor Please Contact Teresa Sullivan (810) 227-5615 or Email: Sully_AT_ismi_DOT_net (Please RSVP by October 30th) Teresa Sullivan <sully_AT_ismi_DOT_net> Brighton, MI - Saturday, October 23, 1999 at 17:36:19 excuse spelling;but,like to get information on hepetitus c and diabeties angel <mmktaylor_AT_vallnet_DOT_com> fayetteville, tn - Saturday, October 23, 1999 at 16:48:51 Hi, all. My sister was recently diagnosed to have a pituitary microadenoma. She still has to do more tests, but I am concerned about her. I´d like to ask anyone who has gone through the same problem to share their experiences. We have a lot of doubts about the consequences and options of treatments. Thank you very much to all. Marcia Marcia dos Santos <marcia_dos_santos_AT_usa_DOT_net> Sao Paulo, SP - Thursday, October 21, 1999 at 03:43:24 Sometime in the late seventies, I was diagnosed with a pituitary adenoma. My prolactin levels reached 300+. Currently, my prolactin has exceeded the 500+ level. My physician ordered an MRI to determine growth and location of the adneoma. I am interested in any information that will help me better understand this situation. Thank You. Connie Gerow <abraxas_AT_slic_DOT_com> Fort Covington,, NY - Monday, October 18, 1999 at 21:35:01 Dear shy, I am also male with prolactinoma. I did not have breast milk, but my breasts were so enlarged and heavy that I was sore from breasts rubbing against chest. The doctors were very surprised that I did not have any discharge from breasts because they were so large. I also gained weight. In addition to Dostinex (cabergoline) I take an anti-depressant and wear testosterone patches because high PRL causes low tosterone, low sex drive, etc. arnold <arnoldk_AT_att_DOT_net> - Saturday, October 16, 1999 at 21:13:28 Hello everyone! Does anyone have Addisons disease and a pituitary tumor? If so I would appreciate your experiences. Thanks. Melissa <lazymae34_AT_hotmail_DOT_com> Corpus Christi, TX - Saturday, October 16, 1999 at 19:03:19 I have cushings disease...Have had 2 transphenoidal surgeries to completely remove pituitary gland. I am looking for information and a support group for this. I am able to find alot of information on pituitary tumors but the treatments are quite different...Any help would be greatly appreciated Judy <Takitezy99_AT_aol_DOT_com> Houston, Tx - Saturday, October 16, 1999 at 00:32:14 Hi all, Just wondering if anyone has had symptoms (such as headaches, no period, etc) from a nonfunctioning microadenoma (7mm). I have had wonderful response and info to my other posts, but is seems most of you have prolactin secreting tumors. Just wonder if there are any others that suffer from reduced hormonal function-possibly due to microadenoma- such as hypothyroid, low adrenal function, low blood sugar, low blood pressure- AND headaches. One more thing, my endocrinologist put me on parlodel yesterday- an experiment to see if it might help my headaches even though my prolactin is not elevated. I took half a pill last night and was so sick to my stomache. Does this get better???? Thanks for all and any information. Tory <tory0202_AT_aol_DOT_com> AUSTIN, Tx - Thursday, October 14, 1999 at 06:45:00 Hi all, Just wondering if anyone has had symptoms (such as headaches, no period, etc) from a nonfunctioning microadenoma (7mm). I have had wonderful response and info to my other posts, but is seems most of you have prolactin secreting tumors. Just wonder if there are any others that suffer from reduced hormonal function-possibly due to microadenoma- such as hypothyroid, low adrenal function, low blood sugar, low blood pressure- AND headaches. One more thing, my endocrinologist put me on parlodel yesterday- an experiment to see if it might help my headaches even though my prolactin is not elevated. I took half a pill last night and was so sick to my stomache. Does this get better???? Thanks for all and any information. Tory <tory0202_AT_aol_DOT_com> AUSTIN, Tx - Thursday, October 14, 1999 at 06:44:01 I was diagnosed 5/10/99 with a micro-adenoma, based on my prolactin level (went from 9 to 23.7 in 3 1/2 week), visual problems (seeing black spots, squiggly lines, dust balls and little white laser flashes), temperature (I run 99 - 100 off and on), vomiting and nausea, galacttorhea, severe headaches, muscle weakness, swelling of feet and hands (now face and eyelids have swollen). I had a normal MRI. I was put on Dostinex. I took it for four months, until I had a severe reaction. I am not sure if facial swelling and eyelids swelling are from medication or micro. Also have been told trembling of hands, blood pressure problem due to medication. I did not care for the endro- cronologist there so I went to see another. Another normal MRI and level down to 1 to weeks after coming off of Dostinex. She says I don't have micro, just prolactin problem. At no point have any of my symptoms gotten better (milk still there, still running fever,etc.). Eye doctor says I have spots because of damage to the vitreous humor. I have a feeling this is like the twilight zone. I now feel very worried about not having a diagnoses and still having all the problems. One doctor told me my level was very high and the other said a tumour would not be considered until my level was 200. Yet, I see lots of other people with tumours who have levels of 34, etc. Does anyone know of a test to find a small tumour and short of losing my side vision or having an MRI show something is there any way to get an accurate diagnosis. I have been checked for diabetes three times. I have been told maybe I'm allergic (food, cats, you name it). I have been asked if I have had a hit to the head (eye doctor asked this one). Told I will have to learn to live with the spots as they are permanent. I have been asked repeatedly about birth control pills, even though I've had a tubal (I'm not pregnant). I have been asked about drugs, I even offered blood to put that one in the back drawer (was told it wasn't necessary)! I finally came up with an answer to the question about exactly how much breast manipulation is there? The same as there has been for the last 13 years I've been married! I have not even had the basic GH, cortisol, etc. run. And only once eight months ago, when this started did I have my LH, FSH run. I was told my TSH and ACTH were a little low, but then found out first doctor did not even run ACTH. I don't see how a reading can be accurate two weeks after coming off of Dostinex and also wonder about MRI accuracy. Doctors like to tell us how accurate the MRI's are, yet my father in law died after being told he only had one encapsulated tumor, turns out he had them everywhere the doctors looked (satellite tumors). I am very disenchanted with the whole process. Anyone that has any information that would shed light on this, I would really appreciate hearing from. I really hate the thought of going around half sick for years, before someone finally figuring this out. Belle Sparks <Jy Sprks> Hayden, Al - Wednesday, October 13, 1999 at 09:58:31 9 years ago i was diagnosed with a large tumor on my pituatory gland. i d i refused surgery and was put on a drug called parlade which i took for 5 years. my prolactin cout at that time was 14,000. after 5 years on the parldel and 3 cat scans my tumor had shrunk and the count was 1100. i built up an immunity ot the parledol and was put on permax. my count now is 16 and the tumor is now flat. gone. but the tumor destroyed the sight in my left eye and lowered the vision in my right eye. my last cat scan of two months ago shows no tumor but i am still legally blind. did the drugs cure the tumor . if so how is it possible. i still take one permax a day. my prolactin count is still 16. how is it possible.can the sight in my left eye ever be restored or is the optic nerve gone for ever. irv belfer <plato_AT_iop_DOT_com> matawan, nj - Tuesday, October 12, 1999 at 17:10:30 Hi I am a 31 year old woman with a dual pituatary tumour (acromagely (growth hormone) and prolactinoma) that was 3x3 cm when diagnosed last year. I was on Bromocriptine for a year which shrank the tumour to 2X2 cm. I had transphenoidal surgery two weeks ago to remove the rest of the tumour and just want to share my experience with others who might be dealing with the same thing. The surgery is realtively painless and quite easy. Mainly the first two days are uncomfortable because your nose is packed. I was home in 4 days and really the only problem has been fatigue. Oh and also my sodium levels went low and I felt nauseau and started vomitting for a day which was quickly corrected by the docs. I won't know for a couple more weeks where my levels are at or whether we got the whole tumour. If anyone is considering surgery feel free to email me if you have any questions. I know how scary it can be when you think you're the only person going through this. Lisa <tlhamer_AT_bc.sympatico.ca> Vancouver, - Tuesday, October 12, 1999 at 00:40:28 Ive had cushings for several years I was put into a mental inst.and only by accident they found the tumor pituary gland.I was very close to being left their as a disturbed person.I had the turmor removed but I have some other things happening since,blur vision,and perfial vision so bad I cannot drive and just recently cut my figure off with skill saw Inever seen it.I feel that this info you are offering is great It's to bad here in nfld. they are not getting this information to their patients.Will respond to any questions you might have.Terry Anderson terrya_AT_nfld_DOT_com foxtrap, nfld - Monday, October 11, 1999 at 05:33:51 Has anyone on here ever heard of, or is on Dopergin, or lisuride (lysuride). I have a prolactinoma, and was being treated with Dostinex, but am now on dopergin since I just moved to ca and insurance hasn't kicked in yet. Feel free to e-mail me. Mary mary <bluerose20_m_AT_yahoo_DOT_com> ca - Sunday, October 10, 1999 at 20:39:31 Hi, My drs think I have a prolactinooma. Do any other guys produce breast milk like substance or am I the only freak of nature? Yes, I am full male! shy - Sunday, October 10, 1999 at 20:12:33 Hello everyone, When originally diagnosed with my 1.5cm macroprolactinoma in June this year my prolactin level was 20,000 (twenty thousand). After a few months which brings me up to date, my level is now 400. I can't help but notice these levels are considerably higher than many I have read about on this site. Can it be that we use a different scale in the UK? I am a 29 year old male and have been on 75ug of Norprolac (Quinogolide)since being diagnosed and have had only very slight headaches. My Consultant is very pleased with my progress. My level is to be checked again next month and I'm to be scanned at the end of the year. I am more than happy to correspond with anyone. Good Luck to everyone. JOHN <john_AT_arnshawduncrievie.freeserve.co.uk> PERTH, - Sunday, October 10, 1999 at 17:48:36 I finally figuered out what my e-mail address is so now if anyone has any quiestions or responses to my quiestions they can just e-mail me. I am afraid knowing that I face the possibility of going through all the same stuff again(prolactin levels are elevated) If anyone else had prolactinoma reacurrence I would love hearing from you thanks. Good luck to everyone out there Crystal Harrison <charrison_AT_pc.pein.org> Dauphin, MB - Thursday, October 7, 1999 at 10:25:17 Pituitary freinds, My name is Jennie and here is my experience. In High School my freind always teased me because of the amount of water I drank. It was never got better. In a day a could put down a couple galons of water. this was going on for 4 years and doctors did not know what it was. Then I stopped my having period ans the doctors wanted to put me on birth control. Finaly we found a doctor who took a blood test and found that my prolactin level was high. The doctor thrn sent me to an endrocronologist who told me that #1 I had a brain tumor, #2 I will never have kids naturaly, And #3 I would have to have surgery through my uper lip. Well I had the surgery in May of 97 when I was 19 years old. I was fine after until almost a year later I had to have more of it removed and this time they were going through my skull. In May of 98 I had the second one and found out it was cancer. I then started radiation. At the start of radiation I weighed 140 and around the end weighed 116. The cause was because the steriod I was on was causind me to vomit for 6 weeks straight. I am now on Hydrocortizone, synthroid, birthcontrol, and zanex because of the panic attacks I get in my dreams. In the last 3 weeks I have been in the hospital for 11 day for nausea. Iknow Gods grace will fall on me soon.If anybody understands e-mail me and we will talk. E-mail comokid_AT_pe_DOT_net Jennie Jennie B <comokid_AT_pe_DOT_net> - Wednesday, October 6, 1999 at 20:01:32 In 1980 I had a diagnosis of a pituitary adenoma. Treated with Parlodel, got pregnant in 1981. In 1982 I had a trasphenoidal removal of the adenoma. My second child was born in 1983. I continued using Parlodel until last month that my OBG put me in Dostinex. I want to know more about side effects. Sany Candelario <Sany_AT_rumnlib.uprm.edu> Mayaguez, PR - Wednesday, October 6, 1999 at 13:33:25 Has anyone out there been diagnosed with an alpha subunit pituitary tumor? My understanding is that it is pretty rare. I posted this about a year ago and got no responses. Maybe there's someone out there now. My tumor is a mixed type (they think) - both alpha subunit and prolactinoma. It's kind of scary to have something that so little is known about. I'd love to hear from someone! Best of luck to you all. Michelle <rustic_AT_dnvr.uswest_DOT_net> Evergreen, CO - Tuesday, October 5, 1999 at 12:45:54 DIANE What do you mean by a free T4. I have never heard of that before. Thank-you very much for answereing me the first time i appreciate it. Crystal Harrison Dauphin, MB - Tuesday, October 5, 1999 at 10:53:06 I need to know what type symptons someone is having IF they could be having a nervous breakdown. She is 67 years old and has had depression for a number of years but takes medication for depression. She is currently in a facility that should help her with her problems, she told me she "just felt like she was going crazy". Please help, she is blaming me her daughter for her problem. beverly feminella <hermetic.rush_AT_wes.army.mil> vicksburg, ms - Monday, October 4, 1999 at 17:36:37 I HAD SURGERY ON AUGUST 31ST FOR A LARGE PITUITARY TUMOR AND AM NOW HAVING 28 DAYS OF RADIATION. IF ANYONE ELSE OUT THERE HAS HAD THE RADIATION, WHAT SIDE EFFECTS HAVE YOU HAD? IT REALLY HAS ZAPPED ME. PATTI POGUE <PPOGUE_AT_POTAWATOMI.ORG> ADA, OK - Monday, October 4, 1999 at 16:14:29 Crystal and anyone else that has their thyroid hormone checked as a result of their pituitary tumor. TSH is only going to show if your thyroid gland is working. Free T4 will show if the pituitary is sending the message to the thyroid gland to release the hormone. Diane <parishrd_AT_netway_DOT_com> Boston, MA - Monday, October 4, 1999 at 07:14:54 my aunt just found out that she has cancer in her pitutiary glan what can she do. natalie blackman <popepinky_AT_aol_DOT_com> irvington , nj - Saturday, October 2, 1999 at 10:42:37 I JUST WANTED TO WRITE BECAUSE I AM SO AWESTRUCK RIGHT NOW. I AM A 23YR OLD FEMALE CURRENTLY IN THE U.S. NAVY I HAVE BEEN IN SINCE AUG93, I GOT MARRIED IN JUL94 AND IN SEP94, I STARTED GETTING HEADACHES BLURRED VISION, NASUEA, MOODINESS, CRAVINGS? MEMORY LOSS, AND ABSENCE OF MONTHLY CYCLE, I THOUGHT THAT I MIGHT BE PREGNANT AND STARTED VISITING MY LOCAL NAVAL HOSPITAL EVERY MONTH FOR PG TESTS. I BEGAN LACTATING WHICH RAISED MY SUSPICION OF BEING PREGNANT SO I FREQUENTED THE NAVHOSP/AND BRANCH MEDICAL CLINICS WITH QUESTIONS WHERE UPON THEY TOLD ME IT WAS STRESS/DEPRESSION AFTER A FEW MOMNTHS THEY BEGAN CALLING ME THE MALINGERER AND THE FAKE. I CRIED ALOT AND MY MOTHER ASKED ME TO COME HOME TO SEE OUR FAMILY GYNECOLOGIST. I WENT IN OCT95 GAVE HIM MY SYMPTOMS AND HE IMMEDIATELY ASKED TO DO LABWORK MY PROLACTIN LEVEL WAS 97 AND SO HE CONTACTED THE NAVHOSP AND REQUESTED AN MRI THEY TURNED HIM DOWN TELLING HIM I DIDN'T REALLY HAVE A PROBLEM THAT THEY KNEW ME AS A TROUBLEMAKER SOMEONE ALWAYS THERE IN THIER ER WITH CRAZY THOUGHTS I EVEN WAS HUTING SO BAD ONE NIGHT THEY TRIED TO GIVE ME A SHOT THEY WOULD NOT TELL ME WHAT IT WAS SO FUSTRATED I REFUSED AND THEY MADE ME SIGN A STATEMENT SAYING IF I LEFT THE HOSPITAL THEY WERE NOT RESPONSIBLE FOR ME AND IF I DIED OH WELL, THE NEXT WEEK FOR HEADACHES THEY SENT ME TO AN ANESTHESIOLOGIST WHO SAID HE COULD CURE ME HE DID A PROCEDURE CALLED A NERVE BLOCK IN THE BASE OF MY SKULL WHICH MADE ME SLEEP FOR A FEW HOURS ONLY TO WAKE WITH THE SAME MIGRAINE. MY GYNECOLOGIST THEN CONTACTED MADIGAN ARMY MEDCEN WHERE I WAS ASSIGNED TO AN ENDOCRINOLOGIST, SHE ORDERED ME AN MRI AND THEN TOLD ME IT WAS ONLY A 6MM MICROADENOMA I WAS PUT ON BROMOCRIPTIMINE WHICH MADE THINGS SO MUCH WORSE I WAS EVEN MORE MOODY, NASEAUS, DIZZY, TEARY, HAVING HOT/COLD FLASHES, I TRIED TO TOLERATE IT STOPPING IN HERE AND THERE UNTIL NOV98 MY ENDOCRINOLOGIST RETIRED AND THEY BROUGHT IN A NEW GUY- I TOLD HIM BROMO WAS INTOLERABLE TO ME SO HE SAID LETS START ALL OVER, I HAVE HEARD ABOUT A FDA APPROVED DRUG CALLED CABERGOLINE. BEFORE I LEFT THE OFFICE I ASKED HIM ABOUT MY SYMPTOMS SOMETHING I WAS TO SCARED TO DISCUSS WITH MY PRIOR ENDO AND HE SAID HE DIDN'T FEEL THEY WERE RELATED TO MY TUMOR, I HONESTLY FELT AS IF I WAS GOING CRAZY UNTIL MOMENTS AGO- IT IS NOW 01OCT99 AND I HAVE BEEN ON CABERGOLINE SINCE DEC98 I HAD CYCLED DEC/JAN WITH THIS THEN NOTHING- MY LEVELS ARE CURRNETLY 67 BUT I STILL GET HEADACHES AND NASEUAS . BEING MARRIED I DESIRE CHILDREN AND WAS ESPECIALLY GLAD TO SEE THE ONE LADY WHO HAS HAD 3. I BELIEVE IN GOD AND THAT HE CAN HEAL ME AND AFTER READING THE GUESTLOG MY PRAYERS ARE WITH YOU ALL. I AM EXCITED TO KNOW THAT I AM NOT ALONE. I AM CURRENTLY ON A SHIP AND RECENTLY HURT MY BACK I AM STRESSED BECAUSE ONCE AGAIN THEY CLAIM NOTHING IS WRONG WITH ME I AM CONCERNED/FUSTRATED KNOWING THAT IT TOOK 3 YRS AND SOMEONE ELSE TO FIND MY GROWTH THAT WHAT WILL BE THE OUTCOME OF THIS. THE ADDED STRESS MAKES MY ABSOLUTELY PAINFUL MIGRAINES SEEM TO LAST FOR DAYS. EVERYONE SAYS JUST DEAL WITH IT STILL NOT BELIEVING IN MY SYMPTOMS. I AM VERY GLAD THAT I CROSSED THIS SITE, I WAS SERIOUSLY BEGINNING TO DOUBT MYSELF WONDERING "MAYBE I AM CRAZY"- I AM GRATEFUL THAT AT LEAST MY HUSBAND HAS BEEN PATIENT HE BELIEVES ME. I CANNOT OFFER ANY ADVICE BUT AM SEEKING OTHER PEOPLE WITH MY CONDITION TO SHARE UPS AND DOWNS WITH PLEASE FEEL FREE TO E-MAIL ME I AM LOOKING FORWARD TO HEARING FROM YOU!!! TONYA KLAUDA <KLAUDA_AT_TSCNET_DOT_com> BREMERTON, WA - Saturday, October 2, 1999 at 00:09:52 Hi! I am a concerned mother of a pituitary patient. My son Joe has giantism and acromegaly. He was diagnosed in 1993, had 2 transphenodial surgeries, gamma knife. His last growth hormone test came back at 54. His doctors abandoned him last month right before he was going to have a parathyroidectomy for hypercalcemia. I am looking for others who are "giants". I hate using that term but for lack of a better one? He is nearly 7' now. He is 23 yrs old. Has a bone age of 13yrs old. He is a wonderful son and I cannot find adequate help for him. His condition continues to get worse. Finances are stretched past the limit. He needs qualified help and more importantly he could use conversation from someone else who is similarly affected. I have done quite a bit of research. Looking for any alternative to sandostatin as he does not tolerate that drug at all. What do you do when your doctors abandon you? I don't have a pc that will run on the web a real dinosaur, but will check in my local library and or kinkos for any replies. Thank-You folks. I have considered up and moving to Massachuetts to get him close to a facility that would be able to treat him correctly. The medicade HMO he was with said that I could be brought up on charges of medicade fraud if I moved for that reason just what is a mother to do? He has at my last count 23 secondary diseases, conditions or complaints secondary to the pit tumor. Most of the secondary conditions are serious. He has chronic low and high blood values on at least 12 lab tests each time they are tested. Can I be charged with fraud if I move to a state that can treat this disorder? I need to ask a lawyer that. Are there other patients and or family being mistreated in this fashion? I love my son and his conditions are getting worse. I would love to hear from family members on how to best cope with this? Also, How many pit tumor patients also were born with a neuroblastoma tumor. Joe was born with a neuroblastoma tumor the size of a large orange. I have learned that recently neuroblastomas are now thought to be cause related to the adrenal gland. If so, I suspect this glandular problem has been life long. Any way to all of you my prayers go out to you all. God Bless. I pray for all of you to have a total healing. Sincerly, Barb Moore P.S. I have done considerable research on pit tumors. Call if you would like (303)937-3469. Barb Moore - Friday, October 1, 1999 at 16:59:00 For anyone out there with a high prolactin level and trying to get pregnant with no success, I just want to let you know that I suffered from a high prolactin level, and after seeing an endo who perscribed Norprolac for me in 1994, I have had three healthy children, the most recent on 99-August 10th. If anyone has a questions for me please feel free to e-mail me. charlene charlene lewko <clewko_AT_bc.sympatico.ca> abbotsford, bc - Thursday, September 30, 1999 at 18:47:56 HI, I AM A POSSIBLE UNDIAGNOSED CUSHINGS PATIENT.I WONDERED IF ANYONE KNEW IF I WAS POSSIBLE TO HAVE CUSHINGS FOR MANY YEARS BEFORE IT SHOWS IN LABS, AND IS ACTUALLY FOUND. PLEASE RESPOND. THANK-YOU, LESLIE LESLIE <LEELOU_AT_AOL_DOT_com> ASTOR, FL - Thursday, September 30, 1999 at 13:26:14 Hi everyone. I've been diagnosed with MEN-1 (Multiple Endocrine Neoplasia), a rare disorder, involving tumors of the Pituitary, Pancreas and Parathyroids. So far, I've taken care of the parathyroids and next up is transphenoidal surgery for the Pituitary. My doctors have talked about taking care of the pancreas in the same hospitalization but I think it's going to be too much. For me, Prolactin and Growth hormone levels are very high. I have no symptoms (headache / vision problems) but I often do feel very tired and down alot. I would like to hear any advice and/or positive experiences about surgery. I'm scheduled for Oct 5. Also, if there are any MEN-1 patients or families, I'd like to hear you too. Bob <rgrnnn_AT_yahoo_DOT_com> Chicago, IL - Wednesday, September 29, 1999 at 23:05:44 hi i was diagnosed with hyperprolatemia and adenoma in 1993. at that time i thought that i was the only person in the world with this "rare" disease. during that time i experienced massive headaches. i began to take the parlodel and it made me feel crazy. at that time i didn't realize how important it was for me to continue to take the parlodel, but i began to read up on the medication(since none of the doctors really had answers) and decided to stop taking it due to the side effects. i was fine(at least i thought so) until i became pregnant in 1997. after the birth of my daughter in april 1998. i didnt have any mensus whatsoever(even now),the headaches were beginning and i was gaining weight rapidly. i began to question it with my gyn and he did test my prolactin level. he never told me what it was but he did suggest taking the parlodel again. i still never took this seriously until now. as of today i have not had any mensus and now weigh about 205lbs(normal is 140lbs). idecided to see another physician who said my level is 157( normal prolactin level is about 18). see really suggested that i began taking the parlodel. now once again i have that crazy feeling. idecided to surf the net and realized that i am not the only person suffering like this and that i need to get used to taking these pills possibly for the rest of my life. i do appreciate all of the comments that have been inserted into this site, they are really helpful. but i do have one question since i am very self concious about my weight. IS THERE ANY POSSIBLITY THAT ONCE I HAVE BEEN TAKING THE MEDS FOR ANY AMOUNT OF TIME THAT I WILL LOSE WEIGHT(I CAN'T TAKE IT!!!!)AND WILL THE SIDE EFFECT OF NAUSEA AND BLURRY VISION EVER STOP???? avian regan <SHOOP07_AT_AOL_DOT_com> irvington, nj - Wednesday, September 29, 1999 at 18:25:36 The other hormone that was recently tested was the TSH which you probably know is the thyroid hormone. I have however had all the hormones tested in a triple test which was after surgery all tested normal. The only one with an increase is the prolactin. Why do you ask? Is there somthing else I should Know please get back to me. Thanks for your concearn. Crystal Harrison Dauphin, MB - Tuesday, September 28, 1999 at 09:42:05 Hello. I would like to know if anyone can recommend a good endocrinologist in the Northern California area. I am scheduled to see one in a few weeks, but I am not sure of his experience or credentials. I was diagnosed with a pituitary tumor in June of 1996, and it has since grown to 6mm. My current Prolactin levels are around 95. I currently take no meds, but have symptoms such as headaches, tunnel vision, lactation, memory loss, memory loss (just kidding), weight gain, and moodiness. My neurosurgeon is not recommending surgery at this time, for which I am extremely grateful. I hope the meds, that I am assuming that I will be prescribed, will help my situation. Good luck to everyone who has to suffer with this condition. I wish you all a speedy recovery. Denise Vargas <denise59_AT_gateway_DOT_net> Sacramento, CA - Tuesday, September 28, 1999 at 01:48:30 I am so glad that I found this site...I am 18 years old, and was diagnosed with a prolactin secreting pituatary tumor when I was 15. I was seen by Dr. Walter Hall (University of Minnesota, Twin Cities) and placed on Parlodel, I could not stand the side effects. When I was diagnosed, MRI showed that my tumor was so large, my doctors were surprised that I was not having vision problems. Due to horrible headaches, I contacted my doctor. I had 2nd MRI in July 99. It showed that not only had my tumor grown, but some sort of unidentifiable mass had formed within the tumor. They aren't sure if it is a pocket of blood or a tumor within the tumor. My prolactin levels were taken and my endocrinologist told me she had never seen prolactin levels this high. I was told a normal woman's are around 20, and mine are in the 900's. I am very scared, and now my doctors are pushing a surgery to have my tumor removed. I have just started college, and I may have to have the surgery around Christmas. I am hoping to hear from anyone that has had the surgery. I need to know the recovery time, and what difficulties you may have had.Thank you for listening and my prayers are with you all. Abby Bauer <turdl8_AT_aol_DOT_com> Minneapolis, MN - Monday, September 27, 1999 at 23:17:45 crsytal what other hormones have they tested from your pituitary gland? s - Monday, September 27, 1999 at 15:41:34 Hi it's me again. I got the hormone counts back from my bloodtests and the prolactin is high(49). Normal being between 13 and 27 for this particular test. I would like to know has anyone out there had a rise in their prolactin level 3 years and more after surgery? Also are there any other causes to raise prolactin level other than a pit tumour? (Iam not on any meds and my thyroid is normal) Also with the prolactin only being moderately high could it cause tiredness? Please anyone with any information contact me in this guestbook ATTN:Crystal As I do not have an E-mail address. Thank-you and goodluck to everyone out there. Crystal Harrison Dauphin, MB - Monday, September 27, 1999 at 09:33:18 Well, I met with Dr. Mickey at U.T. Southwest Medical Center and agree with all that have said he is not only a good doctor, but also a good person. I was told my my first doctor that my entire pituitary was enlarged and was not distinguishable from the tumor. Well Dr. Mickey was able to show me the tumor was distinguishable from my pituitary. We were able to see the tumor and the pituitary on the same MRI. I have schedule my surgery for Oct. 5th. Would appreciate all of your prayers for me and the doctors and nurses. I really appreciate all the support. If there is anyone I can help please let me know. Don Simmons <Ayudar1_AT_AOL_DOT_com> Plano, TX - Saturday, September 25, 1999 at 22:15:54 In 1982 I had a microsurgery removal of pituitary ademona. Treated with Parlodel since 1981 until last month I start using Dostinex. I Will like to know more about side effects and about hyperprolactinemia and gain of weight.tar Sany Candelario <Sany_AT_rumlib.uprm.edu> Mayaguez, PR - Friday, September 24, 1999 at 11:29:18 Hi, its me again. My e-mail was incorrect. I have a microprolactinoma (7mm), cant stand parlodel side effects, fell very tired and dizzy most of the time, have gained weight, mood swings and depression , and hirsutism! there is a lot of hair growing in my face! I would like to know if someone with prolactinomas experienced hirsutism. And please, if you fell the same symptoms as I, send me messages, because the doctors here simply DONT BELIEVE ME. They say that is only in my head, that nothing of this is related with the adenoma! My endo says that I must look for pschycotherapy, she thinks I am hipocondriac! Any information about prolactinomas would be very useful, seems that doctors here in Brazil dont know much about this. I am sick of doctors, but I need help.Please e-mail me! ( now it is correct). Thank you very much.Try to keep your heads up . Thanks Liliane <lilianea_AT_voyager_DOT_com.br> camaqua, RS - Friday, September 24, 1999 at 02:06:27 52 year old.. had surgery in 1978.. Pitutary tumor was invasive.. carotid artery, transverse sinuses, sphenoid sinuses involved. Have been taking 10mgs. of Parlodel daily since surgery to control residual cells. SInce surgery, I have been diagnosed with the following endocrine-related diseases:(1). Stasis Dermatitis. a skin discoloration of the lower legs (2) Atrial Fibrillation, a heart condition that is endocrine related, ususally the thyroid (3). Fibromyalgia, all trigger points (4) ,Most recently my GYN diagnosed me with Vulva Vestibulitis, a new disease, related to fibromyalgia, so new it has not been entered into the medical books as yet.. it is associated with pain in the vagina. SO, in short, just because you have the necessary surgery... you are always an endocrine patient. Even both of my parents were diagnosed last year with enodcirne diseases it is to be considered when thinking about having kids I know of several families where all of the children have some form of endocrine disease.. and also the parents. take care Carla <carlad_AT_trespass_DOT_net> Alexandria, VA - Thursday, September 23, 1999 at 23:58:28 This is in response to Diana....Diana, there actually is a lot of information on pit tumors via various websites.You can access my webpage,and go to the page called "Links" and it will lead you to a lot of resources as well as a page called "Experience" that will introduce you to many people with pit tumors that welcome your questions. Access the page at http://members.aol_DOT_com/tomajestic An easy way to access a lot of information is to simply type in "Pituitary" into your browser! Take care, Lori Lori <ToMajestic_AT_aol_DOT_com> Livonia, MI - Thursday, September 23, 1999 at 21:38:00 Have any one, ever had a Sub-Arachnoid Hemorrage. Please let me know. If you ever Experienced this. I was having very bad headaches, and eight years ago I was taked to the hospital . Doctors diagnosted Cerebral Sub-Arachnoid Hemorrage. Please send me news. Thanks, Rita Rita <Rita_AT_baby_direct_DOT_com> Harahan, LA - Wednesday, September 22, 1999 at 17:32:20 I have been sick for 8 years now, I'm 35 years old and my symptoms began when my youngest daughter was 4 years old. I was very ill for at least 2 years before the tumor was found and still get very angry at the way the doctors ignored my symptoms, blaming theml on depression. My symptoms included severe nausea, fatigue, head- aches, acne, and of course lactating. After 2 years I finally convinced a Dr. to test my prolactin level, (I read an article in a popular magazine) and my prolactin level 64, he ordered an MRI and so the treatments began, I have been on Parledel for 6 years now, I had a difficult time with side effects, so it was suggested that I take the pill vaginally. After a few months a started taking my pills orally at night. I still have problems with hormone fluctuations, but for the most part I am doing well. I still experience some fatigue, but nothing as severe as before medication. I have recieved an MRI every years since and continue to have positive results. At one time the dr. tried to discontinue medication stating the not all patients with pituitary tumors need medication, my prolactin levels raised to 364, not good, I am very fortunate not to need surgery at this time. I was suprised to find very little information on this subject and would appreciate any references. Diana Lackey <Dianadora_AT_aol_DOT_com> Fairchild AFB, WA - Wednesday, September 22, 1999 at 15:46:37 Hi there. I was just wondering if anyone has ever had any problems with their sinuses draining improperly after surgery on their pituitary? I have a prolactinoma that was partially removed in 1995. Since then, it has almost completely grown back, and is now pressing into my sinus cavity. I have noticed that, ever since the surgery (which was done through my sinuses), when I get a cold, the mucous does not drain through my nose as well as it did before. I always have a lot of congestion in my head, and have recently been getting ear infections as the mucous has no where to drain. Any advice? Also, I was wondering if any women out there were able to get pregnant if their periods were very sparse even while taking Parlodel. I have only had one period in the last year! I am now up to 7.5 mg. of Parlodel per day and still no periods. I am unable to get Dostinex in Canada and I am worried about not being able to conceive, as my husband and I would like to start a family soon. I am 28. Also, is anyone aware of any long term effects of Parlodel on a fetus? My endo says that even if I were able to conceive, I would probably be encouraged to take Parlodel throughout my pregnancy as my tumour is fairly large. Thank you in advance for any help you can give me!! Alison <baileyau_AT_autobahn.mb.ca> Winnipeg, MB - Wednesday, September 22, 1999 at 12:28:00 I am a 37 year old female recently diagnosed with a pituitary adenoma (1-1/2C x2-1/2c.) Haven't been to a neurosurgeon yet...I have suffered symptoms for several years, but recently had an MRI to confirm. The tumor is apparently secreting prolactin. I am interested in hearing from someone who has been in a similar situation. What questions do I need to ask? Shari <shariharr_AT_aol_DOT_com> - Monday, September 20, 1999 at 00:05:56 Hi. I have a microprolactinoma (7mm), cannot stand parlodel side effects, fell very tired and dizzy.Doctors keep saying my symptoms are "only in my head", and I am getting really upset. Here in Brazil there is not information at all about this disease. I woul like to have more information on treatment, and if it is normal to feel so strange all the time.And if someone experienced hirsutism and high levels of androstenedione along with the prolactinoma. Any kind of information would be helpfull. Excuse my spell. Thank you all. liliane andre <liliane_AT_voyager_DOT_com.br> camaqua, RS - Sunday, September 19, 1999 at 03:32:42 Hi, I have a prolactin count of 66, and a pituitary adenoma less than 1cm.OB/GYN put me on parlodel, and I fight the nausea with gravol and zantac. Does any one else with this problem use gravol to prevent nausea and vomiting? Please answer as I need to know if it harmful, as it helps me greatly. It has been 3 weeks and my count will be tested in 6 weeks...help! I am in Jamaica and therefore at a distinct disadvantage where 1st world medecine is concerned..so if anyone could enlighten me re the gravol and lowering of prolactin levels i would appreciate it. I am 44 and never had kids. Denise <misty_AT_kasnet_DOT_com> Kingston, - Sunday, September 19, 1999 at 01:46:34 Sorry, Just reread my post and realized I typed headaches can be related to tumor. Wrong, they said CANNOT BE RELATED DUE TO TUMOR BEING SMALL. Victoria <tory0202_AT_aol_DOT_com> Austin, Tx - Sunday, September 19, 1999 at 01:32:44 I posted about a month ago with questions about pituitary tumors and headaches. My microadenoma is only 7mm and I have been told an endocrinologist and neurologist that my weely horendous headaches can be related to tumor due to size. In the past 2 weeks, I have seen an allergist and a sinus specialist (my headaches feel like an ice pick in the top center of my head and radiate to my eyes and face). I have had numerous tests done only to be told my headaches are not allergy or sinus related. I do have typical migraines with aura,...but these are a world different. The nuerologist is not interested in the cause of the headaches, and I have tried a million different drugs with no relief. Does anyone have similar headaches with their microadenoma? I feel that it has to be realated, but I cannot get anyone to listen to me. In fact, the endocrinologist has told me that since my tumor has not grown in a year, that I never never need an MRI again. I am not comfortable with this. Please share any similar stories of headaches related to micradenomas. Thanks so much,tory Victoria <tory0202_AT_aol_DOT_com> Austin, Tx - Sunday, September 19, 1999 at 01:29:13 In1984 I received 26 radiation treatments for a pituitary tumor that had me ill for 8 years. It took that long to diagnose. Maybe because I kept putting myself into psychiatric wards because I thought I was mentally ill. The tumpr caused a condition called acromegaly which made me look awful as well as feel awful. I have been well since 1986 and now my doctor tells me that my prolactin level is elevated which could mean a return of the tumor. Tanya Cooper <SECOOP1 _AT_aol_DOT_com> Lancaster, PA - Friday, September 17, 1999 at 23:40:37 I was diagnosed with a prolactinoma and had surgery at the Mayo Clinic in 1981-82. My prolactin levels went back up a year after the surgery and I was told that the tumor was back or there was residual tumor. I have lived on bromocriptine and dostinex on and off all these years (mostly off. Besides the usual symptoms I have had ovarion tumors (the left one was removed a couple of years ago, cronic back pain for the past year and a half, and a roller coaster of emotional turmoil and the list goes on. All of it I know are all in some way tied to the pituitary tumor. Joane Nevin <snevin_AT_worldnet.att_DOT_net> Sarasota, FL - Friday, September 17, 1999 at 19:42:06 Are there any men out there with pituitary tumors. I had high prolactin levels and was placed on medication in 1993. Thomas F. Gliva <rebiker1_AT_hotmail_DOT_com> Newark, OH - Thursday, September 16, 1999 at 22:49:53 To Diane, Has your doctor mentioned trying Dostinex. From what I have read the side effects are much less severe with this. I have been taking Dostinex for just over a month now after finding that I had a tumour on my pit gland and 3 times the normal level of prolactin. 1 tablet twice a week taken with food before bed. I was getting alot of bad headacres and felt pretty average for the first couple of weeks but this has eased. Might be worth a try. Take Care, Peace & be happy!! Julie <milly_AT_eisa_DOT_net.au> Melbourne, Vic - Thursday, September 16, 1999 at 18:39:53 I went to the doctor yesterday got the levels (hormone) tested will get back to you with the results. Crystal Hrrison Dauphin, MB - Thursday, September 16, 1999 at 09:38:32 Does anyone here know of any web sites that list endocrinology lab test procedures? In my searching, I have only found a couple of sites, but think there are probably many more. Also, is there anyone here who has been diagnosed with Intermittent Cushings? I would like to hear your story of the diagnostic procedures. Thanks. Kathy Hestir <twinmom_AT_mindspring_DOT_com> Piedmont, SC - Thursday, September 16, 1999 at 09:07:20 Hi I was dagnosed five years ago with a prolactinoma tumor. I beleive this tumor was present when I was a young teenager as I did not menstrate reguarly until my first son at 26 yrs. I was told I would not have children as I did not ovulate. This is the first time the medical system let me down. I was never thoroughly checked out. I has always had a yellow thick discharge from my breasts & milk ducts were alway's swelling & PRODUCING MILK & embrassement I was told it was my maternal instinct causing this. After my first son was born my outgoing personality changed & I came very depressed & suffered moodiness & irritability. I started to have severe headaches suffered fatigue & my whole body ached. I always had regular pain behind my right eye. I had blackout while my son was a toddler & could only see sparkling dusts in front of my eyes & had an unbelieveable pain in my head.. The doctors did no blood tests head scans- told my husband I was depressed after having the baby these were normal systems. I went on to miscarry a baby at nearly six months & then twins 2 weeks apart at just over five months. In N.Z no research is done into miscarriage until after your third pregnancy goes wrong. It did not matter I had lost three babies. I had onlt two pregnancies. My Breasts were like Dolly Partons painful & I kept lactating Brocrypta(SP) was prescribed & would only help temporarily. I have later foud out from my own research the babies naturally aborted themselves I had the prolactin levels 8 x that of a breast feeding mother- this causes me sadness that no one gave my family and above all myself the correct care. This helped to the breakdown of my first marriage- the loss of the babies & me being tired all the time. For the next6 nine years life was never emotionally balanced on + off Brocryptaline was prescibed I refused anti depressants & dealt with a herbal Pharmachist. I became engaged and told my new partner my chances of giving him a child were not good.. We went to family planning. MY NEW PARTNER WAS FERTILE-I was told to stop taking the pill as the hormone levels in the pill were effecting my own bodies hormone level__________I was told my body was starting to sterlize itself thats why I had symptoms of the change ! HOT & Cold fevers, tiredness headaches etc....The trainee Doctor ther was very concerned & sent me to the endrocrology dept at Christchurch Hospital I had 8 x the levels of prolactin in my system yet again of that of a breast feeding mother.I had a scan I had a tumor- my relationship was not good my new partner could not cope with responsibility- I went through all tests alone. In amongst all this I defyed the odds & WAS three months pregnant_ I started again to have blackouts . I had pressure behind my right eye these symptoms only camr to the fore when I was pregnant. I ended up with glasses I was told after the baby was born they would remove the tumour. I started to attend a spirtial church where I received hands on healing twice a week while I was pregnant it was the best option I could come up with herbs are dangerous to pregnant mums & I was certaintly was not going to swallow manI made medication.I'll explain a little about natural healing. It is Christ awareness healing it is what Jesus used on the people to regain their sight , take away their leprosy- it helped people believe in themselves to walk again. Anyway I personally beleive in something greater thann ourselves well the tumor shrunk & did not need need operating oh- it stoppoed swelling & pressing on the optical nerve.Afetr my second sons birth I was happy then the symptoms returned tiredness, aching body, irritability headaches again. I stopped driving I had more blackouts & because I was by myself I DON'T KNOW FOR HOW LONG LONG i WAS TOLD NOT TO DRIVE until further tests keep see like flashing lights Plus dizzy spells. When my son was 14mths I became pregnant again regardless of what the mediccal proffesion had told me and I choose to be on the pill. I did not want more babies - especially having blackouts I did not want to put my toddler at risk or muy unborn child I seeked advice about termenating my baby my partner was y 2nd husband gives me the ultermatium no baby no marriage I go throught the pregnancy to find out my husband has someone else I am five months pregnant. Twenty months later the tumour has started to swell I hahave had weight gain from 62 kilos to 80 kilos dizziness, extereme tiredness very little patience terible pain in my head- not to mention the Dolly Partons are back !! i HAVE BEEN TAKING bROCRYPTALINE BUT THE LACTATING ALWAYS STARTS UP AFTER I STOP TAKING. I am taking 20mgs of Aropax I have been on this a year after I finished feeding it has helped level out the moodiness & irratability but thats all.On the 20th of this month I am back to see the specialist at the endocrology unitg I want to go armed with information about other people the drugs that have helped them. I am no coward but I do not want to have surgery to my head because of side effects. I do not want to leave my boy's while I go into hospital so at this stage I am interested in medication. Please help!!!! I am 41 years old please reply before the 20th sept so I CAN TAKE YOUR STORIES TO MY SPECIALISTS. tHANKYOU Kerry kERRY <martinby_AT_ahug.co.nz> christchurch, - Thursday, September 16, 1999 at 06:24:23 I was diagnosed with a benign pituatary tumor of 5cm in May of 1999 which was found from a MRI. My blood level at the time of it being found was a 40. I was placed on Bromocriptine 2.5mg twice daily. I began to experience nausea after the morning dose but not after the evening dose. I discussed this with my doctor and it was decided that I half the morning dose but continue the evening dose at regular strenth. After one month the level dropped to a 28. He continued me at this dosage for the next few months and had me do another level. In August my level had gone up to 29. Doctor placed me on 5mg twice daily of Bromocriptine which created the naseau symptoms again after the morning dose. So began the experimenting of trying to find a comfortable time to take the med. Doctor recommended at 5:30am to take Zantac first, then to eat then half hour later to take the Bromocriptine which is what I do then I go back to bed to "sleep off the nausea". It helps but then I am very tired during the day. Prior to this I had horrible headaches, dizziness and eye blurriness which I had checked by doctor for migraines and then eye problems by eye doctor, to which eye doctor found nothing and physical doctor kept diagnosing "dizziness". So by chance of a blood level we were able to find it as I am also doing infertility testing. I am hoping to become pregnant but am scared of being on meds prior to finding out that I am pregnant. I am wondering about the effects of the med after I conceive as I would not know that I am pregnant until later. Has anyone else had a similiar experience. Thanks for the site and info. When I first got the diagnosis I felt much alone and angry with it. diane Diane <Maj2930_AT_Aol_DOT_com> IA - Thursday, September 16, 1999 at 01:21:36 I am a 54 yr old male just diagnosed with adult-onset diabetes, hypogonadism and a high serum prolactin test(460+) and low T(40's). I will have a pituitary MRI next week. I am learning what I can about prolactinemia, the causes and treatment options. I am very surprised to learn the physical and psychological effects of these conditions. I look forward hopefully to improving my health. Paul Beaulieu <Pbeaul4844_AT_aol_DOT_com> Greene, RI - Thursday, September 16, 1999 at 00:08:21 My sister is 45 years old, mentally retarded living in an assisted living group home and has just been diagnosed with microadnoma. I have read enough to understand what it is, but I do not understand why this has been blamed for the drastic increase in her behavior pattern, which has always been rather docile and has now become sporatically agitated and has lead to some mildly violent outburst (i.e. trashing her bedroom, yelling at others in the home in anger). They have recently moved her out of the grouphome and into a hospital for neurological testing. If anyone is familiar with this kind of symptom relating to this disease, please email me with information. (She is on parodel, along with some kind of hormonal medication for menopause.)Thanks-Mick Mick <fbsilver_AT_aol_DOT_com> Brighton, TN - Wednesday, September 15, 1999 at 18:16:56 Hey folks. I am probably being paranoid, but just wondered if any of this might be worth exploring. I recently had testicular cancer, luckily surgery and chemo worked and all seems to be well. What makes me wonder about pituitary problems is the following. Post surgery apparerently the remaining testis did not work, the testosterone level was very low (<20) so I went on HRT. All is well as far as that goes. Unfortunately they did not check FSH or LH at the time. About two months into HRT, I switched methods and at that time the endo handling that (a different one than normal) checked for FSH (5.5) and Prolactin (13.2) which were both in the normal ranges. About a week ago my local endo checked for FSH (2) and LH (1) which were low normal (he feels due to ongoing testosterone replacement). About 9 years ago I had a "scare" during a routine sinus xray, they "saw something" in the pituitary area. I had a MRI at that time and all it showed was "large sella" and apparently no growth. I also recently had a vision exam because I had noticed myself becoming a bit more nearsighted (I always have had a severe astigmatism) and on the Vision Field test I was "borderline deficit" on the central field of vision in one eye though normal in the other (peripheral was fine in both). I realize that you can't provide diagnosis through this, but wondering whether it is worth further investigation. Steve Bloom <sbloom_AT_well_DOT_com> Portland , OR - Wednesday, September 15, 1999 at 14:47:23 just checking jan sparks <jan_AT_sparksagency_DOT_com> wills point, tx - Wednesday, September 15, 1999 at 04:26:45 Well, hello again and thanks to all for your support and information. It is because of the people I have met through here, I feel like I have made the best possible decision. I have gotten my referral from my HMO(Texas Health Choice) to Dr. Bruce Mickey. I understand he is the best in the DFW area. I have my first appointment next week. I have decided that surgery is the best route for me. I am doing well, and hope all of you are the same. If anyone needs my support or help please feel to contact me. Don Simmons <Ayudar1_AT_aol_DOT_com> Plano, TX - Tuesday, September 14, 1999 at 22:46:37 I am a 26 year old female. Had a tumour removed when I was 19. I tried Parlodel- terrible side effects- nausea etc and I am currently on Norprolac. I am looking for some more information on Dostinex as I would like to take fewer tablets. I have heard that the dosage of Dostines is far less than that of Norprolac. Anyone with any info, I would love to hear from you Tracy Chowles <tracycho_AT_radiospoor.co.za> Port Elizabeth, E/cape - Tuesday, September 14, 1999 at 11:08:48 I had a pituitary adenoma surgically removed in 1989, now have a prolactin count of 70 (max 20). Also have slight field vision problems. Frieda Aucamp <valera_AT_mweb.co.za> - Tuesday, September 14, 1999 at 10:40:47 If anyone has any information on Cushings Diease the symptoms or experiences you have had and going through please send them to me. Nicole <cwolie_AT_aol_DOT_com> Me - Monday, September 13, 1999 at 15:49:36 This is to the person who answered me on September 9. Yes I have had a follow-up MRI. It was a few months after my surgery. NOthing showed up. The follow-up blood tests were done about 8 months ago all prolactin levels were normal from what my Endo tells me. I am not on any meds. The tumor was prolactin positive which means it was a prolactin secreting tumor. I am a a loss every time lactation occurs I get a lump in my throat and think oh no not again. Also maybe it is important to point out the lactation was never spontaneous it only occured through exams. Also I NEVER experianced any problems with my periode. I hope this info helps you to understand my personnal situation. If you or anyone elese has any other comments I'd really appreciate hearing them thanks alot. Also once again just address them to CRYSTAL in this guestbook thank you. CRYSTAL HARRISON Dauphin, MB - Monday, September 13, 1999 at 15:44:39 Yes I have had a follow up MRI. There were no signs of the tumor, and the doctor felt conffident he had removed it all. As of know I have not been on any meds since befor surgery (2 years ago) I was taking Bromocriptine(bad experiance) The tumor I had was prolactin positive which meant it was secreting. I have not had any recent bloodwork but I have an appointment on the 15 of September. Is there any other reason you can think of? I don't even want to consider the posssibility of reacccuence. Thanks alot for all of your info and concearn. Crystal Harrison Dauphin, MB - Monday, September 13, 1999 at 09:43:31 This is a wonderful site. I was just diagnosed with a 10x7x7 cm right pituitary mass that is suspicious for pituitary macradenoma. This site has helped me deal with the situation until I can make decisions. Thomas Price - Sunday, September 12, 1999 at 01:26:33 I am 14 years old and I have just been diagnosed with a brain tumor behind my left eye. The doctors aren't really sure what is going on, and it is pushing against the corroded artery and is somehow attatched to it. The doctors seem like it would be a very big risk to remove it seeing as how it could effect my speech, memory or sight. I was diagnosed with it about 1 month ago and my family and I are still suffering. Please if anybody has any info. please help me. I am so scared. Help me. Nobody knows what it is like to no be able to see yourself grow old. Ashlie Ashlie <ashlie1617_AT_yahoo_DOT_com> Jamestown, NY - Saturday, September 11, 1999 at 15:53:20 I am very concerned about the treatment of this tumor. I am aslo concerned about the effects this might have on my memory, vision speach.. Linda Damico <LD6984_AT_aol_DOT_com> Islip, NY - Thursday, September 9, 1999 at 23:50:57 Could sombody please send info on pituitary gland and cushings desease or tumers. What I really need is what are the symptoms of all this. As much info as you can send Would be greatly appreciated. Thank you very much! Randall Horn <jhorn_AT_ria_DOT_net> Wiley, Co. - Thursday, September 9, 1999 at 23:44:22 any experience with post operative testosterone hormone replacement? nickie <fostertln_AT_aol_DOT_com> New York, NY - Thursday, September 9, 1999 at 23:12:07 Crystal, Have you seen copies of your bloodwork to make sure you are in normal range? Also have you had a follow-up MRI? There are a few other factors that could be causing the milk production...meds>> are you taking any? non-screting pit tumor? let us know. . <.> ,, - Thursday, September 9, 1999 at 13:52:40 My daughter is 15 and has just been diagnosed with a pituitary tumor. The doctor has put her on Dostinex and we have not started it yet as I want to explore natural alternatives. Are there any possibilities that there are other treatements my daughter can have as opposed to taking this med? I have had lupus with an overlap muscle disease and am 39. We have had enough med. problems! And now this! I explored alternative med for 1 year after being diagnosed with lupus, spent $16,000 and got nowhere, but I do want to at least search and ask questions about natural alternatives for my daughter. What are your thoughts????? We are desperate. Donna MacDonald <eieio_AT_pacbell_DOT_net> San Jose, CA - Thursday, September 9, 1999 at 13:46:56 HI! I last entered the homepage last year. I had surgery for a prolactinoma in 1997. Everything went well and the tumour was removed(benign). My quiestion is : Has anyone who had surgery for prolactinoma still experiancing lactation? I am and my endocrinologist told me the prolactin level is normal however both sides are doing it now when only the one was after surgery any comments would be appreciated. Other than this my surgery was 100% successful. I do not have an E-mail address so if anyone has any comments please address them to CRYSTAL in the guestbook thanks alot and good luck to all of you's Crystal Harrison Dauphin, MB - Thursday, September 9, 1999 at 11:13:56 I have just been diagnosised with a pitutary tumor, hormone growth and a tumor behind my left eye. I have a Endocrinologist I like and trust but I am very scared because I know nothing about this. I am 42 and if anyone can e-mail me with any information about this I would be very grateful to anyone who can explain some of this to me. God Bless anyone who is suffering like I am and who is afraid like I am.My blessings to all the children and families too! My husband and my daughter cry like me because they don't understand either. Thank You! Peace be with you. Debbe C. Debbie Combs <debbieLC_AT_webtv_DOT_net> Otisco, IN - Wednesday, September 8, 1999 at 19:47:57 Thanks for all the support from all of you that written me. It has made this difficult time much easier to bear. It has also made me a lot smarter patient. I have read and looked all the websites and literature that has been recommended to me. I have learned so much from you and the things you have recommended. When ever I visit with a Doctor i have my manilla folder full of papers and notes from my friends. The doctors are amazed that i can know so much in so little time. I have been diagnosed with Acromegaly. Not supprising since i have had classic symptoms for about 6-8 years. I'm now working on getting the right surgeon in the Dallas area. I have decided to try to get a referral from my HMO(Texas Health Choice) to Dr. Mickey at South West Medical Center. I hear from several sources that he is very good. There were two others that i have heard were very good Dr. Jackson and Dr. McCutcheon. I was afraid of the surgery at first now I'm more afraid of the medications. I hope this HMO will allow me to use the doctor I want. If i can help any one out there get through this, please feel free to contact me. I'm doing very well and feeling great for now. Don Simmons <Ayudar1_AT_aol_DOT_com> Plano, TX - Wednesday, September 8, 1999 at 12:56:37 Does anyone know a good endocrinologist in the Columbia, MD or Baltimore area who has a lot of experience with hyperprolactinemia? Thanks! Nora <kralowetz_AT_aol_DOT_com> MD - Monday, September 6, 1999 at 14:09:47 I have been taking Dostinex for the last 3 months. I wanted to continue to take it because I was terrified of tranphenoidal surgery. I have not had any side effects from the Dostinex other than a little dizziness so I was content to continue the way things were. I now have seen results of the surgery because my sister under went transphenoidal surgery this week (Tuesday the 31st). She had a plum sized tumor (about 4 CM)I am amazed and she is too. She is going home tommorow (3rd) she has had very little pain and says this is the easiest surgery she has ever had. I dont think I would have believed if I had not witnessed it myself. My fear is gone and I am now ready to get rid of this thing. Good luck to you all! Penny <pennkev_AT_hotmail_DOT_com> OK - Thursday, September 2, 1999 at 21:48:40 Just looking up side effects for cabergaline. Corey W. Quain <Coreyq_AT_mciworld_DOT_com> Austin, TX - Thursday, September 2, 1999 at 12:59:39 Macroprolactinoma (14mm). Dx Jan 96. Transphenoidal Jun 97. Increased prolactin/tumor return May 98. Currently taking synthyroid, hydrocortisone, testosterone (injections), and Dostinex. Holding the line mentally, but sinking physically. Headaches, fatigue, aches and pains. Planning to stop Dostinex and return to Permax (pergolide). I used Permax prior to surgery and never had these problems. Hoping that this may be the problem. Cheers and good luck to fellow pituitary patients. John Hope John Hope <JLHope_AT_aol_DOT_com> Springfield, VA - Wednesday, September 1, 1999 at 15:31:40 I have undergone two operations, transphenoidal and craimiotomy (sp?) to remove a lemon-sized Pituitary tumor. I have gone through radiation treatments and hormone therapy over the last year and a half. I would be happy to talk to anyone about my experience. I have a web site that will explain what I have gone through. The address should be attached. Please visit! I hope that me real world experience will help you get through yours. Good luck, God bless and keep your head up. If I made it through this, so can you! Regards, Steve Howard showard_AT_one_DOT_net Steve Howard <showard_AT_one_DOT_net> Cincinnati, OH - Tuesday, August 31, 1999 at 23:02:47 I have a pituitary tumor and that can not be distinguished from my pituitary. The entire piruitary is enlarged. I have met with a neuroligist and an endochronaligist. They may have to remove the entire pituitary. My endo thinks that there is a possibility that there is something else going on, but believes that i have acromegaly. I am 44 and have been healthy most of my life. I am now heavier than i have ever been. I am 5'11" and 200 Lbs. I have been 150-165 all my life. I have been very depressed since learning about this tumor. I am having trouble adjusting to what the conquences might be. I know surger is the first defense, but hope there is an alternative. I'm very afraid of surgery and really don't know what i should do about the treatment as yet. I just did my blood test this week and hope to find out what the recommended treatment should be. Tell me if anyone else has had the entire pituitary enlarged and there is no distinguishable tumor. Don Simmons <Ayudar1_AT_AOL_DOT_com> Plano, TX - Sunday, August 29, 1999 at 21:46:36 I am 19 years old and have gont to the Doctor's several times because I have had terrible headaches, gained at least 30 pounds in a short amount of time, and stopped having my period. I found out that I had a pituitary tumor or what might be cushings diease. I was wondering if anyone could mail me information on this. It would be very helpful. Another thing that scares me is the doctor's say with this I am not ovulating. Will I not have kids? Nicole <cwolie_AT_aol_DOT_com> Me - Sunday, August 29, 1999 at 17:58:48 Is there anyone out there that has been on Dostinex and taken off of it? Did your pit. tumor start functioning again after being off of it a while. I took Dostinex for six weeks to stop my 8mm tumor from functioning. I was taken off of it in January 99 because it had worsened my depression. I will have another MRI in April 2000 and will see my endo. dr a week afterwards. It concerns me not knowing what this alien is doing in my head. I've had a complete hysterectomy and my body seems calmer. My depression has eased up a bit despite the horrible summer I've had. BJ BJ Williamson <jcwbjw_AT_aye_DOT_net> Georgetown, IN - Sunday, August 29, 1999 at 13:14:24 I am a 30 year old female who was diagnosed with a 7mm pituitary microadenoma a year ago. I had a total abdominal hysterectomy in Jan. of this year due to endo, etc. I had not had a period in 3 1/2 years. I also have low thyroid function and low blood sugar. I am on synthroid for the thyroid. I suffer from horrendous head aches. I have the classic migraine and then the headache that feels as though a knife is being plunged into the center of my head-this also affects my sinuses. I get a headache about once a week. The nuerologist and the endocrinologist that I see tell me that because the tumor is only 7mm that it can not be related to my headaches or other problems that I have experienced over the last year. Prior to this I was healthy. I have also been told since the mri's have shown the tumor to be consistent in size and nonchanging, that I never need to get another mri. I dont know what to do and my headaches are driving me crazy. I have taken every pain medicince possible. Has anyone had similar experiences? Does anyone know of doctors in or around Austin Texas? Thanks so much for any info. Victoria Victoria Nickell <tory0202_AT_aol_DOT_com> austin, tx - Thursday, August 26, 1999 at 22:03:33 To all of you out there that may be reading....PLEASE LISTEN CAREFULLY! I am a 22 year old female and was diagnosed with a LARGE pituitary tumor about 8 months ago. My TSH level was at 800 and I had to go through an MRI, also. (As many of you know, or don't know, the NORMAL level is between 1 and 5.) I went to a neurosurgeon and he immediately said that we had to do surgery to remove it. THIS IS THE IMPORTANT PART: I went to get a second opinion with Dr. Steven Osa, an endocrinologist in the state of Colorado. He said that surgery might not be the answer. He put me on a MEGA dose of Synthroid and 2 weeks later I had lost 15 lbs, my TSH level had dropped to almost normal, and things were beginning to look up. 6 months after diagnosis, I had another MRI and there was no sign of the tumor! SO PLEASE, PLEASE GET A SECOND OR THIRD OPINION....I AM HEARING SO MANY STORIES OF PEOPLE GOING THROUGH SURGERY AND ENDURING SO MANY CHANGES. If there is anything that I can do to help anyone, PLEASE Jennifer Dorrance <GJDorrance_AT_cs_DOT_com> Sandy, UT - Thursday, August 26, 1999 at 19:51:50 Hi all - Its nice to see such a helpful and informative resource! After feeling ill all summer and having significant dizzy spells, the doctor ordered a CT Scan and found a small nonfunctioning pituitary adenoma. Its only about 0.5cm, but has me feeling exhausted, nauseous, slight headaches and the terrible dizzy spelIs. I have a referral to a neurosurgeon in Toronto on September 22. I'm not too worried - but wondering if I should be. Form what I've heard, surgery is not always needed, and even when it is, it is not too major a process. I've also read that malignant pituitary adenomas are rare and I musn't worry about that. I hope these aren't misconceptions. Just looking for more information about this and gratified to see that there others out there. I'd be interested to hear from anyone! Have a happy day, Sarah Sarah Scarowsky <ah324_AT_ncf.ca> Ottawa, - Thursday, August 26, 1999 at 11:39:40 My wife (41) was diagnosed with prolactinoma 10 to 12 years ago. Since then she used the medicines Parlodel, Norprolac and Dostinex. All three medicines caused all sort of side effects, such as nausea, depression, mood swings, tiredness, dizziness, you name it. She also suffered from pains in the left side of her body. Arm, leg and especially the hip felt painful and stiff. Is there anyone of you who recognises this phenomena? The only commentary of her specialist on the complaints concerning the side effects of the medicines is that a lot of people are using them without any problems. I cannot tell you how glad we were when we found this site. It shows us that we were not alone with this problem. Now after some intervals in taking the medication, my wife has to start again with Norprolac. Already a week I see her throwing up in the morning, trying to hide the pain in her leg and hip and feeling miserable overall. The remedy seems again to be worse than the disease. Does anyone have any idea how long those side effects go on, because during all her attempts last years taking the medicines the effects were not decreasing (as is promised by the producer), not even after months of trying. Is there any way to relief the worst of the side effects. Can anyone tell us about their experiences with those medicines and the ways they handled them. I am terribly worried. We would appreciate any info. Thanks. Chris Beets Chris Beets <c.beets_AT_minez.nl> - Thursday, August 26, 1999 at 08:37:08 I would like to ask if any one has infomation on Irratable leg syndrome please email it to me thanx michael <fraym_AT_usa_DOT_net> - Thursday, August 26, 1999 at 08:02:14 I have had a pituitary adenoma since 1977. I 1978 I had the first operation at Baragwnath Hospital. Dr Jimmy Van Dellen did the surgery. Thanks Jimmy you are a swell guy. Joe Veriava (Thanks Joe) treated me before and after the op. He put me on Parlodel and I stayed on it for 18 years. I fell pregnant and had two sons, but I also had two miscarriages. My eldest son was born with a vsd.I cannot say whether it was due to the medication. I have never tolerated Parlodel very well, but I had no choice. Those who know the side effects will understand what teh meaning of death warmed up is.I changed to Norprolac two years ago and I must say the side effects are far less. I have had major bouts of depression and now I am on Prozac. Bob's your uncle the two work very well together.I watch my prolactin levels and I have my visual fields done at least once every two years. I have had a hystarectomy and therefore I cannot say much abour ammnehorrea. There is no galachtorhea aand I am fine.For those of you still worrying, I had the first op in 1978 and the second one 1984. I am here to tell the tale. I have been widowed for the past 11 months and I think I might get married within the next year. So- there is nothing toworry about. Norprolac keeps me young. I am convinced of it. Carol Tshoaedi <ccbt_AT_mweb.co.a> Sandton, - Wednesday, August 25, 1999 at 18:35:58 I am a 43 year old male diagonsed with a pitutiary tumor in Nov 98. I was taking Bromocripitine and have switched to Dostinex - what are the side effects of Dostinex? Has anyone experienced ear problems as a result of the pit tumor? Don Longmire <DTLong4234_AT_aol_DOT_com> Kennewick, WA - Tuesday, August 24, 1999 at 01:49:01 Pituitary Disorders Education and Support Group People with pituitary disorders, their relatives, friends, and health care professionals are invited to attend. Learn about pituitary disorders and treatments. Meet other patients and share coping skills. Date: September 11th 10:30 to 1:30 Location: West Bloomfeild Medical Center 6777 W. Maple Rd. (15 Mile) Between Halstead and Drake. For directions call 248 661-4100 Topic: Medications commonly prescribed for pituitary patients, How they are taken effectively and possible interactions. Following our topic presentation we will have the opportunity to ask questions and speak one on one, with our guest speaker/teaching Pharmacist and Dr. Jack Rock, Neurosurgeon of Henry Ford Pituitary Disorders Center. We will also discuss your goals, patient survey, and future events. November 6, 1999 Meeting will be held at Sparrow Hospital Lansing, MI. Topic; Growth Hormone replacement…Who needs it? Guest speaker; Dr.Ved Gossian,MD Visit Website http://community.mlive_DOT_com/cc/pituitarytumor Please Contact Teresa Sullivan for meetings and upcoming events. You may give your name and address to be added to the Pituitary Education and Support Group mailing list at 810 227-5615 or email Sully_AT_ismi_DOT_net Teresa Sullivan <sully_AT_ismi_DOT_net> MI - Monday, August 23, 1999 at 12:12:22 Since my posting, I have gotten many e-mails that were very reassuring. Thanks for all the e-mails. I haven't gotten back to everyone because, with 2 small children, time is a factor. Still have same symptoms and I will be seeing a new endocrinologist in a few weeks. I wanted to e-mail Troya Yoder, if you see this, but didn't get your e-mail address. It sounds like we have a lot in common. Would love to hear from more people with same symptoms. Mary DeSanto <tommary_AT_aug_DOT_com> St. Augustine, FL - Sunday, August 22, 1999 at 12:43:34 i had a tumor removed 3 years ago achieved pregnancy and now the tumor is back shantel portland, or - Saturday, August 21, 1999 at 20:55:07 Hi! I am so glad I found your site. I am a 40 year old woman who has recently been diagnosed with a 6mm pituitary tumor, possibility of another 3mm tumor, and a misshapen pituitary. I guess if one had all that in the little pea size gland it would be misshapen! I have more than a few annoying symptoms but the main ones are depression and headaches. I have been on Pamelor and Trazadone for 6 and 1/2 years. At the beginning of these bouts of depression I had to be hospitalized. Now I can not go off of the anti-depressants. I am scheduled for surgery on Sept. 10,'99 and would like to know if anyone else had/has a non-functioning tumor and depression? I have had all hormone levels done and they were all normal. It is a step of faith for me to have the surgery and hopefully help these years of unrelenting depression and headaches. I welcome any comments or suggestions. Kristy bwb_AT_ev1_DOT_net Kristy Bartel <bwb_AT_ev1_DOT_net> Spring, Tx - Friday, August 20, 1999 at 16:51:36 Hi Mandy, What type of pit tumor do you have? Secreting or non-secreting? Are you currently taking any medications? I am concerned you may be passing out from a hormone deficiency. Have you been checked by a endocrinologist lately? Your e-mail addy didn't work? Hang in there! Trish trish <acrowhat_AT_aol_DOT_com> oh - Thursday, August 19, 1999 at 22:46:50 I am 19 years old, I have known about my tumor for 2 years. My headaches are getting more frequent and more severe. I have passed out 3 times in the last 2 weeks. My MRI shows no change in size so the doctors are doing nothing. Any advice I am so tired of this? Mandy Covey <kayray5472_AT_yahoo> Williamstown, KY - Wednesday, August 18, 1999 at 21:21:51 I feel myself changing in so many ways. These are not good changes, its often scary at times. Patti <HAMBO3_AT_webtv_DOT_net> Hendersonville , Tn - Wednesday, August 18, 1999 at 19:55:10 I have been surfing the net in search of normal ranges for blood work. Does anyone know where I can find this information? I am primarily interested in what normal Prolactin levels are. Can anybody help me? Mindy Green <rgrnnn_AT_yahoo_DOT_com> Chicago, IL - Wednesday, August 18, 1999 at 16:45:24 My 24 hr urinary cortisol level is coming back 20 points higer.I have surgery a year ago I feel good but I don't know what is going to happend .I have 1/4 of my pituitary but went they do MRI they never can see the tumor.Because they did Petrosal Sinus test they remove most of my pituitary gland but now is coming back I know what to expect and do.I have to do more test in my chest in to more months.Some body help me Lydia E Rosa <LRosa_AT_ra5_DOT_com> San Antonio , Tx - Wednesday, August 18, 1999 at 00:47:56 Hi,I'm a thirty year old female,I have two pituitary tumors.I have severe headaches,ear aches,blurredvision,and a hundred other problems, But I'm a single mother of three kids,12years,20months,4months,so I'm not able to work and my only insurance is medicaid,And the Dr's I have talked to try to make me think I'm just crazy.I personally think it's because medicaid does'nt pay as much as other ins.co. I have been to a opthamologist,he says I have already lost some of my vision, I used to have 20\20 vision. I'm really scared of what is going to happen if something isn"t done soon.The tumors are 5cm and 7cm.They have been in my head for 4 years that I know of.If you can give me any info or help it would be greatly appreciated.Thanks,Sonja Rae Pruitt Sonja Rae Pruitt <ncausby_AT_bellsouth_DOT_net> Denver, NC - Tuesday, August 17, 1999 at 01:28:58 Great site. Erin Condit <econdit_AT_exchange.ml_DOT_com> NYC, NY - Monday, August 16, 1999 at 12:43:43 Had transphenodal pitutary surgery 8 years ago at Barrows neurological hospital in Phoenix. Hormones have been fine since. Todd Stephenson <commtech_AT_starlink_DOT_com> Phoenix, AZ - Sunday, August 15, 1999 at 23:02:40 Octreotide is a injectable medication used to treat a certain type of pituitary tumor, usually acromegaly caused by a growth hormone secreting pit tumor. The medication has been used for other medical conditions as well. Do you have a pit tumor? . ,, . - Sunday, August 15, 1999 at 22:03:41 I have been diagnosed with Cushings Disease. My cortisol levels are high in my 24 hour urine collections. My diurnal level is high. When they did the surpression test my cortisol was surpressed. I spent two weeks at the NIH for testing and it is still not clear whether or not the tumor is in the pituitary gland or not. They did jugular vienas sampling that was positive but the petrusal sinus sampling showed no tumor. So I do not know what to think. I have most of the outward signs of Cushings. I need some support. I am going back to the NIH in September for either an operation on the pituitary or for more testing. Anyone, please respond to my e-mail address. Timothy O'Keefe <trucking55_AT_hotmail_DOT_com> La Mesa, CA - Friday, August 13, 1999 at 23:38:02 what is octriotide janet pilok - Friday, August 13, 1999 at 15:46:32 I was just diagnosed with pituitary micro adnoma. I go see a neurosurgeon Aug. 20th. I am a 34 yr. old female that has never menestrated, and has no children. I would appreciate all advice I could get on the choices of medicine versus' surgery. Dee Remon <winnie5_AT_midusa_DOT_net> Iola, Ks. - Friday, August 13, 1999 at 12:02:18 Hi again! My doctor called me yesterday and told me that i will have surgery next week. I am relly worried so any information would be great. Before and after surgery, and in between. My pit tumer is +2 cm and has doubles in size in few months after it was about 1 cm for seven years. It is causing a lot of pain in the head, buzzing in my ear, nausea, tiredness and trembling. Well my doctor does not want to link the pit tumor and the trembling, but i´ve had it for about 6 monnths. Have you experienced that. It is very annoying that many of the side affects my doctor will not recocnise although through my search on the net i´ve come across information that say that these symptons are for really. I love this site, in Iceland there are no information about pit tumers that are available so the net has been a great resource place for me. Thank you very much, Love Eva Eva Gunnarsdóttir <evag_AT_sks.is> Iceland, - Friday, August 13, 1999 at 04:51:57 Hi. I started an interactive site at Suite101 devoted to Pituitary Disorders after my diagnosis with a microprolactinoma. Everything at Suite101 is FREE. I would love for you to check it out - there are new articles up biweekly on pituitary topics, biweekly surveys, discussion boards, and if enough of a response, we can initiate chats and a newsletter for anyone interested. So if you get a chance, please check it out, rate the articles, answer the survey question, and join in a discussion. This site is soley set up to provide patients with the opportunity to talk to one another and share experiences. The URL is http://www.suite101_DOT_com/welcome.cfm/pituitary_disorders Thank you. Troya Yoder <TYoder2_AT_compuserve_DOT_com> - Thursday, August 12, 1999 at 22:37:59 Hi my name is Eva and i was diagnosed with prolactinoma 8 years ago, i´m 24. I´ve been on Bromergon and Dostinex but they didn´t help me. I´ve a scheduled surgery next month (september) and i´m very worried. My docter told me that he would go through my nose and i would stay a week in hospital. I would really like some more information about this surgery, how long does it take to recover, do i need a lot of time of work....... so if someone would like to help me please feel free to contact me via e-mail. Thanks Eva Eva Gunnarsdóttir <evag_AT_sks.is> Reykjavík, - Wednesday, August 11, 1999 at 14:18:48 Hello, I am very glad to hear that I am not the only one. Please provide me with any information on prolactin. What are the symptoms of some of these drugs? I am currently not on anything but I will be going to the doctor this week. Today I took a blood test. I am very scared and nervous. All day I am stressed out. I just don't know much about prolactin. Please write me and tell me anything about it. I would be really happy to hear from anyone. Thank you, Sandy*** sandy <sandymartinez_AT_hotmail_DOT_com> Downers Grove, IL - Monday, August 9, 1999 at 21:49:52 Hi, I just talked with my mother who was informed that she has Cushings Syndrome. The doctors are advising her to have surgery, but the doubting thomas that I am I have to seek additional opinions and information. Does anybody know if it can be controlled by drugs? What are the non-invasive possibilities? I realize that the web is a good place to get bad advice, but any and all information I can get would be appreiciated. Bruce <b.g.j_AT_ipf.de> - Monday, August 9, 1999 at 16:26:02 Hi, I am a 22 y/o woman who has been taking 10 mgs parlodel/bromocriptine for the past two years. My family reports that my moods have changed notibly in that time. Now I am seeing a counciler for depression and anxiety who reccomends psychopharmacology. Does anyone know if there could be a relationship betwwen the tumor and my depression? Thanks, Sarah Sarah <gelfling_AT_imaginemail_DOT_com> brewster, ny - Saturday, August 7, 1999 at 15:02:25 Hello everybody! I was diagnosed with a prolactinoma 8 years ago. I took 7.5mg of Parlodel daily, until switching to Dostinex in June. So far Dostinex seems to be working very well. My question is this: I have been so forgetful lately!-Has anyone else with a similar medical background experienced any memory problems? If so, do you think it's due to the tumor or the medication? Thanks for your input! Sarah <millardjs_AT_msn_DOT_com> CO - Wednesday, August 4, 1999 at 04:12:57 I just found this page.And I think I would have alot of input,because I had cushings diease, tumor removed in 94. I would like to talk to someone with the same problem . As I don't know anyone who has had it that I could talk to . God Bless Curley Curley <alc_AT_azalea_DOT_net> Muskogee , ok - Tuesday, August 3, 1999 at 19:19:42 I am 17 years old and have been diagnosed with a tunour of the pituitary gland. Bromocriptine was not working and I am now on carbergoline, if anyone has any info on this new drug or my illness please email me. Sarah XXX Sarah <sarahcopp_AT_hotmail_DOT_com> Neath, West Glamorgan - Tuesday, August 3, 1999 at 07:42:41 I was diagnosed with a prolactinoma in may of '97 and the first doc. that i saw was so very incompotent. she gave me a ct scan and then told me i had a tumor then left town because her internship was done. so there i was in shock and on no meds.therefore i wasnt treating my tumor .i finally went to a ob/gyn and told him that i was told that i had this and that i was in need of some meds well he didnt understand and he just wanted to do an exam i explained again and he said he just needed to examine me to see why i wasnt having any menses i said no and got out of there (he was creeping me out) i went to another med clinic and that doctor had no clue to what a prolactinoma was and so he brought in two colleges. finally the second of the 2 had heard of this condition and refeered me to go see an endocrinologist. Yeah. some real help was finally here.(oct.98) he had prescribed bromocriptine and that made me so so sick we then tried dostinex and i have been on it ever since i still dont have a regular cycle (it has been two months) my "libido" has went through the roof, and we are trying to get pregnant. does anyone know if i can get pregnant? i am not sure with all this and i would really like to know the truth everytime i would ask the doc he would say lets just take care of this problem first. please e-mail me at babymoe_AT_webtv_DOT_net if you know. i am so glad i found this site i thought that i was the only one because none of the docs had heard and it so great to see all the success storys and happy people . i was also surprised to see that men also have this too. god bless all of you :) Jennifer <babymoe_AT_webtv_DOT_net> grandville, mi - Saturday, July 31, 1999 at 19:14:32 i am a 27 year old female who in may of 1998 was diagnosed with a pituitary tumor. i am now taking a medicine called dostinex. i also now have migraine headaches and am unable to work. the pain effects the left side of my head and into my neck. i am to start a procedure called trigger point injections next week. i am hoping this will releave some of the pressure. the doctors have me on six medicines for the headaches. surgery has not been ruled out. i would like to hear form anyone with the same problem and share notes. crystal hamilton raleigh, nc - Saturday, July 31, 1999 at 13:40:18 i was diagnosed in may of 1998 with a pituitary tumor. since that time i have been taking a medicine called dostinex the tumor has shrunk a little. i am now suffering from migraine headaches due to the tumor. if anyone has these symptoms like myself i deeply simpathize with you, it is a very nerveracking and depressing experience. i am a 27 year old female and would like to hear from anyone with the same condition. . crystal hamilton raleigh, nc - Saturday, July 31, 1999 at 13:28:48 I HAVE VERY RECENTLY BEEN DIAGNOSED AS HAVING A 1.5CM PIT TUMOUR. MY CONSULTANT RECOMMENDS THAT I SHOULD HAVE SURGERY FAIRLY SOON. I HAVE STILL TO HAVE MY EYES TESTED AND MY GLAND FUNCTIONS TESTED. I AM A BIT FRIGHTENED OF THE SURGERY AND I AM THINKING ABOUT REFUSING AND REQUESTING THAT MY TUMOUR BE TREATED BY DRUGS. CAN I PLEASE HAVE YOUR COMMENTS AND QUESTIONS WHICH I SHOULD BE ASKING THE CONSULTANT. THANKS TO EVERYONE WHO HAS WRITTEN IN THE GUESTBOOK. JOHN <johnallison_AT_arnshawduncrievie.freeserve.co.uk> SCOTLAND, - Saturday, July 31, 1999 at 11:33:19 I HAVE VERY RECENTLY BEEN DIAGNOSED AS HAVING A 1.5CM PIT TUMOUR. MY CONSULTANT RECOMMENDS THAT I SHOULD HAVE SURGERY FAIRLY SOON. I HAVE STILL TO HAVE MY EYES TESTED AND MY GLAND FUNCTIONS TESTED. I AM A BIT FRIGHTENED OF THE SURGERY AND I AM THINKING ABOUT REFUSING AND REQUESTING THAT MY TUMOUR BE TREATED BY DRUGS. CAN I PLEASE HAVE YOUR COMMENTS AND QUESTIONS WHICH I SHOULD BE ASKING THE CONSULTANT. THANKS TO EVERYONE WHO HAS WRITTEN IN THE GUESTBOOK. JOHN - Saturday, July 31, 1999 at 11:31:49 I have just had my yearly visit to the endocrine clinic They want me to go on growth hormone, they say it will improve the quality of life. I do not like the idea of injections (self-inflicted) I would be grateful to hear from anybody who is on growth hormone re- side effects ect. I am a veteran of two pit-tumor removals and radio theraphy I have all the usual problems with side effects of steroids ect. So please take the trouble to e-mail me on brenda.howard_AT_virgin_DOT_net. Brenda Howard <brenda.howard_AT_virgin_DOT_net> Skelmersdale, - Friday, July 30, 1999 at 17:06:21 This tumor bisness is very scary. Ruth R. Henry <retired_AT_icsol_DOT_net> Catawba, S.C. - Thursday, July 29, 1999 at 22:57:45 Thank goodness I found this great site! I am a 27 yr old female who was diagnosed with a prolactinoma just 1 wk ago. My husband and I had decided to try to have a baby so I came off my birth control pills this past April. I haven't had a period since then and my Ob/Gyn ordered bloodwork which revealed high prolactin count (135). She then told me of the possibility of a tumor on my pituitary gland. That ugly word TUMOR struck fear in me and my family, and sadly enough my MRI confirmed that I do have a tumor. I was put on Parlodel 2.5mg twice a day and have been taking it for about 1 week. The nausea was awful at first but I'm happy to say that it's much better now. Today I saw a neuorosurgeon who pretty much offered me two choices: Stay on Parlodel for the rest of my life and possibly never have children because of birth defects.......or have what to me sounds like a somewhat risky surgery to remove my tumor. Needless to say neither sounds too great to us! All my Doctors seem to have conflicting opinions about Parlodel's safety as far as pregnancy is concerned. I would appreciate any info and emails from others suffering with this problem. At least now I know that I'm not in this alone, I'm so glad to have found this wonderful site! Thank you so much. I hope to hear from others soon. Lori Price <Lollyfloss_AT_aol_DOT_com> - Thursday, July 29, 1999 at 19:03:39 I am so very grateful for finding this guestbook. I am a 27 year old female who just found out about my 9mm prolactinoma last week. I had been taking birth control pills for 7 years and never suspected that anything was wrong. My husband and I decided to try to have a baby, so I came off the pills but never started a period. My Ob/Gyn ordered blood tests that revealed high count of prolactin (around 135). She called and told me that I needed an MRI to see if there could possibly be a tumor on my pituitary gland. Naturally...this scared me and my family members to death! That word TUMOR sounds so ugly. To our dismay there was a tumor and I have been put on Parlodel 2.5mg twice a day. I have only been on it for 6 days now. At first the nausea was awful, but it has already eased up a lot. (Which I am very grateful for!) Today I saw a neurosurgeon who told me that I either need to stay on Parlodel forever, or have somewhat risky sounding surgery to remove the tumor. We still want to have children and I am very unsure about the Parlodel and birth defects. All my Dr.'s seem to have different views about its safety. I would really appreciate any help or ideas from others. I'd love to talk about this condition, I was afraid I was the only one suffering but now I know I'm not!! I welcome all email and thanks again for this wonderful guestbook. Lori Price <Lollyfloss_AT_aol_DOT_com> - Thursday, July 29, 1999 at 18:33:27 I was diagnosed with a macroadenoma about 6 months after my son was born through fertility drugs. The main symptom was no period. After starting Parlodel, we were happily surprised to find out I was pregnant again. My daughter was born right after my son turned 2. Although I tolerate Parlodel fine, we are thinking of having the surgery because of other problems. I still have no period, my breasts leak, I can't seem to lose weight even though I exercise, and I have mood swings. Does anyone know if these symmptoms are caused by the tumor? Help! Mary DeSanto <tommary_AT_aug_DOT_com> - Thursday, July 29, 1999 at 15:27:42 thank for guest books like these . new to the net . i am looking for parents of 11-14 yrs male or females that have or had cushings .my son had a 8mm pit tumor removed in march of 98 and also had kidney stones. he is doing great and having the summer of his life. would like to share info and support. and always laugh outloud everyday. cuz, it really do keep, da Dr.away! R.C Prejean <abracadabra_AT_eatel_DOT_net> Baton Rouge, La - Thursday, July 29, 1999 at 03:08:48 thank for guest books like these . new to the net i am looking for parents of 11-14 yrs male or females that have of had cushings my son had a 8mm removed i march of 98 and also had kidney stones. he is doing great and having the summer of his life. would like to share info and support. and always laugh outloud everyday. cuz, it really do keep, da Dr.away! R.C Prejean <abracadabra_AT_eatel_DOT_net> Btaon Rouge, La - Thursday, July 29, 1999 at 03:05:23 In brief: I'm a 41 year old female who had a hysterectomy 1996. Started lactating 9/98 with a Procatin level in high 90's Took Parlodel- which made me very sick Switched to Dostinex- which I couldn't tolorate either MRI's revealed a small adenoma With Meds was able to get level down to 37 (May 99) Quit all drugs in May was told they had helped all they could. Spoke to a surgeon, we were to monitor growth for 6 months with monthly procaltin level readings. End of June level 136 Middle of July level 177 I'm scheduled for surgery 8/11/99 to remove adenoma. Can anyone tell me about what to expect post-operative. Thank you for your help!!!! T <folger_AT_magnolia_DOT_net> Vicksburg, MS - Wednesday, July 28, 1999 at 21:38:54 I am 29 years old and recently diagnosed with cushings disease and they believe that my whole pituitary gland is a tumor that needs to be removed by surgery. I'm wondering if anyone knows someone that has become pregnant after surgery. Sherry Beard <singleto_AT_v.v.i_DOT_net> Troutman , NC - Tuesday, July 27, 1999 at 20:02:01 Good Morning, My 16 year old daughter seems to have either PCOS or Cushing's Syndrome. I have not been able to find information on the web which would indicate which it would be and what distinguishes one from the other. Do you happen to know of any sources of information relative to that? Thanks for any leads you could provide when you have a moment. Thank you Henri DESCHAMPS <henri-deschamps_AT_i-port_DOT_net> Port-au-Prince, - Tuesday, July 27, 1999 at 13:26:11 I found this site quite by accident. It's great to know that I'm not alone. I'm 31 and was diagnosed this hypoprolactinemia when I was a teenager. However, CT scans at that time never showed conclusively that I had a tumor in my pituitary gland. Taking Parlodel has been my only treatment. However, I have not be consistent in taking the Parlodel as I have experienced unpleasant side effects including nausea and severe sinus congestion. Currently, my prolactin level is only moderately elevated without taking the Parlodel. In November 1998, I had an MRI which failed to show a tumor in my pituitary gland. Both the neurosurgeon who ordered the MRI and my regular doctor, have urged continue taking Parlodel. I haven't been disciplined enough to begin taking the Parlodel again. I'm concerned about the future. As I have never been married, the thought of having children rarely has crossed my mind. But here in my early thirties, thoughts of marriage and children are becoming more common. I would like to know if there is any type of support group in Indiana for this condition. Also, I am having difficulties in finding an endocrynologist in the Indianapolis area (they would all perfer to work for the pharm. industry it seems). Rebecca Parman <rparman_AT_iupui.edu> Indianapolis, IN - Monday, July 26, 1999 at 17:03:55 I was just told that I may have a pituitary tumor, have not had a MRI yet, just checking out any info I can on the web. Teresa Hough <teresa.a.hough_AT_mail.sprint_DOT_com> Waldorf, MD - Monday, July 26, 1999 at 14:49:27 Welcome any information on pituitary tumors Marsha Sullivan <marshas2_AT_aol_DOT_com> - Friday, July 23, 1999 at 01:47:33 make sure you do a ref.check and speak to other patients of the doctor who is to perfotm your surgery! I learned the hard way!!!! Debra Khoshaba <jonjon_AT_globaleyes_DOT_net> Desoto, Il - Wednesday, July 21, 1999 at 21:18:57 I am a 35 year old female who has been diagnosed with a pituitary tumor. The Dr's say that the tumor is benign and nothing to worry about,but I deal with daily headaches that scare the day lights out of me. Does anyone have any answers. Susan <susans_AT_herald-mail_DOT_com> Hagerstown, md - Wednesday, July 21, 1999 at 09:47:33 I am a 37 year old female. I was diagnosed with Pituitary Adenoma after I discovered that I was producing breastmilk. I was put on Bomocriptine and eventually my Prolactin level decreased significantly. I was told that I must remain on the medicine for the remainder of my life. I am not having any of the side effects that I was warned about. I am having very vivid dreams and sometimes I wake up screaming from a nightmare that I have had. I am concerned about the mood swings and constant fatigue. I plan to mention these things to my physician at my next checkup. I am wondering if anyone else is having the same problem. I think this is a wonderful Guestbook and I'm glad I found it. Best wishes to all of the people who are experiencing medical difficulties. Sandra Reaves <sandrar1_AT_gateway_DOT_net> Fayetteville, NC - Tuesday, July 20, 1999 at 21:19:35 I am a 37 year old female. I was diagnosed with Pituitary Adenoma after I discovered that I was producing breastmilk. I was put on Bomocriptine and eventually my Prolactin level decreased significantly. I was told that I must remain on the medicine for the remainder of my life. I am not having any of the side effects that I was warned about. I am having very vivid dreams and sometimes I wake up screaming from a noghtmare that I have had. I am concerned about the mood swings and constant fatigue. I plan to mention these things to my physician at my next checkup. I am wondering if anyone else is having the same problem. I think this is a wonderful Guestbook and I'm glad I found it. Best wishes to all of the people who are experiencing medical difficulties. Sandra Reaves <sandrar1_AT_gateway_DOT_net> Fayetteville, NC - Tuesday, July 20, 1999 at 21:18:39 hi i had a 8mm pit tumor removed3-18-98 i am 13 yrs and would like to talk to any kids my age boy or girl that has or had cushings. thanks skyler skyler prejean <abracadabra_AT_eatel_DOT_net> baton rouge, la - Tuesday, July 20, 1999 at 20:11:15 Hello everyone! I'm so excited to find out there are so many other people with the same medical problem that I have. Over sever years ago, I was diagnosed with pituitary tumors. My prolactin level was extremely high. I was referred to a neurosurgeon and he suggested that I immediately have surgery. The word surgery scared me so I went to an endo. for a second opinion. This was very hard for me to deal with because I was a very athletic and sharp minded person. My endo. was great. First of all, he took the time out to explain to me what my problem was and what I needed to do to treat it and explained the lifestyle that I needed to follow in order to feel better. Of course, I didn't have the surgery. I am taking Parlodel (bromocriptine). It seems to be working just fine. Aside of the side effects, I think that any of the meds. that are out there that treat pit. tumors are probably going to have some side effect. My endo. told me that having the surgery was an option although it was not guaranteed that the pituitary tumors would stay gone without treatment via radiation or lifelong medication. I must say that I have been most fortunate - BLESSED. I have had one major bout with this disease. A couple of years ago I went through some very very stressful hard times. At which point I became extremely ill - all related to the pituitary illness. My doctor put me on 3/2.5mg of parlodel, three times a day, Yes, a total of 9 pills a day, three at a time. My prolactin level decreased and went back to normal but then I began to experience awful side effects, i.e., headache, nausea, extreme dizziness, fatigue, depression, mood swings, memory loss, slow reflexes, tension span very short, blurred vision, weight gain, and the list goes on. During that time I had to change physicians due to the type of insurance that I had. My newly assigned endo. would not listen to me when I kept telling him of my symptoms. He said it was normal considering the disease that I was suffering from. I begged him to remove me from the high dosage. When I didn't get any response, I decided to remove myself from the high dosage (I would not suggest without dr. approval). I was overdosing on Parlodel. When I removed myself from the high dosage - two months later, I went to my primary care physician and had my prolactin level checked. My prolactin levelwas fine and still continues to be fine. I feel 100% better. Needless to say, I haven't visited that endo. since then. The very first endo. that I had gave me some advice that sticks with me. He told me, once I was diagnosed, that I will have to become a very good pill taker. Never miss a dosage. The next thing he told me was to relieve myself of as much stress as possible and to eat healthy and get plenty of exercise. Since I have been living by his advice, I feel fine. Every now and then I have dizzy spells, but that's a side effect of the medicine. I sometimes also have headaches. My dr. prescribed pain relief for me and they work fine when I get headaches. I must say, that I am truly blessed in that I have not suffered any great problems. Let's all hope and pray that someday, researchers will find a cure so that we won't have to take pills the rest of our lives. For those of you that are wishing to have children, I shall share this one thing with you. My younger sister was also diagnosed with the same disease. We were told that this disease was not familial. When she was diagnosed, she had just given birth 24 hrs earlier. Her ob/gyn diagnosed her. Her tumor was the size of a quarter. Surgery was recommended. My sister did not have the surgery. She to was put on parlodel and her disease is controlled, although she also takes centhroid and corizone. Since then, she has given birth to a second child. There is hope to those of you who want to have children. As far as my sex life, i'm not having any problems. The first endo. (the great one)did suggest that I completely remove myself from taking oral contra. and he recommended other birth control methods. He told me to be very very careful because taking parolodel would make me very fertile - that is - I could become pregnant very easy. I will close this book by saying, my first endo's advice will always stay with me because what he told me has seemed to work thus far and I am feeling fine. May God Bless You All! tw <mstw2u_AT_yahoo_DOT_com> guthrie, ok - Sunday, July 18, 1999 at 21:16:05 thank you chrissy for responding so quickly. Your prolactin level is really high but like you said in the U.K. it is diffrent. Did the doctor say why you have this problem without any sign of a tumor? You are right we are lucky not to have the tumor by I have to wonder what else is happening . My son has ICQ on our computer but I have not figured it out yet but when I do I'll be happy to chat. Thanks again for your response. Also please send your e-mail address so I can return messeges until then. Thanks shirley moeller <tomos_AT_bc.sympatico.ca> surrey, b.c - Saturday, July 17, 1999 at 18:57:21 thank you chrissy for responding so quickly. Your prolactin level is really high but like you said in the U.K. it is diffrent. Did the doctor say why you have this problem without any sign of a tumor? You are right we are lucky not to have the tumor by I have to wonder what else is happening . My son has ICQ on our computer but I have not figured it out yet but when I do I'll be happy to chat. Thanks again for your response. Also please send your e-mail address so I can return messeges until then. Thanks shirley moeller <tomos_AT_bc.sympatico.ca> surrey, b.c - Saturday, July 17, 1999 at 18:57:18 Has anyone had any success using the herb Chasteberry, (also called Vitex) for reducing prolactin levels? Supposedly it is an herb that has been used for centuries to restore normal pituitary gland function. Please let me know if you've tried this. Dee <wever_AT_vgernet_DOT_net> - Saturday, July 17, 1999 at 14:46:55 Anyone in the UK have a microprolactinoma? It is so difficult to find a specialist or even a GP who knows much about it. My prolactin level has been as high at 1400, but is now down to 688. However, I still suffer with mood swings, headaches, tiredness, short-term memory loss, depression and lots more. I am now on Nuvelle TS (HRT patches), I'm not menopausal, but it was found that my elevated prolactin levels reversed my FSH and LH levels. Was on Dostinex for a while, but not now. I'd love to hear from someone in the UK with similar problems. My thoughts and prayers are with you all. Chrissy <cheruk_AT_ApexMail_DOT_com> Reading, Berks - Saturday, July 17, 1999 at 07:10:33 A friend is being treated with terguride. She cannot tolerate the side effects and is losing weight. Does anybody know if 1) terguride can be inserted vaginally 2) cabergoline is available in Japan? We don't speak much Japanese, so it is extremely hard to get information in Japan. Thanks in advance, Rene. rene <rene_AT_jaist.ac.jp> - Saturday, July 17, 1999 at 05:32:12 I was diagnosed in 1985 with a pt and was put on bromocriptine.After a year I stopped the medication because of side effects. Cat scans never showed a tumor but prolactin levels were always high without the meds. I discontinued the meds for one year befor having to return to them because of high prolactin levels. Each time I had an ct scan no tumor was found. My dr told me that my prolactin levels could be caused by stress and that a small amount of meds were needed. I now take the Bromocriptine for 2 months at a time with a 6 month rest and my prolactine levels are kept low. Does anyone else have the high prolactin without a tumor?my e-mail address is tomos_AT_bc.sympatico.ca shirley moeller <tomos_AT_bc.sympatico.ca> surrey, b.c. - Saturday, July 17, 1999 at 02:35:31 I was diagnosed in 1985 with a pt and was put on bromocriptine.After a year I stopped the medication because of side effects. Cat scans never showed a tumor but prolactin levels were always high without the meds. I discontinued the meds for one year befor having to return to them because of high prolactin levels. Each time I had an ct scan no tumor was found. My dr told me that my prolactin levels could be caused by stress and that a small amount of meds were needed. I now take the Bromocriptine for 2 months at a time with a 6 month rest and my prolactine levels are kept low. Does anyone else have the high prolactin without a tumor?my e-mail address is tomos_AT_bc.sympatico.ca shirley moeller <tomos_AT_bc.sympatico.ca> surrey, b.c. - Saturday, July 17, 1999 at 02:35:28 I am a 46 year old female, (grandmother more importantly). Due to some dizzy "spells" and smelling things others did not smell, I was referred to a neurologist. On June 30, 1999, after an MRI, now the most hated word in my vocabulary, I was diagonsed with Partial Focal Epilepsy. On July 9th, I had to return for another MRI, a "micro" adenoma was found on my Puititary. I guess it can be called "Micro" if it's not in someone elses head, right? I don't know another single soul who has this ailment and am totally freaking out. I don't get to see my doctor until September and have more questions that I am sure she has time. I have adjusted to the fact that I have to take Tegretol, that my lymph nodes swell and I run fevers, that I feel like my body is having a "nerve hangerover" almost every day, but what happens now? The waiting is the hard part. Thanks for the site where I can read success stories. I know they mean as much to me as to others. I will keep this site address handy when I need a willing ear or eye as the case really is. Any suggestions on how to get though until I know one way or another would be greatly appreciated. Terri Fenner <Fennert_AT_co.travis.tx.us> Austin, TX - Friday, July 16, 1999 at 15:20:49 Researching Tricia Armstrong <parmst01_AT_sprintspectrum_DOT_com> Birmingham, AL - Friday, July 16, 1999 at 10:31:19 TRANSPHENOIDAL SURGERY EXPERIENCE: 07/01/99 I am a 36 year old, healthy female recovering from the transphenoidal removal of a 9mm secreting pituitary adenoma on July 1, 1999. Under the care of a neurologist that I trust implicitly, and a skilled ENT specialist and a neurosurgeon, my hospital stay in the Mpls., MN area was eight full days. I was home from the hospital just one day when I became severely dehydrated and was re-hospitalized for another three days in order to re-coup some of the stamina that I seemed to have lost during this process. I am surprised by how much this has taken out of me, both physically and emotionally. I don't feel like my old self yet at all. The facial swelling has gone down and the bruising around the mouth and jaw line is beginning to disappear as well. The purple coloring under my eyes appears deep and may take some time to disappear completely. While hospitalized, I was given a cocktail of percaset (sp?), morphine and valium for pain, and had the most horrific, horrific nightmares imaginable. I was discharged on no medication and have not had to take any since for pain. I am, though, having a very hard time sleeping at night or even napping during the day. I feel as if I have post-surgical depression, if that's even something people acquire after a major surgery. I am so blessed to have as many loved ones, both friends and family, involved in my life as I do, and maybe I'm expecting to get over this "hump" sooner than what I am supposed to. I'm unsure about how soon I should return to work and what kind of parameters I need to set on myself when I get there. I guess I have a lot of unanswered questions that I hope those who have had this experience can offer insight in to. Serious respondents only, please. kay <evergreen7802_AT_yahoo_DOT_com> - Thursday, July 15, 1999 at 01:36:28 I am 30 years old, and have had a pituitary tumor for three years. I was diagnosed by an MRI in '96. Since that time, I have had yearly blood tests to check my prolactin and one other MRI earlier this month. My prolactin levels have tripled since '96, and I still haven't been put on any medications, or had any type of treatment. I have only seen my OB/GYN for my condition, and I fear that he might not be taking an aggressive enough approach. Is this "wait and see" attitude common? And am I threatening my health by not getting a second opinion? Any help would be appreciated. Thanks. Take care. Denise <denise59_AT_gateway_DOT_net> Sacramento, CA - Wednesday, July 14, 1999 at 21:15:08 i haven't written in a few months. i've had a micro- prolactinoma for over 20 years. i've hardly had any periods and have had a problem with fatigue and being unable to get too stressed or i get headaches. i just have to take good care of myself and watch my diet due to hypoglycemia. i went to a doctor because i was concerned with osteoporosis due to lack of periods. she sent me to an endocrinologist who did an mri and put me on dostinex. i got periods but they were unbearable. i called to tell her about them and she insisted it was just something i ate. she said to keep taking the dostinex and i'd have to keep taking it - at $224 a month - for the rest of my life. she said the tumor wasn't as big as she first thought because there was a small hemorage there - probably caused from the bromocriptine i took 10 yrs. ago. this made me wary of the dostinex. i read that if a pit tumor is smaller than 1 cm. and doesn't cause much trouble and and you don't wish pregnancy - it doesn't have to be treated at all. i decided to go that route. i'm taking vitex now - an herb that is nourishing to the pituit- ary and said to decrease levels of prolactin. i'll have the tumor monitored to make sure it doesn't grow and treat myself as though i'm menopausal. i'm happier with that plan. lisa lisa <lily.brabant_AT_centuryinter_DOT_net> - Wednesday, July 14, 1999 at 19:55:29 16 years post surgery & radiation treatment...and living a great life. Thanks to GOD and better living through chemistry. jim gardner_AT_brabmij.tir-lakes_DOT_net <brabmij_AT_tir-lakes_DOT_net> humansville, MO - Wednesday, July 14, 1999 at 01:22:07 thanks to dr aliusa i would have die but i'm still not 100 persent yet with the grace of god i will get their john h barton <febarton_AT_worldnet.att_DOT_net> fort washington, md - Tuesday, July 13, 1999 at 17:38:29 I'm 28, have a 5mm pituitary tumor which is producing prolactin above 101, and have a period every other month. I used to be regular, like clockwork. Does anyone know any alternative approaches to treatment of this aside from Dostinex? More importantly, does anyone have any information at all on how these are caused?? Thank you. Dee <wever_AT_vgernet_DOT_net> - Sunday, July 11, 1999 at 16:20:05 I have no coment. Giorgi Manceski <gmanceski_AT_yahoo_DOT_com> Prilep, MK - Friday, July 9, 1999 at 18:19:28 I am two weeks post op for a non-functioning pituitary macroadenoma. I had a transphenoidal hypophysectomy. Things are going well. The most uncomfortable part for me was the nose. I have had sinus surgery so they put splints in my nose. Those were very uncomfortable and caused me to mouth breathe most of the time for 2 weeks. I was fortunate. My tumor was soft and squisy and my neurosurgeon thinks he got most if not all of the tumor. I am taking cortisone (30mg a day) and we're checking my thyroid. I have blood work in two weeks and a follow-up MRI 8 weeks post op. We won't know what's left of the tumor till the MRI is comleted. I am on antidepressents (serzone) and sleeping pills (ambien). I tire easily and do a lot of reading and watching tv. I had bad headaches the first 2 weeks but they are getting much better. Just using tylenol instead of prescription pain killer. I now think there is life after brain surgery!!! Lynne <lfleming_AT_iquest_DOT_net> IN - Friday, July 9, 1999 at 15:20:08 The PTNA has a "Ask the expert" section ...questions are selected and then posted with a answer. www.pituitary_DOT_com Another great patient site to check-0ut is http://members.aolcom/tomajestic Missy - Friday, July 9, 1999 at 14:16:14 I'm a 31 woman, live in Chicago,I just discovered this "guestbook," and I love it! What a great way to learn that plenty of others out there have the same problems. I had never heard of another soul having a pituitary tumor before. Anyway, while I do love hearing others' concerns, questions, etc., does anyone know of another site or area within this site where actual doctors provide broad answers to some of these questions? I would really love to hear the MEDICAL answers to some of these questions. Also, if anyone has info they could forward to me about Dostinex, surgery to remove a pituitary tumor, or the risks of taking the birth control pill (Ortho-tricyclen) WITH Dostinex, I would really appreciate it. My doctor wants me to go see a neurosurgeon next week (after having treated this with medication for about four years or so) so I'm really nervous! Anyway, if anyone wants to commiserate with me about our crazy problem, feel free to email me! Thanks. Vicki Brown <vbrown_AT_northshoremag_DOT_com> Chicago, IL - Friday, July 9, 1999 at 12:27:38 I have been diagnosed with cushing's syndrome and am going to the nih in md for two weeks on the 24th of july. I am kind of scared and feeling alone. are ther any support groups here in san diego? I do not have an e-mail address as i am using someone elses computer. i do not know what to expect. if there is anyone out there who can give me some support off the internet, perhaps through the u.s. mail please let me know. timothy in california <none> san diego , ca - Thursday, July 8, 1999 at 15:46:16 The Pituitary Foundation I am a member of the Manchester group an I act as Welcoming Officer to new mwmbers. I have had two pituitary tumours and two operations to remove them. I suffer from hypopituitarism. I inject myself with growth hormone daily as a participant in growth hormone trials at Christie Hospital in Manchester. However, I cannot find a solution to the following problem.Could anyone tell me where i can purchase some kind of portable, miniature fridge unit suitable for keeping my loaded growth hormone injection unit Genatropin Pen in for a few days at a temperature of 2 oC - 8 oC. It would need to be battery operated but only needs to be torch size and possibly adapt to mains electricity. The reason that I need this is so I can go away on holiday for a few days like camping, or staying in hostels where no fridge exists or is not considered secure enough to leave unattended. The lack of such an appliance is restricting my ability to take short breaks. My doctor tells me that there is no way round this but I cannot believe that in this high tech age of the year 2000 that there is no such thing as a reasonably priced,battery operated, tiny, mobile fridge. Can anyone help? christine stephen <lizdean10cheddar_AT_yahoo.uk> manchester, - Wednesday, July 7, 1999 at 20:11:01 I hope this doesn't fall into a medical question, but I'd like to know what percentage of patients with pituitary adenomas need surgery to remove it versus just taking medication (I'm on Dostinex) for the rest of their lives? Also, is it invasive surgery or can a neurosurgeon use the "Gamma Knife," which I belive is an outpatient laser technique, if I'm not mistaken. I just found out I may need surgery and I'm going to see a neurosurgeon, so I'm quite frightened, needless to say. Thanks! Vicki Brown <vbrown_AT_northshoremag_DOT_com> Chicago, IL - Wednesday, July 7, 1999 at 18:07:10 Hello...I am 27 and was diagnosed with a 13mm Hyperprolactinoma at the end of April 1999. I am currently taking 3.0 mg of Dostinex and my prolactin level has come down from 364 to 109 on June 28th. My doctor tells me that I will have another MRI when the level gets below 50 and am anxious to know that the tumor size is reducing as well. Please contact me with any information you have on whether levels can reduce without tumor size reduction. Thanks! I am also still struggling with the weight gain and concerned about trying to get pregnant in the future while on Dostinex. Any info. on this would be great too! Thanks again! Michelle H. <dougshel_AT_bright_DOT_net> small town, OH - Wednesday, July 7, 1999 at 11:49:46 Hello everyone. I was wondering if anyone had any information or similar experiences to mine. I am 28 and I was diagnosed with a prolactinoma 8 years ago. I had the surgery in 1995, but it was only partially successful. Prior to it, I was taking 10 mg of Parlodel per day. After the surgery I went down to 1.5 mg per day. Then my endocrinolgist put me on the birth control pill to regulate my cycle. It did, but I was not comfortable taking it as I would prefer to encourage my body to ovulate, as I plan to have children some day. To cut a long story short, I stopped taking the pill 8 months ago and have not menstruated since. I have gone back to my endo but she does not really put a lot of effort into treating this. She recommended estrogen replacement, but I am not comfortable with this either as I have read about long term side effects and health risks and I am not even 30 yet. I don't want to take it for the rest of my life. Recently, she instructed me to take 5 mg of Parlodel per day. I am unsure what effect this will have on my estrogen, which she says is low. My prolactin is about 120. I tried seeing another endocrinologist, but he does not seem to be much better. I live in Canada, so unfortunately Dostinex is not an option. I would appreciate any feedback that anyone might have. I am hoping to have children in the next two or three years and am getting anxious about my being infertile. Thanks for all your help and support! Alison <baileyau_AT_autobahn.mb.ca OR AlisonA_AT_tds.mb.ca> Winnipeg, MB - Sunday, July 4, 1999 at 21:31:07 I had transphenoidal removal of my pituitary tumor in April 1999. The tumor was completely removed and the operation was thought to be a success. My prolactin level two weeks after surgery was 18. One month after surgery my prolactin was 65 and it is currently 59. Has anyone experienced elevated prolactin level this soon after successfull surgery? My doctor and I are searching for answers as there does not seem to be a reason for the elevated prolactin. I would appreciate any info. Thank you. Jen <j-dprox_AT_erols_DOT_com> Ellicott City, MD - Wednesday, June 30, 1999 at 21:29:46 I just discovered this site and am hoping to find some answers to my questions. I have been seeing an endocrinolgist for elevated prolactin levels and have been taking Cabergoline. I also have elevated androgen levels and low growth hormone levels, neither of which are being treated. Do those hormones readjust with the treatment for elevated prolactin or do you need to treat those separately? Another question: I am incredibly moody and irritable. Is this a symptom of any of any of my hormone problems? ANy info is appreciated. Jessica Clark <seijessica_AT_hotmail_DOT_com> NY, NY - Wednesday, June 30, 1999 at 10:09:30 A wife of a couple in my church was diagnosed with a high level of prolactin in her bloodstream. The doctor prescribed Bromocryptine to resolve her issue so that she could conceive and carry full term. It has been almost a year to the date when their son was born. She has since pregnancy gone through full mood swings and depression to the point of attempted suicide and possible mental breakdown. She is not the person that we knew a year ago. We thing that this is attributed to a hormonal problem brought on by this Pituatary tumor. She received a cat scan and a MRI. The pictures showed a pea sized tumor at the time. With the medication that she was receiving and the regimen she was under by her doctor, the prolactin level was brought under control and she conceived and had a son. Now we have issues with her psychological condition. She is moody. She has rejected her husband who is totally dedicated to her and she is carrying on a illicit affair with a person out of state. Are these carryings on indicative of someone with an out of balance pituatary gland and endocrine system? What steps should we take to first approach her to have an exam and what precautions should we take concerning her son. Is he in danger? The husband is still dedicated to her and wants to reconcile their marriage, but her, what can only be describe as mean attitude towards him, suspicions that he is running around on her has her driven to this other man. Now his mother is an RN and she had been talking with a nuerologist and they have concluded that this might be a classic case of this type of physiological problem which can only be attributed to this pituatary problem What is our prognosis? Dakota Baptist Church <dbc_AT_minot_DOT_com> Minot, ND - Wednesday, June 30, 1999 at 04:06:52 My heart goes out to all that are suffering...Thanks for your web site...Mike Michael Cardinale <U-CAN-FIX_AT_worldnet.att_DOT_net> Carmichael, ca - Tuesday, June 29, 1999 at 14:31:09 I JUST SIGNED IN EARLIER BUT AFTER READING SEVERAL OF THE OTHER COMMENTS I FELT THE NEED TO PROVIDE MORE INFORMATION. NOVEMBER 1998 I WAS DIAGINOSED WITH A TUMOR ON MY OVARY. DURING MY SURGERY THE TUMOR WAS MUCH LARGER THAN WHAT WAS PREVIOUSLY THOUGHT. I HAD TO HAVE MY LEFT OVARY REMOVED ALSO DUE TO THE SIZE OF THE TUMOR. THE TUNOR WAS CALLED A DERMOID TUMOR. LAST MONTH I HAD A PROLACTIN LEVEL TEST DONE. IT CAME BACK ELEVATED AND I WAS SCHEDULED FOR AN MRI. A TUMOR WAS FOUND BUT I DO NOT RECALLTHE SIZE OR THE LEVEL OF PROLACTIN. I PLAN ON CONTACTING MY DOCTOR TOMORROW TO INQUIRE. I'VE BEEN ON DOSTINEX FOR 1 MONTH AND HAVE EXPERIENCED SEVERE HEADACHES AT TIMES ALSO UPSET STOMACH AND DIARREHA. IT COULD BE WORST SO I DEAL WITH IT. I REALLY HOPE THE MEDICATION WORKS. MY DOCTOR ALSO FOUND AN ENLARGED LYMPH NODE IN MY NECK. HE SAID HE WILL MONITOR IT AND SEE IF IT GROWS. I AM CURRENTLY 32 YRS OLD. WHEN I WAS 17, I HAD EXPLORATORY SURGERY ON MY OVARIES. I HAD 6 PINTS OF FLUID REMOVED FROM THE CYST ON MY RIGHT OVARY. THIS CYST NEVER SHOWED UP ON AN ULTRA SOUND. IMAGINE THAT!!!! THREE YEARS AGO I WENT INTO PREMATURE LABOR AND DELIVERED OUR FIRST SON. HE DIED AT BIRTH. I WAS IN THE HOSPITAL FOR 1 WEEK TRYING TO DELAY LABOR. BUT TO NO AVAIL! SINCE THEN WE WERE GIVEN ANOTHER BEAUTIFUL ANGEL. WE HAVE A HEALTHY BOY WHO IS NOW 2 YRS OLD. I OFTEN WONDER IF THE PAST TWO TUMORS WERE NOT FROM THE MEDICATION I WAS ON FOR THE WEEK IN THE HOSPITAL. ANYONE WITH INFORMATION OR SIMILARITIES PLEASE RESPOND! ANGEL HUGS!!!!!!! GERLINDE <bubba96_AT_epix_DOT_net> lykens, pa - Thursday, June 24, 1999 at 21:01:10 I HAVE A PROLACTINOMA WHICH WAS DISCOVERED BY MY GYNOCOLOGIST. I AM CURRENTLY TAKING DOSTINEX. I HAVE BEEN TAKING IT FOR 1 MONTH. GERLINDE BOND <bubba96_AT_epix_DOT_net> pa - Thursday, June 24, 1999 at 20:35:07 Hi I have acromegaly and have had surgery, I was prescrbed ocrteotide but suffered with stomach upsets, do you know if the trials on the monthly doses have been completed and if so what was the result? I know you don't like to answer questions but I had to ask! Terry <terry_AT_tokeeffe.freeserve.co.uk> Keighley, - Thursday, June 24, 1999 at 16:07:36 Diagnosed with 5mm pituitary prolactinoma and searching for background info on treatment/causes. Kim Luton <kp_l_AT_defcu.org> Dover, DE - Wednesday, June 23, 1999 at 10:06:07 This is my first time. EUGENE HAYNES <eugene.haynes_AT_hds_DOT_com> - Tuesday, June 22, 1999 at 03:11:12 EVRYTHING IS O.K Kantiltziadis Isaak <kanthl_AT_the.forthnet.gr> THESSALONIKI, - Friday, June 18, 1999 at 18:32:02 Just a reminder to people, we have a support group in New England. We have taken the summer off, but will have another meeting in September. IF you are interested, please contact me. Diane <parisrd_AT_netway_DOT_com> Boston, MA - Thursday, June 17, 1999 at 15:08:34 Hi, I am really glad I found this site. I was dx with pit. tumor when I was 15. I really didn't know what all things changes would do to my body. I didn't realize it was so serious, I was basicly warned that I could lose my sight if I didn't take my meds. The parlodel which made me gag on sight. I stop taking and when did take it was only when I got a really bad headche. A few years later a was offer Dostinex which was an answer to my prayers. I have no really noticeable side effects. But now I am worry about the damage that I have already done to my body. I worry about the effects of too much growth hormone with might have cause other fibrous or cancers to form in other place and also the loss of bone desity. I scare that I might have stress fractures already!! and I am only 23. I really scare of several others ailments that seem to be presenting themselves. I am so gratefull for dostinex but Full of remorse for not trying hard enough to compli with the bromocriptine when i was suppose to. If any has any expereince dealing with the long term complications of a prolactin secreting tumor please let me known Tie <Tie_AT_looksmart_DOT_com> chicago, il - Wednesday, June 16, 1999 at 19:01:05 I've skimmed through some of the comments in the guestbook and can't help noticing that there are many of us going through very similar medical problems, whether treated or untreated. I am 32 and have had strange medical problems since age 23. At age 23 I gained 30 lbs. in 3 months (after being thin and healthy & maintaining a normal eating habit), started getting cold sores every month with my menstrual cycle (had very bad pains with cycles), started having cluster headaches and migraines (without knowing what they were or yet being diagnosed with them), started having problems with acne and had blood in my stool (for 2 years). I had tests run and the doctor said there was nothing wrong with me. I went on a starvation diet and lost 20 lbs. (needed to gain 10 lbs). At age 25 I saught a second opinion for the bleeding in my colon and after having a colonoscopy, found a huge pre-cancerous polyp. At age 26 I gained 30 lbs. in 3 months again, had severe problems with acne, consistenly got cold sore monthly with my menstrual cycle as well as as migraines & cluster headaches & felt very lethargic all of the time (the same exact things happened to me again). I went back to the doctors and they said I was a hypochondriac. Again I dieted, but was unable to lose the weight like before. At age 28 I went to a new doctor and was diagnosed with endometriosis after having a laparoscopy/laparotomy. This doctor also put me on Acutane for severe acne after trying all other medications. Lastly he put Lupron to stop my menstrual cycles for 6 mos. I ended up losing the weight and finally felt great. At age 29 all of the same problems happened again. After again seeking medical help, I was finally diagnosed with hyperprolactenemia, hypothyroidism, goiter and migraines & cluster headaches. My husband and I had also been trying to conceive for the past 5 years with no luck. I had an MRI to check for a pituitary tumor—they said it was inconclusive—maybe micro in size. I'm 32 now and have still not been able to lose the extra weight. My migraines & cluster headaches are worse than ever and come consistently with my menstrual cycle. Between the endometriosis (cramps) and the headaches every month, I suffer tremendously. In the past 6 mos. I've noticed a high escalation in hormonal inbalances, mood swings, depression, blurred vision & progression with the cramps & headaches. I feel completely out of control. I recently had another MRI, with no changes. My prolactin & other hormones are again way out of order. I am seeing a specialist in Boston on Friday. Hopefully I will get some answers. My family & husband are very concerned, as well as me! I just want to be healthy again! I would do anything! Atleast I now have the comfort of knowing that I am not alone in dealing with these medical problems. Has anyone else experienced anything similar to me? I've gone through a handful of doctors who simply dismiss problems such as mine because they are out of their scope of study. If you have any input, please let me know! Thanks! Sorry for the book I've written & I hope my spelling is ok. Stephanie Donald <stephdon_AT_banet_DOT_net> Nashua, NH - Tuesday, June 15, 1999 at 22:26:48 What are the side effects of taking Bromocriptine? What are your experiences with taking alternatives? Thanks for your help. Greg Peiffer <gpeiffer_AT_se-iowa_DOT_net> Sigourney, IA - Tuesday, June 15, 1999 at 11:18:04 What side effect does Dopergin have for pacients with prolactinoma? I appreciate any comments. Thanks Vicky Rojas <meca_AT_telesat_DOT_com.co> Cali, - Monday, June 14, 1999 at 00:32:40 I had written awhile back asking to hear from anyone with MEN type 1 or 2. Just found out my Address was not working please use the new address. Need to hear about experiences with pituitary, thyroid, parathyroid, pancreas, etc. Penny Penny <pennkev_AT_hotmail_DOT_com> Lexington, Ok - Friday, June 11, 1999 at 14:28:53 I am 30 years old, recent diagnosis of 2cm Macroprolactinoma, slight pressure on optic nerves apparently. My only symptoms are very slight vision field disturbance and amenorhea. So far, I have seen a neurosurgeon, who is recommending immediate surgery with complete removal of the gland, followed by radiation therapy, and life-long hormone replacement therapy. ! I feel as if I am being bullied into surgery. Am seeing endocrinologist next week. Any information, especially from people with 2cm+ macroprolactinomas would be appreciated. Also: if I do have to do the surgery, I would appreciate any neurosurgeon references for the San Francisco/marin area. Thanks in advance. Marianne <mainwalter_AT_aol_DOT_com> san rafael, ca - Thursday, June 10, 1999 at 22:12:37 Was diagnosed with prolactinoma about 15 yrs. ago. Bromocriptine side effects were unbearable, so I was just being monitored instead. Now the tumor is getting too close to the optic nerve and surgery is the next step. I'm scheduled for transphenoidal surgery in one week and sure would appreciate anyone's thoughts or comments about their own surgery. Barbara <Rtoll_AT_worldchat_DOT_com> Hamilton, Ont. - Wednesday, June 9, 1999 at 23:48:24 Hello everybody! This is my first time to this website! It's so cool to be able to talk to other people going through the same thing!! I was diagnosed with a prolactinoma 8 years ago, and was taking 7.5mg/ daily of Parlodel up until this past Monday, when I switched to Dostinex. I have lots of articles on Dostinex, but I would appreciate hearing from anyone who can tell me about their personal experience with Dostinex. Especially if it has been good. Ha ha.:) Sarah <millardjs_AT_msn_DOT_com> Boulder, CO - Wednesday, June 9, 1999 at 20:08:09 I posted an e-mail on this site on Sunday, May 16 and since then I've had so many people reply to me with info regarding Prolactinoas and Dostrinex. Thank you to everyone. Just letting you know I started on Dostrinex (1 tablet per week) on May 17th and on June 7th my period finally arrived after ceasing in Nov '98. Hopefully things will be back to normal and we can start trying for a baby soon. Dostrinex side effects for me were minimal, a bit of dizziness and nausea for only a few weeks. Good luck to others taking it. Regards Danielle Danielle <adware_AT_ozemail_DOT_com.au> - Wednesday, June 9, 1999 at 01:28:41 hi my name is bev and my 10 year old daughter was diag with a pitutary tumor 5 yrs ago she also had surgery and needs alot of replacements i was just wondering if their are any other children under the puberty age with this and if they have now reached puberty or if anyone has any information that might be helpful for me as my daughter reaches puberty the doctors don't seem to have any answers for us they say she was the youngest child that they treated so i like some input if anyone has any amy my daughter also suffers from chronic fatigue and complains of ach in her joints she is very tiny compaired to children her own age and could not take the growth hormone but she takes cortisol and ddavp and also has some arythmia she also suffers from chronic sinus infections that came from the surgery she has had dinus surgery to try to help but it hasent worked thank you bsmith_AT_highpines_DOT_net bev smith <bsmith_AT_highpines_DOT_net> jonestown, pa - Tuesday, June 8, 1999 at 23:26:24 Can anyone recommend a pituitary specialist in the Seattle area? Nancy <brntnghm_AT_ix_DOT_netcom_DOT_com> Seattle, WA - Tuesday, June 8, 1999 at 11:12:17 I have written to some of you. I was treated for pituitary cushings in 1984 up at Mass. General. Dr. Zervas completed the surgery. Dr. Kliman, now retired admitted me from recommendation from my dr. in Georgia. They know so much more now about pituitary problems than they did then. However, let me reassure others, I had two beautiful boys who are now 19 and 15. I still have many medical problems related to endochrine needs and some they aren't sure about. I believe they are related as the pituitary is the "master" gland. I am very thankful that they now have medications to try and some good response. I was one of a very few who had transphenoidal surgery in the 80's. At that time I felt like a pioneer, of sorts. I am thrilled if they learned even the smallest shred of help from my study. Take heart, and take a hold of your life. If you are not happy with your doctor's response or lack of it, get a second opinion. Too many people are meant to feel like they have a psychological problem when it is actually physical. I was one of those. Luckily, I had one great doctor who finally told me he would stay with me until they knew what was really wrong. It took seven years and many illnesses later for it to show up in my bloodwork. If I can help any of you please feel free to write. I have all ready met one e-mail friend in person, just months after writing her back and forth from seeing her message. Good Luck to all. I will continue to pray for you, and look this site up periodically. Happy Spring. Sharlene <patrickp_AT_camcomp_DOT_com> Saint Marys, GA - Monday, June 7, 1999 at 22:48:09 Hello to everyone!!! It has been confirmed that I have very high levels of Prolactin. Thank God when I had my Ct Scan was told there is no tumor. They cannot understand why I have such high Prolactin levels.I was put on Bromocriptine but had very bad side effects.I have now been pre-scribed Cabergoline I'm not sure wether to take them?? I think I should have been given a MRI scan...can anyone give please give me some information!! I've been having problems with my vision & alot of headaches i.e when I get the headache its so disabling I have to stop what I'm doing but it never last too long I'd be grateful for any advice THANKS!!!! Alex <scousealex_AT_hotmail_DOT_com> Liverpool, - Sunday, June 6, 1999 at 16:52:16 I am 26 years old and recently diagnosed with a 5mm pituitary microadenoma. I have all the characteristics of cushings disease and then some. The last 13 years of my life have been horrible and although I have been diagnosed with Polycystic ovarian syndrome, my gut feeling tells me otherwise. I had one 24hour urine cortisol test. It turned out normal. They want to do more but emotionally and mentally I can't handle going to more doctors and getting more tests done. I have anxiety attacks every time I try to go into a doctors office. I never used to be like this. I feel like I'm losing my mind and recently I can't breath when it is humid. I was told I can take a leap of faith if I want and have the tumor removed without the tests. Because of my problems I think I have to take this leap before I don't have any strength left for surgery. I would really like to know peoples stories of what their transphenoidal surgery was like. Did you feel pain during and/or after surgery? Were there complications? Please be truthful. It is important to me to be prepared for what lies ahead of me. I will be having my surgery done by Dr. Edward Laws in Virginia. I really apreciate any information or moral suport you can give me! Thankyou! K.C. Becker <n9tdb_AT_iwc_DOT_net> Round Lake Park, IL. - Saturday, June 5, 1999 at 23:17:43 I have had a two procedures, transphenoidal and craniotomy to remove a lemon sized pituitary tumor. I have also been through radiation treatments. I have created a web site to provide real life information to others with the same problems. If you need information about this ailment please see my web site at the address below. If I can answer any questions please do not hesitate to write me. Good luck, God bless and keep your head up. Regards, Steve Steve Howard <showard_AT_one_DOT_net> Cincinnati, OH - Saturday, June 5, 1999 at 22:53:41 Please send me any info. on new treatments and breakthroughs for putitary tumors. Kendra Clark <Raybee_AT_cris_DOT_com> - Friday, June 4, 1999 at 11:37:13 Hi! my mother who is 45 has had a pituitary tumor on right side discovered in 1991. It is approx. 6.5 mm now, and has not shown any change. She has been on 2.5 Mg of Parlodel (or bromocriptine Is the generic name I think). Since the discovery of the tumor she has gained about 55 pounds and has become diabetic. she takes 5 mg of glucotrol a day for this. I am wondering if anyone else has had problems like this from their tumor. She has 5 children, and had a hystorrectomy in 1995. Because, she really doesnt understand computers, I am trying to help her find other people that have had the same experience. She is primaraly worried about her weight gain and wants to know how other s have controled this. Also, she wants to know the life expectancy for someone with this type of tumor. Her papers also say that her prolactin is high, and say that they will operate if the tumor becomes 10mm. Please, if anyone can give her some advice, I would appriciate it. Her name is Janet, and she is psyched that there are others like her. Thank you all. nette furgi <AF_mouse_AT_hotmail_DOT_com> Chicago, IL - Thursday, June 3, 1999 at 11:46:26 Hi, myname is simone 44 years old had problem of high level prolactin since 1984 after delivering my first bay. had 6 abortion without any valuable reason. read on the net that high prolacten can cause damage with the feotus was on parlodel for more than two years suffering from this drug. then change to noprolac 75mg one tablet a day. the level has a bit decreased till 190 after being 1930 too too high now on prolactin . any one can give me information about the high level of prolactin can cause dmage to the ombilcal cord or something similar. pls i need any help just to know the reason of these 6 miscarriage. thkns simone simone <sami_AT_infinity_DOT_com.eg> egypt, heliop - Thursday, June 3, 1999 at 09:37:33 Hi to my fellow afflicted!!! I have been perusing through these entries for quite some time since being diagnosed with Prolactinoma about 6 months ago. The tumor is 1.5 centimeters and my level is 500. I have the horrible "head in a vice headaches", so something has to be done. I had been given both Parlodel and Dostinex and have sufferred horribly with their side effects. I have been extremely ill with a rare intestinal disorder that prompted my large intestine to be removed in 92 and has left my small intestine to handle the world of food...a small intestine that is degenerating. Due to these belly problems, I am often not a candidate for heavy duty meds. I am supposed to have surgery (endoscopic) that goes directly through the nose and involves no incision , as in Transphenoidal. I am thrilled to have the chance to try this surgery, yet I read the entries about the long term effects of surgery , such as visual problems, hormonal problems involving fatigue, weight gain, decreased sex drive, etc.....and I simply cannot set a date for surgery. I really need to speak to someone that had the courage to undergo the surgery and relay some of their experience. Does everyone end up having to rely on some sort of hormone. I can barely afford to keep myself and my intestine alive, what with the medication expenses. I am generally a super optimistic person when I believe in what I am doing. I am just so beleagered by my other condition, that the last thing I want is to have a bunch of new obstacles. Help!!!!!I would really appreciate hearing from anyone that has had the courage to both set a surgery date and proceed. You people are amazing !!!!!!! THANKS.....Robyn Robyn <Wilton-D_AT_Prodigy_DOT_net> Phila, Pa - Tuesday, June 1, 1999 at 19:47:12 Hi to everyone. I am back and and had my surgery a week ago today. I did great this time and was so anxious to talk to all my great friends I have meet here. I have not yet regained all my vision back yet but maybe in time. I will be having the radiation in about three months so hopefully this time it will for sure get this thing for the last time. I am taking medication now as my sodium is dropping and will keep an eye on that. The surgery seems like it went easier this time but I think It was that I was just aware of what all was going to happen and I knew what to expect. The Dr said the tumor was very large actually larger than it was in 93 when he did the first surgery. I'm just thankful it is over and I am sitting here talking to all you wonderful people and I just wanted to say that I am here for anyone who just needs a friend to talk to or is about to have a pituitary tumor removed and might want to ask some questions. I feel like a pro here with having it twice. I would like to know more about what to expect from the radation treatments. Love,Sherry Sherry <sglc_AT_lecnet_DOT_net> Texas - Monday, May 31, 1999 at 17:28:30 I was recently (5/99) diagnosed with a pituitary macroadnoma after having trouble with menses, migraines, and infertility. I am from a small town and trusted in my ob-gyn for too long before choosing to go on to a specialist. In one months time, I had bloodwork and an MRI to find out what was causing all of this. I am so relieved that my last bloodtest showed that my prolactin level was coming down significantly from the Dostinex and I have had bearable side effects that have mainly only made me fatigued and have a few headaches (Thank God for not too much nausea!) My doctor does not seem concerned about my weight gain over the last two months (one size),but it has been very difficult for me to handle (especially with having to be in my brothers wedding throughout this). If there is anyone with any information on weight gain with pit tumors, estrogen, progesterone, or Dostinex, please let me know. Thanks! Michelle H. <dougshel_AT_bright_DOT_net> OH - Monday, May 31, 1999 at 11:23:15 About six years ago some pretty strange things started to happen to me.I started making mistakes at work forgetting important little things ,I wasn't able to concentrate,my sex life tottally came to a halt, my emotions were out of control.I had to quite my job and was diagnosed as being clinically depressed.A year or two went by and I noticed my breast becoming very tender and sore,constent headaches.I thought I was going crazy.After informing my family DR.he set up an appointment with a endocrinoligist who in turn set an MRI and blood work. I was then diagnosed with a pituatary tumor the Bromocriptine has lowered my prolactin levels from 180 to almost normal.I'm still waiting to see if the size has decreased any from 10mm. Although I'm happy with those results I don't understand why my docter will not help with the constant headache I've ask about pain medication but he does'nt prescribe anything.Can anyone tell me why? Does pain medication mask symtoms of this condition.THANKS FOR THE INFO IT'S NICE TO KNOW WE'RE NOT ALONE Paul <paullynn_AT_reach_DOT_net> - Monday, May 31, 1999 at 02:01:46 Is anyone aware of any studies done regarding external radiation to the pituitary tumor (benign)which might relate to getting cancer later in life? External radiation has been mentioned as an option but I have reservations about doing it. Barb <smandel1_AT_netzero_DOT_net> oak park, mi - Saturday, May 29, 1999 at 23:19:59 I was diagnosed with Cushing's Disease and had my first transphenoidal surgery in 1995. I had to have a second transphenoidal surgery in 1998 this time followed by radiation therapy. I'm taking hydrocortisone and levothyroxine. I'm still experiencing extreme fatigue and muscle weakness. I sometimes find it difficult to hold up the newspaper to read it or even to blow dry my hair. I take frequent joint pain for granted. Then there's all the little annoying things like kidney and gall stones. Over the past couple of years I've drawn a great deal of support from reading the letters on this site but never submitted one of my own. But I've reached one of those times of complete frustration that I'm sure most of you can relate to. I feel so crummy that I was really looking forward to my six-month checkup. My endocrinologist ordered lab work but it was only a thyroid test and the wrong one at that. As she placed her hand on my medical records she said that they contained no "support" for my inability to lead a normal life. After all other patients did. I'm in an HMO, and she's the only endocrinologist She told me to go back to my General Practitioner for help and referrals because apparently my medical problems fall outside her job description. My positive attitude is slipping. I would really appreciate hearing from anyone who can relate to or shed a little light on my situation. Nancy <brntnghm_AT_ix_DOT_netcom_DOT_com> Seattle, WA - Friday, May 28, 1999 at 06:56:20 I am a 36 year old female and in September 1998 was diagnosed with a pituitary tumor. The tumor was 1x1 cm in size and leaning against the optic nerve. Before the tumor was detected I had been having morning headaches on and off for over 1 and half. Went to several doctors and was on all different types of medication until we had the CT Scan. I had the tumor removed on January 6, 1999 by transphenoidal surgery. Needless to say, my headaches still remain almost every other morning and I feel like I'm going out of my mind. I'm at a Headache Wellness Center now and was put on Bromocriptine but it was not working now I'm on an anti-inflamatory drug. It seems like nothing will get rid of or control my terrible morning headaches. Any advice would help? Mary Jo Prevatte <reedprev_AT_msn_DOT_com> Greensboro, nc - Wednesday, May 26, 1999 at 21:55:24 My husband has been diagnosed with Prolactinoma and is being treated with bromocriptine (just started 2.5 mg this week to possibly be increased to 40 mg. Barbara Deba <barbara.deba_AT_dot.state.co.us> Denver, CO - Wednesday, May 26, 1999 at 11:40:15 My father died with complications from acromeglia. There was no history of the disease in our family. He did however serve in the US Army Chemical Corps, the 9766th Technical Unit, at Fort McCleelan, Alabama in around 1954-56. Is there any known incidence of acromeglia in other veterans from that unit? If anyone can point me where to look for this information I would be very appreciative. Ilene Antelman <antwomen_AT_aol_DOT_com> NYC, NY - Wednesday, May 26, 1999 at 01:13:37 Thank you for your information. Is there any way of obtaining assistance for sandostatin in Canada? AL & NORMA STACEY <nstacey_AT_execulink_DOT_com> Beachville, ONT - Tuesday, May 25, 1999 at 11:10:10 Hey, this is really neat. I never realized there were so many people with similar problems. I had sugery to remove pit tumor in 1980. I lost the vision in my right eye and partial in my left. I'v gotten used to that but I'v never gotten used to the chronic fatigue and the barage of meds I take. I was fortuna te to take Pergonal 2 years later and become pregnant. My twin sons just turned 17!!!!..... (I wish I could type that good). I would love to hear from anyone using growth hormone as replacement therapy. I just learned of it from this site and I'm very interested to learn more about it. Thanks Nina Lolio <chal_AT_erols_DOT_com> Hammonton, NJ - Monday, May 24, 1999 at 00:32:00 No comments sofar Lindtjorn <lindtjor_AT_skk.fuchinobe.slb_DOT_com> - Monday, May 24, 1999 at 00:31:42 I had a tumor removed from my pituitary gland when I was 15 years old. That was 19 years ago!! I don't think about it too much anymore as taking medications, having blood drawn and doctor's visits have become a way of life for me. I was reading some of the entries in the guestbook and do not recognize a lot of the lingo/terms being used. I imagine it is due to medical advances in the last 19 years and the fact that I was only 15, so they didn't tell me alot. My major symptoms were the vision in my left eye was affected and I was not having periods. I was in the hospital for 2 weeks. An MRI I had a few years back showed nothing but scar tissue, which is a good indication that they got it all. If I can help any of you in any way, please contact me. I feel I am proof that these surgeries are successful and you can lead a normal life. Karen S. <tweetykse_AT_aol_DOT_com> - Sunday, May 23, 1999 at 22:54:05 I'd like to hear from anyone suffering from Hypothyroidism and Prolactinoma. Are you taking Synthroid, Parlodel or had any surgeries, etc? Lisa Hoffert <LAHOFFERT_AT_AOL_DOT_com> Reading, PA - Friday, May 21, 1999 at 16:05:40 Hi I just wanted to let some of my friends know that I will be having my surgery Monday. My Dr called this evening and said the tumor was causing me to many visual problems so it needed to go ahead and come out. I urge anyone who is having visual problems to seek help soon. This can cause permanent visual problems for life. It has scared me now because I can't see hardly at all our of my left eye. Thank you for all your kindness and friendship. Love,Sherry Sherry Clarkson <sglc_AT_lecnet_DOT_net> TX - Thursday, May 20, 1999 at 23:11:38 Hi I am 29 years old, with three children, I have just had my uterus out because my doctor thought that my bleeding excessively, fatigue, depression, passingout, headaches, was from fibroids. But was told several months before the operation that I was producing to much progestone. My grandmother was diagnosed with pit. tumor. She is on medication for this. Is this hereditary? I am really scared that I am being pushed under the carpet. My children need me around.............help me. thanks Kimberly Tetu <KimberlyTetu/DHHS/FamilyServices/Portsmouth> Portsmouth, NH - Thursday, May 20, 1999 at 16:02:23 Hi I am 29 years old, with three children, I have just had my uterus out because my doctor thought that my bleeding excessively, fatigue, depression, passingout, headaches, was from fibroids. But was told several months before the operation that I was producing to much progestone. My grandmother was diagnosed with pit. tumor. She is on medication for this. Is this a herititary? I am really scared that I am being pushed under the carpet. My children need me around.............help me. thanks Kimberly Tetu <KimberlyTetu/DHHS/FamilyServices/Portsmouth> Portsmouth, NH - Thursday, May 20, 1999 at 15:57:37 My wife has just been diagnosed as having a microadenoma. WE have been shocked at how little seems to be known about why they occur or how effective treatment will be. She is now starting to take bromocryptine and I guess we just have to wait and see how effective it is. Easy for the doctor to say!! She's to get another blood test in two weeks to check levels and then another MRI scan in 6 months. Keith Muir <keith_muir_AT_standardlife_DOT_com> Edinburgh, - Wednesday, May 19, 1999 at 03:22:34 Hi I just sent a message re: my pituatary tumour which is combined prolactinoma and acromegaly. My email address was incorrect tlhamer_AT_bc.sympatico.ca Lisa <tlhamer_AT_bc.sympatico.ca> - Wednesday, May 19, 1999 at 00:57:56 I am a 30 year old recently diagnosed with a prolactinoma and acromagely. My tumour was initially 3mm and has shrunk with Bromocryptine down to 2mm. Although my prolactin levels are going down the medication is not affecting my growth hormone levels and we are now considering surgery. I would love to speak to anyone who has a dual tumor like mine to compare treatment approaches. Also anyone who has had surgery for a macro tumor what it was like, success rate etc. I feel alot like a guinea pig right now. Lisa <tlhame_AT_bc.sympatico.ca> North Vancouver, BC - Wednesday, May 19, 1999 at 00:54:29 Greetings from Edmonton. I just wanted to say hello to all my new friends dealing with all the trials and tribulations of having a pit. tumour. Mine is a non-functioning pit. macroadenoma that was 2cm and pressing on the optic nerve. Repeated visits to my gp complaining of weight gain,fatigue and depression got me nowhere . Finally,a referral to the neurologist and an MRI indicated that this all wasn't made up. I had transphenoidal surgery to remove as much of tumour as safety would allow. I was only in the hospita; for 4 days. Minimal discomfort other than the 6 ft. of packing from each nostril. Mostly I was monitored to make sure my hormones stayed on track . I was back at all my previous activities by 2 weeks, and steadily improved. (except for the slice in my golf swing) Now, it has been 1 year and I just finished my next set of appointments with the endocrinologist, MRI and Neurosurgeon. My results show some residual tumour that can't be accessed easily. However, because it is a benign tumour they will continue to evaluate me on a yearly basis . I am feeling great and try to be very positive in my outlook. A great support system from my husband and kids sure helps to keep the "what ifs" to a minimum. My vision has returned to normal but that golf swing is still pretty much the same. Cynthia <jcmacd_AT_telus planet_DOT_net> Edmonton, AB - Tuesday, May 18, 1999 at 21:43:57 I'd like to receive any new information or treatments for pituitary tumors. LISA A HOFFERT <LAHOFFERT_AT_AOL_DOT_com> READING, PA - Tuesday, May 18, 1999 at 13:12:38 I have a prolactin-secreting pituatary tumor and I would like to have more information on treatment alternatives. Is the use of Parlodel appropriate? Thank you Michelle Bennett <alb287_AT_bellsouth_DOT_net> - Tuesday, May 18, 1999 at 03:09:46 My husband has cushing diease and sydrome. I was just woundering if anyone has this diease and what experience you have had with it. thanks pam Pam Eagan <eaganp_AT_dmrtc_DOT_net> washinton, in - Sunday, May 16, 1999 at 22:32:48 Women, please be aware that prolonged lack of periods may cause bone loss. I didn't have periods for the 7 years following my son's birth until I was put on Parlodel. Now, 10 years later it seems I am close to having osteoperosis (that is 2 standard deviations below the norm, I'm 1.5 standard deviations below the norm). I had a bone density test and have been put on hormone replacement therapy even though I still have my periods with the Parlodel. I am 47 and first had symptoms at the age of 30 when I stopped having my periods following the birth of my son. Ask your doctors to do a bone density test. There are now some great medications available (I hear) that can help you to build the bone back up. Pat <pgildroy_AT_kuhub.cc.ukans.edu> - Sunday, May 16, 1999 at 17:28:36 As a result of pituitary surgery....I ended up with Diabetes Insipidus... anyone else have this? Pat <pgildroy_AT_kuhub.cc.ukans.edu> - Sunday, May 16, 1999 at 17:22:52 Although many of my symptoms indicated I had a microadenoma, I had a rathke's pouch cyst which was removed in June of '95. I'd like to hear from others with this. Pat <pgildroy_AT_kuhub.cc.ukans.edu> - Sunday, May 16, 1999 at 17:21:18 Hi, I've just been advised by an endochronologist that the reason I've had absent periods for over 7 months (and slighlty high prolactin levels) is that I most likely have a tumour of the pituitary gland (Prolactinoma). I am soon to have an MRI which will hopefully tell me if this is the case. I have started taking Dostinex and want to start a family ASAP.Does my story so far sound like what you've experienced. If so would you mind dopping me a quick e-mail as I'd like to chat to someone and ask you a few quick qus. Thanks. Danielle Danielle <adware_AT_ozemail_DOT_com.au> - Sunday, May 16, 1999 at 05:00:51 Hi everyone just thought I would let yall know I saw my Nuro yesterday and I will undergoing a 2nd surgery June 3rd. The tumor is pressing on my optic nerve to the point to where I have just about lost the vision in my left eye. This time after about three months after the surgery I will do the radation and hopefully this will be the end to surgery. I realize that once having this surgery and having to take so many medications this will be a life long thing for me to do. I want to thank so many kind people here who I have meet and thank them for Emailing me and just making me feel better to have such great people out there who understand all this. I am here too for anyone who would like to talk and maybe I can help someone in need. After all God put us here for each other and we can all get strenth from each other. I can honestly say I love you all and my prayers are with each and everyone on this site. We will survive.........Love,Sherry Sherry <sglc_AT_lecnet_DOT_net> Texas - Sunday, May 16, 1999 at 01:05:54 Hello to everyone out there. It was interesting to see the types of medication that others with prolactinonas are taking. I spent 5 years on Parlodel getting up to 35mg per day for over a year. I was on Norprolac in high doses for almost a year without any real success. I am currently taking Dostinex and I have gone up to 4 pills twice a week. I was wondering if anyone else has taken that kind of dosage. (Even 3 for several months) My risidual growth after my back to back debulking 4+ years ago is about the same size. My counts for some reason don't come down below the 15,000 - 20,000 level (on a scale of 60 -300 norm). The regular scale would be about 800. I get tired and irritable at times but I can usually get through a day feeling I accomplished something with myself which helps with my moral. My wife and I are always ready to correspond with others. We wish everyone well and success in their search for a solution that works for them. DAVID <dandfman_AT_israsrv_DOT_net.il> BETAR ILIT, - Saturday, May 15, 1999 at 15:48:38 Hi, my name is Crystal and I was diagnosed with a pit. microadenoma 7/97.(it doesn't seem like that long ago) was started on Parlodel and started my period 8 weeks later and had my son 8/98. I am currently back on Parlodel 2.5mg three times a day**I am having a little bit of blurred vision**memory loss(or just can't remember some things)I stay tired all the time and sometimes sex is painful**Idon't know of anyone I can ask or talk to about my problems* sometimes I feel very "depressed"(doing a little better since increased up tp tid. I only see my Gyn for my tumor does anyone think I need to fing another Dr. such as neurologist? If there is anyone out there that would just like to talk about their symptoms or have any suggestion about my symptoms please E-mail me. crystal <beepbeep_AT_zoomnet_DOT_net> kitts hill, oh - Saturday, May 15, 1999 at 00:58:03 I've been recently diagnosed with a 10mm growth hormone secreting pit adenoma and my endocrinologist has suggested that I see a neuro-surgeon for removal. This tumor is resting on my pit gland and my optic nerve. I have an appt. scheduled later next month (6/99) with the neuro-surgeon for consultation, but I would like to know if anyone has anything to tell me before I consult with the surgeon? What shall I ask him? My concerns right now are what are the chances of the pit tumor returning; how long is the hospital stay; approx. how much does a surgery such as this cost (since I'll be responsible for 20%); after the tumor is removed, will I have to be on medication for the rest of my life, etc., etc., etc. Any information you may have will be GREATLY appreciated. Mary Ann in Virginia / mcannon_AT_nspe.org Mary Ann <mcannon_AT_nspe.org> Alexandria, VA - Friday, May 14, 1999 at 17:08:34 searching the net for info & studies on HGH /GHRH for my mother to see what it will do (if anyth.) for idiopathic necrosis of the hip to reverse condition...as alternative to surgery. Have read Ronald Klatz. Who is working with such therapy for geriatrics in houston? merri michaels <saturday25_AT_hotmail_DOT_com> houston, tx - Thursday, May 13, 1999 at 14:59:17 Diagnosed with Pituitary tumor in Sept 1997. Taking Parlodel since that time. Still unable to get pregnant after 7 years. R.Clark <sportzfan99_AT_hotmail_DOT_com> Ky - Wednesday, May 12, 1999 at 22:09:47 I was diagnosed with Multiple Endocrine Neoplasia type 1 at the age of 20. Have had tumors on pacreas, thyroid nodules, parathyroid nodules and now symtoms of prolactinoma. Need to hear from other people with prolactinoma or with MEN1 to get info on what to expect next. Penny McAnally <macfam_AT_oecadvantage_DOT_com> Lexington, Ok - Wednesday, May 12, 1999 at 08:57:59 please add to guest book.also please send info on pituitary tumors,clincial trials c. walls <trrypod> ft.wayne, in - Tuesday, May 11, 1999 at 13:03:25 Hi! I was just wondering if anyone has problems sleeping while they are taking Bromocriptine. Jodie <ZOE070497> NC - Monday, May 10, 1999 at 21:25:00 Hi, I have just been diagnosed with "Empty Sella Syndrome" after having another MRI. I have had three surgeries to remove non-secreting tumours over the last three years. Now there is no more signs of recurrence of pituitary tumours, but instead this "Empty Sella Syndrome". I have been experiencing headaches, nausea, feeling hot and cold. My endo. has told me there is no treatment available, is there anyone out there who has the same syndrome, any tips would be grateful??? Thanks, Annika Annika Cotroneo <cotroneo_AT_rint_DOT_com.au> - Monday, May 10, 1999 at 00:32:26 I have a non-secreting macroadenoma of the pituitary and I'm looking at surgery. Anyone had surgery? What should I ask my surgeon? What information do you wish you had before surgery? Lynne <lfleming_AT_iquest_DOT_net> Columbus, IN - Saturday, May 8, 1999 at 03:54:03 Hey everybody. I was happy to find this website where people can just talk and share input about this problem that has been bothering me and I would like some advice. I see alot of girls inthis guestbook, but I know, like myself, there are a lot of guys out there with the same problem. I was diagnosed with a pitutary tumor about 7 months ago - 1 cm large. So far I have been on Bromocriptine and once I reached up to 20 mg a day, my prolactine level was down to 149 from way above 200. The normal level in a guy should be from 0-40. So I switched to Dostinex and am taking it now. My level went back up to 179 and then I increased to 2 pills a week it went down to 150 something. These levels are still not satisfying me - anyone else not reacting to the medication ? Anyone trying something else that may help and I can turn to my doctor with. I would greatly appreciate it. I am 25 and in college ( I was in the military for 3 years) and becuase of this problem my testoserone is VERY low. Which of course means being tired a lot and the things we (guys) hate to talk about or admit, but ED is there and it does exist and this is what bothers me the most. I tried Viagra and it did wonders, but my sexual drive is very low and I want to get better. Please talk to me. I went to the doctor 3 times before insisting on seeing a specialist - all three times he/she claimed it was stress. Thank god I did not listen - to all the guys out there - do not be ashamed to seek help if you suffer from similar symptoms. Sam <sfeuer_AT_yahoo_DOT_com> New York, NY - Thursday, May 6, 1999 at 18:12:07 Hi I haven't been diagnosed as yet but I hope that maybe some of your information will educate me enough that I can help the doctors push for diagnosis one way or another. Melanie L. Tucker <mtucker_AT_park.ca> Vancouver, BC - Thursday, May 6, 1999 at 15:40:15 Hi, my name is Cindy. I was Dx with a prolactinoma in 9/96. After 2 years of Rx with Parlodel. I was pronounced tumor free. It has been 8 months since then and I have had no return of symptoms. There is hope for those of you on the bromocriptine treatment. Find a Dr. you trust and put you faith in God. Cindy <tweetybug_AT_hotmail_DOT_com> - Thursday, May 6, 1999 at 00:26:28 Good Grief!!!! Not only is my previous entry too long- but somehow I goofed up and it is in twice! Forgive me! I must have needed to vent! Thanks to all for your courage! Hang in there- Jalyne in Seattle * * \_/ Jalyne <jfidler_AT_slc.shorelin.wednet.edu> Seattle, Wa - Wednesday, May 5, 1999 at 22:03:08 As I sat here reading I couldn't help but recognize the same struggle being played out in my life.I have been struggling with depression and lack of energy and motivation for some time now and I agree when you say - it is "Hell". It has been some time since I have entered in this guest book but since it has helped me so much to read your stories and ideas I thought I would write a few of my feelings. My Pituitary tumor was diagnosed in 1983 with prolactin around 200. After 15 years of being relatively healthy with no side effects except no menstrual cycle I started a downward spiral.( I had just been watching and waiting) Depression led me back to the doctor and I discovered my prolactin to be about 1300!!!! I Have been on Parlodel since last September 1998. Starting at 1/8th of a 2.5mg pill and going up slowly by 1/4 of a tablet every week until I was up to 5 mg. Then in 12 weeks of staying at 5mg my prolactin was down to 596. I raised my Parlodel up to 7.5mg (slowly) and after another 12 weeks My prolactin is down to 300 and something. I am staying on 7.5mg for another 12 weeks to see if it will continue to lower at this dosage. ****I was surprised to read how many of your doctors raise your dosages up so fast and quite high. No wonder many of you feel bad! I have had some side effects from the Parlodel like the nausea but since I raised so slowly I adjusted fairly painlessly. I also take my entire dose before bed with a snack to avoid the worst of the side effect during the day. Have any of your doctors had you take the dose at night? Also. . .Having a "headache constantly " is horrible. I feel for you and hope you can get some relief. My chiropractor has been my miracle worker. I was just enduring my headaches because I figured it was all due to the tumor. A friend dragged me to her chiropractor and it has been a miracle. Carrying all of the stress that I do- my neck was subluxated all the time and as soon as I was adjusted my headaches would go away. I am not trying to say this will work for everyone But I have learned that there are many ways to help ourselves feel better. Just the stress that we live under with this condition is enough to cause headaches etc... Let alone having the tumors and taking medicines etc... ********** Depression is a very serious problem. It took me a long time before I would even believe there truly was nothing I myself could do to "snap myself out of it" so to speak. I KNOW that depression is real , and that it is a hard process to find a medication that will stabilize your brain chemicals and help you feel better and not worse. I had a bad experience on the first medication I tried and I was much much worse- but I didn't even associate it with the drug, being new to this world of anti-depressants. I have a wonderful doctor who monitors my medications and he had helped me very much. It is amazing to one day feel different. It is wonderful when you can have a day with out your mind trying it's best to discourage your and keep you all strung out and anxious or just plain blue. I only wish you all the best in your efforts to feel better. Don't be too hard on yourself. There is only so much we can do. It takes time to find the right key. Just like my doctor said last night-- " Just because the key Looks Good- doesn't mean it will fit!!!" How true. It seems like everyone has a different reaction to each medication and each surgery. Every doctor had a different idea. That is very frustrating for me- I just want to know what to do exactly and then just do it. I guess that isn't how life is. Keep pushing on. Get help with the depression and the other things in your life will be bearable. I relate to worrying that you are becoming a burden on friends and family. It is a challenge and I go through the same worry. I guess it is a time to find out who your true friends are. Prayer is the most powerful tool to finding your way throughout the pituitary tumor maze. Don't forget to talk to our Father in Heaven about your feelings. He will help and direct you to the help you need. There is a story told of an old mule that fell in a deep old well- the towns people exhausted all of their resources and decided they could not get the mule out. They decided to put the mule out of his misery and fill in the well with dirt since it would be un-usable. They all started shoveling the dirt in the well. The mule was alarmed at the dirt began to hit his back. He began to panic.. He didn't want to be buried alive. Just then he had an idea. As each shovel of dirt hit his back he would shake it off and step up. Shake the dirt off and step up- shake the dirt off and step up--shake the dirt off and step up! Before long he had compacted the dirt and was level with the top of the well and was pulled out to safety. The morale of the story is like this. . . . When you think you are about to get buried- Shake off the "dirt" and STEP UP!!!! Keep your eye on the mark and keep pushing along. Things will get better. Well. . . . whew! I have rambled on long enough. Sermon over! I don't even know who will get this or if anyone will read it. I guess I just had the need to send my love and support to all of you who are out there struggling AM TOO!!!! There are many of us like you and we need each others support. Thanks for listening and feel free to write. Jalyne in Seattle email address > jfidler_AT_slc.shorelin.wednet.edu Jalyne <jfidler_AT_slc.shorelin.wednet.edu> Seattle, Wa - Tuesday, May 4, 1999 at 22:35:01 As I sat here reading the note below I couldn't help but recognize the same struggle being played out in my life.I have been struggling with depression and lack of energy and motivation for some time now and I agree - it is "Hell". My Pituitary tumor was diagnosed in 1983 with prolactin around 200. After 15 years of being relatively healthy with no side effects except no menstrual cycle I started a downward spiral.( I had just been watching and waiting) Depression led me back to the doctor and I discovered my prolactin to be about 1300!!!! I Have been on Parlodel since last September 1998. Starting at 1/8th of a 2.5mg pill and going up slowly by 1/4 of a tablet every week until I was up to 5 mg. Then in 12 weeks of staying at 5mg my prolactin was down to 596. I raised my Parlodel up to 7.5mg (slowly) and after another 12 weeks My prolactin is down to 300 and something. I am staying on 7.5mg for another 12 weeks to see if it will continue to lower at this dosage. ****I was surprised to read how many of your doctors raise your dosages up so fast and quite high. No wonder you feel bad! I have had some side effects from the Parlodel like the nausea but since I raised so slowly I adjusted fairly painlessly. I also take my entire dose before bed with a snack to avoid the worst of the side effect during the day. Have any of your doctors had you take the dose at night? Also. . .Having a "headache constantly " is horrible. I feel for you and hope you can get some relief. My chiropractor has been my miracle worker. I was just enduring my headaches because I figured it was all due to the tumor. A friend dragged me to her chiropractor and it has been a miracle. Carrying all of the stress that I do- my neck was subluxated all the time and as soon as I was adjusted my headaches would go away. I am not trying to say this will work for everyone But I have learned that there are other ways to help ourselves feel better. Just the stress that we live under with this condition is enough to cause headaches etc... Let alone having the tumors and taking medicines etc... **********The Depression is a very serious problem. It took me a long time before I would even believe there truly was nothing I myself could do to "snap myself out of it" so to speak. I KNOW that depression is real , and that it is a hard process to find a medication that will stabilize your brain chemicals and help you feel better and not worse. I had a bad experience on the first medication I tried and I was much much worse- but I didn't even associate it with the drug, being new to this world of anti-depressants. I have a wonderful doctor who monitors my medications and he had helped me very much. It is amazing to one day feel different. It is wonderful when you can have a day with out your mind trying it's best to discourage your and keep you all strung out and anxious or just plain blue. I only wish you the best in your efforts to feel better. Don't be too hard on yourself. There is only so much we can do. It takes time to find the right key. Just like my doctor said last night-- " Just because the key Looks Good- doesn't mean it will fit!!!" How true. It seems like everyone has a different reaction to each medication and each surgery. Every doctor had a different idea. That is very frustrating for me- I just want to know what to do exactly and then just do it. I guess that isn't how life is. Keep pushing on. Get help with the depression and the other things in your life will be bearable. I relate to how you feel worrying that you are becoming a burden on friends and family. It is a challenge and I go through the same worry. I guess it is a time to find out who your true friends are. Prayer is the most powerful tool to finding your way throughout the pituitary tumor maze. Don't forget to talk to our Father in Heaven about your feelings. He will help and direct you to the help you need. There is a story told of an old mule that fell in a deep old well- the towns people exhausted all of their resources and decided they could not get the mule out. They decided to put the mule out of his misery and fill in the well with dirt since it would be un-usable. They all started shoveling the dirt in the well. The mule was alarmed at the dirt began to hit his back. He began to panic.. He didn't want to be buried alive. Just then he had an idea. As each shovel of dirt hit his back he would shake it off and step up. Shake the dirt off and step up- shake the dirt off and step up--shake the dirt off and step up! Before long he had compacted the dirt and was level with the top of the well and was pulled out to safety. The morale of the story is like this. . . . When you think you are about to get buried- Shake off the "dirt" and STEP UP!!!! Keep your eye on the mark and keep pushing along. Things will get better. Well. . . . whew! I have rambled on long enough. Sermon over! I don't even know who will get this or if anyone will read it. I guess I just had the need to send my love and support to all of you who are out there struggling AM TOO!!!! There are many of us like you and we need each others support. Thanks for listening and feel free to write. Jalyne in Seattle email address > jfidler_AT_slc.shorelin.wednet.edu Jalyne <jfidler_AT_slc.shorelin.wednet.edu> Seattle, Wa - Tuesday, May 4, 1999 at 22:22:06 I am 35 and learned of having 2 pituitary microadenomias in 1994. Have since been on bromocryptine (except during pregnancy) and have 2 kids. I am back on bromocryptine now but am experiencing some blurred vision and painful intercourse.....(my obgyn and eye doctor said things are fine). Has anyone else experienced similar symptoms? Any suggestions? andrea ls <andreals_AT_glink_DOT_net.hk> - Monday, May 3, 1999 at 11:12:52 Was operated on 2/3/99 for tumor. Turned out to be a Rathke's Cleft Cyst. Just found it it has returned to full size 2cm--in less than 10 weeks. Has anyone experienced Rathke's Cleft cyst? Am looking for alternatives to transphenoidal--laparoscopy or radiation? Thanks and best of luck to all with this challenge! Gerry <gkko96_AT_aol_DOT_com> - Sunday, May 2, 1999 at 21:29:06 After transphenoidal surgery my pituitary gland does not function as it should. My prolactinoma is partly removed, but there is a small part left. I am treated with hormone replacing medicines and cabergoline. Now my physician is thinking about me starting with growth hormone (GH). I am looking for patients with experience with this treatment. What is it like to use GH? What were the effects? Positive/negative? Did your prolactinoma grow after the use of GH? Are you content with the (results of )treatment? Please e-mail your story! Thank you. Eva Eising <eaeising_AT_worldonline.nl> Assen, - Sunday, May 2, 1999 at 17:53:20 I am a 39 year old who has had a pituitary microadenoma since I was 27. I have had 2 children (on parlodel) and don't want any more. I am scheduled to have laproscopic (sp?) surgery next week and would appreciate any comments from anyone who has had such surgery. I am most interested in the recovery, because I am a stay at home mom and can't afford to be sick (ha!). A friend had the surgery about 2 years ago and said it took her 6 weeks to recover (mostly massive headaches, not able to drive or look after her kids). The surgeon assures me that I could go back to a job (if only...) in a week after the surgery. As I said, any info would be greatly appreciated. Address is renatamac_AT_home_DOT_com. renata <renatamac_AT_home_DOT_com> toronto, ont - Friday, April 30, 1999 at 18:57:44 Hi. Well, this all started many years ago as I started having so many problems. I went to several Doctors here in my home town. They all told me there is nothing wrong with you it's all in your head. Ok so I finally end up in the eye doctors office and he tells me the field vision test shows a problem. Ok then I go to Dallas and find out I have a pituitary tumor. This was in 1993. I have the surgery in Dec of 93. Now, the tumor is back. I am so scared to have this surgery again. My vision has started to fail again. It is like my left eye has a glow over it all the time. I see my surgeon again next month and I want to talk to him about trying medication instead of the surgery. I am scared about having the surgery again and wondering just how many times before they get this tumor will they tell me I need surgery again. I have been told that I would need radation the secound time after the surgery. If anyone can talk to me about this please I need someone to just talk to....Thank you, Sherry Sherry <sglc_AT_lecnet_DOT_net> TX - Thursday, April 29, 1999 at 23:06:13 I am 35 yrs old and have just been diagnosed with Cushings Syndrome. I also have terminal medullary thyroid cancer which has triggered this syndrome. Dispite all this I have been quite active and fit, and more than anything I want to maximise my quality of life and enjoy my two small children. I am looking for practical advice in dealing with the symptons of Cushings - any ideas on appropriate exercise, diet, etc would be much appreciated. Chris Powell <chrisp_AT_foxboro_DOT_com.au> Brisbane, Qld - Wednesday, April 28, 1999 at 19:52:36 Hello. I had surgery-went thru left temple area-in Feb. of this year. Removed tumor, pituitary gland, and am doing well. Have started hormone therapy and "general"recovery. Lots to learn-lots to try-lots to adjust to....I know this is very scary and will try to help you with any questions-I know how much I count on everyone to help me. I am a 43 yr. old wife & mother. Some things to expect- fatigue, weight gain, depression, fear, impatience, many different trials and blood tests, lots of medication-----the continuation of a wonderful trip---life! Cindy Cindy Johnson <gitaway_AT_aol> Wheeling, WV - Monday, April 26, 1999 at 23:07:58 Two years ago Dr. Brooke Swearingen successfully performed a Transsphenoidal, which cured me of Cushing's. I would like to thank Dr. Swearingen, Dr. David Altshuler, Dr. Cohen, Dr. Larry Katznelson (at MGH) and Dr. Mauri Cohen and Dr. Paul Copeland (in Salem, MA) for helping to cure me of Cushing's. They took such great care of me and were always there when I needed them and because of that I feel wonderful!!!!!! Thank you, Diane Derouin Diane Derouin <dderouin_AT_webtv_DOT_net> Peabody, MA - Monday, April 26, 1999 at 15:24:28 CAN ANYONE PLEASE HELP ME AND TELL ME WHAT A PROLACTIM LEVEL SHOULD BE AND THE POLIC ACID? I'M NOT SURE OF THE SPELLING SORRY. Margarita Velez-Williams <Margarita.Velez_AT_ny.frb.org> New York, NY - Wednesday, April 21, 1999 at 15:19:42 Had a problem with my prolactin levels and was an tumor was found in the gland and removed in 1997 by Dr. Harley Symthe of Wellesley Hospital - Toronto, Ontario. The surgery was done through my nose. No scarring or brusiing. I was in hospital for 4 days. I can't express my thankfulness to Dr. Symthe and his wonders. I am fine now. Anne Simone <asimone_AT_ocwa_DOT_com> Toronto, On - Wednesday, April 21, 1999 at 14:21:48 Message to Sohail--Have you had any success finding a doctor to treat the conditions you have described in your previous postings? How are you doing currently, and have any doctors emailed you with suggestions on how to proceed with treatment? Please respond here, and I will check back! Lori Lori Majestic <ToMajestic_AT_aol_DOT_com> MI - Wednesday, April 21, 1999 at 01:21:24 I have been taking Sandostatin LAR through a clinical research study at Cedars-Sinai Medical Center in Los Angeles. The study will end in one month and now my insurance is refusing to cover the cost of my Sandostatin LAR ($2000/mo). Does anyone have experience with getting medications added to insurance company formularys? Coleen <U SEA LA _AT_AOL_DOT_com> - Tuesday, April 20, 1999 at 11:41:08 showard I couldn't find your one_DOT_net site. pilps please give me info on the Henry Ford Center Pituatary group. How does one find the best endocrinologists in the US. A member of my family (male) has a 3x3x4 cm tumor which was partially removed. the rest is very near the optic nerve and cannot be removed or radiated for fear of causing blindness. He is now on dostinex 3 pills x 2 times a week. Counts are still incredible high. He is looking for someone to do a review of his records. barb <smandel1_AT_juno_DOT_com> mi - Sunday, April 18, 1999 at 21:49:38 THIS IS GOOD GUEST BOOK. HELLO ! SIR I AM SUFFERING IN THIS DISEASE FROM LAST ELEVEN YEARS. I WANT TO GET HEALTH . BUT UNFORTUNATELY THERE IS NO MUCH MORE RESEARCH IN RESEARCH CENTERS ABOUT MY DISEASE. SO I HAVE TO DECIDE THAT I REPRESENT TO MY SELF FOR MEDICAL TRIAL / RESEARCH OF MY DISEASE . PLEASE READ TO MY OFFER CAREFULLY AND REPLY ME AS EARLY AS POSSIBLE NOW I OFFER TO YOU & TO YOUR RESEARCH CENTER / TRUST/ HOSPITAL / ORGANIZATION/ THAT I REPRESENT TO MY SELF FOR MEDICAL TRIAL . I PERMISSION TO YOU , YOU CAN DO ANY MEDICAL EXPERIMENTS ABOUT MY DISEASE AT ME . AS YOU KNOW I AM SUFFERING IN WHICH DISEASE A SMALL NUMBER OF THE PEOPLES ARE SUFFERING IN SAME DISEASE IN THE WORLD , SO THIS IS FACT THE OPPORTUNITY CHANCE OF RESEARCH ABOUT MY DISEASE IS IN ALSO SMALL QUANTITY. FOR MEDICAL TRIAL I WILL COME TO YOUR COUNTRY & ALL EXPENSES INCLUDING RETURN AIR TICKET , HOTEL STAY, TRANSPORTATION, FOOD & ALL OTHER CHARGES WILL I WILL PAY . THE REASON IS THAT I WANT TO GET HEALTH AT ANY COST. MAY BE BY THIS WAY I WILL SUCCESS FULL TO GET HEALTH . IF YOU ACCEPT TO MY THIS OFFER THEN O K . IF YOU DON'T ACCEPT THEN PLEASE SEND TO MY THIS OFFER TO ALL CANCER RESEARCH CENTERS & BRAIN TUMOR RESEARCH CENTERS / ORGNZATIONS IN U.S.A. CANADA. EUROPE. & UK. PLEASE READ TO MY HISTORY OF DISEASE CAREFULLY. HISTORY OF MY DISEASE I SUFFERED FROM CHICKEN POX IN THE BEGINNING OF 1988. RED PIMPLES WERE APPEARED ON MY BODY. AFTER SOME DAYS THESE PIMPLES WERE FILLED WITH WATER AS A RESULT OF WHICH I CAUGHT FEVER. I FELT UNEASY AND BROKEN HEALTH ( BUT AFTER SOME DAYS THESE PIMPLES WERE DIS APPEARED FROM MY SKIN ). I CONTACTED MY DOCTOR WHO STARTED MY TREATMENT FOR CHICKEN POX. I WAS NOT FULLY RECOVERED BUT MY DOCTOR DECLARED ME QUITE WELL. MORE RED PIMPLES WERE APPEARING ON MY BODY BUT MY DOCTOR ADVISED ME TO GIVE UP PREVENTION. HE DIRECTED ME TO HAVE A BATH WITH COLD WATER AND USE COLD DRINKS. I ACTED UPON THE SUGGESTION OF MY DOCTOR. AS A RESULT OF IT I FELT FEVER AND COLD EVERY TIME. EVEN DURING THE MONTH OF JUNE, WHEN TEMPERATURE OF OUR CITY IS 47oC, I FEEL COLD IN THE SUN AND ALSO NOW I CAN NOT SIT UNDER A FAN, CAN NOT WASH HANDS & FACE , AND CAN NOT HAVE A BATH. IT IS VERY STRANGE TO SAY THAT I HAVE TAKEN A BATH LAST TIME ON 12TH JUNE, 1993. NOW I CAN NOT HAVE A BATH, BECAUSE I FEEL VERY COLD.I CAN NOT DRIVE CYCLY & MOTOR CYCLE BECAUSE WHEN AIR STRIKE TO MY BODY I FEEL TOO MUCH COLD . I AM IN MUCH TROUBLE. I CONTACTED MANY DOCTORS TO GET HEALTH BUT IAM FAIL TO GET HEALTH. AFTER SIX YEARS OF MY ABOVE MENTIONED DISEASE I GOT CT. SCAN TEST OF PITUITARY GLANDS OF MY BRAIN. ACCORDING TO THE TEST REPORT THERE IS A TUMOR IN MY BRAIN AT THE PITUITARY GLAND (PITUITARY ADENOMA) BRAIN SURGERY IN PAKISTAN IS VERY DANGEROUS. IT IS A VERY DANGEROUS OPERATION THEREFORE I CAN NOT TAKE ITS RISK IN PAKISTAN. IN THE START OF 1996. I CONTACTED SHAUKAT KHANAM MEMORIAL HOSPITAL FOR CANCER JOHAR TOWN , LAHORE CITY AND GOT TREATMENT FOR MY BRAIN TUMOR THROUGH RADIATION BUT COULD NOT GET RELIEF FROM THIS TROUBLE OF FEELING OF COLD TOO MUCH. AND ALSO NOW I GOING TO SHAUKAT KHANUM MEMORIAL CANCER HOSPITAL IN LAHORE PAKISTAN FOR FALLOW. IN THIS HOSPITAL MY MEDICAL RECORD NUMBER IS 8214 .AND THE NAME OF MY DOCTOR IS SHEIKH MUEEN -UL- HAQ . HE IS NOT ONLY A GOOD DOCTOR BUT ALSO A NICE MAN .PRESENTLY I AM USING FOLLOWING MEDICINES. (1) THYROXIN 50 MCG TAB. 6,TABLETS BEFORE BREAK FAST (2) DELTACORTIL 5 MG TAB. 2 TABS. IN MORNING, 1 TAB. IN EVENING. (3) PARLODEL (BROMOCRIPTINE) 1.5 TABS MORNING AND EVENING. AS RESULT OF THE ABOVE SAID DISEASE MY WEIGHT HAS INCREASED BY 40 KGS. (FROM 70KGS. TO 110 KGS.). MY SKIN HAS BECOME VERY THICK (FAT) . MY SKIN ALL TIME SWELT WITH SWEAT . I FACE UN-USUAL PERSPIRATION. MY DOCTOR OPINED THAT HYPOTHALAMUS AND PITUITARY GLANDS ARE NOT FUNCTIONING NORMALLY DUE TO WHICH MY BODY'S ENDOCRINE SYSTEM IS NOT NORMAL. NOTE MY: WEIGHT=110 KGS., SEX=MALE, HEIGHT= 5 1/2 FEET, DATE OF BIRTH=1ST JUNE 1967 NOTE MY LATEST MEDICAL TESTS REPORTS ARE THESE: PROLACTIN 128.0 NG/ML MALES 2.5-17 1. T3 TOTAL 46.0 NG/DL 82-179 2. T4 (THYROXIN) 3.6 PG/DL 4.5-12.5 3. TSH 0.041 PLU/ML 0.4-4.0 4. CORTISOL 1.0 PG/DL AM 5-25 5. CORTISOL 1.0 PG/DL PM 3-15 IF YOU ACCEPT TO MY THIS OFFER THEN O K . IF YOU DON'T ACCEPT THEN PLEASE SEND TO MY THIS OFFER TO ALL CANCER RESEARCH CENTERS & BRAIN TUMOR RESEARCH CENTERS / ORGNZATIONS / HOSPITALS , IN U.S.A. CANADA . EUROPE . AUSTRALIA & UK. AND TELL ME ABOUT THAT RSEARCH CENTERS WHICH WILL ACCEPT TO MY THIS OFFER . PLEASE REPLY ME AS EARLY AS POSSIBEL . TAKE CARE, THANK YOU MY MAILING ADDRESS: SOHAIL AHMAD HOUSE # 2-S-28, STREET # 2, BLOCK # 8, SARGODHA-PAKISTAN TEL. # 0092-451-741201/741143/741209 E-mail: Subhan_AT_sgd.nexlinx_DOT_net.pk NOTE ! IF YOU KNOW ABOUT ANY WEB SITE RELATED ABOUT MY PURPSE PLEASE TELL ME IMMEDIATELY . SOHAIL AHMAD <subhan_AT_sgd.nexlinx_DOT_net.pk> SARGODHA, PUNJAB - Sunday, April 18, 1999 at 13:28:55 i need info on pituiortory toumours non cancer patricia barrick <pat_AT_barrickp.freeserve.co.uk.> leeds, - Saturday, April 17, 1999 at 19:17:04 I have just found out i have a 8mm Pituitary Tumor my doctor is starting me on Bromocriptine & I have heard of some of the side effects others have had & am a little nervous about starting it. I would really like to hear some other stories & find out some more information from people who have had the same thing. I also would like to hear some of the side effects other people have had from Bromocriptine. I am really glad I found this sight. Jodie <ZOE070497_AT_AOL_DOT_com> NC - Friday, April 16, 1999 at 21:45:25 I have had a pituitary tumor since I was about 14. I'm now 35 and am finally getting treatment. I was told 10 years ago that i might have a tumor and when nothing showed up on the CAT scan - i decided to believe the doctor was wrong. I started taking dostinex last week and took my third pill yesterday, so I haven't really noticed much difference. My endocrinologist also told me I was hypoglycemic so I stopped eating desserts and other sweets - I am a whole different person since changing my diet! All these years I thought my various sympoms were just inherited weaknesses - arthritis, headaches, fatigue, menstrual difficulties, weight gain, depression... I have a question for others on dostinex - did you lose weight after starting treatment or gain more? I'm about 20 lbs. overweight and can live with that, but I'd rather not gain more. This is a wonderful site! It's nice to know I'm not alone with this! Lisa <lily.brabant_AT_centuryinter_DOT_net> WI - Friday, April 16, 1999 at 17:21:28 My wife is having high prolactin Levels. I want to know how does this affect pregnancy. Azalea <asheesh_mahajan_AT_usa_DOT_net> - Friday, April 16, 1999 at 01:54:41 I was diagnosed with a Prolactinoma in 1995 and have been taking Liserdol (Metergolien 4mg) ever since. I have not seen this drug mentioned on this bulletin board. Is anyone else using this particular drug? Recently I was given Norprolac but had a very bad reaction. For the first time since being diagnosed I am going to be evaluated endocrinologically. Hopefully this will sort out some problems I have been experiencing. Ann <robdawes_AT_ct.lia_DOT_net> Cape Town, - Thursday, April 15, 1999 at 03:54:45 Is there anyone out there that has had a pituitary gland tumor removal? What was it like after surgery? What are the pros & cons of having the surgery? BJ Williamson <jcwbjw_AT_aye_DOT_net> georgetown, in - Monday, April 12, 1999 at 18:29:29 Hi! I'm a 37-year-old woman with a pituitary microadenoma that was diagnosed when I was 19. In the past I've taken bromocriptine, which was quite effective (when I was able to tolerate it) in restoring not only my periods but also my libido and general vitality. I've been off Parlodel since I got pregnant in late '96 and only stopped nursing about a month and a half ago. I'd appreciate hearing from women who have reinstituted treatment after pregnancy and nursing. How long did you wait after discontinuing nursing before having bloodwork and/or MRI done? How did you go about getting reevaluated? I would also like to hear from anyone who knows of a good endocrinologist in my area (i.e. central New Jersey)--by good, I mean one who is aware of and well-informed about the sexual/psychological dimension of pituitary illness. It's nice to know there's a whole community of pituitary patients out there--something I never had before. Thanks to all. Molly Weigel <mweigel_AT_ets.org> W. Trenton, NJ - Monday, April 12, 1999 at 17:21:26 I have a non functioning pituitary gland and just found this web site. Any newsletter or new info on this subject would be greatly appreciated. Thanks for your time, Carol CAROL ZASTROW <ZASTROKC_AT_EXECPC_DOT_com> watertown, wi - Monday, April 12, 1999 at 10:38:47 Our 17 year old son has a partially resected prolactinoma, could not tolerate parlodel, was on a study for CV205-502 (norprolac) and we now get the Norprolac from the Netherlands since the study has been canceled. We have heard about Cabergoline as another medication available for him, is there anyone currently taking this and how are your results? His prolactin level runs between 90-800. We appreciate your input. Bill & Colleen <bc178_AT_warwick_DOT_net> - Sunday, April 11, 1999 at 21:36:08 Veronica, 64 is abnormal for prolactin, BUT there is good news here. Usually tumors that produce prolactin respond to drugs like Dostinex which will shrink the tumor and make your prolactin go back down to normal. Lactating for 10 years is another indication of a prolactinoma. Don't be scared, and let us know what the MRI results are. Diane <parishrd_AT_netway_DOT_com> Boston, MA - Sunday, April 11, 1999 at 04:32:04 A friend of mine is this small town of 30,000 in NZ has just been diagnosed with Acromegaly. Do you know of any physicians who specialise in this field in NZ? Kay Liggett <kayl_AT_gdc.govt.nz> Gisborne, - Sunday, April 11, 1999 at 00:48:48 I just recently had a prolactin blood test and it came back at a 64. I have had migraines for years and after the birth of my first child I have never stoped lactating that has been 10 years now. I had my second child 10 months ago, it took me 10 years to get pregnat. They are doing an MRI in a couple of days. I know nothing about Prolactin tumors and I dont even know if a 64 is a high for the blood test. If anyone could help me understand this or have been in a some what simmiler position please let me know. Thank you!!!! Veronica <VSilbaugh_AT_aol_DOT_com> Longmont, CO - Saturday, April 10, 1999 at 12:09:50 Its been two years since my surgery and I still feel the incision every second of the day. I am beginning to feel all same old symptoms -- weight gain, increase in shoe size, blurred vision, I am constantly, depressed -- please help I can't go thru this again --- I had two tumors removed --- Help me Niobis C. Queiro- Anderson <NiobisQ_AT_aol_DOT_com> WNY, NJ - Friday, April 9, 1999 at 08:17:55 Its been two years since my surgery and I still feel the incision every second of the day Niobis C. Queiro- Anderson <NiobisQ_AT_aol_DOT_com> WNY, NJ - Friday, April 9, 1999 at 08:08:53 i wanted to get somemore info. on pitutary adenomas and their affects on males. I am a chiropractic student and my brother was diagnosed with having one. I am not seeking medical advise, rather just somemore info. on this disorder. I would greatly appreciate it if you can help me. melissa kisla <kislamelissa_AT_hotmail_DOT_com> hillsdale, nj - Thursday, April 8, 1999 at 23:06:55 I have a 20+ year history o poorly controlled rt temporal lobe epilepsy . ( complex partials and grand mal ). 3 years ago I stopped meds after being sz free for a few years. I did fine then found out I had a dysembryoplastic neuroepithelial tumor in my right anterior temporal lobe. It was removed last summer and I was doing great.. till I had a hysterectomy in Dec. I was started on Prempro but began to feel like the cp sz's were starting again. Progesterone helped, and I've got some docs trying to help me figuring out the hormone stuff, but I'm having to do the legwork. We figured out I'm also low on T3; I've been on sythroid for years. I think I need more fine tuning on estrogen, progesterone, and even some testosterone, and wish I could find a doc EXPERIENCED and INTERESTED in working with me. If anyone knows of anyone in the San Francisco area, I'd love to hear about them!! Deb <drdebp_AT_ao_DOT_com> Novato, CA - Wednesday, April 7, 1999 at 17:12:56 I HAVE JSUT BEEN DIAGNOSED WITH A MICRO ADENOMA OF THE PIT. GLAND. i SEE AN ENDOCRONOLOGIST IN TWO DAYS AND HAVE BEEN ADVISED BY MY OBGYN TO ASK FOR DOSTINEX. I HAVE BEEN REDING ABOUT ALL THE DIFFERENT CHOICES OF MEDICATIONS AND TO BE HONEST NONE OF THEM SOUND FUN. LOTS OF SIDE EFFECTS I AM NOT LOOKING FORWARD TO. ANYONE OUT THERE HAVE ANY GOOD NEWS REGARDING SUCCESS ON ANY OF THE MEDICATIONS? CARRIE LA FAVE <LA101FAVE_AT_AOL_DOT_com> HUNTINGTON BEACH, CA - Wednesday, April 7, 1999 at 01:13:35 Please help..................... Margarita Velez-Williams <Margarita.velez_AT_ny.frb.org> new york, ny - Monday, April 5, 1999 at 16:53:48 Richard, I tried to send you an email but your address didn't work. We have a pituitary tumor support group in New England. There are about 40 people on my mailing list with new people finding me every week. Please contact me if you are interested. parishrd_AT_netway_DOT_com Diane <parishrd_AT_netway_DOT_com> Boston, MA - Sunday, April 4, 1999 at 07:01:17 Thank You , finally a link i can relate to Richard B <mylexa_AT_aol_DOT_com> Salem, NH - Wednesday, March 31, 1999 at 21:25:40 I have had a pituitary tumor for almost 4 years. It was discovered because of secretion of milk from my breasts. My doctors all told me there is nothing to worry about. My tumor is small and they are always benign. They never mentioned the other possibilities such as Cushings. I have asked them if my weight gain can be attributed to my tumor and they have said 99% impossibility of this being the case. The last doctor a so-called specialist said he wouldn't have me have another MRI for several years. Is this guy a quack or what? Helen Brewer <helenb_AT_pdsi_DOT_com> - Wednesday, March 31, 1999 at 14:07:04 HI, I WAS DIAGNOSED WITH A PIT TUMOR IN DEC 1997. I HAVE BEEN ON DOSTINEX ON AND OFF FOR A WHILE BUR HAD TO QUIT BECAUSE OF A LOT OF STOMACH PROBLEMS (LOST 25 LBS). I WOULD LIKE TO TALK TO SOME PEOPLE WHO HAVE HAD SIMILAR PROBLEMS WITH DOSTINEX. I WOULD ALSO LIKE TO KNOW IF ANYONE COULD SHARE INFORMATION ABOUT SURGERY - I AM THINKING ABOUT THIS OPTION BUT AM VERY NERVOUS. I WAS VERY HAPPY TO SEE THIS WEB SITE- I THOUGHT I WAS ALONE UNTIL READING THIS. APRIL COVA <COVAA_AT_SHAREDCELLULAR_DOT_com> SOUTHINGTON, CT - Wednesday, March 31, 1999 at 12:11:31 I entered the guest book earlier today - I would like to change my e-mail address from SUMAOG_AT_aol_DOT_com to this one, EMarilyn_AT_aol_DOT_com My original message was something like this. "I believe I have many symptoms of acromegaly (spelling?) and I am near Palm Springs Cal. Does anyone know of good Doctors or facilities in this area." In the Summer I am in Washington State, near Wenatchee. I will be going there the 1st of May. Know of any good Doctor or facility there - Seattle is 180 miles from me and Spokane is 180 miles from me. Any good doctors or facilities to recommend? Thanks, Marilyn Marilyn <EMarilyn_AT_aol_DOT_com> - Wednesday, March 31, 1999 at 10:35:42 I have symtoms of acromegaly. I am near Palm Springs California. Could you recommend a doctor or facility who might do the testing? Thanks Marilyn <SUMAOG_AT_aol_DOT_com> - Wednesday, March 31, 1999 at 01:39:53 I just returned from my baby girl's six month check-up. When we were through with the baby's exam I showed her the "hump" that I have noticed enlarging at the base of my neck. She ordered a series of bloodwork to rule out/diagnose Cushings Syndrome/Acromegaly. I have the usual side effects of being a new parent (also have a 3 year old)During my most recent pregnancy I had borderline gestational diabetes which required weekly blood monitoring but otherwise things went well. After reading your comments I feel as though my symptoms are more of a sleep deprived new mother who has gained a little weight and may be mournign the loss of her previous existence when the world was not ruled by Sesame Street and hungry babies inthe middle of the night...still have the situation with the lump though. Good to get things checked out with the blood work and I guess we'll roll from there! Best wishes to you all, it sounds like you have been challenged in life and have grown stronger as a result of the experience although I'm sure it has had it's moments! Ellen <rhoades_AT_televar_DOT_com> WA - Tuesday, March 30, 1999 at 22:00:38 Trying to learn all I can about Adrenal/Pituitary disfunction. John Rein <JRIEN_AT_msn_DOT_com> Abita Springs, la. - Tuesday, March 30, 1999 at 06:27:09 THIS IS VERY GOOD GUEST BOOK. HELP ME. HELP ME. HELP ME. HELP ME. DOCTORS PLEASE HELP ME HISTORY OF MY DISEASE I SUFFERED FROM CHICKEN POX IN THE BEGINNING OF 1988. RED PIMPLES WERE APPEARED ON MY BODY. AFTER SOME DAYS THESE PIMPLES WERE FILLED WITH WATER AS A RESULT OF WHICH I CAUGHT FEVER. I FELT UNEASY AND BROKEN HEALTH. I CONTACTED MY DOCTOR WHO STARTED MY TREATMENT FOR CHICKEN POX. I WAS NOT FULLY RECOVERED BUT MY DOCTOR DECLARED ME QUITE WELL. MORE RED PIMPLES WERE APPEARING ON MY BODY BUT MY DOCTOR ADVISED ME TO GIVE UP PREVENTION. HE DIRECTED ME TO HAVE A BATH AND USE COLD DRINKS. I ACTED UPON THE SUGGESTION OF MY DOCTOR. AS A RESULT OF IT I FELT FEVER AND COLD EVERY TIME. EVEN DURING THE MONTH OF JUNE, WHEN TEMPERATURE OF OUR CITY IS 47oC, I FEEL COLD IN THE SUN AND ALSO NOW I CAN NOT SIT UNDER A FAN, CAN NOT WASH HANDS & FACE , AND CAN NOT HAVE A BATH. IT IS VERY STRANGE TO SAY THAT I HAVE TAKEN A BATH LAST TIME ON 12TH JUNE, 1993. NOW I CAN NOT HAVE A BATH, BECAUSE I FEEL VERY COLD. I AM IN MUCH TROUBLE. I CONTACTED MANY DOCTORS TO GET RID OF THIS TROUBLE BUT ALL IN VAIN. AFTER SIX YEARS OF MY ABOVE MENTIONED DISEASE I GOT CT. SCAN TEST OF PITUITARY GLANDS OF MY BRAIN. ACCORDING TO THE TEST REPORT THERE IS A TUMOR IN MY BRAIN AT THE PITUTARY GLAND (PITUTARY EDENOMA) BRAIN SURGERY IN PAKISTAN IS VERY DANGEROUS. IT IS A VERY DANGEROUS OPERATION THEREFORE I CAN NOT TAKE ITS RISK IN PAKISTAN. IN THE START OF 1996. I CONTACTED SHAUKAT KHANAM MEMORIAL HOSPITAL FOR CANCER IN LAHORE CITY AND GOT TREATMENT FOR MY BRAIN TUMOUR THROUGH RADIATION BUT COULD NOT GET RELIEF FROM THIS TROUBLE AND ALSO NOW I GOING TO SHAUKAT KHANUM MEMORIAL CANCER HOSPITAL IN LAHORE FOR FALLOWUP. PRESENTLY I AM USING FOLLOWING MEDICINES. (1) THYROXIN 50 MCG TAB. 6,TABLETS BEFORE BREAK FAST (2) DELTACORTIL 5 MG TAB. 2 TABS. IN MORNING, 1 TAB. IN EVENING. (3) PARLODEL (BROMOCRIPTINE) 1.5 TABS MORNING AND EVENING. AS RESULT OF THE ABOVE SAID DISEASE MY WEIGHT HAS INCREASED BY 40 KGS. (FROM 70KGS. TO 110 KGS.). MY SKIN HAS BECOME VERY THICK. I FACE UN-USUAL PERSPIRATION. MY DOCTOR OPINED THAT HYPOTHAIAMUS AND PITUTARY GLAND ARE NOT FUNCTIONING NORMALLY DUE TO WHICH MY BODY'S ENDOCRINE SYSTEM IS NOT NORMAL. I APPEAL FOR SUPLY OF THE FOLLOWING INFORMATIONS: 1. IF YOU CAN TREAT MY THIS DISEASE PLEASE INTIMATE DETAILS IN THIS REGARD. 2. IF ANY PATIENT OF THIS DISEASE HAS BEEN GIVEN SUCCESSFUL TREATMENT OR NOT IF YES, WHETHER THE PATIENT IS FULLY RECOVERED OR NOT. 3. IF ANY RESEARCH REGARDING THIS DISEASE IS BEING CARRIED OUT, PIEASE INTIMATE THE LATEST DEVELOPMENT AND PLEASE INTIMATE NAME, MAILING ADDRESS AND E-MAIL NUMBER OF THAT INSTITUTE/HOSPITAL/RESEARCH CENTRE. 4. HAVE YOU ANY MEDICINE OR TREATMENT PROCEDURE THROUGH WHICH USE THE FEELING OF TOO MUCH COLD IN MY BODY MAY BECOME LESS OR FINISHED TOTALLY. IT IS MY HUMBLE REQUEST THAT REPLIES TO THE ABOVE MENTIONED QUESTIONS MAY KINDLY BE SENT TO ME FOR WHICH I SHALL BE HIGHLY THANKFUL FOR THIS FAVOUR. NOTE MY: WEIGHT=110 KGS., SEX=MALE, HEIGHT= 5 1/2 FEET, DATE OF BIRTH=1ST JUNE 1967 NOTE MY LATEST MEDICAL TESTS REPORTS ARE THESE: PROLACTIN 128.0 NG/ML MALES 2.5-17 1. T3 TOTAL 46.0 NG/DL 82-179 2. T4 (THYROXIN) 3.6 PG/DL 4.5-12.5 3. TSH 0.041 PLU/ML 0.4-4.0 4. CORTISOL 1.0 PG/DL AM 5-25 5. CORTISOL 1.0 PG/DL PM 3-15 PLEASE REPLY ME AS EARLY AS POSSIBEL & TELL ME HOW CAN I GET HEALTH PLEASE PLEASE PLEASE...................................................................... ................................. THANK YOU MY MAILING ADDRESS: SOHAIL AHMAD HOUSE # 2-S-28, STREET # 2, BLOCK # 8, SARGODHA-PAKISTAN TEL. # 0092-451-741201/741143/741209 E-mail: Subhan_AT_sgd.nexlinx_DOT_net.pk SOHAIL AHMAD <subhan_AT_sgd.nexlinx_DOT_net.pk> SARGODHA, PUNJAB - Saturday, March 27, 1999 at 14:29:06 excellent site for information on pituatary tumors Ritacca Laser Center <dritacca_AT_bigplanet_DOT_com> vernon hills, IL - Friday, March 26, 1999 at 21:17:57 Mary Ann and Diane, You cannot rely on tumor size alone. Before a patient rules out surgery they have to make sure all their bases have been covered. Have they been evaluated by the proper physicians? Neuro-op, neurosurgeon, endocrinologist. I assume you have been. Many tumors are operated on under the 1cm size. Certain tumors need to be operated on asap. Prolactinomas are usually treated with medications first. A patient with no response to medications usually will experience surgery at some point. It is also important to know what proper follow-up care involves. Yearly MRIs, and bloodwork. Bloods should be obtained more frequently when trying out a new medication or when increasing doses. This will alleviate wasted time where a dose change should have been made. Once your levels reach normal it doesn't mean you can go off your meds. I have seen this too many times. It is usally the meds controlling the levels in the normal range. Many patients assume they are fine after one surgery and never appear for follow-up care. YOU must have your levels checked. I prefer to do it quite frequently following surgery. This will assure that the levels are staying down and not spiking up. Take charge of your health....not all caretakers are up on the pituitary protocol. d d - Thursday, March 25, 1999 at 10:48:57 I am a 48 year old Male who was healthy until 1995. I was diagnosed with hypercalcemia and diabetes II in the fall of 1995. After removal of 3 parathyroid gland and 1/2 of my thyroid I also developed high blood pressure. After months of tests it was determined I had low testosterone level, and a 4mm non-functioning pituatary adenoma with a prolactin level of 25. Since then I am taking Testosterone shots, glucophage, glipizide, zoloft for depression and synthroid. My prolactin level is now 65 - 75, I now weigh 275lbs (5'6") have no sex drive, constantly tired, been diagnosed with sleep apnea. Some of the Doctors say I have MEN I, but don't do anything. My Endocrinologist tells me there is no problem, just take the meds. I am sure you all know what life is like feeling like hell every day. It is a battle to get up and stay up. My memory has slipped and my family life has gone down the drain. If anyone know a doctor in the Washington, DC area who specializes in treating the whole person who has such a complicated case, please let me know. Thanks Norm <icando_AT_erols_DOT_com> Silver Spring, md - Thursday, March 25, 1999 at 10:33:52 Has anyone had elevated testosterone levels with any of these disorders? I am a 26 yo female. My history is crazy, another product of military health care, 3 years ago the left half of my thyroid was removed, had a hyperfunctioning adenoma-but was sick for years before, no periods, etc and weight gain, round face, just treated me for GI probs and told me it was weight. By the grace of God, I've had 2 children, now 2 and 4. My face is getting round again, gained 20 lbs out of nowhere and my reason for seeing Dr. was that I feel horrible, tired, intermittent palpatations, and major hirsutism. He did a testosterone level, 14-76 was normal, I'm 122. I've been to KU to see an endo. I go back the 29th. I'm just scouring the net for info, I cannot be a good mom feeling like this, I'm sure my husband is tired of me feeling awful as well. I had a dexameth. Suppression test. I had 2 mg of dexameth. at 11pm, blood drawn next day, the test came back with results-below normal limits, less than one. My aunt who is a nurse says that is a normal result for a dexameth test. I have many Cushings symptoms, many Addisons, many pituitary. Intermittent nausea, got glasses in June for double vision, it's gotten much worse. Had normal periods after weaning my daughter for 11 months, in Dec they started getting later and later, now none in 4 months time and I'm losing my hair bad and of course all of the extra hair everywhere else. I would like some advice as to what direction I should take with the Dr. I refuse to stop now. The elevated testosterone definitely points to something. But what? hypopituitarism causes decreased hormone levels from all I've read. Is it possible to have Cushings and not have a bad dexameth test result? I hope someone can email me and give me some advise. Thank you all, this site has been very informative. My email address bradley_AT_cpol_DOT_net Lisa Carter <bradley_AT_cpol_DOT_net> KS - Thursday, March 25, 1999 at 08:51:34 Sounds like pretty good advice. Usually if a tumor is under 1 cm and not causing problems it is left alone. If your vision starts to become affected (is this a non-functioning tumor?) then it is removed. You should still be monitored every year with an MRI, though just to make sure it isn't growing. Mine grew 1 mm every year until this last May when it was 1.2 cm. At that point, I decided to have it removed (which was partially successful). You need to understand that you willhave to be monitored for the rest of your life. Not a big deal, but you must make sure that you follow this. Diane <parishrd_AT_netway_DOT_com> Boston, MA - Thursday, March 25, 1999 at 04:49:04 I was recently advised that I have a tumor that is attached to my pituitary gland and the optic nerve between my eyes. At this time no surgery is necessary; however, that will change if the tumor decides to grow. Is there something I should or should not do that'll cause the tumor not to grow? I was also told that if I ever became pregnant, that I'll have to be on "close watch" by my GYN and my neuro- opthomologist because the hormonal changes could possibly cause the tumor to grow at a rapid rate. Any thoughts on these matters? Please advise. Thanks! Mary Ann Cannon <mcannon_AT_nspe.org> Alexandria, VA - Wednesday, March 24, 1999 at 16:41:07 Has anyone every had teeth sensitivity associated with hyperprolactimia or prolactinomas? I have had elevated prolactin levels, taken meds, etc. on an off for two year but recently with increased normal symptoms have noticed that my teeth hurt all the time. I thought it was wierd and was kind of embarrassed to mention it to my doctor. They have a tendancy to look at you like you have three heads sometimes! Thanks. Lori g. <ldg_AT_besskunz_DOT_com> Phoenix, AZ - Wednesday, March 24, 1999 at 13:21:07 I had a two procedures, transphenoidal and crainiotomy (sp) to remove a lemon sized pituitary tumor. I have also been through radiation treatments. I have created a web site to provide real life information to others with the same problems. If you need information about this ailment please see my web site at the address below. If I can answer any questions please do not hesitate to write me. Good luck, God bless and keep your head up. Regards, Steve Steve Howard <showard_AT_one_DOT_net> Cincinnati, OH - Tuesday, March 23, 1999 at 13:41:57 I had a two procedures, transphenoidal and crainiotomy (sp)to remove alemon sized pituitary tumor. I have also been through radiation treatments. I have created a web site to provide real life information to others with the same problems. If you need information about this ailment please see my web site at the address below. If I can answer any questions please do not hesitate to write me. Good luck, God bless and keep your head up. Regards, Steve Steve Howard <showard_AT_one_DOT_net> Cincinnati, OH - Tuesday, March 23, 1999 at 13:41:36 Hi. Just found this site. I was diagnosed with Sheehans syndrome 3 years ago. I would love to talk to anybody else with this disease. Frustrated with relying soley on my physcians advice.(it's good but I need more) I am curious about long term effects of hormone replacement. I have had one child since being diagnosed and am considering another which would be my third. Anybody have anything to share about being pregnant and taking prednisone? Cindy <trippc_AT_home_DOT_com> Toronto, - Monday, March 22, 1999 at 20:33:15 My first time to visit your site. There is a lot of items to digest. I am looking for information on estrogine theropy and its side effects. Penny Lee <Mover8_AT_aol_DOT_com> Phoenix, AZ - Sunday, March 21, 1999 at 21:32:37 Greetings all!!! About 13 years ago I underwent a transphenoidal for a pituitary adenoma which had caused acromegaly and intruded on my visual fields. After the surgery my vision returned. Radiation was needed and I underwent 5 weeks of radiation. I also had several problems, ie. spinal meningitis. I had two further surgeries to repair the packing in my sinuses and am living happily on synthetic hormones. During this process I learned quite a bit about the procedure and have some experience with many facets of the treatments. I would be happy to answer any questions if it will help ease apprehensive regarding treatment. Cheers, Greg Greg <gregs_AT_saber_DOT_net> CA - Friday, March 19, 1999 at 16:31:45 I work with a prenatal nutrition program and one of my client's has a 3 month old baby with "hypopituitarism". I haven't visited her yet as she has been working with other members in the community. She is requesting for other poeple to talk to in the same situation. Please let me know (I am a new internet user so my searches are not that efficient!! Alison Gilbert Alison Gilbert <fnfc_AT_junction_DOT_net> Vernon, BC - Friday, March 19, 1999 at 14:31:52 Has anyone ever heard of the Gamma Knife. It is new to our area,it is supposed to shoot large doses of radiation, to get rid of brain tumors. It is similar to an MRI. On our local news tonight they interviewed a woman before she was to have the procedure done, and later said she had it done, and was doing well. I am just wondering if anyone else has ever heard of this. I am very interested. Thanks. Teresa <Terken2621_AT_aol_DOT_com> Pittston, PA - Friday, March 19, 1999 at 00:13:33 I am glad to see you updated your page.. I have been taking Parlodel for years.. I have not been successful in having children and at almost 40 I am not trying to get pregnant anymore.. My question.. Should I stop taking the Parlodel? If no, why? If Yes, how long should I continue to take it? Until Menopause.? I had shown info from this page to my fertility physician and he discounted it.. as being "Internet Info".. This shows his ignorance and unwillingness to delve into a specific condition that affects some of his patients who want children. Thank You and please continue to update this page.. Rebecca Felts <beckyf_AT_midsouth.rr_DOT_com> bartlett, Tn - Thursday, March 18, 1999 at 21:00:05 Information of programs or seminars on pituitary tumors Silvana Bajana <sbajana_AT_cnr.edu> - Wednesday, March 17, 1999 at 17:56:56 To Cynthia of Denver: Thanks for your email. When I replied, the computer somehow ate it and your address got lost too. Please send your address again and I'll write again! Sorry - don't know what happened. Michelle Michelle <Michelle_AT_rustic_AT_dnvr.uswest_DOT_net> Evergreen, CO - Wednesday, March 17, 1999 at 12:46:17 i'm looking for information on penial discharge/blood Kathleen Kelting <ditzyprincess_AT_yahoo_DOT_com> Tucson, AZ - Wednesday, March 17, 1999 at 10:33:17 Interested in pituitary adenomas and drugs for it Don Moshier <Dmosh_AT_aol_DOT_com> - Monday, March 15, 1999 at 20:57:33 I am a 30 year old female who has a suspected pituitary microadenoma (7mm). I say suspected, because there is a dip and abnormality in my pituitary, but it is not defined enough to say exactly what it is. Recently, I have been diagnosed with adrenal insufficiency, low thyroid function, and low blood sugar. I am on steroids for the adrenal problem. I also had no menstrual cycle. I see a nuerosurgeon and an endocrinologist. Neither of them think that anything should be done about this except to give me drugs to control the insufficiencies that this seems to be causing. Is this normal, to do nothing? Also, 8 days ago I had what I thought was a migraine (i saw the aura etc.), but the headache has not gone away. It is in the top center of my head behind my eyes. My regular doctor has given me every pain killer possible. I am very sensitive to light and feel like I can hear my heart in my head. I have never had a headache last for this long. Has anyone experienced any similar attacks due to microadenoma? Thanks,Victoria Victoria <TORY0202_AT_AOL_DOT_com> AUSTIN, TX - Wednesday, March 10, 1999 at 14:07:56 My wife, age 38 has just been diagnosed with a small pituitary adenoma, confirmed by an MRI and elevated levels of Prolacting=180 to 350. She is currently in a special headache clinic in Chicago, the DIamond Headache Clinic where she has been for 12 days and was hospitalized 11 days just prior to this one for the same intractable migraine. This is a 6 week severe headache now and we are intersted in hearing from anyone experiencing onset of migraine/vascular headaches with the pit tumor and of any medications that people have had successfully address decreasing the tumor size and eliminating the headaches. Thanks, looking forward to hearing any sharings on this. Barry Pollack <bpollack_AT_carolinacaring.org> Charlotte, NC - Monday, March 8, 1999 at 18:22:42 Recently diagnosed w/ pituitairy adenoma. Mine is 0.6 cm. I was worried but now kknowing there is a web site for this disorder I feel much better about the diagnosis and prognosis. S. Franklin <d-sfranklin_AT_mediaone_DOT_net> Cambridge, MA - Monday, March 8, 1999 at 13:24:49 I'm very happy to have a site that I can get information like this.My brother had a brain tumor removed 25 yrs ago and I'm happy to say he's doing great. Dawn Herold <dellson_AT_webtv_DOT_net> Maryville, TN - Sunday, March 7, 1999 at 02:43:22 Hi, My name is Randy, 43yM, who had bloodwork done because disability to have or maintain erection on on regular basis. Bloodwork showed very low testosterone level (85), second bloodwork showed elevated levels of prolactin. MRI performed and showed a 4mm adnoma on Pituitary gland. Haven't talked with the Dr. yet as far as next step, but I certainly have many concerns. I am aware that surgery and drugs can be described to help or cure my problem. If anyone out there has experienced similar problems , I would love the piece of mind in hearing from you, your planned approach on your problem, your future prognosis and any complications you may have encountered. God Bless and thank you for your views. Randy <Bamapits_AT_mediaone_DOT_net> Jacksonville, fl - Saturday, March 6, 1999 at 20:10:19 Hello to Mary I am in Michigan too. This is a little late notice but there is a meeting Saturday March 6. It is an education and support meeting sponsored by the Henry Ford Hospital Pituitary Disorders Center. This meeting will feature information about Cushings. Our speaker is Dr Jack Rock. If any one is interested contact me by email or phone 810 227-5615 or visit the website listed for meeting information and future events. Teresa Sullivan <pitps_AT_aol_DOT_com> Brighton, MI - Friday, March 5, 1999 at 20:29:02 I have a pitutary tumor and have been dealing witht his for about 6 years. I have had quite a few problems with my menstral cycle and much more. I would like to receive info on the the surgery for this problem. Lori A. Love <lori_AT_isrv_DOT_com> Evans City, PA - Friday, March 5, 1999 at 20:10:32 cushings disease Julia Mouse`` cicero, il - Friday, March 5, 1999 at 00:01:12 I had a tumor removed in 1992 and it has returned and now have several chronic conditions that I did not have before: hypertenson, hypothyrodism, diabetes insipdus, and interrestingly enough as my prolactin level increased my depression returned and once again I must take an antidepressant (ZOLOFT) even though I had been able to go over three years with no depression following my surgery. Can you tell me what response you have had to this aspect? I know there is a problem in post-partum women, my question is if their prolactin levels are elevated and they feel this way, why is it not reported more, I have been able to find this mentioned in only one text and it was of some age. I know Dr. Edward Laws who did my surgery found it of some intrest. Also, one year after my surgery a young boy that was a neighbor of mine but that I had almost no contact with during his life was Dx with hyperprolactomia, what is the statistical odds of this? And have you ever heard of two people within 1/4 mile and not of the same family having tumors? Could there be some vector or perhaps a viral cause in the immune response that did not get turned off in the prolactin cells in both of us? He would have been a very small child about the time my tumor started growing the first time. I would appreciate any thoughts you have on any of this. Sharon <ME-SAM_AT_webtv_DOT_net> Williamsburg, VA - Wednesday, March 3, 1999 at 02:28:03 Had 1.3cm tumor removed on 2-19-98.It was growth hormone producing causing agromeglia.was kept on steriods too long and now have a cushing-like state. trying to wean off steriods but is painful would appreciate any helpful comments or suggestions Susan <Mammafox> Haawley, PA - Tuesday, March 2, 1999 at 09:53:05 Pitutary adenoma 1.3cm producing acrameglia removed 2-19-98 somatamedin levels within normal range now-kept on steriods too long after surgery which produced a cushing-like state now tapering off steriods but finding it difficult and somewhat painful.Appreciate any helpful comments Susan <Mammafox> Hawley, PA - Tuesday, March 2, 1999 at 09:43:36 Desperare for answer to one question - are there any other known or suggested causes for elevated prolactin besides the presence of a pituitary tumor? I've had elevated prolactin (up to 70) for 15 years and have been on a small dose of parlodel. MRI never showed anything - so doctors ASSUME is prolactinemia. Is there something else that could cause this??? Any help is appreciated. Nancy Psaras <psarasn_AT_us.ibm_DOT_com> - Monday, March 1, 1999 at 13:23:10 Hi this is Mark again. Just to let you know I had my transsphenoidal surgery 2-18-99 and I seem to be doing ok.The packing in the nose was the worst thing for me. After I was released from the hospital on day 4 following the surgery I had a pretty stiff neck and 3 days later went back to the hospital where they said I had a spinal fluid leak where they had taken out the lumbar drain in my back. They pumped full of fluids and caffiene and that seems to have taken care of the problem. They were not able to get all the tumor as it was to close to the carotid artery and now they say they may or may not do radiation. Have followup with pit surgeon in 4-6 weeks. So far so good. Glad the headaches are gone and I can sleep at night. Take care to all of you. Mark Mark <musch_AT_gte_DOT_net> - Monday, March 1, 1999 at 12:05:51 I have test results showing that my pituitary gland is producing a high level of FSH (Folicullar Stimulating Hormone). I have also had an MRI of my brain for a different reason and it showed an enlarged pituitary gland. I am experiencing fertility problems. Is there anyone else out ther with similiar case? Scottydog <kblong_AT_juno_DOT_com> - Saturday, February 27, 1999 at 07:56:54 I am a 30 year old female who had a pituitary adenoma removed by Dr. John D. Brophy in 1991 at the Balboa Naval Hospital. My tumor did not respond to Bromocriptine. In fact, it grew during drug therapy. My vision fields were getting worse during the year of treatment. Finally, my doctor agreed to do the surgery. At the time I was only 21/22 and knew I would want to have children someday. By the time of the surgery, my tumor had spit and I now had 2 pituitary tumors. I had the transphenodial surgery. I recovered very fast. My doctor told me I had some pituitary damage which the extent of was unknown and that I would need extensive endochrine therapy inorder to become pregnant. In fact, he told me to forget it. 2 years later I got pregnant and was able to give birth to my only son. After the surgery, my amenorreaha never went away. I still have irregular periods, my vision has changed 3 times in 6 years, my headaches have returned and I even have developed endometriosis. In 1996 I had a myomectomy to remove a tumor off of my uterus. Now, my tumor is back. Unfortunately, I am being treated again by VA doctors who know absolutely nothing about my tumor or how to successfully treat me. I found your website and was exstatic to find all the good information that you posted. I plan on taking this information to my doctors in hopes that they will read it and begin to treat me the correct way. I wish all those out there who have a pituitary tumor of any sort the best of luck and don't worry if it comes back someday. Technology has come such a long way since I had my first surgery. In fact, I was one of the first transfenodial surgeries done then and gamma knife radiation was not even an option. Good luck and keep posting all this helpful information> Mary E. Taggart Flint, MI - Friday, February 26, 1999 at 14:05:11 well i find it hard to believe that i am the only one on the planet with adrenal cortical carcinom, or adrenal neoplasm. i am 34 years old, and am a survivor for seven years. beat those odds. i take mitotayne or lysodren, and varriing symtymal or sides, i have had two reoccurences and x ray therapy. i am also under the care of an oncologist... so what do i do now??? christopher wyckoff <bulls_AT_davesworld_DOT_net> peoria, il - Thursday, February 25, 1999 at 23:44:41 I have recently been diagnosed with pituitary adenoma and have been doing some "research" on the topic. Any testimonials or suggestions would be appreciated. Thanks, Cynthia Cynthia L. Barron <cbarron_AT_pharmdata_DOT_com> Atlanta, GA - Tuesday, February 23, 1999 at 22:28:01 THIS IS NICE GUEST BOOK . DOCTORS PLEASE HELP ME HISTORY OF MY DISEASE I SUFFERED FROM CHICKEN POX IN THE BEGINNING OF 1988. RED PIMPLES WERE APPEARED ON MY BODY. AFTER SOME DAYS THESE PIMPLES WERE FILLED WITH WATER AS A RESULT OF WHICH I CAUGHT FEVER. I FELT UNEASY AND BROKEN HEALTH. I CONTACTED MY DOCTOR WHO STARTED MY TREATMENT FOR CHICKEN POX. I WAS NOT FULLY RECOVERED BUT MY DOCTOR DECLARED ME QUITE WELL. MORE RED PIMPLES WERE APPEARING ON MY BODY BUT MY DOCTOR ADVISED ME TO GIVE UP PREVENTION. HE DIRECTED ME TO HAVE A BATH AND USE COLD DRINKS. I ACTED UPON THE SUGGESTION OF MY DOCTOR. AS A RESULT OF IT I FELT FEVER AND COLD EVERY TIME. EVEN DURING THE MONTH OF JUNE, WHEN TEMPERATURE OF OUR CITY IS 47oC, I FEEL COLD IN THE SUN AND ALSO NOW I CAN NOT SIT UNDER A FAN, CAN NOT WASH HANDS & FACE , AND CAN NOT HAVE A BATH. IT IS VERY STRANGE TO SAY THAT I HAVE TAKEN A BATH LAST TIME ON 12TH JUNE, 1993. NOW I CAN NOT HAVE A BATH, BECAUSE I FEEL VERY COLD. I AM IN MUCH TROUBLE. I CONTACTED MANY DOCTORS TO GET RID OF THIS TROUBLE BUT ALL IN VAIN. AFTER SIX YEARS OF MY ABOVE MENTIONED DISEASE I GOT CT. SCAN TEST OF PITUITARY GLANDS OF MY BRAIN. ACCORDING TO THE TEST REPORT THERE IS A TUMOR IN MY BRAIN AT THE PITUTARY GLAND (PITUTARY EDENOMA) BRAIN SURGERY IN PAKISTAN IS VERY DANGEROUS. IT IS A VERY DANGEROUS OPERATION THEREFORE I CAN NOT TAKE ITS RISK IN PAKISTAN. IN THE START OF 1996. I CONTACTED SHAUKAT KHANAM MEMORIAL HOSPITAL FOR CANCER IN LAHORE CITY AND GOT TREATMENT FOR MY BRAIN TUMOUR THROUGH RADIATION BUT COULD NOT GET RELIEF FROM THIS TROUBLE AND ALSO NOW I GOING TO SHAUKAT KHANUM MEMORIAL CANCER HOSPITAL IN LAHORE FOR FALLOWUP. PRESENTLY I AM USING FOLLOWING MEDICINES. (1) THYROXIN 50 MCG TAB. 6,TABLETS BEFORE BREAK FAST (2) DELTACORTIL 5 MG TAB. 2 TABS. IN MORNING, 1 TAB. IN EVENING. (3) PARLODEL (BROMOCRIPTINE) 1.5 TABS MORNING AND EVENING. AS RESULT OF THE ABOVE SAID DISEASE MY WEIGHT HAS INCREASED BY 40 KGS. (FROM 70KGS. TO 110 KGS.). MY SKIN HAS BECOME VERY THICK. I FACE UN-USUAL PERSPIRATION. MY DOCTOR OPINED THAT HYPOTHAIAMUS AND PITUTARY GLAND ARE NOT FUNCTIONING NORMALLY DUE TO WHICH MY BODY'S ENDOCRINE SYSTEM IS NOT NORMAL. I APPEAL FOR SUPLY OF THE FOLLOWING INFORMATIONS: 1. IF YOU CAN TREAT MY THIS DISEASE PLEASE INTIMATE DETAILS IN THIS REGARD. 2. IF ANY PATIENT OF THIS DISEASE HAS BEEN GIVEN SUCCESSFUL TREATMENT OR NOT IF YES, WHETHER THE PATIENT IS FULLY RECOVERED OR NOT. 3. IF ANY RESEARCH REGARDING THIS DISEASE IS BEING CARRIED OUT, PIEASE INTIMATE THE LATEST DEVELOPMENT AND PLEASE INTIMATE NAME, MAILING ADDRESS AND E-MAIL NUMBER OF THAT INSTITUTE/HOSPITAL/RESEARCH CENTRE. 4. HAVE YOU ANY MEDICINE OR TREATMENT PROCEDURE THROUGH WHICH USE THE FEELING OF TOO MUCH COLD IN MY BODY MAY BECOME LESS OR FINISHED TOTALLY. IT IS MY HUMBLE REQUEST THAT REPLIES TO THE ABOVE MENTIONED QUESTIONS MAY KINDLY BE SENT TO ME FOR WHICH I SHALL BE HIGHLY THANKFUL FOR THIS FAVOUR. NOTE MY: WEIGHT=110 KGS., SEX=MALE, HEIGHT= 5 1/2 FEET, DATE OF BIRTH=1ST JUNE 1967 NOTE MY LATEST MEDICAL TESTS REPORTS ARE THESE: PROLACTIN 128.0 NG/ML MALES 2.5-17 1. T3 TOTAL 46.0 NG/DL 82-179 2. T4 (THYROXIN) 3.6 PG/DL 4.5-12.5 3. TSH 0.041 PLU/ML 0.4-4.0 4. CORTISOL 1.0 PG/DL AM 5-25 5. CORTISOL 1.0 PG/DL PM 3-15 PLEASE REPLY ME AS EARLY AS POSSIBEL & TELL ME HOW CAN I GET HEALTH PLEASE PLEASE PLEASE....................................................................................................... THANK YOU MY MAILING ADDRESS: SOHAIL AHMAD HOUSE # 2-S-28, STREET # 2, BLOCK # 8, SARGODHA-PAKISTAN TEL. # 0092-451-741201/741143/741209 E-mail: Subhan_AT_sgd.nexlinx_DOT_net.pk DOCTORS PLEASE HELP ME HISTORY OF MY DISEASE I SUFFERED FROM CHICKEN POX IN THE BEGINNING OF 1988. RED PIMPLES WERE APPEARED ON MY BODY. AFTER SOME DAYS THESE PIMPLES WERE FILLED WITH WATER AS A RESULT OF WHICH I CAUGHT FEVER. I FELT UNEASY AND BROKEN HEALTH. I CONTACTED MY DOCTOR WHO STARTED MY TREATMENT FOR CHICKEN POX. I WAS NOT FULLY RECOVERED BUT MY DOCTOR DECLARED ME QUITE WELL. MORE RED PIMPLES WERE APPEARING ON MY BODY BUT MY DOCTOR ADVISED ME TO GIVE UP PREVENTION. HE DIRECTED ME TO HAVE A BATH AND USE COLD DRINKS. I ACTED UPON THE SUGGESTION OF MY DOCTOR. AS A RESULT OF IT I FELT FEVER AND COLD EVERY TIME. EVEN DURING THE MONTH OF JUNE, WHEN TEMPERATURE OF OUR CITY IS 47oC, I FEEL COLD IN THE SUN AND ALSO NOW I CAN NOT SIT UNDER A FAN, CAN NOT WASH HANDS & FACE , AND CAN NOT HAVE A BATH. IT IS VERY STRANGE TO SAY THAT I HAVE TAKEN A BATH LAST TIME ON 12TH JUNE, 1993. NOW I CAN NOT HAVE A BATH, BECAUSE I FEEL VERY COLD. I AM IN MUCH TROUBLE. I CONTACTED MANY DOCTORS TO GET RID OF THIS TROUBLE BUT ALL IN VAIN. AFTER SIX YEARS OF MY ABOVE MENTIONED DISEASE I GOT CT. SCAN TEST OF PITUITARY GLANDS OF MY BRAIN. ACCORDING TO THE TEST REPORT THERE IS A TUMOR IN MY BRAIN AT THE PITUTARY GLAND (PITUTARY EDENOMA) BRAIN SURGERY IN PAKISTAN IS VERY DANGEROUS. IT IS A VERY DANGEROUS OPERATION THEREFORE I CAN NOT TAKE ITS RISK IN PAKISTAN. IN THE START OF 1996. I CONTACTED SHAUKAT KHANAM MEMORIAL HOSPITAL FOR CANCER IN LAHORE CITY AND GOT TREATMENT FOR MY BRAIN TUMOUR THROUGH RADIATION BUT COULD NOT GET RELIEF FROM THIS TROUBLE AND ALSO NOW I GOING TO SHAUKAT KHANUM MEMORIAL CANCER HOSPITAL IN LAHORE FOR FALLOWUP. PRESENTLY I AM USING FOLLOWING MEDICINES. (1) THYROXIN 50 MCG TAB. 6,TABLETS BEFORE BREAK FAST (2) DELTACORTIL 5 MG TAB. 2 TABS. IN MORNING, 1 TAB. IN EVENING. (3) PARLODEL (BROMOCRIPTINE) 1.5 TABS MORNING AND EVENING. AS RESULT OF THE ABOVE SAID DISEASE MY WEIGHT HAS INCREASED BY 40 KGS. (FROM 70KGS. TO 110 KGS.). MY SKIN HAS BECOME VERY THICK. I FACE UN-USUAL PERSPIRATION. MY DOCTOR OPINED THAT HYPOTHAIAMUS AND PITUTARY GLAND ARE NOT FUNCTIONING NORMALLY DUE TO WHICH MY BODY'S ENDOCRINE SYSTEM IS NOT NORMAL. I APPEAL FOR SUPLY OF THE FOLLOWING INFORMATIONS: 1. IF YOU CAN TREAT MY THIS DISEASE PLEASE INTIMATE DETAILS IN THIS REGARD. 2. IF ANY PATIENT OF THIS DISEASE HAS BEEN GIVEN SUCCESSFUL TREATMENT OR NOT IF YES, WHETHER THE PATIENT IS FULLY RECOVERED OR NOT. 3. IF ANY RESEARCH REGARDING THIS DISEASE IS BEING CARRIED OUT, PIEASE INTIMATE THE LATEST DEVELOPMENT AND PLEASE INTIMATE NAME, MAILING ADDRESS AND E-MAIL NUMBER OF THAT INSTITUTE/HOSPITAL/RESEARCH CENTRE. 4. HAVE YOU ANY MEDICINE OR TREATMENT PROCEDURE THROUGH WHICH USE THE FEELING OF TOO MUCH COLD IN MY BODY MAY BECOME LESS OR FINISHED TOTALLY. IT IS MY HUMBLE REQUEST THAT REPLIES TO THE ABOVE MENTIONED QUESTIONS MAY KINDLY BE SENT TO ME FOR WHICH I SHALL BE HIGHLY THANKFUL FOR THIS FAVOUR. NOTE MY: WEIGHT=110 KGS., SEX=MALE, HEIGHT= 5 1/2 FEET, DATE OF BIRTH=1ST JUNE 1967 NOTE MY LATEST MEDICAL TESTS REPORTS ARE THESE: PROLACTIN 128.0 NG/ML MALES 2.5-17 1. T3 TOTAL 46.0 NG/DL 82-179 2. T4 (THYROXIN) 3.6 PG/DL 4.5-12.5 3. TSH 0.041 PLU/ML 0.4-4.0 4. CORTISOL 1.0 PG/DL AM 5-25 5. CORTISOL 1.0 PG/DL PM 3-15 PLEASE REPLY ME AS EARLY AS POSSIBEL & TELL ME HOW CAN I GET HEALTH PLEASE PLEASE PLEASE....................................................................................................... THANK YOU MY MAILING ADDRESS: SOHAIL AHMAD HOUSE # 2-S-28, STREET # 2, BLOCK # 8, SARGODHA-PAKISTAN TEL. # 0092-451-741201/741143/741209 E-mail: Subhan_AT_sgd.nexlinx_DOT_net.pk SOHAIL AHMAD <subhan_AT_sgd.nexlinx_DOT_net.pk> SARGODHA, PUNJAB - Tuesday, February 23, 1999 at 13:57:21 Hi, I just had a tumor removed in December 1998, I had cushings diease. I was told that I would return to normal after surgery. I have been very sick for about 5 years now. I've gained alot of weight I wasn't having my periods. I've had a hysterectomy two years ago. They diagnosed me with Cushings in July. When I was put in the hospital because of juvenile diabetes. (I had never had diabetes until then. My doctor said that I wouldn't have diabetes any more and my blood pressure would come down, and I would lose weight. Nothing has changed. They are now testing my ACTH levels again. I just found this web site and have enjoyed reading. If any one else has had Cushings diease and has had surgery did you start to get better after surgery? I'd like to talk to someone else who has been there done that. Janel Benton <muskiemanjps_AT_worldnet.att_DOT_net> Woods Cross, Ut - Monday, February 22, 1999 at 17:10:58 I have been diagnosed as having Cushings Syndrome and I am scheduled to undergo an adrenalectomy 3/1/99. I am interested in hearing from anybody who has undergone this procedure and what happened to them after the surgery, recovery time, treatment, hospitalization, etc. My last day of work will be 2/26 and since I do not have an email address yet for home, this is my work location. Thanks in advance for any information. Charman Ibarra <charman.ibarra_AT_ncal.kaiperm.org> - Monday, February 22, 1999 at 16:33:16 I had surgery to remove a pituitary tumor in 1995, then started taking Parlodel again, because my prolactin level did not decrease as much as expected. Once Dostinex became available, I began taking it instead of the Parlodel. I had fewer side effects, and was actually able to get pregnant! I went off the medication, and my pregnancy went well. I felt better than I have in a long time! Now, my baby is six months old, and I am still nursing him. My prolactin level is up to 99, which is higher than normal for a nursing mother. My doctor told me that I may have to go back on Dostinex, and I would stop nursing. I am interested in hearing from anyone who has had a baby, despite the presence of a pituitary tumor. Thanks. Linda Burk <burkmusic_AT_earthlink_DOT_net> - Sunday, February 21, 1999 at 17:24:17 THIS IS VERY USEFUL GUEST BOOK. I AM WRITING MY HISTRY OF DISEASE. IF ANY OTHER PERSON HAVE OR HAD SAME DISEAS. KINDELY HE CONTACT MEPLEASE PLEASE PLEASE ... DOCTORS PLEASE HELP ME HISTORY OF MY DISEASE I SUFFERED FROM CHICKEN POX IN THE BEGINNING OF 1988. RED PIMPLES WERE APPEARED ON MY BODY. AFTER SOME DAYS THESE PIMPLES WERE FILLED WITH WATER AS A RESULT OF WHICH I CAUGHT FEVER. I FELT UNEASY AND BROKEN HEALTH. I CONTACTED MY DOCTOR WHO STARTED MY TREATMENT FOR CHICKEN POX. I WAS NOT FULLY RECOVERED BUT MY DOCTOR DECLARED ME QUITE WELL. MORE RED PIMPLES WERE APPEARING ON MY BODY BUT MY DOCTOR ADVISED ME TO GIVE UP PREVENTION. HE DIRECTED ME TO HAVE A BATH AND USE COLD DRINKS. I ACTED UPON THE SUGGESTION OF MY DOCTOR. AS A RESULT OF IT I FELT FEVER AND COLD EVERY TIME. EVEN DURING THE MONTH OF JUNE, WHEN TEMPERATURE OF OUR CITY IS 47oC, I FEEL COLD IN THE SUN AND ALSO NOW I CAN NOT SIT UNDER A FAN, CAN NOT WASH HANDS & FACE , AND CAN NOT HAVE A BATH. IT IS VERY STRANGE TO SAY THAT I HAVE TAKEN A BATH LAST TIME ON 12TH JUNE, 1993. NOW I CAN NOT HAVE A BATH, BECAUSE I FEEL VERY COLD. I AM IN MUCH TROUBLE. I CONTACTED MANY DOCTORS TO GET RID OF THIS TROUBLE BUT ALL IN VAIN. AFTER SIX YEARS OF MY ABOVE MENTIONED DISEASE I GOT CT. SCAN TEST OF PITUITARY GLANDS OF MY BRAIN. ACCORDING TO THE TEST REPORT THERE IS A TUMOR IN MY BRAIN AT THE PITUTARY GLAND (PITUTARY EDENOMA) BRAIN SURGERY IN PAKISTAN IS VERY DANGEROUS. IT IS A VERY DANGEROUS OPERATION THEREFORE I CAN NOT TAKE ITS RISK IN PAKISTAN. IN THE START OF 1996. I CONTACTED SHAUKAT KHANAM MEMORIAL HOSPITAL FOR CANCER IN LAHORE CITY AND GOT TREATMENT FOR MY BRAIN TUMOUR THROUGH RADIATION BUT COULD NOT GET RELIEF FROM THIS TROUBLE AND ALSO NOW I GOING TO SHAUKAT KHANUM MEMORIAL CANCER HOSPITAL IN LAHORE FOR FALLOWUP. PRESENTLY I AM USING FOLLOWING MEDICINES. (1) THYROXIN 50 MCG TAB. 6,TABLETS BEFORE BREAK FAST (2) DELTACORTIL 5 MG TAB. 2 TABS. IN MORNING, 1 TAB. IN EVENING. (3) PARLODEL (BROMOCRIPTINE) 1.5 TABS MORNING AND EVENING. AS RESULT OF THE ABOVE SAID DISEASE MY WEIGHT HAS INCREASED BY 40 KGS. (FROM 70KGS. TO 110 KGS.). MY SKIN HAS BECOME VERY THICK. I FACE UN-USUAL PERSPIRATION. MY DOCTOR OPINED THAT HYPOTHAIAMUS AND PITUTARY GLAND ARE NOT FUNCTIONING NORMALLY DUE TO WHICH MY BODY'S ENDOCRINE SYSTEM IS NOT NORMAL. SOHAIL AHMAD <subhzn_AT_sgd.nexlinx_DOT_net.pk> SARGODHA, PUNJAB - Sunday, February 21, 1999 at 14:18:56 a friend of mind was just diagnosed with something called craniopharayngomia and I am completely in the dark about what it is. Anyone out there that knows about it please email me and let me know what it is. thanks Ginger Hartman <mystcwtch_AT_hotmail_DOT_com> Baton Rouge, LA - Sunday, February 21, 1999 at 09:27:21 Thanks for all the information on this site!! Ruth Ford <Ruth_AT_startel_DOT_net> Bryan, TX - Saturday, February 20, 1999 at 15:00:42 Hi Everyone! I read Steve's post below me and would encourage everyone to check out his very interesting website. Also, there are many websites for and by pituitary patients that might be useful. Many of us our linked together...if you have a page you that we might not know about....please post your URL here...many of us check this site on a regular basis. I am a prolactinoma patient that has never undergone surgery. I have been on both Parlodel and Dostinex and am always happy to share whatever I can with anyone that might be considering that kind of treatment. Take Care, Lori http://members.aol_DOT_com/tomajestic Lori <ToMajestic_AT_aol_DOT_com> MI - Friday, February 19, 1999 at 21:54:01 I am a new cushings subject waiting for treatment. Michael Holm <holmy_AT_jps_DOT_net> Roseville, Ca. - Thursday, February 18, 1999 at 21:22:01 Hi, My entry below missed my email address. Hope this comes through this time. Michelle <rustic_AT_dnvr.uswest_DOT_net> Evergreen, CO - Thursday, February 18, 1999 at 12:13:54 Hi, Had my transphnoid surgery in 1978. Still take 10mgs of parlodel daily. Remember, just because you have had the surgery or a special treatment, you will always be an endocrine patient. Regardless of your prolactin level, other endocrine related medical issues may arise in years to come. Learn as much as you can about the endocrine system and how it impacts on your body. Sine 1978, I have had the following endocrine medical issues arise: Stasis Dermatitis, a swelling and redness of the lower legs; Fibromyalgia, all trigger pionts are involved. Take care Carla Dolney <kencarla_AT_erols_DOT_com> Alexandria, VA - Wednesday, February 17, 1999 at 22:37:33 Had My surgery in 1978... still take 10 mgs of Parlodel daily. Remember... just because you have had surgery or treatment, does not mean you are free of endocrine related medical issues. Please keep aware of all aspects of the endocrine system. Since 1978, I have had the following endocrine medical problems arise: Stasis Dermatitis, swelling, reddness of lower legs; Fibromyalgia diagnosed two years ago, although I had the symptoms for 10 years. Take care Carla Dolney <kencarla_AT_eorls_DOT_com> Alexandria, VA - Wednesday, February 17, 1999 at 22:32:02 Had a 13mm tumor removed in 95, Montreal Canada. Here are some things I have learned: Doctors can be wrong - even great ones.Question everything. Learn everything about your disease. Don't give up and don't stop until you find a way to feel better. Millions of people every day have headaches, anxiety and depression - and they don't have pituitary disfunction. Some of these things are just part of life. None of us asked for this. We can, usually after way too much strife, misinformation, put-downs by doctors and years of feeling bad, get to feel good again. Keep in touch with other patients, drink orange juice, take naps, stay positive. On the financial side, I don't know quite how it works in the U.S. but if you're paying for treatment, a lot of your best doctors have trained in Canada (Toronto or Montreal) and visa versa, yet your dollar is worth almost 2 of ours right now, just a thought! I'd love to hear from other post-op patients who have had good results, or any one else who wants info or encouragement. There are not enough bytes to describe the hell I lived through to get better but now I'm a pro at this. I'm happy and healthy again and I wish all of you the same. Joannne p.s. Laugh, keep your sense of tumor! joanne <jmc_AT_echelon.ca> ottawa, on - Wednesday, February 17, 1999 at 15:34:41 I am one week post op Adenoma pit removal acromegaly also,since surgery I seem some what foggie and very lite headed.tonight I started Dexamethason my vision also seems odd, Would to hear from others who have gone through this,I'v spoken with the Drs on this and they don't seem to know why they say they never had any one with these problems is it just me? Jeanne., Jeanne Larimer <jarhl50_AT_cyberback_DOT_com> conway, ar - Wednesday, February 17, 1999 at 03:34:32 I have a small prolactinoma (only 5mm) and have opted to just take dostinex vs. have the surgery. Lately, however, I am so sick of feeling tired, fuzzy thinking, poor libido (you all know the symptoms), that I'm wondering if I should just go ahead and get the surgery overwith. I am afraid of the hypopituitarism risks, however. Has anyone out there been in a similar situation (i.e. small tumor, feeling lousy on meds) and decided to go ahead with surgery? How did it go? If you had it to do over again, would you still go ahead with it? Input appreciated. By the way, Dr. Lillehei at Colorado University has a wonderful reputation for pituitary tumors (and he has a great bedside manner, too). Thanks Michelle Evergreen, CO - Tuesday, February 16, 1999 at 20:27:34 I have been searching for some verification that I am not losing my mind. I have had my prolactinama for 9 years but it seems the symptoms are taking me over. I am continuously fatigued;a severe lack of libido; have sought counseling as of late; difficulty sleeping and the list goes on. I need to talk to others who are experiencing the same or similar effects. Nancy Hepner <nhepner_AT_etown.k12.ky.us> Elizabethtown, ky - Tuesday, February 16, 1999 at 12:53:38 Pituitary macroadenoma . Prolactinoma . diagnosed 1995 Thank you for educating me about my disorder. Tammy <KeyaKatie_AT_aol_DOT_com> - Monday, February 15, 1999 at 22:53:10 Pituitary macroadenoma . diagnosed 1995 Tammy <KeyaKatie_AT_aol_DOT_com> - Monday, February 15, 1999 at 22:15:08 I have gont through two surgeries to remove a Lemon sized Pituitary macrp adenoma. I am currently going through hormone therapy and doing very well. I have chronicled (sp) my experience on a web site, the address is http://w3.one_DOT_net/~showard/start.htm. I will be glad to answer any questions that anyone might have. I am surviving very well and have gone through it. I have also recently completed radiation therapy on the remaining 10% of the tumr. Information about that experience will be included in my page in the next month or so. I have also included many links to other sites that you may find informational. Please do not hesitate to contact me if you have any questions about what i have gone through. I was able to find many wonderful people to answer my questions and would be glad to do the same for others. Good luck and keep your head up. Steve (showard_AT_one_DOT_net) Steve Howard <showard_AT_one_DOT_net> Cincinnati, OH - Monday, February 15, 1999 at 17:01:51 Kristy Denton <KMathis_AT_webtv_DOT_net> Jefferson, TN - Monday, February 15, 1999 at 16:00:08 I too have a high prolactin level. I stopped having periods when I was 22 yrs old. My doctor just told me my reproductive system had shut down and he was not sure why. He also told me I would never have any children. After many doctors and finally getting pregnant they discovered my condition. Since then though I cannot seem to get anyone to do anything about this condition and all my gyno doctor has done is put me on premphase for hormone replacement. This has been going on now for 15 years and I am 38 years old and only had my one daughter who is 14 now. I wish I know of the possible treatments a long time ago and possible could have had more children. It would have been great to know I was not alone. Anyone with similar systoms please write. I have excessive weight gain, no periods, tired alot, headaches and wear glasses for the first time in my life. I did have a mri that showed a tumor, but was told it was small and nothing needed be done about it. I would love to find a doctor in my area who really would like to help me. I know it is to late for more children, but I worry about all the years of hormone therapy. Any answers. Mary Ashton <mea2461_AT_webtv_DOT_net> - Monday, February 15, 1999 at 11:49:22 I have congential panhypopituitarism and took Human Growth Hormone as a child for 13 years. I am now 35yrs old and am interested in finding out more about HGH replacement in adulthood. I have heard about various drug studies but havent' been able to find out more. I would appreciate hearing from anyone who has tried growth hormone as an adult or knows more about the drug studies and what the complications of this treatment, if any, are (besides the shots). Also interested in how to pay for it (Insurance?) thanks! Cathy Saville <CMSaville_AT_aol_DOT_com> Albion, MI - Monday, February 15, 1999 at 11:34:14 What a great site. My mother was diagnosed with Cushings disease 10 years ago and had a tumour and most of her pituitary gland removed. It was a very stressful and worrring time for her as well as the family. We had never heard of it nor did we know of anyone who had been through it all. My mother now 64 is still on medication and gets very tired when she over does it. I will have to get her on the computer so she knows that she's not alone!! Michele MICHELE <tonylr_AT_ihug.co.nz> AUCKLAND, - Sunday, February 14, 1999 at 04:33:50 If you are in New England and want to join our pituitary tumor support group please email me. Or if you just want to check out our new message board/chat room go to: http://forums.delphi_DOT_com/m/main.asp?sigdir=NEPituitary It is part of the Delphi Forum. You must sign in once with a password, but your cmputer will save that so you won't have to remember in the future! Hope to see you there. Diane Diane <parishrd_AT_netway_DOT_com> Boston, MA - Saturday, February 13, 1999 at 10:59:06 I am not sure how much Dr. Zervas still operates. Everyone I know in Boston goes to Dr. Brooke Swearingen. He does (I think) over 200 of these transphenoidal surgeries a year so he has a lot of practice. Diane <parishrd_AT_netway_DOT_com> Boston, MA - Saturday, February 13, 1999 at 05:07:00 Folks: Thanks Diane for your recommendation about Dr. Laws. Could people please recommend more surgeons. Whos the best for transsphenoidal resection at MGH (Is it Dr.Zervas?) , and also the best few nationwide. In and around DC/Baltimore would be great but I can travel pretty anywhere. Thanks everyone. Rudy Valdez <perform_AT_rocketmail_DOT_com> Fairfax, VA - Saturday, February 13, 1999 at 00:51:32 My name is Amy Kernan, I am a 22 year old white female. I was diagnosed with a pituitary prolactinoma at the age of 14 and subsequently put on very high doses of Parlodel (over 40 Mgs. a day). I was told by my endocrinoligist, at the time, that the nausea and dizziness I was experiencing was all in my head. I got no sympathy from him, and I began to think I was crazy. I just want anyone out there on Parlodel to know that you have my sympathy. It's not in your head, Parlodel can make your life unbearable. I'm lucky, I finally found a doctor who knew what he was doing, and with the help of surgery and a little time, I was able to quit taking Parlodel. The man who did my surgery was Dr. George Wilson of Sanfrancisco. He is said to be the #2 Nerosurgeon in the U.S. I literally owe him my life. I would be very interested to hear anymore stories of prolactinomas. Please contact me at adk2277_AT_aol_DOT_com Amy Kernan <adk2277_AT_aol_DOT_com> Denton, TX - Friday, February 12, 1999 at 16:04:47 Very informative webpage....Thank you! Jane W. <splitreel_AT_hotmail_DOT_com> NYC, NY - Friday, February 12, 1999 at 10:33:40 Researching hyperprolactinemia. Interesting info L. Lewis <llewis_AT_nicholswolfe_DOT_com> Tulsa, OK - Wednesday, February 10, 1999 at 22:36:13 Jeri, Are you seeing a endocrinologist? I hope so..to follow your blood levels. What about MRI? Is Dostinex available in your area? JOY JOYCE - Monday, February 8, 1999 at 16:40:07 I also have a prolactinoma and was on Parlodel but discontinued due to the complications from the drug itself. My question to anyone here, is whether anyone had worse headaches while on Parlodel. I did and could not stand it.I was hoping it would help with the headaches. It did not so I discontinued it myself.I had few complications until now. I am having head- aches again and my neurologist has said that he thinks I may need to start on it again. I DON'T feel it will help with the head aches, possibly other symptoms but it's the headaches that cause my major day to day problems. Thanks for anyones comments in helping to decide whether I will accept the doctors suggestions. and do not want to start it again, if it is going to make the headaches better. My neurosurgeon has suggested the possibility of starting on it again. Jeri Elmore <jeri.elmore_AT_lh.dsc.k12.ar.us> Royal, AR - Monday, February 8, 1999 at 14:10:45 Virginia neurosurgeon: I don't know about the two you mentioned but everyone in Virginia that I hear about generally go to UVA and have Dr. Laws do the operation. He is excellent. Good luck Diane <parishrd_AT_netway_DOT_com> Boston, MA - Monday, February 8, 1999 at 06:29:51 Pituitary Neurosurgeon referral request: Hi! If any of you know of an excellent Pituitary Neurosurgeon in the Northern Virginia, Wash DC, Maryland area, could you please let me know. I live in Fairfax, VA (a Wash DC-metro town). I probably need to have transsphenoidal surgery done for my ACTH-secreting pituitary tumor. A couple of names I have come across are Dr. Donlin Long at Johns Hopkins, and Dr George Martuza at Georgetown University. Any feedback on these. Also, a referral of a good endocrinologist specializing in Cushings Disease would be very useful. My present endo, although a good physician, is not a specialist in Cushings. Finally, if one is in generally good health and taking my age into account (24yr male), how many weeks should I expect to be away from work in the (i) best case scenario and (ii) average case scenario. My work (software engineer) does not require any physical exertion etc, I can choose my own hours and I think my company would make any reasonable accommodations that I might need during the recovery period. I would just feel very down if I had to sit alone at home for several weeks or take a "short-term disability leave" If someone can spare a little time, could you explain what the recovery is like at say 1 wk after the surgery, 2 wks.... I have read in general that recovery takes 4-8wks (more in some cases) but if someone can explain in a little more detail, I would be very grateful. P.S: I am another case demonstrating how docs just don't consider pituitary abnormalities a realistic possibility when treating outer symptoms. I have had acne (alongwith the characteristic purplish skin striations) for more than a decade and visited several dermatologists over the course of that time. The acne by themselves were moderate, but in retrospect I think the skin striations were a dead giveaway. And I must have been to at least 6-7 different derms during this time. And then came the period of impaired libido and performance. Visited two urologists. Tests showed low testosterone (low 300s), which by itself would not be a cause for alarm, but the tests had also showed these low levels accompanied by low LH/FSH levels, another dead giveaway for pituitary abnormalities. Again, no action by the docs. I finally got my blood test reports from the first urologist to take to another one. The second urologist didn't help any either. However, as luck would have it, I just decided to keep a copy of the bloodwork for myself, and it took me all of 30 minutes on the web to find that I had hypogonadotrophic hypogonadism due to some reason. So I took matters in to my own hands and went to an endocrinologist. Took the endo 5 minutes to strongly speculate a diagnosis of cushings. Followed up with test that confirmed. Now the moral of the story: I recently talked about cushings with my sister (1st yr of Med School) and she enumerated the symptoms of Cushings of the top of her head. So if all docs are taught about this disorder, why can't they at least consider it a valid possibility when people present with the symptoms. Why do we always have to treat the outermost manifestation (acne for eg.) and not wish to reach the actual reason. Just a thought!! I know I digressed a lot, but was pretty dissapointed in general. Rudy Valdez <perform_AT_rocketmail_DOT_com> Fairfax, VA - Sunday, February 7, 1999 at 16:47:04 Is this site active? I do not see any messages beyond Dec. 1997. I'm seeking information about itching being a possible symptom of a pituitary macroadenoma. Jackie Palmer <jopalmer_AT_aol_DOT_com> Dayton, oh - Saturday, February 6, 1999 at 07:24:04 Found out I had tumor when I was 18. Had two surgeries and new radiation treatment to remove it. My doctor is Julius Goodman in Indianapolis. I'm 25 and my prolactin level is still a little high. Mark Long <mark_long_AT_tcon_DOT_net> Sheridan, IN - Thursday, February 4, 1999 at 13:44:19 The surgeon did not say that I definetly would lose function of the pit gland. He said that there is a 10% chance that it will resume normal function but in my case he doubts it. He will send me to an endocrinologist after surgery to deal with the hormones. He is the pituitary expert in the Seattle area. His name is Dr. Winn and he performs 30-60 of these surgeries each year at Harborview Hospital which is the trauma center. He has been a guset speaker all over the country and is listed as one of America's top 10 doctors in 2 different magazines. I feel very confident with him and sorry to have misled you. Now all I want to know is what are the days following surgery like and after I first come home. Do you have a lot of pain, discomfort, or what? Thanks Mark Mark <musch_AT_gte_DOT_net> - Tuesday, February 2, 1999 at 23:47:16 Please email me a link to your site Tania <tie_AT_looksmart_DOT_com> chicago, IL - Tuesday, February 2, 1999 at 20:41:17 I have just been diagnosed with a craniopharyngioma, I am wondering if anyone has had this. It is pressing into both the brain and the pituitary, so it is similiar to a pituitary tumor. Thank you. Tamara Otero <aro88tlo_AT_aol_DOT_com> San Diego, CA - Tuesday, February 2, 1999 at 19:33:34 Mark, I don't want to be a alarmist but I am a little unsure of your surgeons comments. You don't have to lose pituitary function after surgery. Yes, it is a risk but not a for sure thing. Some doctors put their patients on hormones directly after surgery without even seeing if this is necessary. Where are you having this surgery? How many transfenoidal surgeries has he/she done? It is a good procedure performed by a experienced surgeon. I have heard of too many people who suffer at the hands of inexperience. . - Tuesday, February 2, 1999 at 12:18:31 As I wrote before I was told I would have my whole pit gland removed and that is not true. The surgeon said that just does not happen. I am scheduled in a couple weeks to have my tumor removed which is 2cm in size and will be done by transsphenoidal approach. Actually they are going under the upper lip so as not to leave any facial scars. They tell me 3 days in the hospital after surgery. Doesn't sound to bad. At this point if it takes care of the headaches I don't care what they do. They said that the pit gland will probably not function after surgery and I will have to be on hormone therapy. Yhanks to the people out there who have answered some of my questions I am not worried about that either now. Anything else you can tell me would be greatly appreciated, such as what to expect after the surgery. (The days and first couple weeks following surgery) Thank heavens I can have my surgery done this way through the lip. I believe I would be getting 2nd opinions if it would have been any other way as I have read quite a bit and that seems to be the surgery of choice for many. Thanks for your comments. Mark <musch_AT_gte_DOT_com> - Tuesday, February 2, 1999 at 10:44:27 This is my first time writing to this guestbook. I have e-mailed several people previously through this site. I have been a endocrine patient for approximately 11 years now. Finally through switching to Dostinex I've been able to feel better and have seen results. The 8+ years of Parlodel was awful and if not for the constant influence of my family and boyfriend Rick, I probably would have given up on the Parlodel long before the Dostinex became available. Just not feeling nauseated every day is great!! I am wondering though if anyone else has experienced problems with their thyroid as a result of the pituitary problems. If not for the thyroid problem I'm now developing,the dostinex has helped enough that my Endocrine doctor would only need to see me once a year. Good luck to everyone. And thank you to who ever gave us Dostinex to replace that terrible Parlodel!! Jeanette Jeanette <jetta_AT_csi_DOT_com> Middleton, MA - Tuesday, February 2, 1999 at 09:16:16 Hello guestbook viewers!!! I wanted to add an update to my 16 year quest to deal with my own pituitary tumor ordeal. As of last Friday I had my first report after a 16 week trial period on Bromocriptine (Parlodel) (5mg a day). If you have read any of my previous entries you will remember I had been holding off on treatment with a wait and see aproach. Well when I finally had gotten to a point where I was feeling awful I went to see a doctor that someone over this website had recommened and found out my prolactin was 1300!!! I am happy to report that it is now 549. My estrogen levels are now up also so I am pleased. I am now raising my bromo up to 7.5mg a day to see if that will take it down any lower. I must admit I get very tired of all of this tumor business but I am trying to stay positive and count my many blessings. Many of which come from all of you who have taken the time to answer my many questions and give me support and encouragement. I have the greatest respect for all of you who struggle with health issues I know that your trials will make you strong and sensitive and caring for others. I wish you all success with your treatments and hope you will continue to share your stories and questions. It is wonderful to not be alone with this pituitary tumor rollercoaster! Hold on tight my friends! Jalyne In Seattle Jalyne <jfidler_AT_slc.shorelin.wednet.edu> seattle, - Monday, February 1, 1999 at 22:22:03 My grandmother just had surgery on a tumor the size of an egg on her pituitary gland. It was pressing on her optic nerve and causing her vision problems. She is 85 years old. She had the surgery and was recovering very well. She had surgery on Sunday night, stayed in ICU for a couple of days, moved to a room on Tuesday night, and by that Sunday, she was feeding herself, walking (shuffling, acutally), and she recognized everyone who came into the room to see her. My grandfather comes every day and on of the daughters or granddaughters spends every night with her. Our biggest problem stems from the fact that after her surgery, after she was getting better, she suffered from a sodium deficiency. This happened after they took her IV out that Sunday. Each day she got progressively worse. By that Thursday, they had to insert a feeding tube because she couldn't even be roused. She looked like she was in a coma. The doctors finally figured out what was wrong and started raising her sodium slowly (she's diabetic) and by the following Monday her sodium was back to normal. But her mental state has not returned. Before the sodium problem, after her surgery, she was fine. Now she is making crazy statements, isn't fully aware of what exactly is going on, she thinks we've put her in a nursing home. She is in the hospital long term rehab center. I am wondering if anyone knows if a sodium deficiency would have anything to do with her mental state or is it something else? Any comments, please e-mail me at deeurso_AT_aol_DOT_com Thanks very much!! Dee Urso <deeurso_AT_aol_DOT_com> Dallas, TX - Sunday, January 31, 1999 at 23:49:07 Hi Thanks for the help. I have discovered that I have a macroadenoma on the back of my pituitary. They plan on doing a transsphenoidal surgery. I will find out on Tuesday when my surgery will be scheduled. My tumor is app. 2cm large. I am wondering if anyone out there has had a tumor this large removed this way. I noticed that some have had theirs removed via the side of their forehead. Is there a danger in piecing a tumor out? My doctor did mention this. Thank you. Tamara Otero <aro88tlo_AT_aol_DOT_com> San Diego, CA - Sunday, January 31, 1999 at 22:30:20 I am scheduled to begin a Growth Hormone trial at MGH in February. I was wondering if there is anyone else who may also be participating in the studies who may like to keep in touch. I have heard from two others who are also waiting to begin. Just e-mail me -- it will be nice to have some people to compare notes with!! Susan A. <Sja4home_AT_aol_DOT_com> Lincoln, RI - Sunday, January 31, 1999 at 19:03:46 I have been a pituitary patient since my surgery in 1978 ! My prolactin level was over 1000 and pituitary tumor was invasive, that is, it had grown into the cavernous, sphenoid sinuses, carotid, and right optic nerve. Even with surgery, my doctor was unable to get all of the tumor cells. I have been on 10 mgs. of Parlodel since. My prolacitn level has been in the range of 7 to 85 since surgery, with 0 to 30 as a normal range. The headaches I suffered with prior to surgery have disappeard. Yes, I did have some adjusting to do with Parlodel, but I never felt like "giving up on it". Anyone having difficulty taking parlodel, may want to try taking it just after eating... never take it on an empty stomach. Also, don't get me wrong, I am pleased I had the surgery. But don't fool yourself into the belief that just because you have the surgery and everything "SEEMS" normal, it is not. Once and endocrine patient, always an endocrine patient. Since surgery in 1978, I have had a mounting medical list of endocrine-related illnesses and issues with which I have had to face. The endocrine system, I am coming to believe, is in charge of every bodily function in a human. All I can advise, is to learn as much as you can about your body, endocrinology and the diseases associated with it, and keep your doctors informed of any feelings that are not "normal". Some of you may be wondering about the medical issues I have had to face, well the following is a listing of endocrine-related medical topics in my life. * Stasis Dermatitis, a reddish/browning of the lower legs, that becomes somewhat like sunburn and scales at times. * Fibromyalgia, taking over every joint in your body. Pain and stiffness that, in some cases may not be lessened by medications. Swimming is about the only exercise that is tolerable and is an excellent outlet. * Artial Fibrillation... mostly associated with thyroid malfunctions, but endocrine-related nonetheless. The heartbeat become irregular, but can be controlled with medication, and at times, timed injections of Heperin. * In my case, my mother, father and I are in a special study at the National Institute of Health, undergoing special blood testing to check our F-men 1 / Men -1 association. To date, our medical history demonstrates a definite genetic link. I have had my pituitary tumor, dad has a parathyroid malfunction and my mother has had what the doctors now consider Endocrine-related Cancer. * Visual problems. I was diagnosed with a 5% shift in my optic nerve about ten (10) years ago. It is uncertain if the shift is hereditary or was a result from the surgery. My sight became so poor, that I could not judge distances and I was not seeing certain shapes. I urge anyone with an endocrine -related medical history to seek medical testing with a genetic specialist if you are considering having children. I decided many years ago, not to consider children in my life, based on the many medical issues I was dealing with. I am relieved that I took that course, based on the way my body feels and my lack of energy and stamina. Hope this historical account of an endocrine patient helps in some way. Blessings and take care Carla <kencarla_AT_erols_DOT_com> VA - Sunday, January 31, 1999 at 04:23:44 Pituitary Patients, let's support Endocrinology. Learn as much as you can as a patient, involve your family and friends. Surf the web for information updates, keep informed and communicate with each other. Build a solid, strong bridge of support. Take care. Carla Carla D. <kencarla_AT_erols_DOT_com> VA - Sunday, January 31, 1999 at 03:46:15 I am currently 9 weeks pregnant with my first child. Before getting pregnant I was taking the drug cv205-502 (Norprolac) to control symptoms of a pituitary adenoma that was diagnosed in 1993. Once I got pregnant I went off the medication. Since then, which is four weeks ago, my prolactin has climbed from about 9 to 236. My endochrinologist says he'll be worried if it goes above 300. Does anyone out there have experience in this area? What could happen if it does go above 300? I am also getting terrible headaches like never before and there's nothing I can do about them. Please help me by answering any of my questions. Thanks! Brooke <kauth.wings_AT_sympatico.ca> Hamilton, ON - Saturday, January 30, 1999 at 15:38:52 I have just found out that I have a pituitary tumor or cyst. I know nothing and am facing surgery in a week and a half. Any info would be helpful. Tamara Otero <aro88tlo_AT_aol_DOT_com> San Diego, ca - Saturday, January 30, 1999 at 12:04:29 Hello. I was just diagnoses with a pituatary tumor of about 3mm in size. I am scheduled for surgery Feb. 12. I have much to learn about what to expect down the road, and don't even know for sure what questions to ask. I am told this tumor is non-secreting. Main symptoms are headaches and general fatigue. Dr. tells me that the pituatary will not be functioning at all after surgery. In addition, tumor is too large to "go through nasal area", so surgeon will go through the left skull area. Would appreciate as much info. as you are willing to share as to what I may experience....and words of wisdom and hope! thanks. Cindy in West Virginia. Cindy Johnson <Gitaway_AT_aol_DOT_com> - Saturday, January 30, 1999 at 00:08:41 Hello! I am 29 years old & was diagnosed with a pituitary tumor 8 years ago. I have been told that if I want to have kids I will need to have surgery to remove the tumor. My tumor has been proven to grow with estrogen & so would likely grow rapidly when pregnant. I would like any info.from anyone who has undergone surgery and/or anyone who has been pregnant while having a tumor. I had been taking Parlodel until the past month - I am know taking Dostinex. My tumor is currently 9mm. (in the last year it went from 5mm to 9mm). I would appreciate any info. Thank you. Jen <j-dprox_AT_erols_DOT_com> Baltimore, MD - Friday, January 29, 1999 at 22:33:55 My girlfriend in Alaska says she is to go in for an MRI because she has an accessive prolactin problem and they suspect something is wrong with her pituatary gland (anterior lobe). She has had trouble with her periods for a year and a pre-menapausal problem was ruled out. What are the symptoms of a pituatary tumor? Dana kunz <kunzd_AT_mailhost.cyberhighway_DOT_net> Letha, Or - Friday, January 29, 1999 at 19:29:00 Just looking for information, I have been taking parlodel for over 16 years for a prolactinoma and every once in a while I try to lose weight again, not that I have been successful. But I want to make sure that there is no new information out before I start. Looks like there is nothing new about how to lose weight when you have no energy, and are sick to your stomach all the time. mary jane scouten <mtscouten.buffnet_DOT_com> west valley, ny - Friday, January 29, 1999 at 19:24:18 Hi everyone! I fell pregnant whilst taking parlodel. It took a while but it happened! I have a healthy three year old boy. When I stopped breastfeeding last year I began taking Dostinex, which didn't agree with me (headaches etc.)I tried it for several months and then decided to give it the flick. I have been using a natural progesterone cream called Biogest with good results (improved libido, skin not so dry, more regular menstruation). It might work for other women out there with high prolactin and low eostrogen problems. (The natural progesterone actually stimulates your body to make it's own eostrogen- much better than H.R.T)I don't know if it would be as effective if combined with parlodel- the cream didn't seem to have much effect whilst I was taking dostinex. Regarding DOSTINEX, I have an amount that I could certainly send to someone, but I'm unsure of the legality of sending it overseas(I'm in AUS.) I Don't have an e-mail address at the moment, so if anyone's interested pop onto this guest book and I' ll make a couple of checks in the next month or so. Best of luck, Jenna. Jenna Austin Johnson Launceston, Tasmania - Thursday, January 28, 1999 at 20:56:05 GLIOMA BRAIN TUMOR/ ON THE OPTIC NERVE SCOTT BUCKNER <SCOTTBUCKNER_AT_YAHOO_DOT_com> DALLAS, GA - Wednesday, January 27, 1999 at 22:30:00 I had a 7mm pituitary prolactinoma removed in 1995 - but my prolcatin level is now back up to 51 and I guess it's come back. I would like to have a second surgery but my endocronologist advises against it. I hate taking parlodel - very depressing. Has anyone had a similar case of recurrent prolactinoma and treating it. Any information appreciated - thanks - Mary Mary C. <mcollins_AT_ctv.ca> Toronto, - Wednesday, January 27, 1999 at 21:41:40 I had a 7mm pituitary prolactinoma removed in 1995 - but my prolcatin level is now back up to 51 and I guess it's come back. I would like to have a second surgery but my endocronologist advises against it. I hate taking parlodel - very depressing. Has anyone had a similar case of recurrent prolactinoma and treating it. Any information appreciated - thanks - Mary Mary C. <mcollins_AT_ctv.ca> Toronto, - Wednesday, January 27, 1999 at 21:41:39 I am interested in responses from pituitary patients who have had their surgery in late 1970's early 1980's.. Reason: wonder how many of US are experiencing the same endocrine-related medical issues long after our initial Pituitary Tumor Diagnosis. Since surgery in 1978, I have had the following major medical surprises develop, all of which are endo related: (1) Statis Dermatitis, discoloration and irritation of both lower legs. (2) Fibromyalgia - all of the following areas are involved: Neck, shoulders, elbows, wrists/hands, hips, knees and ankles (3) Atrial Fibrillation, more common with Thyroid Problems rather than Pituitary, but still endocrine assiciated. I have concluded, that your endo problems do not end with surgery. Just become aware of "Other" medical issues that will possibly surface in years to come. Best of luck you all of you. Carla D Alexandria, VA - Wednesday, January 27, 1999 at 06:59:38 I had transphenoidal surgery almost 3 years ago to remove a prolactinoma, following which I lost all pituitary function. I now take synthroid, prednisone 7.5 mg daily, DDAVP and Rx Zantac twice a day. About a month ago I started getting daily headaches again, sometimes escalating to a migraine, and I have nausea daily, sometimes quite severe. My doctor does not have any answers as yet as to why the nausea and nothing seems to help. I take Zantac to protect my stomach as much as possible, having had an ulcer some time ago, and having a lot of trouble with upper gastric pain and digestive distress if I don't take it. But the nausea is new, seemingly in a lower part of my stomach or perhaps the bowel, can't really tell, and it is generally making me very tired and feeling pretty rotten, combined with the headaches. I am trying to lose weight, have joined Weight Watchers, and over the past year have lost about 30 lbs. Has anyone panhypopit. out there had similar problems, have any thoughts or suggestions or ideas as to why the nausea. Your feedback is much appreciated. M.J. M.J. <mjbiker_AT_stn_DOT_net> Toronto, On - Tuesday, January 26, 1999 at 20:52:39 Just wondering if anyone out there had their whole pituitary gland removed and if so what was the recovery time like. Also what about hormone therapy/ I guess this question should be for a man since the therapy would be different for the different sexes. Thanks concerned wife Mark <musch_AT_gte_DOT_net> Everett, WA - Monday, January 25, 1999 at 20:25:54 Hi, I have not written on this sight in so long, I promised myself that if I ever got better I would continue to write because I know I searched high and low for someone who had a pit tumor and a positive story. My name is Shirley, I was diagnosed in Aug. 1996 with a 3mm microadenoma. I was 23 when diagnosed. I found excellent Drs. in Toronto and had just finished univerysity so decided to go where the Drs. were. From Aug. 1996 until June 1997 I followed my conidition with bood work of my prolactin (which was around 36-60) and tried to decide if I wanted the meds (Parlodel/Bromocriptine) or the surgery. I hadn't lost my period completely but it was slowly diminishing. I had a second MRI in July 1997 and the tumor had grown to 5.7mm. The tumor was showing weird shading and lighting so my Drs. thought it might be a RAthke's Cleft Cyst. I got 2 neurosurgeon opinions and 3 endo. opinions. All are excellent Drs. The Drs. did a Triple Bolus Test (Blood test that takes 1/2 a day were they inject you with diferent hormones and test how you react)and my prolactin was coming out at a little over 100 prl. I must tell you that the whole time that I had the tumor I never felt ill, never had any headaches, never was extra moody. I never felt sick. I did begin to retain water and I think I looked a little chubbier but there was no significant weight difference. I decided in Aug. 1997 to have the transphenoidal surgery. The surgery was a pirece of cake! I trusted and really liked my neurosurgeon Dr. Harley Smyth and there was no pain in the surgery. I was in on a Thursday and out on Sunday. I was walikng around (with help) 8 hours after the surgery and by the next day was eating solid foods. I took 3 weeks off from work and recooped. I havefelt great since, still have my period and get my PRL level checked every 6 months (unless my period starts to go for or if I get the breast milk again.) I know that my chances of the tumor coming back are there, but I live one day at a time and am greatful for every healthy day I have. If you like to email me and ask any questions feel free and hope you all get as lucky as I did. I must say I can only email on weekends so there may be a delay in my response but I will respond. All my wished for heath and happiness! Shirley Brockhill <shirley.brockhill_AT_unilever_DOT_com> Toronto, ON - Sunday, January 24, 1999 at 22:43:24 Links to additional information and resources can be found on my webpage. If you have any great resources to share, please email me so that I can add them. I hope this finds everyone well...I have been out of touch for a while, but plan on getting involved with writing a lot of you again in the near future. Contact with fellow "pit pats" has been great medicine for me, for sure! Take Care, Lori : ) http://members.aol_DOT_com/tomajestic Lori <ToMajestic_AT_aol_DOT_com> - Sunday, January 24, 1999 at 12:23:44 I was diagnosed with a large (nearly 3cm) pituitary adenoma during July, 1997. My prolactin level was over 3000! Also, my testosterone level was very low. Since that time I have been treated with Dostinex to reduce prolactin levels and reduce the size of the tumor. I had testosterone injections every three weeks until December, 1998 when I began wearing a daily testosterone patch. I also have taken synthoid until yesterday when my endocrinoloist found that my thyroid levels were extremely high. I am 53 years old and apparently have had this tumor for many years. I had many symptoms but was hard-headed and did not seek help nearly soon enough. It has been a difficult experience but, all things considered, I feel fortunate that my vision has not been damaged and surgery is not a current option. The tumor is shrinking and my hormone levels, with much tinkering, are near normal. I would like to share experiences with persons having similar problems. It helps to talk about it! Gary Frazier <gfrazier_AT_eastky_DOT_net> Prestonsburg, KY - Saturday, January 23, 1999 at 16:35:13 I was diagnosed with a large (nearly 3cm) pituitary adenoma during July, 1997. My prolactin level was over 3000! Also, my testosterone level was very low. Since that time I have been treated with Dostinex to reduce prolactin levels and reduce the size of the tumor. I had testosterone injections every three weeks until December, 1998 when I began wearing a daily testosterone patch. I also have taken synthoid until yesterday when my endocrinoloist found that my thyroid levels were extremely high. I am 53 years old and apparently have had this tumor for many years. I had many symptoms but was hard-headed and did not seek help nearly soon enough. It has been a difficult experience but, all things considered, I feel fortunate that my vision has been damaged and surgery is not a current option. The tumor is shrinking and my hormone levels, with much tinkering, are near normal. I would like to share experiences with persons having similar problems. It helps to talk about it! Gary Frazier <gfrazier_AT_eastky_DOT_net> Prestonsburg, KY - Saturday, January 23, 1999 at 16:33:30 |
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