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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 2000
Hi,everyone on December
8th 2000. I was diagonosed with microadenoma. I'm recently
married and desiring to get pregnant. My doctor has prescribed
bromocriptine. I still need to make an appointment with a
specialist to discuss the size and condition of the tumor.
Is surgery the way. It has only been a few days and I just
don't know what to think. I know it was by the Grace of God
that I found this web site. I'm a born again Christian and
I just believe God can and will heal me. On Friday I thought
I was the only one. LOOKING FOR ANSWERS RHONDA LEA - Saturday, December 9, 2000 at 12:39:29 Just looking for possibilities for a friend Jenn Puhl <Kitten9181_AT_aol_DOT_.com> Trevose, PA - Friday, December 8, 2000 at 19:17:43 Hi, I 'm a MGH employee,I did MRI in MGH which showed that I have a D:8mm pituitary adenoma. I have hyperprolactin which have been detected 3 times, I am female,29 years old, I want to have a baby soon.If you have any intesting seminar about this disease .please let me know. le zhang <zhang_le_AT_hotmail_DOT_.com> charlstown, ma - Friday, December 8, 2000 at 10:54:02 40 Year old diagnosed with Cushings...looking for info... Molly <mholl_AT_sctcorp_DOT_.com> Maple Glen, PA - Thursday, December 7, 2000 at 21:13:22 Hi I'm Nisa, I live in Yuma,Az. Are there others with brain tumors in my town? Nisa Bottone <nisabottone_AT_hotmail_DOT_.com> Yuma, Az - Thursday, December 7, 2000 at 13:55:26 I have a friend that under went hormone therapy because she was having trouble getting pregnant. Now 8yrs later she has suffered from a nervous breakdown and is very depressed. Can anyone help??? desiree <ddrocco_AT_yahoo_DOT_.com> san antonio, tx - Thursday, December 7, 2000 at 12:47:29 Hello to all again. I'm a 26 y/o male, and have finally had this thing removed. Since my last entry, Oct 21, I have had the transphenoidal surgery to have my prolactinoma removed. I have no regrets. I was very uncomfortable for a couple of days, but now feel much better. Feel free to e-mail if you want to chat about symptomology or post-op symptoms, I would like to hear from each of you. Don't give up.....keep the faith.....Justin Peugh, RN Justin Peugh <n2labs_AT_hotmail_DOT_.com> McKinney, TX - Wednesday, December 6, 2000 at 15:35:52 I have seen 3 doctors about different symptoms I had been experiencing. Each time a series of tests were run and each time I was not given an explanation for my symptoms. I had one doctor say, well somethings not right. I have a 7 month old baby and never breastfed. My milk came in anyway and to this day I am still lactating. In every test my prolacatin level is high, thyroid is normal and all other levels appear normal. The doctor suggested an MRI because they thought it could be a tumor on the pit. gland. The MRI was normal. That doctor decided not to research my problem further since the MRI was normal. The problem of the lactation was still present. I assumed that a doctor knowing that something was not right with a patient would start to look in other areas instead of saying to wait 2 months and we'll check your levels again. By this point I was pretty frustrated with the Medical Society. I am still having frequent headaches, mood swing, weight gain and lactation. To dare I have now been to 4 different doctors. The most recent has started me on 2.5 mg of bromocriptin in hopes to dry me up. Has anyone ever heard of or experienced any of my ailments? It just seems so odd to me. Should I have the doctors look elsewhere and if so where? Comments welcome!!! Jennifer <jennifer.smith_AT_fhlb_DOT_.com> Ft. Worth, tx - Wednesday, December 6, 2000 at 10:19:59 I'm a male of 29. I've been told in july 00' I have a 5mm Pituitary Tumor w/ Prolactin level of 108. I was put on 2.5mg of Bromocriptine. After a month rechecked Level was 45. My doctor rasied Bromo to 3.75mg then rechecked again . My prolactin level was 34. Once again, I was increased to 5mg and Just rechecked with a level of 40? It went up 6 points. My doc doubled Bromo to 10mgs.. Is anyone on this high of a dose?? Anyone experience this type of level change?? If you had a 5mm tumor what did you decide to do? I'm of cousre getting differnet advice. Endo doctor says stay on meds and continue to check levels and nerosurgeons say to remove it.. Any experiences help would be very helpful. Finally, I really was releived when I came across this message board. Like everyone else I tought I was the only person (Male) with this problem.. Well thanks for all your comments. Dave dart234_AT_aol_DOT_.com Dave <dart234_AT_aol_DOT_.com> FL, Fl - Tuesday, December 5, 2000 at 22:11:43 As a Pituatory tumor Microadenoma I was wondering if any of the Massachusetts Institutions are involved in research, etc. of the "Gamma Knife" procedure. Roger Bambenek <rlbambenek_AT_hotmail_DOT_.com> Winchester, MA - Tuesday, December 5, 2000 at 16:23:30 Recently diagnosed with pituitary tumor awaiting treatment good to know I' not alone....keep the faith carol <kclloyd_1999_AT_yahoo_DOT_.com> ut - Tuesday, December 5, 2000 at 15:50:26 To add to my other entry, here is a web page I have. http://sherryspencebrownell.homestead_DOT_.com/mywebpage.html Sherrry Spence-Brownell <brownell_AT_baysat_DOT_.net> Ramsay, MI - Sunday, December 3, 2000 at 23:13:37 I have had two pituitary tumors removed. One in 1992 and then other in 1998 (Both due to Cushing's Disease). I have written a book about the first experience I had because of a doctor who refused to believe me and then refused to help me. If anyone is interested in writing to me, I welcome any e-mails and would appreciate if you would sign my guest book as well! Even after everything I have been through, I still thank God I'm alive and I have made a personal promise to myself to help anyone I can. I will answer any and all e-mails I receive! No one should ever have to go through what I did! Thank God for the internet as now we are not alone! God Bless you all! Sherrry Spence-Brownell <brownell_AT_baysat_DOT_.net> Ramsay, MI - Sunday, December 3, 2000 at 23:10:40 Hi, I have a prolactinoma, have chosen to have surgery after 1st of the year. They are still testing other hormones. I find that I am shaky all the time, like tremors, evenly all over, doesn't seem to fit with any eating patterns or anything. It does make my muscles feel weak though. Anyone have something similar? The doctors don't seem to think it is realted to a pit tumor. I'm hoping it is so I can get something done about it. Thanks, Mary Mary <info_AT_acornlandscapes_DOT_.com> St. Louis, MO - Sunday, December 3, 2000 at 15:34:58 I am glad to finally find a site where I can read about others going through the same thing I am. I was diagnosed with a hyperprolatin macroadnoma in August of this year. My level was at 58.2 which isn't all that bad from what I've read here and is now down to normal levels. I am on Dostinex. I am trying to get pregnant and am not having any luck yet. If anyone has been through this I would love to hear any advice you might have. Shawna <seaniexxx_AT_yahoo_DOT_.com> Independence, MO - Sunday, December 3, 2000 at 00:49:40 This is a general answer to the last few folks who are just getting into the pituitary tumor field. First, stop worrying! I has a Prolactoma several years ago and the symptoms had Doctors stumped for a while until I starting having vision problems and a CAT scan reveiled the problem. Yes, at first, it scared the heck out of me but, looking back, I have had more problems with a trip to the dentist than that. The surgery was through a small hole over the front teeth and through the sinus cavity that lies above the roof of my mouth. Just before it, they began to correct the problems caused by harmon and body chemistry levels being way off. The steriods made me wake from it very fast and feeling fine. I didn't need any pain meds and went home the next day. The after-effects were much like starting life over at about 18 years old although I was 45 at the time. I have been unusually "fit" sense and now at 63 am about the physical shape of a 35 year old. I don't know what caused this but, it seems to have cut many years off of my age and I feel great! The point is, look forward to the "fix" ... don't be afraid of it... Tom <cctom_AT_wt_DOT_.net> Houston, Tx - Friday, December 1, 2000 at 23:25:51 I have just been diagnosed with and 8mm cyst on my pituitary gland. I cannot get into a doctor for 3 weeks. So needless to say these 3 weeks are going to be very long. I was wondering if there was someone who could give me some clue as to what lies ahead for me. Please help. Debbie Watterson <cdwattersoon_AT_qwest_DOT_.net> Erda, Utah - Friday, December 1, 2000 at 19:40:02 need infor on tumor homer Sales - Thursday, November 30, 2000 at 20:12:14 I would just like to read about my condition Lvicari <Saph57_AT_aol_DOT_.com> San Jose, CA - Wednesday, November 29, 2000 at 23:21:04 Hi, My daughter is 13 years old and has been having severe headaches since Febuary of last year. She has been hospitalized and MRI, EEG's and tons of other tests. The doctors thought it might be pressure on the brain and now found it is not that. Now they are thinking she may have a pituitary tumor and I was wondering if I could get some info on them from some younger people that have had them. She has also had loss of periods. She will be having an special MRI that can detect these types of tumors in a few weeks.... Thank you! Patsy Spray <princess_1361_AT_excite_DOT_.com> Enid, OK - Tuesday, November 28, 2000 at 17:48:32 i was recently diagnosed with a 1.1 cm macroandenoma; my prolactin level is 136. i am trying to determine which route to go medication-(how long) and/or surgery. i am currently on Dostinex. Please send any info my way on this. thanks. elizabeth w. <cjdrh_AT_allstate_DOT_.com> raleigh, nc - Tuesday, November 28, 2000 at 15:04:11 I had undergone transnasal surgery for pituitary macro adenoma followed by stereotactic radiation 3 years ago. I am 30 years old having no children. I have Growth Hormone levels of 22ng/nl(fasting) and have not been getting periods without medication. Any information on anyone having successfully undergone fertility treatment and given birth to a healthy child, will be of great help. Ms.Vilasini Karthik <vilskart_AT_emirates_DOT_.net.ae> Dubai, - Tuesday, November 28, 2000 at 05:48:43 I was operated for Pituitary Macro Adenoma 3 years ago (transnasal) and given stereo tactic radiation treatment. My Growth Hormone Level has come down to 22ng/ml(fasting). I am 30 years old and have no children. I don't get my monthly periods unless I take medicines. I would like know if there is anyone who has successfully undergone treatment for infertility and given birth to a healthy and normal child. Ms.Vilasini Karthik <vilskart_AT_emirates_DOT_.net.ae> Dubai, - Tuesday, November 28, 2000 at 05:23:12 Since I have been taking bromocryptine for my pit. tumor I have been having sore eyes and recently Ive been noticing that I have to blink very frequently and when I try not to for even a short time my eyes feel very strained. This is not constant,thank God. But it concerns me. If anybody here has had the same problem please let me know. I'm wondering whether the medication or the tumor could be the cause.Thanks RashellePompa <believer7771_AT_aol_DOT_.com> Southaven, MS - Tuesday, November 28, 2000 at 00:12:11 Hi my name is Ann and I was diagnosed with a prolactanoma on my pituitary gland at 28 years of age, I am now 37. My initial symtoms were loss of periods, breast secretion and general tiredness. It took 10 months and several doctor visits before it was diagnosed as each doctor I saw simply put it down to "womens problems". Initially I was put on bromocrypton, but no matter what dosage I tried this tablet made me dizzy, unfocused, nauseous and unable to function. I stopped taking it. My prolactin levels were in the 2000 mark. Then I was diagnosed some two years later with type 1 diabetes which my specialist kindly informs me is a result of the tumour. I don't know if it's because I live in Australia and other medications are not available but I was offered nothing else but the bromocrypton which my body just can not tolerate. I have not had a period now for 9 years, my libido is non existent, I have mood swings and my body is acting as if it is going through menopause and I confess that I do nothing about it. I refuse to take a medication the renders me useless when apart from getting tired and the symptoms above I can function normally with out it. I have a very understanding and obviously patient husband! I searched for this information on this condition because at times you feel very alone and I wondered if there was anyone else out there! My question has been answered. Ann <greenie3_AT_zwallet_DOT_.com> Woody Point, Qld - Monday, November 27, 2000 at 20:27:00 Does anyone have any knowledge of excessive growth horomone and its effects? I have had a pituitary tumor removed 3 years ago. The levels were elevated and I lost my vision then. the tumor was begign. Gretchen Sting <gretchensting_AT_accesstoledo_DOT_.com> Swanton, Oh - Sunday, November 26, 2000 at 16:43:00 Why is the guest book only dated to 1998? Rose <roski _AT_ aol_DOT_.com> windsor, on - Friday, November 24, 2000 at 21:57:27 Glad to find another webpage for pituitary tumor information. Diagnosed with one back in 1978, have struggled with it for all these years, but lucky to ahve taken Parlodel (Bromocryptine) almost from the beginning. The tumor has shrunked to the point where it can not be detected by CAT scans or MRIs. However, the my life has been a "pit" due to the lack of knowledge and understanding about this disease in the '70s. I suffered from many symptoms (headaches, blurred vision, galactohrrea, emotional ups-and-downs) for five years before the correct diagnosis was finally made. Unfortunately, at the same time that went through the worst of my symptoms, I was also raising a girl (the only daughter I was able to conceive) and caring for my mother with Alzheimer's Disease. As an only child I had nobody to help me cope. Worst yet, my endocrinologists (two of them) never warned me that reduction of libido was also to be expected. My husband asked for a divorce after 29 years of marriage. He thought I ahd rejected because of my lack of response and strong emotional reactions. Please keep the research going and your patients informed of all the implications. Medical treatment is crucial, but emotional support is no less vital. I am seriously thinking about writing a book about my experience. I would welcome any input from other patients who wants to communicate with me and share experiences. Maria Isabel Bellavance <maria_b_75080_AT_yahoo_DOT_.com> Richardson, TX - Friday, November 24, 2000 at 12:40:00 Hello, my name is Tom O'Neal and I was diagnosed with acromegaly in 1991. I got real lucky, found the right doctors and had the tumor removed within a month of diagnosis. It paid off. Today, I am not on drugs (never have been) and have required no radiation. All my blood work has been perfect. I posted the following story on the Pituitary Tumor Network several years ago and get a lot of responses from it and I still correspond with many patients who are trying to find answers. I have posted it here also, but it is so far down on the posts I fear that many may miss it. I'm posting it again in the hopes it may help another person with a pituitary tumor. I don't give any medical advice but might be able to head you in the right direction. Good luck, Tom ``And now for some good news and a few tips from a "cured" acromegalic. I'm new to PTNA but I thought I would share my story with you in the hope that it may offer some encouragement to those of you who may be very concerned, very frightened and very frustrated. My acromegaly tumor (3 cm) was discovered in 1991 by a GP who just happened to be a very close friend. He broke the news gently and told me, the best he could, what the problem was and what my options were. He had done a lot of reading before talking to me and explained that the only way to completely remove a pituitary tumor was to remove it surgically. He stressed that he, and most of the medical profession, was very ignorant about pituitary tumors. He explained the procedure for removing one was very delicate and required a skilled surgeon working with a team that included a top notch endocrinologist. He was honest and acknowledged that he had no idea where to send me. He did warn me that I should not let anyone use me as a guinea pig. I thank him to this day for that advice. He then suggested that we begin a search by calling all friends, family and associates, explaining the problem and have them check their areas for surgeons and endos who were familiar with pituitary disorders. Perhaps, he said, we would get a couple of names that came back from a lot of the contacts. I personally made calls to Washington, DC, Los Angeles, Houston, Atlanta, Michigan, and Minnesota, Canada and other places. All of my friends in those areas made inquiries. Within a week I had many lists of names. So did my GP. Only two names were on all the lists - Dr. George Tindall at Emory University Hospital in Atlanta and Dr. Edward Laws, now at the University of Virginia. More checking showed that both Tindall and Laws were neurosurgeons who had a team of doctors who specialized in pituitary tumors. Both also worked with a very good endocrinologist. Both had performed more than 1,000 transsphenoidal surgeries and both had excellent track records. We were on our way. Since my parents live in Atlanta, I chose Tindall. My GP made the appointment. Despite being told by many of the doctors I had contacted and who had seen my MRI that a 3 cm tumor would cause major problems, especially considering the awkward position it was in, I was put at ease quickly in Atlanta. Dr. Tindall checked my MRI, confirmed what I already knew and said: "I think we can handle this. How about next Monday." He and all his team treated me with great respect. I was introduced to all those who would be involved, including the endocrinologist, Dr. Richard V. Clark, a really great guy. I was introduced to David Adams, one of Dr. Tindall's many assistants and the man who specialized in removing a tiny piece of adipose (fatty) tissue from the abdomen to pack the sella after the tumor had been removed. Before I left, Dr. Tindall took me to meet a woman who had undergone transsphenoidal surgery (Cushings) the day before. It was very reassuring. My tumor was removed on July 9, 1991 beginning at 7 a.m. When I awoke at 4 p.m. Dr. Tindall was in my room and whispered gently, "I believe we got it all." Today, almost eight and a half years later, all blood tests have been perfect. I received my most recent test results today (October 26, 1999). I have required no medications and no radiation treatments since surgery. I feel and look great and I am keeping my fingers crossed that my tests will remain perfect until I hit my 10-year period, which is both Tindall's and Law's time frame for a complete cure. That's only a little more than a year and a half from now. I consider myself very lucky and blessed. Here is what I learned. I hope it will help you. Remember, most endos and neuros, even the good ones, know practically nothing about pituitary tumors. Search for the right one until you are exhausted. If you get the right team, you'll know. They will treat you with respect and you'll get no conflicting information. They know what you are going through; they deal with this everyday - just like you. Do not let ANYONE tell you what you must do (radiation, medication, etc.) until you are convinced they know what they are talking about. Remember my GP's warning: Most know little about pit tumors; don't be anyone's guinea pig. Get the right team.'' Good luck, Tom O'Neal Tom O'Neal <oneal_AT_ec.rr_DOT_.com> Morehead City, NC - Wednesday, November 22, 2000 at 19:59:42 I have a bleeding pituitary tumor and I am pregnate. I just want to know there are others out there with me in the same boat. I guess if there are others out there I know I will be ok. Thanks Tricia <sarabia_p_AT_yahoo_DOT_.com> - Tuesday, November 21, 2000 at 16:33:40 Just to remind you gerls tha had any luck with pregnancy while on parlodel to write to me pleasE!!!!ok???thanks jesse ricoman_AT_myhome_DOT_.net jesse <ricoman_AT_myhome_DOT_.net> mossyrrock, wa - Tuesday, November 21, 2000 at 01:49:06 Hie Everybody! I was diagnosed with a Pituitary macroadenoma on dec/20/99.I started getting simptoms around may/98.I saw many different specialists and nombody was able to tell me what was wrong wiht me until dec/99.I had surgery on march/24/00.Everything was ok until june /oo.The tumor is growing back again. Carlos <CarlosCorrales_AT_email.msn_DOT_.com> Pasadena, Ca - Monday, November 20, 2000 at 14:51:44 Hey, does anyone know what happened to the Pituitary Tumor Network Association website? It appears to be down. Thanks! Barbara <scorp200_AT_aol_DOT_.com> - Monday, November 20, 2000 at 14:06:23 Hi , I was told on thursday that I have a large Pituitary Adenoma. I have not been to see the Neurosurgon yet. That will be on Wed of this week. Can anyone tell me what to expect and is ther anything I can do to prepare for the upcoming surgery? I only have slight headaches,and my vison is good. The only problem I even noticed was that my left breast was getting larger than my right and it hurts if I lean on it. I am a heavy equipment mechanic and I noticed that when I am in an upsidedown position I feel pressure on my head. I am new to this list and hope i am doing it alright. I would love to get e-mail from anyone that would like to talk to me on this subject. Thank you Dale Dale F Andrews <andrews_AT_northcoast_DOT_.com> McKinleyville, CA - Monday, November 20, 2000 at 09:14:53 Hi , I was told on thursday that I have a large Pituitary Adenoma. I have not been to see the Neurosurgon yet. That will be on Wed of this week. Can anyone tell me what to expect and is ther anything I can do to prepare for the upcoming surgery? I only have slight headaches,and my vison is good. The only problem I even noticed was that my left breast was getting larger than my right and it hurts if I lean on it. I am a heavy equipment mechanic and I noticed that when I am in an upsidedown position I feel pressure on my head. I am new to this list and hope i am doing it alright. I would love to get e-mail from anyone that would like to talk to me on this subject. Thank you Dale Dale F Andrews <andrews_AT_northcoast_DOT_.com> McKinleyville, CA - Monday, November 20, 2000 at 09:14:46 On 7/27/00 I had a Transphenoidal removal of a Clinically Nonfunctioning Pituitary Macroadenoma with suprasellar extension and visual loss. It all happend so fast that I have not been able to get pass the "what could have happened" or the trauma of having this medical issue. I am looking for a local support group or chat room, as I need to discuss this with others who have had the same experience. Can you provide me with this information or direct me. I have inquired locally, but no luck. Thank you for any information you can provide. Mandy Freeman <Mandy 02 Freeman_AT_compuserve> Virginia Beach, VA - Monday, November 20, 2000 at 01:23:07 I was diagnosed with a microprolactinoma when I was six months post-partum and 32 yrs old....I had a prolactin level of over 100 and an estrogen level of absolutely zero. Now, three years later, my prolactin levels have dropped to almost normal levels, but my estrogen levels, despite heavy-duty hormone replacement, are still low. I've also got a multinodular thyroid growth. But now that my breasts have finally stopped running like faucets, my doctors seem to have washed their hands of me - one said, "You've got a diagnosis, I don't know what more you want." But I'm still suffering from insomnia, hot flashes, short-term memory loss, chronic recurring aphasia, and a severely reduced libido. Is this as good as it's going to get? How do you cope with all these stupid symptoms when the doctors say you're as cured as you're going to get? Paula Simons <plsimons_AT_telusplanet_DOT_.net> Edmonton, AB - Monday, November 20, 2000 at 00:56:54 I have a question about infertility. I have been on Dostinex for six months. I just found out my prolactin levels are in the normal range. My endocrinologist is sending me to an infertility specialist before I even try to get pregnant. I would like to know what to expect. What will I have do to get pregnant? I have been told that I will be at a high risk for miscarriages. Has anyone been through this or have information on it? It would be of great help. tania <jricken_AT_peoplepc_DOT_.com> Oswego, IL - Saturday, November 18, 2000 at 18:21:48 Thank god for this site... recently I have been diagnosed with a 5 mm. pit. adenoma. And I'm currently being treated for hypothyroidism. My Doc wants to start me on bromocriptamine or paradol-sp. I haven't started it yet an was wondering if there are any side effects. Any comments or suggestions are always welcome....Please help Kim <gilaa_AT_aol_DOT_.com> ny - Saturday, November 18, 2000 at 16:33:02 Hi, I had been told that I possibly had a pituitary macroadenoma and now have actually been diagnosed with a pars intermedia cyst. I won't require surgery nor medication. However, I continue to have amenorrhea and some breast leakage and was instructed to commence my second month of Dostinex at the same low dosage. Anybody experience this type of situation? Please feel free to email me. Thanks! LBG <sweetmamita_AT_yahoo_DOT_.com> NY - Saturday, November 18, 2000 at 06:38:52 36 with secreating tumor.surgery or not mitch <mitch_AT_joehale_DOT_.com> houston, tx - Saturday, November 18, 2000 at 03:25:12 I found this website very informative. I have a prolactin causing pituitary tumor and I am trying to do research on it. Thanks for the great site. Desiree Farside <elleallure_AT_aol_DOT_.com> Vineland, NJ - Friday, November 17, 2000 at 23:48:56 I was just diagnosed with hyperprolactinemic for which I was prescribed Dostinex. I have been reading the guestbook and found some very interesting information. I still would like to know if anyone could help me out with a few things. Right now my TSH is at 34 ( which does not seem to be high looking at others levels). I would like to know what the probability of pregnancy is after using Dostinex and how soon after taking it has anyone seen results. Also is this a drug that I will have to take for the rest of my life? Is surgical removal the only other alternative? Towanda Taylor <towandat_AT_primeretail_DOT_.com> Baltimore, MD - Thursday, November 16, 2000 at 16:56:59 Just to let everyone know tha I had the blood tes and the results last month prolactin level was 31.9,this month november 2000 it is 24.9 taking 5 mg parlodel a day...write to me if you have any comments ricoman_AT_myhome_DOT_.net Jesse Allaria <ricoman_AT_myhome_DOT_.net> Mossyrrock, wa - Thursday, November 16, 2000 at 13:23:31 Hello. Almost 14 years ago, I was diagnosed with a brian tumor which was blocking my third ventricle. I had a VP shunt installed in Oct. 1987 to cure the hydrocephulus. A few months later I had a second operation to "try" and remove the tumor itself. The operation was unsuccessful, but, since then, I have annual MRIs to ensure that the tumor has not grown and that the shunt is working properly. So far.. so good. The aggravating part... I have almost constant headaches and weird "head spells" since the installment of the shunt. I am frequently dizzy/lightheaded and have an AMAZING photophobia, where I cannot handle any light (tv, computer, fluorescent, etc). It has been 14 years of frustration. I seem to get an attitude from the medical field that I am "lucky to be alive" and the symptoms are ignored. It has gotten in the way of my professional life, personal life, etc. The head spells are hard to put into words.. my head feels cramped, the dizziness is sickening, and the light sensitivity is difficult. There is also spotty vision. Anyone out there have similar symptoms with or without a shunt ?? Take care.. Tom. Tom Welch <wmot_AT_greennet_DOT_.net> Amesbury, MA - Thursday, November 16, 2000 at 12:50:02 i have just been diagnosed with a pituitry tumor and i`m hoping to have surgery in the new year to remove it. i would like to hear from people who have had the surgery.. judy messenger <pizette_AT_iprimus_DOT_.com.au> qld - Thursday, November 16, 2000 at 08:13:48 I am looking for information on Posterior Pituitary Lesions. Anyone with info., please contact me. Thank you. S. Vendilli <slv_AT_infonline_DOT_.net> Hermitage, PA - Thursday, November 16, 2000 at 00:53:47 hi...i have hyperprolactinemia.....on dostinex 0.5 mg 1x a week....i'm getting dizzy and lightheadness on and off....at times i get a weird feeling in my head...hard to describe..... depressed, so tired all the time, been takin meds about 5 weeks now....is this normal? my prolactin level is 118 anybody have any similar problems???? pc <sassy32_AT_sunlink_DOT_.net> - Wednesday, November 15, 2000 at 18:31:20 no comment j.r. okc, ok - Wednesday, November 15, 2000 at 11:24:47 Hello, I'm looking for anyone who has either had the trational surgery, and or the Radiosurgery to remove a pituitay gland tumor , recently. Thank, Theo Theo <Theo1_AT_pacbell_DOT_.net> San Jose, ca - Tuesday, November 14, 2000 at 18:47:59 I have done it all, Parlodal, Dostinex, Surgery,Gama Knife.Started out with 2500+ prolactin down to 500. Maybe I could answer a few questions for anyone with a piturtary tumor. I am a 54yr.old male. Jon Hill <jonh120_AT_Hotmail_DOT_.com> Yerington, Nv - Tuesday, November 14, 2000 at 00:30:21 I had my non-functioning tumor removed in september 00. I'm recovering OK. Since 2 weeks I have a lot of muscle aches and stiff joints. My bloodwork till now is OK. My TSH was a little lower than before. Anybody experienced the same, or nows where the muscle and joint aches are from. Vicky <pinokkio_AT_chello.nl> Apeldoorn, - Monday, November 13, 2000 at 10:54:16 hi! i'm 22 and was diagnosed with a pit. tumor. the messages i have read are comforting thanks guys.i was wondering how every one on dostinex is doing health wise. all the messages are from a few years ago can someone send me some current info ? thanks erika Erika <Barbiemamma_AT_aol_DOT_.com> Chino, CA - Sunday, November 12, 2000 at 23:54:02 Hi, looking for info on preg and prolactinoma....I have a 6mm prolactinoma and I am 20 wks preg. I am not taking my previously prescribed Dostinex currently (OB said it was okay, Endo said no way - I'll follow HER advice thank you very much.) Anyway, my only BIG complaint is CONSTANT HEADACHES. Nothing will get rid of them (not that a whole lot can be taken while preg anyway!) I have had one visual field to check for tumor growth and all looks fine so far. No one seems too concerned, but I am miserable! anyone else experience this?? Thanks.... l jaillet <ljaillet_AT_ustin.rr_DOT_.com> austin, TX - Saturday, November 11, 2000 at 16:16:18 i was diagnosed with microadneoma when i was 16, i'm now 21. i was on bromo up until 2 months ago, really i stopped taking it 2 years ago because it made me violently sick, but i didn't tell anyone. i was seeing an endocrinologist but she wouldn't change my medication, i finally found a neurologist that prescribed dostinex. monday will be my 3rd. dose and so far all i've experienced are stronger headaches which i can tolerate. i've been lactating for about 6 years now and i'm tired of it. even when my prolactin levels went down to 14 it didn't stop, is there any hope? also, i've seen a lot of people mentioning infertility. i've asked both the endocrinologist and neurologist repeatedly if i would have trouble conceiving (when the time comes, way way into the future) and they both looked at me like i was crazy for even asking. my periods are very irregular so i thought it was a legitimate question. i also found that when my prolactin levels are high i gain weight and have trouble losing it, again my doctors said that the tumor had nothing to do with it. i've battled with eating disorders for years, and go to the gym obsessively but to no avail. has anyone had similar experiences, am i crazy for asking these questions? my main concern is the lactation, i think 6 years is enough already. any help would be greatly appreciated. Jacinda <RedFireRose_AT_aol_DOT_.com> Fresh Meadows, NY - Saturday, November 11, 2000 at 03:32:22 Thanks for an excellent site. I had experienced symptoms from a prolactinoma over many years before diagnosis. Incidentally, the symptoms seemed to have occurred after a hip operation when the anaesthesis didn't work properly and there was excess blood loss. Has anyone else experienced onset of this condition following a surgical trauma? k. rolfe <furryanne_AT_one_DOT_.net.au> goonellabah, nsw - Friday, November 10, 2000 at 19:43:08 looking for information on pitituary gland tumors and surgery for them. Vanessa Scrubb <vscrubb_AT_gte_DOT_.net> Los Angeles, CA - Friday, November 10, 2000 at 17:14:34 Have a macroadenoma on the Pituitary, rather a lge one it had been growing for years, so they say. They tested all the Hormones and they have come back normal. I have been steadily gaining weight for a few years now and am getting a little down with this. They will be removing the growth through the skull around the begining of December. Is there anyone out there with the same problem? cecilia <sobermaul_AT_aol_DOT_.com> Treasure Island, fl - Friday, November 10, 2000 at 16:17:21 Hi, I had my non functionong pituitary adenoma,hardy's grade c removed in july-00. Feeling great since then. Any body with similar exp. pl. contact me. we can share our experiences. BALARAM <BALARAM_200_AT_REDIFFMAIL_DOT_.com> VISAKHAPATNAM, AP - Friday, November 10, 2000 at 13:57:24 Don't know what the problem are Elizabeth Collins <bobbeth96_AT_aol_DOT_.com> Haughton, LA - Thursday, November 9, 2000 at 19:01:15 Looking for a pituitary meeting? Don't miss this one brought to you by PITUITARY DISORDERS EDUCATION AND SUPPORT GROUP Sat November 11,2000 10:30am to 1:30pm. GUEST SPEAKERS; Dr.Ariel Barkan, Professor of Endocrinology and Dr.William Chandler,Professor of Neurosurgery. University of Michigan Pituitary and Neuroendocrine Center. TOPICS; Clinical Trials, Acromegaly,and the latest techniques for transshphenoidal surgery. Location; University of Michigan Hospital, 1500 E. Medical Center Drive.,Ann Arbor, Michigan. Please join us and feel free to ask questions about all types of pituitary tumors, treatments and surgery! The meeting will take place in room 2G321 wich is next to the hospital cafeteria on level 2. Please RSVP for meeting by November 9TH. Contact Teresa Sullivan sully_AT_ismi_DOT_.net Teresa Sullivan 809 Oakridge Ct. Brighton, MI 48116 Phone: 810 227-5615 Fax: 810 220-8450 sully_AT_ismi_DOT_.net . mi - Tuesday, November 7, 2000 at 10:03:41 I was diagnosed with a pit tumor in 1998. At the time I was only 29 and engaged to be married. I was devastated to find this shocking news. I was experiencing extreme headaches, dizziness, weakness, blurred vision, and nosebleeds. After an MRI my neurosurgeon decided to go ahead with the under the lip operation. the tumor was the size of a bottlecap. I was in ICU for 3 days and then sent to a reg room for about 3 more days. the approx . recovery time for me was 8 weeks. After eating nothing more than soup broth, jello, strained potatoes and ice cream I was ready to get back to normal food. I am currently taking Levoxyl for my hormone replacement. Also I am having to take prednisone to replace what my body would be producing normally. This of course is causing me to gain weight. I have gone from 98 pounds to 124. I am certainly not complaining about this beacause the situation could be a lot worse. I just thank God every day that I recovered nicely. It wasn' t easy at times because I went through stages of depression and anxiety. To those out there who are facing this situation -- just hold your head up and try to relax and know that you are not facing this alone. I would love to hear from anyone . For me the hardest part was just not knowing what to expect. I hope that I have been able to help someone by sharing my experiences. Feel free to contact me by E-mail! Melissa <wmrogers_AT_lexcominc_DOT_.net> NC - Monday, November 6, 2000 at 22:41:26 I just found out I have this tumor again after 2 surgeries.The good news it is not growing.I'm not on any parlodel or dostinex .I'm upset because I have to have an MRI every year and it was there last year and the Dr never told me they told me my pituitary was enlarged due to both of my surgeries DUH!!!!!!Thankfully my neurologist was honest and knowing that I have been dealing with this illness for the past 13 years.He knew I could handle the results.I am glad I'm on a new med called topomax for my migraines it takes a while to get used to and it has some good and bad side effects but it has helped my migraines so much it is worth it to me and it also helps you lose weight Ren'e <EYORENPOOH9962_AT_aol_DOT_.com> Salem, Va - Monday, November 6, 2000 at 13:13:39 i have empty cellar and a compressed pituitary. i am having headaches and some visual. does anyone have this and would like to chat? joan <prayingprinces_AT_hotmail_DOT_.com> - Sunday, November 5, 2000 at 20:43:55 I have a prolactonoom.A tumor on the hypofyse from 7mm.I take 6 tablets parlodel on a day but my prolactine was still to high,and now i must have for the third time on the m.r.i.scan.Ihave now these problems since 1997.I am 41 years old.who will mail with me?Thea Thea de Goede <theadegoede_AT_hetnet.nl> Zoetermeer, - Sunday, November 5, 2000 at 13:39:25 Hi, I was diagnosed with a necrotic pituitary macroadenoma 1.7 cm in height which abuts the undersurface of my optic chiasm. I was just started on Dostinex even though my prolactin level at last check was only 49. I will soon be seeing a neurosurgeon in case I require emergency surgery. I was told that if I had headaches accompanied by vision loss I'd require it. My blood test results are normal but only marginally and my peripherals are fine. The problem is my tumor is not diagnosed. Anybody experience this type of situation? Any and all help would be deeply appreciated. Thanks! L Gonzalez <sweetmamita_AT_yahoo_DOT_.com> Brooklyn, NY - Sunday, November 5, 2000 at 03:48:06 I am a 22 year old female, suffering from Pseudo Tumor cerebri...I had to have an operation ( SHUNT)Everything is fine now, but I get headaches when I laugh really hard, or bend down..If anyone has the same disease, please contact me at ajkj43hotmail_DOT_.com, I would love to talk to you. Anita Anita Boland <ajkj43_AT_hotmail_DOT_.com> - Friday, November 3, 2000 at 11:36:58 Just a quick question to anyone out there that has taken PARLODEL. Does anyone know the long term side affects of this drug??? Kathy <Jturner7_AT_uswest_DOT_.net> Colorado Springs, CO - Thursday, November 2, 2000 at 20:10:53 HI Chris, I would think the pit tumor was the primary problem leading to infertility problem...thus the need for IVF. What other symptoms does she have besides infertility problems? Have they done a recent pituitary hormonal screening on her? ALL hormones> prolactin, FSH,LH,TSH, GH, cortisol, ACTH etc. Nice of you to take a interest in your sisters health! I wish everyone had such supportive family members! Jo jo - Wednesday, November 1, 2000 at 23:07:00 My sister was recently suffered from a pituitary apoplexy which the doctors say was secondary to lupron stimulation during an ivf she was invovled with. Has anyone had a similar reaction. The tumor was an old tumor that no one knew about. Any info, would be appreciated. Chris Grell <grell_AT_compuserve_DOT_.com> San Rafael, CA - Wednesday, November 1, 2000 at 19:47:39 I am 26-year-old Female having hypo prolactine I took PARDOL, DOPERGEN both of them cause illness and I had to stop. Now I am trying a German medicine called AGNUCASTON if you have any information about the drug or any better drug that could so pregnancy could occur Thank you Heba <A_A_helal_AT_hotmail_DOT_.com> Cairo, - Monday, October 30, 2000 at 13:07:13 Has anyone out there with a prolactinoma not responded to either Parlodel or Dostinex? Have you then gone ahead and had surgery? Was it successful and did it remain that way over time? I am about to schedule surgery, but I'd like to know that would be the end of it. It would be so nice to feel well again. Thanks. Michelle <rustic_AT_dnvr.uswest_DOT_.net> Evergreen, CO - Monday, October 30, 2000 at 12:30:54 Hi I am 33 yeasr old female,have pituitary tumor,very small it didn show on the cat scan,but had breast secretion of milk and other symptomas,(infertility).Beacause i wanted to star a familly and wanted to know what was stoping me from it,I went to see a doctor that sent me to another,that tprescrived Parlodel to me low dose at the begining and at the last 2 pills of 2.5 a day.My prolactin level was 40 during the first month of this dose of treatment it went down to 32.7,then my doc put me on a dose of 1 pill of 1,25 a day during 3 months it did lower my lactin problem to 31.9 during 3 months so now am back to 2 pills of 2.5 a day.It now has being 6 months of treatment,and would like to receive letters from all of you who had luck with parlodel and pregnancy tell me your storie and maybe share info.My name is Jesse and my email is ricoman_AT_myhome_DOT_.net I wrote this on october,29,2000. Love to all of you wish you the very best and thanks for taking the time to read my message. jesse allaria <ricoman_AT_myhome_DOT_.net> mossyrrock, Wa - Sunday, October 29, 2000 at 18:24:25 mother was just diagnosed last week w/ her 2nd pituitary tumor. This diagnoses is almost exactly 3 years to the date of the first . Holly Budde - Sunday, October 29, 2000 at 18:19:38 It has been very enlightning to read your comments. I went to my physician for a general check-up and began going through some general info and realized that I hadn't had a cycle since May. I am 38 so this would be a little young to be starting menopause. She set me up to return in two months. In the mean time on my own, I got a bone density screen which showed significant bone loss and prolactin level which was high. At my following appointment they decided to take me off of Amytriptiline which I took daily to keep my migraines under control. She thought it was possible that it could have caused a pituatary adenoma. Now we are waiting to see if my prolactin level declines. Thanks for the info. Liz Trapp <lltrapp92_AT_hotmail_DOT_.com> Larned, KS - Friday, October 27, 2000 at 10:56:14 I am diagnosed with a microadenoma/ prolactinoma 6 years ago, want to now more about treathments and medication. Claudine De Blick <Touchlpa_AT_terra.es> las palmas, - Thursday, October 26, 2000 at 05:09:05 My husband age 63 has just had an MRI and been diagonsed with a large mass in the sella with suprasellar extension, measuring 25x32x22mm with encasement of the optic chiasm, probable mild invasion of the left cavernous sinus and partial encasement of the left cavernous carotid artery - could be large cystic pituitary macroadenoma, craniopharyngioma, or meningioma. Seeing a neuro surgeon tomorrow - He has been healthy up to this time - only symptoms visual. Many of you speak of the Mayo Clinic - in Rochester or in Scottsdale? Any help you can give will be greatly appreciated. Thanks shary <shary_AT_mev.ent> - Wednesday, October 25, 2000 at 19:04:37 My Dad was recently diagnosed with a pituitary tumor. On October 25, 2000, a date will be set for resection. My Dad is only providing vauge info to the family. What can I expect imediate post-op and the months/years to come...please....he won't tell us! Thank you for your time and concern, Mike Mike <sailfish5_AT_hotmail_DOT_.com> North Central, TX - Wednesday, October 25, 2000 at 02:59:56 This site gave me a lot of important information and confirmed what my doctors have said. Thank you for providing this wonderful service to those who need it. Aimee Davis <Aimee_Davis_AT_baylor.edu> Waco, TX - Tuesday, October 24, 2000 at 23:24:54 My husband was diagnosed with a pituitary macroprolactinoma in 1991. His behavior has become very odd. His social skills have waned, significantly. He doesn't seem to be aware that he hasn't bathed in a week or more. He will wear the same clothing for days. He avoids tasks until he is confronted with serious consequences. I find expired paychecks stuffed under the seat of his car. He spends an inordinate amount of time "restoring" motorcycles, and excuses himself from family activities and important events to do so. He is a highly educated, 43 year old man, who behaves like a 14 year old adolecent. He doesn't seem to be aware of how irrational his logic is at times. He is oblivious to his oddities. Is there any chance that his behavior is related to the prolactinoma? Has anyone else experienced a behavior change? Kimberly <kbennett_AT_oakland.edu> MI - Tuesday, October 24, 2000 at 13:52:49 looking for info, family member just diagnosed with mass on Pit. Gland affecting 7th cranial nerve, mass is 3cm in size Resqkeeper <resqkeeper_AT_aol_DOT_.com> So. River, NJ - Saturday, October 21, 2000 at 22:31:10 Hey y'all, from Texas. I have just seen my neurosurgeon, and am having this thing out on Nov 13. Since my earlier entry in Sept(26 y/o male, diagnosed in Sept 2000), I have been taking Parlodel. I really haven't had any side effects, that I would consider bad; however, my other issues (i.e. libido, vision, headaches, etc) haven't improved. Thus, my wife and I, especially me, have elected for the surgery. My tumor is 1.3cm X 1.2cm X 1.3cm...has anyone had one similar to this size removed with success in the prolactin decrease after surgery? Let me know, and I'll keep you up to dat on my progress. Please feel free to write if you wish!!!!! Justin Justin Peugh <n2labs_AT_hotmail_DOT_.com> McKInney, TX - Saturday, October 21, 2000 at 18:27:35 Has anyone ever been treated with Tegretol (Geigy) for seizures or fits in the past and now have a problem with the pituitory or an endocrine problem. I was treated with this drug about 20years ago when it was quite new on the market and I just wonder about the side effects and if it caused my macroprolactinoma. I would be interested to hear any comments. John A - Saturday, October 21, 2000 at 17:43:44 I am 29 years old and I was diagnosed with hyperprolactinoma around six years ago. I was first prescribed Parlodel which worked in shrinking my tumor and lower my prolactin levels but made me feel ill otherwise. I have since been prescribed Dostinex which works and seems to have no side effects. We would now like to have a child and I was wondering if anyone has gotten pregnant while taking Dostinex. Stephanie <adwsmw_AT_rcn_DOT_.com> waltham, ma - Friday, October 20, 2000 at 00:23:30 I have a prolactinadenoma. It took several years to have it diagnosed. By that time, the tumor was involved with my optic nerve and the left carotid artery. I had surgery in Sept 97 after an argument with the neurologist that I was sent to. Dr. Lynn Taylor, Virginia Mason Medical Clinic here in Seattle, asked why I was there to see her. I told her my symptoms and she said. "You do not need to be seeing me you are manic depressive". Well, I had been geared up for a fight, a nurse that I worked with coach me to stop being so passive and stand up for my patient's rights. So we had a disagreement right there from the start. Somehow I was able to respond to her that "I did not know that. DOes it show that in my chart?" She replied, "No." I said something about all of the therapy treatment that I had had was with a therapist and that "you all are too cheap to send me to a pscyhiastrist." Then she examined me. Nothing showed up. She starting to tell me how I did not need an MRI. Nothing showed up on my exam. SO I asked her why, I was so sick that my work load had been cut 40%, why my vision was worsening and fading in and out, why I had these bad dizzy spells, why did I have such bad nausea. She finally condenscended to approve an MRI. We went out and scheduled the MRI. There was a cancellation for the next day at 8 am. I took the appointment. Dr Lynn Taylor called later that afternoon and said that I need to come into her office and that she was free at 4 pm. Well, I did have a tumor. One that had not shown up in the CT Scan that I had had in March. She examined me twice. Once after she told us the news and then when we came back into the room after viewing the MRI. SHe just could not believe that she could not see this tumor even when she knew just where to look. She also said that we would set up an appointment, the next Monday with the neurosurgeon. That I may have questions after being with Dr. Hsiang, implying that there might be a language barrier. He had a thick Vietnamese accent. I had taught English as a Second Langauge as a volunteer for a summer. SO I had no problem understaning him. But she promised to call me that night because she was going to be out of town at a clinic. She never called. She never refilled the Immitrex the weekend before my operation and I had a tendency to have migraines on Sundays. Well, I sent her an email. ANd then my lover sent her an email. She came into my hospital room, the day after my surgery. Just mad as wet hen. Yelled at me that I had ruined the opportunity for patients to ever communicate with her with an email. That I had abused her and that she quit being my doctor. And I yelled something at her as she walked down the hall. Then there were so many staff people in my room. They could not believe what they had seen and heard. Funny thing is that she is still my neurologist by the State of Washington law or medical guidelines. She would have to send me a return receipt registered letter to quit as my doctor. We win in our small ways. My care returned to the older neurologist that had ordered the CT Scan and had prescribed the Immitrix. He is good and gives me plenty of time but he is at the end of his career. Maybe I have not gotten the best of post operative care. Or maybe it is my endocrinologist. The Virginia Mason Clinic is so diabetes directed. He just told me a few months ago that my testosterone level has been below normal for all of the time I have been seeing him but he hesitated to mention it to me because I was complaining about all of the pills that I have to take. SO I went through two and half years of below normal levels and was suffering from so many of the effects of a low count. It took over 2 1/2 years for the tumor to finally go into remission. I had a reoccurrance in July 1988. Now I am struggling with more frequent and severe mental lapses and no one can figure it out. Then I was having these blackouts almost seizure like. Well the doctors can not find out anything. The EEG and the MRI show nothing. So finally I am talking about outside specialists. Plus I am HIV+ but am bless that the disease has never progress with me. My T Cells are and have always been in the normal range and my viral load show at undetectable. I have been HIV+ most likely since 1980. I had the symptoms of the flu but did not have the flu when I went to my doc in those days. A sure sign of turning serum positive, the approximate 6 months after being infected with the virus and the antigens then start to show up. But maybe it could be the virus hiding out and doing some cognitive damage. There are no studies or tests. But maybe I have the after effects of long term high prolactin levels. The tumor was also in two of my sinus cavaties. It was longer than they thought from the MRI and when the resident took out my stints more of the tumor came out. Or at least, I am guessing because he would only say that it was nothing. Excuse me, but the green long slimy elongated I don't know what kept coming out of my nose after he removed the stints. I sure do wish that I had found this website a longtime ago. And I hate to go to the brain tumor support group because I keep running into that certain female that thinks she can diagnoses pscychotic diseases plus neurological doctor. Any one in the Northwest with ideas of a good doctor for me to see? Then it took her office 9 days to not refill my Immitrix. Even though I called her assistant several times and my pharmacy kept calling. I finally had to have my primary care physician call in the order. Joel A Ewing <joelbears_AT_aol_DOT_.com> Seattle, WA - Thursday, October 19, 2000 at 21:23:20 Hello everyone, I too have used this guest book in the past for all my concerns with this pesty thing "the Tumor". I do get very frustrated at times and wondering why me. But I'm sure we all do. I do however have one quesion for anyone out there. Does anyone know of any type of diet that's suppose to help us, for example: like protein, carb..... I often wonder if anyone has ever come up with a diet for us that could actually help all of us. I am on parlodel fo rthe second time in two years. I just can't bring myself to have the surgery yet. This past week I had a viral infection, I can't believe how it literally wiped me out. You just think that your health is the same and that you can fight things like you use to. Also if anyone has any good web sites let me know too. you can e-mail me with suggestions. Thanks, Kathy :) katherine turner <jturner7_AT_uswest_DOT_.net> Colorado Springs, co - Wednesday, October 18, 2000 at 22:54:36 Hello Everyone. I'm just checkin in to say hi and thank you all for sharing your experience, strenght & hope with me. I was diagnosed with a Microadenoma in 1992, with severe headaches and secretion from my breast. In 1994 the doctors told me I would probably not have any kids. Well needless to say, in 1996 I delivered a healthy 8lb. 6oz. boy. I can't give you the whole story cause it's too long, but I had been taking Pergolide and Parlodel which both made me terribly sick. The doctor put me on dostinex and it worked a little better, but after months of frustration, I stopped taking it. It had been six months lapse time and I got pregnant. Of course the doctors were amazed because I had not been taking the medication to lower my prolactin level and they could not understand how I got pregnant. WELL, a lot of prayer did the job. I didn't pray for the baby, I just prayed and asked God to help me through my ordeal. He gave me a healthy, beautiful son who will be 4 in Dec. I said all that to say is don't give up and stay focused. I've been on temporary job assignments for 2 years with no medical insurance. I have not seen a doctor in 2 years. I'm sure my prolactin level has gone up because I have secretion from my breast again, headaches and no sex drive. I thought my sex drive diminished because of fear of AIDS, but I don't even think about it often and I'm only in my mid 30s. So now that I have medical insurance again, I will be visiting my doctor very soon. I just started this new job and after November 1, I can go to my doc. Please feel free to email me if you want to chat. I'm so grateful to this sight...it makes me feel I'm not so alone. Veda <onekidisenuf_AT_altavista_DOT_.com> Inglewood, CA - Wednesday, October 18, 2000 at 15:55:32 I am a 34 y/o female with hyperprolactemia. MRI's suggest a microadenoma on the pitutuary gland. My prolactin level has been very dynamic ,but regulated with 5.0mg Bromocriptine daily.My periods are regular. What's been happening lately is that I'm having one day of light bleeding in between periods. What could this mean? I'm not pregnant,nor am I on birth control.I don't have any children. I called M.D.'s office(that's relatively speaking...lol!) and the nurse spoke to the doctor and they want to check my prolactin level again. It was just rechecked in August with a level of 2.0. So.......does anyone have any answers,comments, or explanations. Thanks. Hartz <billster_AT_ix_DOT_.netcom_DOT_.com> MA - Wednesday, October 18, 2000 at 14:57:48 I was diagnosed with a pituarty tumor in May of 2000. I am 25 year old male that is really struggling with this condition. I have been taking .5mg of dostinex for the last six months. Initially the results were great, terrific sex drive, increased muscle mass with an overall passion towards life. However things have turned for the worse. I currently have impotence, no sex drive, depression, increased weight gain. The mood changes that everyone experiences on this board are also probably the most challenging part of this condition. My biggest challenge at this point is convincing the doctors that I need more dostinex or possible supplement patches of Testerone. If anyone has a doctor or ideas that could help me through this very difficult dilemna I would appreciate it. I have considered herbs, but have no idea on what some of the better herbs for condition might be. I would like to know more about Cabergoline. Ryan ryan newman <rnewman_AT_sco.edu> memphis, Tn - Wednesday, October 18, 2000 at 14:34:04 HELLO Everyone ryan newman <rnewman_AT_sco.edu> memphis, Tn - Wednesday, October 18, 2000 at 02:19:18 I was diagnosed with a 6mm pituitary tumour last December. I had it removed a month later. My prolactin level was more than 200 then. I had been on Dostinex since. Recently i had my blood tested again and found that my prolactin was 129. i had an MRI last Saturday and fortunately no tumour was found. But my prolactin level needs to be monitored closely as there are still some cells which is yet to become a tunour around my gland which is secreting prolactin. I am still taking Dostinex at the moment and will be taking it for the next 3 more months.If my prolactin does not go down, then i will need to switch to Bromo. I heard that Dostinex works better in most people but I doubt it is working on me because i had been taking it for more than 6 months now but my prolactin is still high. Has anyone has the same problem with me? I can't tolerate Bromo coz' it caused nausea to me. Pls help. Nicole Liew <lshua_AT_pc.jaring.my> Kuala Lumpur, - Tuesday, October 17, 2000 at 04:26:13 Hello i was told that I had a Prolactin level of 1800 about may of 00. I was than put on bromocripin at 2.5 mg once a day than a month later I had a level of 130 at which time I was put on 5.0mg a day for two months after which I now have a level of 180. the doc says I have built a ammunity to the bromo so he has put me on 7.5 mg a day. Has any one been on a level this high and if so what was the results. He told me the same time he put me on 7.5mg that surgery was the next thing and that I should have a good holiday because he would have the surgery done after the hloidays. He also told me the recovery period was between 3 to 6 mounths. My QUESTIONS are has anyone had a prolactin level this high and what did they do? Plus what is the normal recovery time for a tumor removal. Will someone recommend a great doctor with experince in this matter. My endo doc is great but I haven't seem to have gotten the same answer to my questions each time I visit him. I 54 years old and otherwise in very good shape. I look forward to your comments. Dennis <sixts_AT_harborside_DOT_.com> lincoln city, or - Tuesday, October 17, 2000 at 02:20:05 I have had my hormone levels checked numerous times at the Mayo Clinic. I will double check that cushings has been ruled out. Thank you so much for the information. TAKE CARE ALL. Tiffany mn, - Monday, October 16, 2000 at 20:47:04 Tiffany, Have they recently checked you for Cushing's disease? You need to be tested a least twice to rule it out. good luck amy nm - Monday, October 16, 2000 at 07:58:01 We're not alone! I was diagnosed with a non-functioning pituitary adnoma in 1997. At that time it was 11mm. Since that time: I have weight gain, severe headaches, purple stretch marks, and recently started lactating. I also have had a general feeling of tiredness. The tumor stayed the same for the first two years, and shrunk slightly this last year. Since I started lactating and my prolactin has risen slightly above normal, the tumor has changed in appearance but not size. I am 30 years old, a newly-wed and trying to get pregnant. I took the approach to read everyting I could find to prepare myself to ask questions. I suggest (Informed Decisions-a book from the American Cancer Society) My doctors have been very informative and helpful. (Mayo Clinic) My advice to everyone is to ask questions often and repeat them until you get answers. I hope to receive hormone therapy soon to facilitate my pregnancy. I am very appreciative of all of you who have shared your stories. GOOD LUCK TO YOU ALL. Tiffany <mandtley_AT_aol_DOT_.com> MN - Sunday, October 15, 2000 at 22:17:39 My GH-producing adenoma was removed two years ago, MRI doesnt show any remnants of the adenoma, but still the GH- and IGF-1 levels are high. Sandostatin and Dostinex seem to be useless. Could someone please tell me about pegvisomant (Somavert). Which company is manufacturing and selling this compound? How much does it cost? What might be the possible ways for me to get this drug, since it's not yet in the market in my country (Finland)? This drug seems to be my last hope... Teemu Nikali <tnikali_AT_ut.ee> Lappi, - Sunday, October 15, 2000 at 15:50:32 hi i am a 17 year old girl. i have a twin sister. since the past two years she has been getting some spots on her face when we took her to a doctor the doctor asked us to run some tests and in the harmone test her prlactin level was high. we our going to take her for some mris etc. but can somebody plz tell me what is the normal level of prolactin and what are the other things that can happen due to a high level of prolactin accept tumour. plz respond. kavita <plzwritetome_AT_rediffmail_DOT_.com> mumbai, maharastra - Saturday, October 14, 2000 at 10:29:55 questions about pitutary adnoma tumors and their effects deana dzrik <mkdzurik_AT_yahoo_DOT_.com> shreveport, la - Saturday, October 14, 2000 at 00:46:58 Glad to find this site! I was diagnosed a few weeks ago with a 2.5 cm Prolactinoma. My levels are apparently considered extremely high. Reading about other peoples symptoms has been very helpful. I have actually been lucky, only headaches (which I had long ago gotten used to) and irregular cycles. I have started on Parlodel which I am tolerating so far. What I am curious to know if anyone else has had a tumor of this size and been able to get pregnant? I am terrified of the thought of surgery (and it seems it is not likely to be successful for such a large tumor) but I would really like to have children and don't know whether the medication is capable of normalizing my prolactin. If anyone has had a large prolactinoma that they have been able to resolve soley with medical therapy I would love to hear about it. Alternatively, anyone with information on the possibility of pregnancy with a macroadenoma I would love to hear from you as well. Take care and good luck everybody. melissa <z_cov_AT_hotmail_DOT_.com> New York, NY - Thursday, October 12, 2000 at 23:59:40 no comment kondi poulimenakos <Kpoulimenakos_AT_hcmt_DOT_.com> baltimore, md - Thursday, October 12, 2000 at 10:43:30 Hi, I was just wondering if any of you are on parlodel or it's generic and are still taking oral birth control pills. What are your reasons for taking or not taking oral contraceptives. Thanks Mary Deweese <mryaya_AT_hotmail_DOT_.com> St. Louis, MO - Tuesday, October 10, 2000 at 20:31:40 Whether or not the surgeon goes through the nose or under lip, with a endoscope or traditional pituitary instruments the route is still the same. Through the sphenoid sinus cavity, through the meninges(covering of the brain), and into the sella region. The whole may be a little smaller. I worry that the patients are taking the surgery too lightly with the endoscope approach. You still need to heal on the inside. I really don't think there is a big difference in the approaches unless you go in the side of your skull. I have had under lip approach one and through nose twice with no big difference. Let you body heal Joanne ., PA - Tuesday, October 10, 2000 at 11:19:11 Looking for anyone with pituitary tumor (prolactinoma) who has had endonasal surgery, NOT transphenoidal. This new procedure sounds much easier, less invasive. Please let me know. Thanks Debi Tonne <RDTonne_AT_flash_DOT_.net> Houston, Tx - Monday, October 9, 2000 at 23:35:55 HI everyone. I have had a prolactinoma for about 10 years now. Much to my surprise I became pregnant (after my doctor telling me that this was unlikely). My son is about 11 days old now and I have been trying to breastfeed without much success. The baby nurses for about 45 minutes but is still hungry and I am having to supplement with formula. This is very disappointing to me and I was just wondering if anyone out there has had a similar experience with trying to breastfeed with a prolactinoma. Please email me with any advice you may have. I am wondering if the tumour is inhibiting my ability to produce enough milk. Thanks. Alison <baileyau_AT_autobahn.mb.ca> Winnipeg, MB - Monday, October 9, 2000 at 17:50:40 hi there, i am 45yrs old and diagnosed last wk hypopituitary sheehan's 15 yrs after a hemorrage..i am very ill, weak and frightened but determined to recover as much of a life as possible.. i would so much like to be in contact with others with this condition re symptoms,meds,info,support..knowledge is power..let's learn and share ...thank you all for being here ..smiles Carly Skjelvik <shes1inamillion_AT_aol_DOT_.com> Vancouver, BC - Monday, October 9, 2000 at 16:23:40 I have had problems in the past with high prolactin level. Since 1997 I have had trouble off and on with my breast leaking and getting sore. I have went through periods that I have no sex drive. I continue to struggle with my weight. After the prolactin level went back to normal, the cortisol level remained low. I had 2 MRI's. The first MRI my piturutary gland was enlarged. The second MRI was normal in size. This was four months apart from each other. But the report said the pituritary gland was slightly heterogeneous is signal diffusely. Do anyone knows what that means? I was diagnosed with prolactinomia but never treated. I was told because the second MRI was normal and my prolactin level went back to normal that I was fine. But I would still have symptoms off and on. I am confused on what is going on with me. I don't know if tumors change in size and how this affects weight loss. The help I am requesting is advice on how to handle this. I know have been diagnosed with Ocular migranes and hormone spurts and problems may cause this. I have significant loss of visual field. I was reading that one may go blind if not treated for prolactinomia. I had an MRI 3 days ago and will receive the results in one week. Can someone give me some light to this situation or a direction of things to read to learn more? Please Help Soon! Sandra Heath <sandraheath45_AT_hotmail_DOT_.com> - Monday, October 9, 2000 at 07:17:05 Glad to have found this site. Anyone know of any research or study that has been done that addresses the weight issue? Seems there are many who have difficulty losing or gain extremely fast prior to being diagnosed and/or after they begin treatment. Is there any info available on what the possible connection is (and any solutions)? I'm struggling to lose this weight and can't seem to get a handle on it. (I have a prolactinoma) Started to gain weight in my teens before it was diagnosed and have yet to find a physician that acknowledges what most of us suffering from us have already found---There IS a connection!! I heard about an unofficial study done by a fellow suffer but don't know if it made much of an impact on the medical community. Any advise/support would be appreciated. Glenndale <Glenndale13_AT_juno_DOT_.com> Baltimore, MD - Saturday, October 7, 2000 at 18:07:47 I had pituitary tumor removed september 6. Two days ago I started a CSF leak from my nose, only when I lean over. Has anyone experienced this and what can I do to heal the leak? My doc says not to worry and see how it developes in the next two weeks. I hear something about taking caffeine?? Any help is welcome. Vicky <pinokkio_AT_chello.nl> Holland, - Saturday, October 7, 2000 at 15:59:36 Hi i was just looking for information. My wife suffers from pituitary gigantism and has had three operations to remove tumor from her pituitary gland and expects to have a further operation as activity seems to have increased in her hormone checks D.Twigger <d.twigger_AT_ntlworld_DOT_.com> nottingham, - Saturday, October 7, 2000 at 14:02:20 I am a 23 year old female and I am six foot three inches tall. I have always been tall. I had a very late start with my menstrual cycle. I was 16 at the time that it started. When I turned 18, my periods started coming and going. I am now 23 and I have not had a period in three years. It is very stressful. I have been to many doctors and they are uncertain of the cause. I have vision loss, increased mood swings, back pains, always thirsty, excessive hair growth in some places, hair loss in other places, and there are many more problems that I am experiencing. Please e-mail me if you are having the same problems. I have been to a endocrinologist and I am going back in a couple of weeks. My prolactin levels are high and he has said that I posssibly have a pituitary adenoma. Please contact me if you know anything that I should tell or ask my doctor. Thanks Jennifer <sexy6three_AT_yahoo_DOT_.com> Navarre, Fl - Thursday, October 5, 2000 at 01:36:00 I started Dostinex on April 3rd, 2000 because the MRI a week prior showed a 3.3cm by 3.3cm pituitary tumor, later diagnosed as macroprolactinoma. On April 5th, 2000 I also started taking Decadron but for only four weeks. Supposedly the Decadron would help to "jump start" the Dostinex. An MRI taken on September 26th, 2000 shows the tumor has shrunk. It is now 2.1cm by 2.1cm. I am happy to tell you that surgery may never be needed. The shrinkage is expected to continue and I hope it does. Also note that my prolactin and testosterone levels are now normal whereas they were both very high and very low respectively back at the beginning in April of 2000. I hope at least one person can learn from my experience. Read everything you possibly can, especially from within this site so you can learn what steps others have taken. Don't be afraid to take charge when visiting your doctor(s). Jeff <pikakard_AT_scc_DOT_.net> Twin Cities, MN - Wednesday, October 4, 2000 at 23:39:53 Hello, I'm a male 28 years of age. I was diagnosed with a Pituitary Tumor Approx. 5mm 3 mouths ago with a prolactin level of 108 and my TSH(TEstestrone(spelling) of 174 (low). My doctor endo. doctor put me on Bromocriptine 2.5mg. It dropped my Prolactin level to 65, then She raised it to 3.75mg (1 1/2 pills). This dropped it to 35 prolactin level. Now on taking 5mg. I was wondering if anyone experinced this and how much Bromocriptine you are taking to reduce your prolactin level and increase your Testestrone levels. Also my doctor hasn't mentioned removing the tumor, but I was wondering if anyone had there approx 5mm tumor removed? Can it be done? Any info and chatting would be helpful... Thanks you could email me at: dart234_AT_aol_DOT_.com Dave <dart234_AT_aol_DOT_.com> FL - Wednesday, October 4, 2000 at 22:19:05 Hello, my name is Tom O'Neal and I was diagnosed with acromegaly in 1991. I got real lucky, found the right doctors and had the tumor removed within a month of diagnosis. It paid off. Today, I am not on drugs (never have been) and have required no radiation. All my blood work has been perfect. I posted the following story on the Pituitary Tumor Network several years ago and get a lot of responses from it and I still correspond with many patients who are trying to find answers. I'm posting it again in the hopes it may help another person with a pituitary tumor. Good luck, Tom ``And now for some good news and a few tips from a "cured" acromegalic. I'm new to PTNA but I thought I would share my story with you in the hope that it may offer some encouragement to those of you who may be very concerned, very frightened and very frustrated. My acromegaly tumor (3 cm) was discovered in 1991 by a GP who just happened to be a very close friend. He broke the news gently and told me, the best he could, what the problem was and what my options were. He had done a lot of reading before talking to me and explained that the only way to completely remove a pituitary tumor was to remove it surgically. He stressed that he, and most of the medical profession, was very ignorant about pituitary tumors. He explained the procedure for removing one was very delicate and required a skilled surgeon working with a team that included a top notch endocrinologist. He was honest and acknowledged that he had no idea where to send me. He did warn me that I should not let anyone use me as a guinea pig. I thank him to this day for that advice. He then suggested that we begin a search by calling all friends, family and associates, explaining the problem and have them check their areas for surgeons and endos who were familiar with pituitary disorders. Perhaps, he said, we would get a couple of names that came back from a lot of the contacts. I personally made calls to Washington, DC, Los Angeles, Houston, Atlanta, Michigan, and Minnesota, Canada and other places. All of my friends in those areas made inquiries. Within a week I had many lists of names. So did my GP. Only two names were on all the lists - Dr. George Tindall at Emory University Hospital in Atlanta and Dr. Edward Laws, now at the University of Virginia. More checking showed that both Tindall and Laws were neurosurgeons who had a team of doctors who specialized in pituitary tumors. Both also worked with a very good endocrinologist. Both had performed more than 1,000 transsphenoidal surgeries and both had excellent track records. We were on our way. Since my parents live in Atlanta, I chose Tindall. My GP made the appointment. Despite being told by many of the doctors I had contacted and who had seen my MRI that a 3 cm tumor would cause major problems, especially considering the awkward position it was in, I was put at ease quickly in Atlanta. Dr. Tindall checked my MRI, confirmed what I already knew and said: "I think we can handle this. How about next Monday." He and all his team treated me with great respect. I was introduced to all those who would be involved, including the endocrinologist, Dr. Richard V. Clark, a really great guy. I was introduced to David Adams, one of Dr. Tindall's many assistants and the man who specialized in removing a tiny piece of adipose (fatty) tissue from the abdomen to pack the sella after the tumor had been removed. Before I left, Dr. Tindall took me to meet a woman who had undergone transsphenoidal surgery (Cushings) the day before. It was very reassuring. My tumor was removed on July 9, 1991 beginning at 7 a.m. When I awoke at 4 p.m. Dr. Tindall was in my room and whispered gently, "I believe we got it all." Today, almost eight and a half years later, all blood tests have been perfect. I received my most recent test results today (October 26, 1999). I have required no medications and no radiation treatments since surgery. I feel and look great and I am keeping my fingers crossed that my tests will remain perfect until I hit my 10-year period, which is both Tindall's and Law's time frame for a complete cure. That's only a little more than a year and a half from now. I consider myself very lucky and blessed. Here is what I learned. I hope it will help you. Remember, most endos and neuros, even the good ones, know practically nothing about pituitary tumors. Search for the right one until you are exhausted. If you get the right team, you'll know. They will treat you with respect and you'll get no conflicting information. They know what you are going through; they deal with this everyday - just like you. Do not let ANYONE tell you what you must do (radiation, medication, etc.) until you are convinced they know what they are talking about. Remember my GP's warning: Most know little about pit tumors; don't be anyone's guinea pig. Get the right team.'' Good luck, Tom O'Neal Tom O'Neal <oneal_AT_coastalnet_DOT_.com> Morehead City, NC - Tuesday, October 3, 2000 at 22:30:41 I have a pituitary microadenoma and am looking for information regarding the condition. Murat Oztarcan <oztarcan_AT_hotmail_DOT_.com> London, - Tuesday, October 3, 2000 at 15:55:01 I have a pit. tumor and take parlodel. I have fibromyalgia and take celibrex. I take lithium and welbutrin for manic depression. I also take seroquel for insomnia. I experience many side effects from these medications. I dont know which causes which side effect. It is frustrating! Side effects are: Increased appetite, frequent acid reflux (especially after eating anything), periods of nausea, of dizziness, and of fatigue. I also have melasma (dark spots on face) which usually only happens during pregnancy, and have had problems with hypoglycemia for years, but am not diabetic. I believe that many of these problems are linked. If any of you have had any problems related to mine, please let me know, and possibly give me further information. Also please let me know if any of you were taking anti-psychotics before diagnosis of pituitary tumor. Thanks! Rashelle Pompa <Believer7771_AT_aol_DOT_.com> Southaven, MS - Monday, October 2, 2000 at 23:55:02 I recently was diagnosed with Cushings Disease - If you are a newbie or have been through this before, let's talk! Kr Jones <krjones2423_AT_aol_DOT_.com> Sugar Land, TX - Monday, October 2, 2000 at 18:08:25 A FAMILY MEMBER HAS BEEN RECENTLY DIAGNOSED WITH A PITUITARY TUMOR (BENIGN). I HAD THUMBED THRU A NEWS LETTER FROM AN ORGANIZATION I BELIEVE WAS CALLED, "THE PIT SHOP" , IS ANYONE AWARE OF A WEB SITE FOR THIS ORGANIZATION? THANKS :) pjglvn <pjnbilletal_AT_hotmail_DOT_.com> Turlock, CA - Monday, October 2, 2000 at 14:20:41 Conducted the clinical Trials on DHEA-S in Human and First. Phase of Clinical Trials has got over. The Drug efficacy has been evaluated by using the R.I.A parameters and the clinical efficacy of reverse pharmacology of the Metabolism of DHEA-S compound has been documented in Photographs to further strengthen up the claim. Further information on DHEA-S in detail is enclosed herewith, for your ready reference. Academic Affiliation: From 1999 onwards affiliated to Nadiad Ayurvedic College as a co-ordinator of various projects. Future’s Goal: To put forth a joint project to elevate DHEA-S (Adrenal steroid) in Human with repute Pharma. Residence Add.: FB- 98, Alembic Colony, Gorwa Road. Vadodara. Ph. 0265-382237 ® References for the Work on DHEA-S: From Dr. Jayesh. Sheth. (079-6575541, 6578450) Dr. Malvika. Bhatt. & Dr.Bharti. Bhatt. (079-6442121) Dr. Pranav. V. Bhatt <bhatt_pv_AT_rediff_DOT_.com> Vadodara, Guj. - Monday, October 2, 2000 at 11:59:41 My daughter has been having a lot of emotional problems and has had multiple panic attacks since her child has been born. She spent a week in the hospital where she was put on medication for this which really just whacks her out. She also eperiences servere headaches every day. Her Psychiatrist called us and told her that her lupus test came back more positive then ever and her MRI from one view "looked like" she MAY have a cyst. My question to any one of you who has had a cyst or tumor, did any of you have the emotional symptoms? She also still has lactation from her breasts which Ibelieved I read that Prolactin was effected. Thank you, I am desperate to know that the emotional part of this situation may be due to the possibility of the Cyst on her pituitary and maybe the lupus is a false positive. Thank you BB Rebecca Burns <gabbiesgma_AT_yahoo_DOT_.com> Memphis, Tn - Monday, October 2, 2000 at 09:53:40 My daughter has been having a lot of emotional problems and has had multiple panic attacks since her child has been born. She spent a week in the hospital where she was put on medication for this which really just whacks her out. She also eperiences servere headaches every day. Her Psychiatrist called us and told her that her lupus test came back more positive then ever and her MRI from one view "looked like" she MAY have a cyst. My question to any one of you who has had a cyst or tumor, did any of you have the emotional symptoms? She also still has lactation from her breasts which Ibelieved I read that Prolactin was effected. Thank you, I am desperate to know that the emotional part of this situation may be due to the possibility of the Cyst on her pituitary and maybe the lupus is a false negative. Thank you BB Rebecca Burns <gabbiesgma_AT_yahoo_DOT_.com> Memphis, Tn - Monday, October 2, 2000 at 09:51:25 hi.. ive begun taking dostinex...but im sick to my stomach..what can i do? i take it at bed time.......how long does this last? jaleese <jaleese_AT_wzxr_DOT_.com> pa - Monday, October 2, 2000 at 06:59:19 I am glad I found your site as I am a pituitary patient. I was diagnosed with a pituitary adnoma approximately 12 years ago. I suffer form prolactinomia and have underwent many different treatments without much success. I hope to cintact your facility in the future. Thank you. Valerie Favelle <trigger_AT_mb.sympatico.ca> Winnipeg, MB - Saturday, September 30, 2000 at 12:59:26 My daughter has hyperprolactemia. I want to be kept informed about what others experience with this condition so I can better guide and console her. Joyce Kildea <sirfudge_AT_aol_DOT_.com> Medford, NJ - Saturday, September 30, 2000 at 09:17:11 My friends daughter is 22 and has had outbreaks on her arms and legs and excessive wt. gain with purple stretch marks. They think it's Cushings. Are these sysmptoms? Sandy <homdec_AT_aol_DOT_.com> chicago, IL - Friday, September 29, 2000 at 22:04:46 Hi, I've written in here a couple times before regarding depression after surgery. I had my transphenoidal surgery for a prolactinoma about 5 months ago and I am still feeling the after effects. I've found my depression gets really bad a few days before my period (I've never had PMS before!). Also, before my surgery I had absolutely no sex drive. Now it's gone sky high--I'm afraid I'm gonna get myself into trouble! Last year I gained about 10 pounds and since the surgery I've lost 20lbs, which is a lot when the most I ever weighed was 118lbs. I find I do have an appetite, and I love to cook, but my capacity to eat is so low--I'll eat 6 bites of a meal and feel full for hours. My hair has been falling out, too. Does any of this sound familiar to anyone? I'd really like to know if this was to be expected. Thanks. E.B. <djjazzyliz_AT_hotmail_DOT_.com> Peterborough, ON - Friday, September 29, 2000 at 15:40:47 I HAD SURGER JULY 1998 FOR PROLACTINOMA, MAY 2000 IT IS BACK CANNOT TAKE BROMOCRIPTINE CAUSED PHSYCOSIS. TUMOR WAS 13MM WHEN THEY REMOVED IT THE FIRST TIME, IN MAY IT WAS 8MM, HAD THROIDECTOMY IN 1988 AND TUMOR CAUSED FALSE BLOOD LEVEL READINGS FOR 10YRS. DR.'S WANT ME TO HAVE MRI EVERY 6MONTHS TO WATCH FOR GROWTH, HAS ANYONE ELSE HAD THESE PROBLEMS? ALSO HAVE FACIAL HAIR, EMBARISSING, AM 45YRS OLD.HAS THERE BEEN ANYONE ELSE TO HAVE THESE PROBLEMS, ALSO HAVE FIBROMYALGIA, DEPRESSION, ANIXIETY DISORDER,WEIGHT GAIN,ALOT OF WEIGHT GAIN, HIGH BLOOD PRESSURE, ARE THESE COMMON WITH PROLACTINOMA? ANYONE WITH SIMILAR PROBLEMS, PLEASE LET ME KNOW THAT I'M NOT THE ONLY ONE, AM SCARED SINCE IT HAS COME BACK IN LESS THAN 2YRS. VICKIE <VckLVLD_AT_AOL_DOT_.com> bOWLING GREEN, KY - Friday, September 29, 2000 at 01:30:21 hi! i am looking for others to share information with. in sept 93 i was diagnosed with cushings disease, a tumor on my pituitary gland after having the symptoms for seven years and being misdiagnosed. i had transphenoidal surgery , which was successful. in may 99, i was diagnosed with bad cells growing back on the pituitary gland, no evidence of a mass tumor , but evident symptoms. i had transphenoidal surgery again in dec 99, which was unsuccessful, i had an adrenalectomy to remove my left gland in july 2000, i just finished five weeks of radiotherapy to the pituitary gland, to reduce the risk of nelsons syndrome, and i have one more surgery to go, to remove my right adrenal gland which will stop my cushings symptoms. anyone in a similar situation, please feel free to email me. Michele Allison <micheleneil_AT_primus.ca> Halifax, Nova Scotia - Thursday, September 28, 2000 at 23:21:12 Hi, I would like to know if anyone out there as or heard talk of a tumor called myxolipoma. It is located in the front of the forhead. It is a rare tumor and I would appreciate any information. Thank you. Ada Saunders <adasaunders_AT_hotmail_DOT_.com> Nfld., - Thursday, September 28, 2000 at 19:52:21 I have been diagnosed with Cushing's Syndrome (pituary) go to see nero next week I'm very scared any info on this rare disease would be greatly appreciated! please help! I'm so glad I found this web site britt euler <bgardnereu_AT_aol_DOT_.com> lowell, ma - Wednesday, September 27, 2000 at 13:57:53 I would like to know if any person with prolactinoma also have high TSH blood test. Before I have only microadenoma secreting prolactine. But now my doctor told me that my thyroid was producing too much TSH. Is it better to take Tapazole to reduce my TSH and then my hypophysis will less product prolactine? Does thyroid problems have effects on weitgh? Thank you SONIA AYOTTE <miz_AT_megacom_DOT_.net> Quebec, - Wednesday, September 27, 2000 at 12:00:15 I had a pituitary-, GH-secreting microadenoma removed two years ago, but my GH-levels didn't drop enough. I suffer from gigantism, and beginning to be an acromegalic, too. Since january I've been taking Sandostatin LAR 20mg monthly, and started last august also Dostinex 10mg/week. Last results didn't show any response to these drugs. Now some endocrinologists suggest gamma-knife, but most of them would give me more Sandostatin and Dostinex. Does someone have any experienses about those drugs being ineffective at lower doses, but finally giving relief in larger doses? How about experiences about gamma-knife? Any Somavert users out there? I'm 26 years old, 6'10" tall, and tired for not finding a consensus about my situation among the "specialists" in my country. And I sure don't want to end up with panhypopituitarism just because doctors lack the knowledge about possible drugs and give me radiation. Teemu Nikali <tnikali_AT_ut.ee> Lappi, - Wednesday, September 27, 2000 at 11:14:48 comments no high prolactin level and pregancy menaka <menakapathirana_AT_hotmail_DOT_.com> - Wednesday, September 27, 2000 at 04:22:28 I Have been hypothyroid for about 8 years. For the first 6 1/2 years I took the same does of synthyroid, two years ago I started gaining weight ( 40 lbs. now) had three increases in dose of synthyroid, sooo tired all the time, very moody, on effoxor for depression. Now my TSH is running over 100 ( normal 2-6 ) T3 & T4 are normal so I just had a MRI to diagnose for Pituitary tumor. I am only 41, married w/ five kids. I am now getting very worried about all of this. If there is no tumor, what could be wrong, any ideas? Beverly O'Malley <bko77_AT_hotmail_DOT_.com> Pittsburg, ks - Wednesday, September 27, 2000 at 01:02:06 doing a report on the effect of smoking and would like to see pictures of it. Alfred thomas <nolimit1025_AT_hotmail_DOT_.com> biloxi, ms - Tuesday, September 26, 2000 at 19:48:48 Just trying to find out all I can about Thyroid dissorders. Brenda <lucymae_AT_yahoo_DOT_.com> Reform, Al - Tuesday, September 26, 2000 at 11:20:20 I never realized so many people had pituitary tumors. Back in 1991 I was diagnosed with one. Through prayer and trusting in God mine went away. I will be praying for all of you. Teresa <tfswv_AT_aol_DOT_.com> - Monday, September 25, 2000 at 23:08:00 I have just found out that i have a tumor. I would like to know more about the weight gain. Is weight gain a result of having the tumor or from the meds? I go to my doctor on wed oct.4, and I am going to ask for Dostinex is this the right thing to do? Please e-mail me at Iveryyarbro_AT_acninc_DOT_.net ivery yarbrough <iveryyarbro_AT_acninc_DOT_.net> jackson, tn - Monday, September 25, 2000 at 12:46:20 In 1991, I had a pituatary tumor-small prolactinoma removed-no radiation. I completely lost my sex drive when I had the surgery-I'm 32 and married-no he is not a happy man. Now after all these yrs, I have symptoms of hypothyroidism unable to be managed with medication. Im tired, hurt all over, fall alot-very clumsy, cant sleep, and depressed all the time. I wondered what others have done about the loss of sex drive-i have used every pill and cream that said it would increase my sex drive-none worked-Help me before my husband divorces me-he has put up with alot!!! Also has anyone ever gotten a screwed up thyroid from this. thanks Christi <crst_AT_libcom_DOT_.com> Pittsburgh, PA - Sunday, September 24, 2000 at 18:55:15 Hi, I was just told my prolactin level was at 118 and I'm 33 and never had children, they ordered an MRI, and test for hypothyroidism. I hope it's the second thing, anyway, I'm not secreting milk from the breast, but losing my period's. My God what is happening to me. Ive been unusually edgy and sometime's explosive. I wonder if this is part of it. I feel as if I'm going into early menapause. Could that be possible with what's going on? anyway, I'm trying to find support and info, if anyone has any to spare. thanks Lucy lucy <littlelu66_AT_yahoo_DOT_.com> brooklyn, ny - Saturday, September 23, 2000 at 22:02:16 Hi everyone. Yesterday I got the results of my MRI. I have been diagnosed with Pituitary microadenoma. I have no idea what it means. I am to see a specialist. But, can anyone help me with some information? e.g. what am I to expect. Treatment, etc. Sandra Nadal <sandranadal_AT_cs_DOT_.com> Lansdale, PA - Saturday, September 23, 2000 at 09:05:55 I had a pituitary tumor removed 3 weeks ago. The surgeon was not able to remove all of it. So far my bloodwork is still OK. Does anybody have experience with radiation treatment ??? Do they radiate all of your head or just spots. How about hairloss and sickness. Any answer is welcome........ Vicky Huysdens <pinokkio_AT_chello.nl> Apeldoorn, - Friday, September 22, 2000 at 15:21:02 i was diagnosed with Empty Cella syndrome but no one will explain it to me or what i can do about it. Hanna Novak-Weber <kittytimes6_AT_yahoo_DOT_.com> Ravena, OH - Friday, September 22, 2000 at 14:58:17 I'm a 40 year old female. I was diagnosed, only by having a ct and mri, following being in a head on car collision...with empty cella syndrom four years ago. Since then none of my physicians have done anything concerning this. I have severe chronic pancreatitis, a chronicly blocked liver (I've had about 10 ercps to unblock it) and severe osteoporosis (which the osteologist says is caused by the empty cella). Ok, now I am having problems with my glucose levels fluctuating and I've been having blackout spells...nearly fainting 4-5 times each day. I have such a major cyst on my pituitary that it has compressed the gland to the point that the doctors say I now, in essence, have no pituitary gland. Now, my question is....I have no information and have been left in the dark about all of this and the implications of having empty cella. Does anyone out there have this problem and can you tell me what you know about it...does it produce symptoms...is there a "cure" or treatment for the empty cella? Thanks very much. Susan <shoshanna777_AT_msn_DOT_.com> Hidd, NC - Friday, September 22, 2000 at 09:43:18 I was having pain in my breasts and nipples, when they would just brush up against anything,I gained a bunch of weight and was getting headaches and seeing "lightning" behind my eyelids. The doc got some blood work done and the testesterone level for a normal male is supposed to be between 240 and 980, mine came up at 29, so he called me and said that with the headaches and vision problems that it could be one of two things. Something testicular or something pressing or growing on my pituitary gland. I have been having some roller coaster rides as far as moods are concerned. I had an MRI done today, and amd waiting for the results.What happens if I have a tumor on the pituitary? Do they operate at once or try some chemical approach? Any body have that operation through the nose? Is it very painful after the surgery? I'm a bit nervous.I,m a 47 year old male. Is this sort of tumor common for men and women? What about side effects of the chemical approach? Many questions,..I know but I've just been handed a bunch of bad news lately and Its starting to get complicated.Any answers at all would go a long way in helping to relax my mind. Thanks..BK Bob Kelly <famousstranger_AT_pa.freei_DOT_.net> Wyomissing, Pa - Friday, September 22, 2000 at 07:29:35 I have been diagnosed with pituitary tumor on sept. 19,2000. Patsy Grider <jiggleypooh_AT_hotmail_DOT_.com> kenton, oh - Thursday, September 21, 2000 at 23:56:57 I was diagnosed with Sheehan's Syndrome a year ago- having a very hard time with it. Would greatly appreciate hearing from anyone in a similar situation. Thanks!!!!!!!!!!!!!!!! Need reassurance that I am not alone in this!!!!!!!!!!!!!! Tatiana Holmgren <holmgren.tm_AT_pg_DOT_.com or holmgrenca_AT_aol_DOT_.com> - Wednesday, September 20, 2000 at 14:34:42 I have just beed diagnosed w/ a prolactinoma, and wanted to chat w/ someone who has similar symptomolgy and issues. I am a 26 y/o male, I know this already narrows the search, and am being treated w/ Parlodel. I begin treatment today actually! Please, if anyone has any suggestions, advise, support, or comments, forward anything to the e-mail link below. I am a RN, so any medical advise/suggestions would be great. Thanks again from Texas. Justin Peugh <n2labs_AT_hotmail_DOT_.com> McKinney, TX - Wednesday, September 20, 2000 at 13:32:55 I have had hyperprolactima for four years now and have been on and off the standard medications currently on Dostinex. I had a 24 hour urine test that came back with a high cortisol level. I am currently waiting for test results back from a dexamethesone test (spelling). Any information or experiences with Cushing would be greatly appreciated. After reading about Cushing it seem sto fit what I have been feeling for the last year - even though I have been told to "watch my diet and exerice" and even asked if I "was a closet eater". Lori <ldg_AT_besskunz_DOT_.com> AZ - Tuesday, September 19, 2000 at 17:54:52 I have endometriosis, double uterus (can't remember the correct medical name) and my pituatary gland level was at 90 when it was last checked. I am not on any medicine as of right now. Joanne <joruffner_AT_excite_DOT_.com> Huachuca City, AZ - Monday, September 18, 2000 at 00:20:12 I have endometriosis, double uterus (can't remember the correct medical name) and my pituatary gland level was at 90 when it was last checked. I am not on any medicine as of right now. Joanne <joruffner_AT_excite_DOT_.com> Huachuca City, AZ - Monday, September 18, 2000 at 00:20:05 HI Phil, I am not sure what you mean by anti-growth hormone meds. I assuming you have acromegaly. If your IGF and GH levels continue to be elevated following surgery then you need treatement. It is best to received treatment ASAP to control further damage to your system. Feel free to contact me to discuss further. I was diagnosed almost five yrs ago with acromegaly. Trish trish <acrowhat_AT_aol_DOT_.com> OH - Sunday, September 17, 2000 at 22:50:48 what is the normal period of time to take anti growth hormone after surgery? phil hileman - Sunday, September 17, 2000 at 20:24:24 I am 30 years old and I'm currentlly undergoing test to confirm my doctors opinion that I have chushings.Any information on the condition and treatments would greatlly be appriciated.Thank you. Patsy Grider <jiggleypooh_AT_hotmail_DOT_.com> kenton, oh - Sunday, September 17, 2000 at 01:59:05 My wife has been diagonised today as having a pituitary macroadenoma due to an MRI done for a very slight blur in her right eye ONLY. no other symptons. The hormone test reports are expected by tuesday which will , i presume will conclusively show which hormones are overactive. as indicated to us by the doctors that surgery may be required. would like to know ur experince about the surgery etc.in detail,, would really appreciate it. thanks, Regards/ ravi Modi Ravi Modi <shirav_AT_vsnl_DOT_.com> Bombay, - Saturday, September 16, 2000 at 07:05:04 Hi everyone. I am 21 years old and found out last October that I had a pituitory tumor. I feel that I am left out in the cold from my doctor. In reading all of your inputs I was touched. I had no idea that this was so common. I was put on Parlodel and found that my life had changed. I thought that the side effects were controlling my life. I have no talked to my doctor since and am wondering if he remembers that I exist!! I have found that I lack in concentration, whcih is the worst because I'm planning to graduate next spring. I on my own, reduced my prescription and only take it when I have a full stomach or I will feel miserable for the rest of the day. I'm glad that I found this site, because hopefully now I have someone to talk to that actually understands. If anyone would just like to talk, please contact me through e-mail. Thanks Wendy Wendy Askew <wenaskew_AT_attcanada.ca> Halifax, NS - Friday, September 15, 2000 at 11:15:38 Regarding endoscopic surgery. What type of pituitary tumor did you have? Have you had all your hormones checked since your surgery? Are they normal now? caio JIll Jill Ozog <oo7jil_AT_aol_DOT_.com> - Thursday, September 14, 2000 at 22:48:31 I would be happy to answer questions regarding Endoscopic Pituitary Surgery. Nicole Evans <evansn_AT_cshs.org> - Thursday, September 14, 2000 at 19:05:21 MY FATHER IN 1981 WAS DIAGNOSED WITH A TUMOR ON HIS PITUITORY GLAND.THIS WAS THE FIRST YEAR THAY DOCTOR'S WOULD PERFORM THE SURGEORY BY GOING THROUGH HIS NOSE TO REMOVE THE TUMOR.YEARS PRIOR THEY HAD TO GO THROUGH THE SKULL!SINCE THIS SURGEORY IT HAS LEFT MY FATHER WITH VISION NO ONE WOULD WISH ON THEIR WORST ENEMY.AT THE TIME MY FATHER WAS ONLY 33 YRS. OLD AT THIS POINT HE WAS LEFT TO PLAY MR. MOM WHILE MY MOM RAN THE ROOST ALONE.VERY HARD ONE EVERY ONE TO DEAL WITH!THIS TUMOR WAS LATER RELATED TO TOXOPLASMOSIS WHICH IS CAUSED BY THE URINE FROM CATS!THIS DISEASE WAS CARRIED TO MY FATHER BY HIS MOTHER WHEN SHE WAS PREGNANT WITH HIM CAUSING HIM TO CONTACT THIS DISEASE AND EFFECTING HIM LATER IN LIFE WITH THIS TUMOR.I'M WRITING THIS TO AWARE OTHERS OF THIS DIEASE AND WHAT IT CAN CAUSE.THIS IS WHY WHEN YOU ARE PREGNANT YOUR DOCTOR WILL INFORM YOU TO STAY AWAY FROM CATS AND LITTER BOXES.PLEASE TAKE THEIR ADVISE AND MINE!SIGNED JEANNINE IN BUFFALO. YAY AWAY FROM BY HIS MOTHER WHEN SHE WAS PRCARRIE SED BY THE URINE IN CATS JEANNINE CORMIER <JENNEC90> LACKAWANNA, NY - Tuesday, September 12, 2000 at 23:02:32 I am updating my lastest info. Found out I had a 1.5CM pit tumor in spring of 99. I have been on Dostinex twice a week ever since. I dont have any bad side effects. My headaches have gone away and the tumor has shrunk to 8mm. I am now off of the surgery list for now. I am going to have another MRI in November. I will let you all know then if it is still shrinking. Good luck everybody! Penny <PennyMac4_AT_hotmail_DOT_.com> Lexington, OK - Tuesday, September 12, 2000 at 22:43:10 Hi. I am a 22yr old female with a pituatory gland tumor. I was diagnosed with this on Jan.00. I have been on Dostinex since they first found out about it. I would like to know if this medication just stabalizes the tumor or if there is a chance in it shrinking the tumor. I go back in to the doctor on the 22 Sept. The worst part about this whole situation is that my husband is in the military and we just moved here, so I have to go through this process all over again. So, if there is anyone who can tell me a little bit about the surgery then please feel free to email me. I am so thankful that I came across this web site. I really did feel as though I was in this alone. Anna <kasuboskia1_AT_hotmail_DOT_.com> Lacey, Wa - Tuesday, September 12, 2000 at 09:28:51 I need to find support so I can deal with my husbands moods. His tumor was only partially removed and he takes bromocryptein (sp) donna deneault <d_deneault_AT_hotmail_DOT_.com.> Cornwall, on - Tuesday, September 12, 2000 at 06:41:10 i fine it interesting in joining this web mary kristine r. ecarma <mary.kitz_AT_eudoramail_DOT_.com> iligan city, - Tuesday, September 12, 2000 at 00:43:10 This is a great site Silvia Locascio - Monday, September 11, 2000 at 23:06:33 Does anyone know of a really good endocrinologist in Arizona (Phoenix or Tempe area?) Don't trust my current one! Thanks for you help! Lori <ldg_AT_besskunz_DOT_.com> Phoenix , AZ - Monday, September 11, 2000 at 16:50:31 Looking for information on pituitory tumors, since I have just been diagnosed with a benign toumor. Theresa S. Aperawic <flower9051_AT_aol_DOT_.com> Sparta, NJ - Monday, September 11, 2000 at 07:51:05 I need insight. I am sort of a rare case due to the fact that I am a young male(24) who has had a pituitary tumor removed. I was 18 when I had surgery. I presently have a prolactin level of 230, but I am recently taking dostinex to lower that. My pituitary gland now performs very little which in turn causes my thyroid to do nothing(hypothyroidism). All this has resulted in me appearing to look 4 to 8 years younger than I actually am due to hormone activity and inactivity. I have all the symptoms of hypothyroidism; overweight regardless of vigorous exercise, memory loss, short tension span, very cold, crankiness, etc. I just recently just found out about the thyroid condition after all these years (I am with a new doctor who specializes in thyroids). I am taking levoxyl for my thyroid replacement. Does anyone know at what point I will notice postive side effects of the drug, ie: weight loss, longer tension span, etc.? i would also like to find a support group, as I despritely need to speak with others who are going through the same problems I am. thank you for any help. Eric <bikerhagan_AT_yahoo_DOT_.com> Seatle, - Monday, September 11, 2000 at 02:46:16 WHAT ARE THE SIDE EFFECTS OF DOSTINEX? KATHY NILES <GONILES_AT_AOL_DOT_.com> COLUMBUS , OH - Saturday, September 9, 2000 at 00:06:44 I am a specialist of obstetric & gynecology amani khater <aaa_k2_AT_yahoo_DOT_.com> alexandria, - Friday, September 8, 2000 at 20:03:56 hi. i have hyperprolactenima...prolactin level is 120 mri reveled no tumor... my hubbys insurance will not cover parlodol or dostinex... any suggestions? what will happen if i don't get this meds. in me? they are to expensive to pay for i have 5 children... jaleese <jaleese_AT_wzxr_DOT_.com> - Friday, September 8, 2000 at 06:12:48 hi my name is mia and i am now 28 i had a pit.tumor at the age of 15 they removed surgically _AT_the age of 17 after losing my eyesight ...i had several illnesses after the surgery and i am still stuggling with headaches and vision problems i have had 6 diffrent kinds of surgery since the pit surgery i still have mris every yearto see if it growing or staying normal this has had a big impact on my life the drs told me when they removed it that the risk was very high for the tumor to grow agian after 5 years ....has anyone heard the same or was just my drs? if anyone has any more net sites that can help me pleas contact me and let me know....thank you mia mia deckard <deck123_AT_bbtel_DOT_.com> vinegrove, ky - Thursday, September 7, 2000 at 12:48:55 Hi I wrote to this site back in July and am still waiting to hear from someone, is there anyone out there who has had a pituitary tumour removed and then needed followup radiation that can give me some information. Please e-mail me if you have been through this. J. Lugthart <julieroland_AT_ripnet_DOT_.com> Brockville, On - Wednesday, September 6, 2000 at 12:36:51 I am interested in learning more about microadnomas of the pituitary gland and to find out about the effects this may have on the activity of my thyroid gland. Kelly London <tlondon99_AT_aol_DOT_.com> grand island, ny - Tuesday, September 5, 2000 at 20:32:52 I posted at this site last year, when I found out I had a 6mm tumor,non-functioning. I have recently been experiencing symptoms and wonder if anyone else has had the same. I had a bad sore throat for about a week. The following week it seems I was having some hypoglycemia. All along I have had fatigue, muscle weakness, out of breath going up stairs, etc. I was to have an insulin tolerance test to test certain horomone levels. But, I got extremely dizzy, nauseated and my blood sugar fell. My doctor decided not to do the test by injection of insulin but I fasted in the hospital until it got low enough to the tests. My prolactin is just a little high. I believe my doctor thinks maybe I was having some adrenal problems. We are still awaiting test results. Does anyone have any similar problems. As of last month I still had a menstrual cycle. At the time all of this was happening I felt very ill. Can you have adrenal insuffiency w/o lack of other pit. hormones? My growth hormone may be low too. Thanks for your input! Kristy Kristy Bartel <bwb_AT_ev1_DOT_.net> Spring, Tx - Tuesday, September 5, 2000 at 18:28:42 Intersted in information on Cushing's Desease Leon Barry <momb712_AT_aol_DOT_.com> St. Petersburg, FL - Tuesday, September 5, 2000 at 13:45:46 In the last month, myself (26) and my only biological sibling, a 24 year old sister, have been diagnosed with prolactinoma's. Since, we are both adopted, and our biological father was also adopted and now deceased, we are unable to trace this disorder back genetically. However, we are very curious if others have had this experience of close relatives being diagnosed. We have the same symptoms, except that her prolactin levels are extremely higher than mine, which our fortunately in the normal range. I have had one child, who is now four, but my sister has been unable to conceive despite two years of infertility treatments and charting. We both battle the headaches and both have intense motion sickness. These coupled with fatigue tend to make us depressed most of the time. This is new to both of us and since we are just beginning this, we would appreciate any information or advice anyone may have. Thanks and wellness to all. Melissa <melnaly_AT_wans_DOT_.net> OK - Sunday, September 3, 2000 at 18:07:22 I was diagnosed with prolactinoma and told that my options were to die, go blind or take bromocriptin. I took the bromo and began to hallucinate several days later. For 10 days I was in a psychotic state and didn't know. I was taken off bromo in an emergency situation. I have been told after a second MRI that they couldn't see anything. Meanwhile, I had to have a hysterectomy (5 hours) due to fibroids. I have also lost teeth due to bone loss. I had a bone density test and have osteo. I am tired all the time and have a lot of other symptoms. Does anyone know of a doctor who is aware, holistic and who takes care of the entire body? ingrid <gerigk_AT_tinyus_DOT_.net> Seattle, Wa - Sunday, September 3, 2000 at 00:20:32 I was diagnosed with prolactinoma and told that my options were to die, go blind or take bromolactin. I took the bromo and began to hallucinate several days later. For 10 days I was in a psychotic state and didn't know. I was taken off bromo in an emergency situation. I have been told after a second MRI that they couldn't see anything. Meanwhile, I had to have a hysterectomy (5 hours) due to fibroids. I have also lost teeth due to bone loss. I had a bone density test and have osteo. I am tired all the time and have a lot of other symptoms. Does anyone know of a doctor who is aware, holistic and who takes care of the entire body? ingrid <gerigk_AT_tinyus_DOT_.net> Seattle, Wa - Sunday, September 3, 2000 at 00:19:01 I have hyperprolatinemia. I've had 1 stillbirth, and 2 miscarriages. My ob and endocrinologist said not to worry about prolactin levels, it wasn't a concern. I don't believe them any more, so I'm searching information myself... becky <ebjwild1_AT_yahoo_DOT_.com> portland, Michigan - Friday, September 1, 2000 at 00:08:02 I have had problems since 82. Diagnosed with fibromyalgia in 93. For years complained of milk in breasts, other problems. Finally could no longer walk. Had hysterectomy in June 99. Diagnosed with endometreosis and adenomyosis along with other tumors, cysts, etc. Still felt somewhat crummy and could not lose weitht. Just had test results --have problems with prolactin, estrogens, DHEA, and T3..and have mono. We began by treatment with dostinex, estrase, and DHEA. After just one pill of dostinex, there are changes that seem to be good. I am losing fluids. If this treatment continues such improvements, I will be elated. PS, I also was diagnosed with GERT the gastro condition with acid reflux. Just two hours after taking the dostinex ALL of those problems went away.---we were shocked. No one ever considered that problem could be hormones! Am looking forward to taking the next pill. The side affects for me are headaches, dryness of eyes...Great site, am glad I found. Carolyn Trim <ctrim_AT_pdq_DOT_.net> Houston, Texas - Thursday, August 31, 2000 at 15:39:40 Cathy, I responded to your message but I must have the wrong address (Dusty376_AT_juno)? Could you send the right one?Am anxious to talk with you! Kristy Kristy Bartel <bwb_AT_ev1_DOT_.net> spring, Tx - Tuesday, August 29, 2000 at 22:14:46 excellent site Rena Mitchell <billrena_AT_aol_DOT_.com> Greensboro, NC - Tuesday, August 29, 2000 at 16:53:45 Hi everyone, I was wondering if anyone out there as fibromyalgia? I think there is a connection between it and the pituitary gland. I had a pituitary pit and I used the drug parlodel. It worked for me but now I am having many problems with aches and pains etc. feel free to email me! Ada <adasaunders_AT_hotmail_DOT_.com> Nfld., - Monday, August 28, 2000 at 13:40:41 I have recently been told I have a high level of cortisol in my system and currently undergoing another test to determine what is producing it. I have had prolactin problems for years with negative MRI's and currently on dostinex. What is considered a high cortisol level? My endro. lady hasn't answered alot of questions yet and keeps telling me to wait for these tests. I have a hump on the back of my neck and am wondering if I have Cushings. My main question is what is considered high level of cortisol . . . is it anything over the 1-50 normal chart range? Thanks for any input! Lori G. <ldg_AT_besskunz_DOT_.com> Phoenix , AZ - Monday, August 28, 2000 at 13:30:37 Does anyone know a doctor that is really experienced in this stuff on the new mexico texas border. Lubbuck, amarillo? and Im moving near bakersfield ca soon. thanks melentine hatrick <melentinehatrick_AT_hotmail_DOT_.com> portales, New Mexico - Sunday, August 27, 2000 at 21:58:08 my tsh level is o.oo, I have a mass in my thyroid...they recorded it as being 2cmx2cm during an ultrasound, they're doing a scan in a few days. I've gained weight and they thought my levels would be high not low. Anyone know more symptoms on the pituitary side of this and treatments? I have the low sex drive, cold sometimes, tired all the time, activity way down, achy, doctor said beginnings of arthritic degeneration of spinal column. I'v always been active, 5 kids and weighed the same after as befor. now 45 lbs over. depressed alot. I hate being fat. Always told people when they told me to quit smoking...rather die skinny than live fat...almost true. I quit 2 yrs ago, considering starting up again. Never had a weight problem back then. Anyone know if over use of sassafrass could be connected. I drank so much back then that it made me have severe cramps and diahrea...is that spelled right...either way it didnt come out right ha ha ha . melentine hatrick <melentinehatrick_AT_hotmail_DOT_.com> portales, New Mexico - Sunday, August 27, 2000 at 21:27:34 I am 27 years old and was diagnosed with a nonfunctioning pituitary microadenoma 2 years ago. My biggest symptoms were amenorrhea and a 40 lb. weight gain over 3 years. It is so frustrating. I never had a weight problem prior to this. I work out six days a week and watch what I eat. I am getting very depressed over my size. I know that I shouldn't let my appearance effect me like this. I am getting my annual MRI next week to see if it has grown. I am wondering if I should try a medication like Parlodel or Dostinex? I have been reading that side effects sometimes include a weight gain and I obviously do not need to gain more. What have your experiences been? I would appreciate any replies or personal stories. Thanks Kim Shore <kimberlyshore_AT_aol_DOT_.com> Washington, DC - Sunday, August 27, 2000 at 20:52:08 I am looking for any info on exactly what is involved in transphenoidal surgery. I have a 1.5cm non-secreting pit tumor and am told sugery is inevitable. I have never had any type of surgery and I'm pretty scared. Any info would be much appreciated. Thanks Whitney <whit_79_AT_hotmail_DOT_.com> Dallas, TX - Sunday, August 27, 2000 at 16:54:16 i had a tumor on the pituatory gland in 1991 which was removed via surgery thru the nose and was very sucessful. i would like to get information on this subject. victoria free <freecos_AT_inetw_DOT_.net> oldtown, fl - Saturday, August 26, 2000 at 19:17:06 HI Sholmes, I tried to e-mail you privy but your address is wrong. What type of info are you looking for? Trish trish <acrowhat_AT_aol_DOT_.com> cleveland, oh - Saturday, August 26, 2000 at 09:01:41 I am sorry to anyone who tried to email me I forgot my password and just got my new one. I am still very anxious about talking to someone about pituitary cysts and recieving information or suggestions from other people Jeremy <cab792000_AT_yahoo_DOT_.com> - Saturday, August 26, 2000 at 01:35:34 This is a very interesting site. I have had elevated prolactin for over 8 years. At first my Doctor told me my skipped pierods was just nerves. Finaly a Doctor had my prolactin checked and it was approx. 40. Eight years later it has slowly risen to 118. It is generaly between 99 and 132. My doctors keep telling me just to have it checked every six months or so. They have not recommended medication. I hope they know what they are doing! Thanks for reading, take care, any comments welcome. Lauretta <snoopylauretta_AT_aol_DOT_.com> Atlanta, GA - Saturday, August 26, 2000 at 01:03:01 my father has been diagnosised with craniopharyngioma and i wanted to speak to someone who has had the surgery. Thanks, Gia Gia <honeydip1974_AT_aol_DOT_.com> bronx, ny - Friday, August 25, 2000 at 15:24:51 Have any of you out there noticed that after a stressful period in your life, your hormones get whacky again and/or your tumor grows? Is this my imagination? Would love to hear from you. Michelle <rustic_AT_dnvr.uswest_DOT_.net> Evergreen, CO - Friday, August 25, 2000 at 12:27:42 information on medication sholmes <sholmes_AT_aksum_DOT_.com> akron, oh - Thursday, August 24, 2000 at 16:28:07 I was just diagnosed with a pituitary cyst. I go back to the Endocronoligist very soon so he can tell me what they want to do about it. Anyone with any information or advice on this subject please contact me. Jeremy <cab792000_AT_yahoo_DOT_.com> - Wednesday, August 23, 2000 at 18:54:33 I was just diagnoasted with a pituitary cist. I go back to the Endocronoligist very soon so he can tell me what they want to do about it. Anyone with any information or advice on this subject please contact me. Jeremy <cab792000_AT_yahoo_DOT_.com> - Wednesday, August 23, 2000 at 18:52:24 I was just diagnoasted with a pituitary cist. I go back to the Endocronoligist very soon so he can tell me what they want to do about it. Anyone with any information or advice on this subject please contact me. Jeremy Blush <cab792000_AT_yahoo_DOT_.com> - Wednesday, August 23, 2000 at 18:51:12 I was diagnosed with a prolactinoma in 1988. My daughter now has high prolactin levels. Sharon Hinchcliff <ghinchcliff_AT_juno_DOT_.com> ogden, ut - Wednesday, August 23, 2000 at 14:12:00 ihave to go through the page pramodgaonkar <pramodgaonkar_AT_hotmail_DOT_.com> mumbai, mah - Wednesday, August 23, 2000 at 04:10:37 I was diagnosed in 1988 with Cushings Disease on my first visit with a new doctor. I had my corticol steroid (if I remember correctly)producing tumor removed in July of 1989 after many months of testing. I was on full hormone therapy for the first year then gained full function of my pituitary. I have not thought about it in a long time till I found this site while browsing the web. It brings back lots of frustrating times when I needed answers. I spent weeks in the medical library of a local college(days when I thought I couldn't make it physically or mentally) I'm sure things have come a long way now, but knowledge was my power I needed to know what was happening to me. Thank God and wonderful doctors. I would just like to offer words of encouragement to everyone to just keep pushing for those answers. Lynn Young <usmc-lover_AT_mail_DOT_.com> Denver, NC - Wednesday, August 23, 2000 at 00:01:26 My mother-in-law in Aarlborg, Denmark is suffering with severe throat cancer. Is there a Protron radiation center in Denmark ? If not, is there one nearby ? This is an urgent need. Her name is Greta Hvistendahl, and is being treated in the Intensive Care unit in a hospital in Aarlborg Is there anything you can do to help ??? Thanks you - Don Konold 310 456-1291, 310 336-6453 Don Konold <donkono_AT_gte_DOT_.net> Malibu, CA - Tuesday, August 22, 2000 at 19:38:33 I have a pituitary microadema,fibromyalgia,manic-deppression,chronic insomnia,and melasma(dark spots on face which occurred right after tumor diagnosis). Has anyone taken risperdal or other anti-psychotics before tumor diagnosis? Rashelle Pompa <Believer7771_AT_aol_DOT_.com> Southaven, MS - Monday, August 21, 2000 at 20:45:56 I was diagnosed with a pituatary adnoma 4 years ago. I was prescribed Parlodel and have been taking it ever since. Recently my original symptoms have returned and it seems like the medication isn't working. I had another MRI and a nurse informed me that it came back normal (whatever that means) and that my doctor wants me to continue with my regular dosage. I have so many questions. Does anyone know about a website that might offer a list of possible effects (affects?) of a pituatary adnoma and treatments? mary hernandez <hernanmk_AT_aol_DOT_.com> Decatur, GA - Sunday, August 20, 2000 at 01:31:14 Hello, I just had the surgery to remove my prolactinoma tumor in my pitutary. I had it done on weds, the 16th. I actually came home from the hospitasl yesterday after only three days, I am doing remarkable due to the great team of Surgeons at Barrows nureo dept. They were awesome and were able to remove tha entire tumor thus reducing my chances of a regrowth!!! Its been tough and not i am in the home stretch of a long awaited recovery. Any questions I'd be happy to tell you about the surgery, god bless all. Colleen Varela <saenzcoco_AT_aol_DOT_.com> phoenix, az - Saturday, August 19, 2000 at 21:06:39 Hi, I think this webdsite's great for information. I recently had a Rathke's Pouch Cyst removed and I know that this sort of thing doesn't occur often and I was just an unlucky one. However I was very lucky with my persistence of my symptoms with the dr.s as the cyst was about 2cm in size and near my optic nerve. I have pills, and an injection daily now and change a patch 2 times a week. I have had this problem in my first year of G.C.S.E.'s and am very lucky it wasn't this school year coming. If any one can offer information, or I can help answer, or reassure someone that's great. Best wishes to all Jane <Jemgauvain_AT_tesco_DOT_.net> East Sussex, - Saturday, August 19, 2000 at 05:40:00 Hi, just visiting this site. I just had surgery 4 weeks ago for a pituitary tumor that is secreting the growth hormone and causing me to have acromegaly. They did not get all of the tumor because it is wraping around my caroid artery, so I start radiation next week and have a long road ahead. If any of you know more information about acromegaly and hormone replacements...etc please e-mai me. Thanks!! May God be with all of us!! Kristie <mkusa2_AT_aol_DOT_.com> WI - Saturday, August 19, 2000 at 02:22:53 I was diagnosed with a pituitary microadenoma in 1994 -- had prolactin level of 75, went on Parlodel, felt horrible, and have been off it for about four years. I've been on birth control pills since then (many different kinds, most recently Mircette) which controls lactation if I never miss any. Have moved a lot and have no endo at the moment. Found out today my prolactin is back up to 45 and may have to go back on Parlodel, will get an MRI next week (tumor has never shown up on MRI before but I had symptoms so I was treated). I do NOT want to go back on Parlodel again. When I was on it, my hair was falling out but I was growing facial hair, I was irritable and completely exhausted. I am working the midnight shift and probably can't handle that with this medication. I don't know anything about Dostinex. Am very concerned but will get a second opinion with an endo before doing anything. If anyone works odd hours and is on either med, please email me and tell me of your experiences! I want to get off the shift but need the better income for now (at least until June). Thanks! Barbara L <scorp200_AT_aol_DOT_.com> NJ - Friday, August 18, 2000 at 20:38:53 I am an individual like so many others out there that has a pituitary tumor. If you know where I can get additional information regarding my condition, please respond. I am constantly going to doctors and no one person wants to diagnose my condition any further than Pituitary Adenoma. I am ill often and have been suffering from Migraines for several years. I am looking for any help that I can find. Thank you. Susan Schulz <Smschulz_AT_hotmail_DOT_.com> Heathrow, FL - Friday, August 18, 2000 at 16:53:38 On November 1999, I have 2 transphenoidals to get rid of a Non Functional Macroadenoma. Evrything got complicated and a lost my Pituitary. Since then I have had hormonal replacement. I also have to take Inderalici to prevent some terrible headaches. But what really worry´s me is that shortly after the headaches dissapear I began to have a strange sensation all over my head: VIBRATIONS that start on my forehead and go all aver my head. They usually began in the afternoon and don´t stop but only when I go to sleep. Is there anyone with head vibrations that can share something with me, or any doctor that can give my doctors and me an explanation to these rare symptom? Thank you. Marta <entec_AT_acnet_DOT_.net> Aguascalientes, Ags. - Wednesday, August 16, 2000 at 20:54:16 i just came back from dr.s they say ...i have idiopathic hyperlactimia....anybody know more??? they put me on dostinex.... paula - Wednesday, August 16, 2000 at 15:37:24 Thank for information pages.How uncommon is diabetes insipidus? I have suffered this condition for five years my age is 64yrs Audrey C Thrussell <clarwill_AT_chariot_DOT_.net.au> Adelaide, SA - Wednesday, August 16, 2000 at 07:19:11 I have been recently dx with rafee cleft cist. Decision to be made so confused. Donna Yearwood <bajangirly_AT_aol_DOT_.com> Brooklyn, NY - Tuesday, August 15, 2000 at 23:15:51 sorry i was just trying to say things better....... Paula - Tuesday, August 15, 2000 at 17:49:27 I've been diagnosed with hypopituitarism just recently. An MRI showed an empty sella which then led me on a long search to find someone who knew anything about it. Was finally diagnosed a couple of months ago. Would be glad to share any info I can with those who also are hypopit. Kathryn Featherston <fxston_AT_mindspring_DOT_.com> Roanoke, VA - Tuesday, August 15, 2000 at 14:19:12 Paula, I understood your question the first time. It isn't that easy to answer. Every patient is different. There are patients that live to 80's and some only to 30's. The important thing is to have your disease under control the best you can. What type of pituitary tumor do you have? . - Tuesday, August 15, 2000 at 11:04:22 SORRY..I CAN'T SEEM TO EVEN SPELL OR SAY THINGS RIGHT.... HOW LONG OF A LIFE CAN WE EXPECT TO LIVE WITH AN MACRO.... DOES OUR LIFESPAN DECREASE BECAUSE OF HAVING THIS PROBLEM???? Paula Chandler <sassy32_AT_sunlink_DOT_.net> shamokin , pa - Tuesday, August 15, 2000 at 06:34:08 Lifespan...mortality can depend on many aspects. Patients disease control. Type of tumor.....hormonal control...are all hormones at proper levels. Regular family genetics. Learn what needs to be done for proper follow-up care and make sure you are montiored properly ...you should live a long and hopefully happy life. . - Monday, August 14, 2000 at 23:18:15 DOES ANYONE KNOW HOW LONG OF A LIFESPAN WILL CAN EXPECT TO LIVE????? Paula Chandler <sassy32_AT_sunlink_DOT_.net> shamokin , pa - Monday, August 14, 2000 at 22:55:45 After marriage, I went off the birth control pill to try to have a baby. After no periods after and the Dr.'s telling me that this was normal and to just keep waiting, the periods would come, I went to another Dr. who did an MRI and found a microadanoma. This was 23 years ago. I was put on a high dosage of Parlodel. The Parlodel hasn't upset me too much and I am on approx.7.5 mg. per day and have been for quite a while. This dosage still doesn't bring on a period so I have not menstruated for the past 8 years. At my age, I'm a little concerned why not but they don't put me on a higher dosage so I just go with out the periods. My bones are feeling a bit achy lately and I'm getting a bit concerned about Osteo so just requested a free kit for test. I'm at an age where they may need to put me on some type of hormones. My concern is the lenght of time I've been on the Parlodel. Does anyone have any comments? Best to you all and good luck with your situations. Claire Bunnell <strawbunnies_AT_juno_DOT_.com> Calabasas, CA - Monday, August 14, 2000 at 18:45:58 My daughter has dizzy spells and numbness in her left leg. They have yet to diagnose the problem but a brain scan did show a non malignant tumor in her pitutary gland. How can an MRI determine if it is malignant or non malignant? Can dizzy spells relate to problems with this gland? Richard <rherman2000_AT_msn_DOT_.com> Chicago, IL - Sunday, August 13, 2000 at 22:12:42 I am 29. Recently diagnosed with incidental pituitary prolactinoma. (macroadenoma) It was a miracle they found it! I wont go into it here, if you want to know, write me. My symptoms/problems were as follows: 1)severe depression since 1990 2)insomnia 3)Lucid dreams, nightmares, dreams couldn't wake easily from. Dreams with involved story lines (strange I know) 4)Adult acne, starting at age 13 to age 29. Finally controled with Clarison T. 5)Irritability, mood swings you wouldn't believe. 6)Fits of rage and anger. (destoyed 1 computer and monitor) 7)Suicidal thoughts. 8)Irregular heart beat. 9)Sensitivity to cold. 10)Headaches especially in the heat. Please note: I can't tell you if All these symptoms are because of the pituitary adenoma, but they are things I have suffered. I am sharing these experiences to see if others have had them. Well, I just started the Cabergoline 1.5 days ago. (no side affects yet) My prolactin level was circa 1238. Testosterone (spelling) is 1/2 normal. Doc says that should return once Prolactin levels are brought down. My tumor is 1.9 x 2.2cm, I can tell you I was scared sh*tless when I was told: "tumor", "head", "abnormal", "surgery" within the same sentence...my doctors are excellent though, I have nothing but respect for them. They say I am lucky as far as it being treatable with meds. My heart goes out to those who are dealing with this, and similar issues. You are in my prayers. I have learned the prognosis for some is more challenging. I am hoping to continue cabergoline, though it is EXPENSIVE. Does anyone have any idea how to get around the COST! Currently I am unemployed and HAVE health insurance. Which I will lose if I find work. (Stupid huh?) I am willing to travel abroad. Is this going to make it hard to get medical insurance in the future? Thanks in advance for your help. EJ EJ <eagleblind_AT_yahoo_DOT_.com> Springfield, MA - Sunday, August 13, 2000 at 05:52:34 Hi all. I just had to thank those who emailed me a while ago. I wrote in on July 9. I have since seen an Endo. He seems nice. He wants me back on Birth Control. He says that I need Estrogin and that I need to stay on. I have not started back on the BC pills and that was a month ago. Kind of afraid to do it. Oh well. We will have to see what my blood test results will be this week. Wish the best for everyone. Talk soon. =0) Kiley Godfrey <kiwilly24_AT_hotmail_DOT_.com> Logan, UT - Sunday, August 13, 2000 at 01:40:26 I have been Dx. with Acromegly Barbara Jean O'Riley <o-rileybarbara_AT_hotmail_DOT_.com> charlotte, tx - Saturday, August 12, 2000 at 16:07:50 Hi! Haven't posted in a while...here's what's happened. My son had a 1.9 cm adenoma along with a Rathke's Cleft Cyst removed in Houston on June 28th. The surgery went really well, but not without complications. The cyst had penetrated the myelin, (covering of the spinal cord) so they had to puncture that to remove everything. He needed a lumbar drain for the spinal leak. He also had diabetes insipidus, but after 2 doses of DDVAP it corrected itself. He spent 6 days in ICU and 2 in a room before coming home. He seemed to do very well for a few dayas, yet on day 4 complained of nausea and a bad headache. I gave him Phenergan and Fioricet, but by the next morning he was too nauseated to move and was in so much pain he couldn't move his legs or raise his head. We called an ambulance, and at the hospital here in Tyler they discovered a spinal leak and transported him back to Houston. They found his sodium levels had dropped to near 100, seems his diabetes insipidus had not only corrected itself, but gone in the opposite direction! He almost went into a coma and he landed back in ICU for 4 days, and in a room for another 3 until his sodium levels came back up. They were able to do a bloodpatch to reapir his spinal cord. Apparently this condition is known as acute adrenal innsuffiency. I had never heard about it and cannot find any info on it. My son is doing very well, he has missed 9 months of school and is starting back on Monday, no headcaches, no moodswings, just the really great kid I knew before he got sick. Does anyone have any info on adrenal insuffiency? We are so worried it will happen again, and it is very frighteneing because they get so sick so very quickly? I would love to hear from anyone who has information or a link about this! The surgeon is great, but still treats me simply as an overly worried mom!!!! Good luck and God Bless to all, thhis stuff "ain't" easy! Ruth <Maxhappens_AT_aol_DOT_.com> Tyler, TX - Saturday, August 12, 2000 at 13:00:24 I have just found out I have a pituitary gland disease. (Addison's). I have never heard of this disease until a couple weeks ago. I have started taking hydrocortisone 3 days ago. Has anyone else been where I'm at. I would really like to hear from anyone who may have gone through what I'm going through. cheryl inks <cinks_AT_hotmail_DOT_.com> columbia, ca - Friday, August 11, 2000 at 19:50:58 I just found out that I also have a prolactinoma. I am glad to find a place to compare notes. I have many of the symptoms that others describe (in addition to amenorrhea and milk production): headaches, depression and anxiety, hot and flushed skin, inability to deal with stress, lack of concentration and extreme fatigue. I wonder why the medical literature doesn't address these other symptoms. Does anyone know any literature that does? Debby <deb_welsh_AT_hotmail_DOT_.com> Duvall, WA - Friday, August 11, 2000 at 17:17:52 I haven't made an entry to this guest book for quite some time, since I've been very busy with my now 2-year old daughter. For those of you considering pregnancy, mine went very well, even though I discontinued my Parlodel during the pregnancy and nursing. I was diagnosed with prolactinoma 12 years ago. My symptoms were late onset of puberty, infrequent, irregular periods, very severe migraine headaches, lactation and a prolactin level of 99. I began with 5 mgs. Parlodel a day and after about a year have remained on 2.5mg per day. My recent MRI still shows a 3mm microadenoma in the Pituitary, so I coninue with my Bromocriptine. My question is for anyone who had also been on this drug for a long time. Have you noticed any long-term side effects? I know the medical experts say that long-term studies do not yet exist because the drug has not been on the market very long. I guess that makes us the case studies. I'm just curious to know if anyone else out there is having success and normal life on Parlodel. I'm 12 years and counting and am hoping that there is nothing down the road to worry about. I struggle with weight gain and some mood swings, but nothing more severe than that (though the weight is getting worse as I get older). Thanks for any feedback! Roxy Roxy <roxy_AT_mnopera.orf> Minneapolis, MN - Friday, August 11, 2000 at 12:57:02 hi. im a 32 year old mother of 4...i am scared of this pitutary problem.....i need 2 talk to people..... my prolactin level is 118. i have gain about 30 pounds...tired,no sex drive,moody, someone talk to me... my dr tells me i will have to start dosdenex...what r side effects????? Paula Chandler <sassy32_AT_sunlink_DOT_.net> shamokin, pa - Friday, August 11, 2000 at 04:57:54 how common is it? anna <anna_sg_999hotmail_DOT_.com> melbourne, vic - Tuesday, August 8, 2000 at 08:47:50 I had surgery to remove my P.T. and sinus poloyps in '97. I am on dostinex 2x's a wk. My symptoms are back as I was told that the tumor could come back. I see my nero.surg. this month. I experience very slow mornings, loss of concentration and memory loss. Forgetfulness and depression. I have also gained aprox. 10 lbs. I have a constant pain in the back of my head that runs down my neck. I am so use to feeling like this that it seems normal until my family wants to send me off. Do these symptoms sound familiar to you? Blessings, Cindy Cindy <bindyacender_AT_hotmail_DOT_.com> Valdosta, Ga. - Tuesday, August 8, 2000 at 02:10:40 I suffered with a prolactinoma for 10 years, and finally had it removed in 1992. I must have been an exceptional case, due to the fact that I have had no problems since, nor have I had to have medication. By the way, I gave birth to a beautiful baby girl in 1996, when I was 42 yrs. old. I believe one of the best endocrinologists to be Dr. Arafah at University Hospital in Cleveland, OH. DIANE S. <TESSIE_AT_TUSCO_DOT_.net> SHERRODSVILLE, OH - Monday, August 7, 2000 at 14:25:22 I posted yesterday on this site a question if norprolac is available in the USA. I have got a number of e-mails, but nobody could answer my question. Since I found on another web site an answer for this question, which is on the negative, I wanted to share it with others. Now my question is if this is still valid, and if there are some tests performed in the USA directed towards introducing this aparently powerful medicine to the US market? Robert Owczarek <hanna_AT_sulphurcanyon_DOT_.com> Jemez Springs, NM - Monday, August 7, 2000 at 00:05:09 Hi, I have a 9mm prolactinoma, stared dostinex 7 weeks ago, and have experienced weight gain. I was wondering if anyone on dostinex experienced weight gain, because it is quite unusual, but that is possible? Please answer. Best wishes, Liliane hulihu_AT_zaz_DOT_.com.br Liliane <hulihu_AT_zaz_DOT_.com.br> - Sunday, August 6, 2000 at 21:59:04 I was diagnosed with a pituitary tumor when I was 16 yrs. old after never starting my period. My doctor put me on several medications for two years to try and get my prolactrin level to fall. This did not work, the medicine always made me sick. The summer before I left for college I had surgery to remove the tumor. It was the best decision I have ever made. I feel wonderful! Sareca Morgan <sareca_AT_tamu.edu> College Station, TX - Sunday, August 6, 2000 at 00:59:26 Does anybody know if norprolac is available in the USA? Have anybody experienced some side effects? Is it effective with fighting prolactinoma? Robert Owczarek <hanna_AT_sulphurcanyon_DOT_.com> Jemez Springs, NM - Saturday, August 5, 2000 at 17:17:38 Great page, shame no one seems to have used it since 1997!!!! Sarah Martin <daddyminer_AT_hotmail_DOT_.com> Aylesbury, Bucks - Saturday, August 5, 2000 at 07:14:48 Hi, I am 28 and have microadenoma (8mm x 6 mm x 8 mm). I used Parlodel for 8 months, but things went worse. 4 months ago I started to use Dostinex ((1/2 x 3) per week) and things go not so bad. My prolaktin level is now around 25 (Ref: 3,5 - 29,5) I wonder 3 things and need some advice. 1) Does anybody have children during medication? Dostinex and pregnancy, is it safe? I can't seem to get a definite answer on this. 2) Does anybody suffered breast cancer related with hyperprolaktinoma? 3) Does anybody have lack of concentration, weakness of memory, and become pessimistic after being suffered? I will very much be happy if anyone can write to me. Thanx a lot, and God bless you all. (Sorry for my English, I am from Turkey) Badegul <badegul.a_AT_turk_DOT_.net> Istanbul, - Friday, August 4, 2000 at 11:00:55 had gammaknife treatment for my tumor gina <cheltianna_AT_aol_DOT_.com> lahaina, hi - Friday, August 4, 2000 at 01:23:15 none carol steele - Thursday, August 3, 2000 at 21:54:50 I am looking for info on Dostinex and pregnancy. Is it safe? I can't seem to get a definite answer on this. Thanks! Libbi <ljaillet_AT_austin.rr_DOT_.com> TX - Thursday, August 3, 2000 at 18:07:52 My daughter has a pit tumor and has just experienced a "bleed" or apoplexy? Can anyone give me any insight into what we have to deal with here? Maybe someone knows of a good site to get information. She is clear across the country and keeping up on this long distance is difficult. Thanks Julie Groves <crtminc_AT_harborside_DOT_.com> Myrtle Point, OR - Wednesday, August 2, 2000 at 12:30:53 looking for info on pituitary cyst shelia gullekson <mommashelia_AT_hotmail_DOT_.com> manton, miloo - Tuesday, August 1, 2000 at 17:16:00 Dear Blanche, Fatty mass in the sella? sounds like a tumor,adenoma to me,but what do I know? Did they test all you pituitary hormones to make sure you have nothing deficient or in excess? warm wishes sue - Tuesday, August 1, 2000 at 14:44:01 Thank you for all the information you so freely give. I helps me to under stand what is going in in my life. Bobby L. Smtih - Tuesday, August 1, 2000 at 13:47:40 Five years ago, I was diagnosed with a fatty mass in the sella turcica. That has spontanitously disappeared and they now have found a cyst on the pineal gland. Has any one had this same experience. I am also being treated for Hashimotos. Any comments will be appreciated. Blanche Carper <bhc108_AT_swbell_DOT_.net> Houston, TX - Tuesday, August 1, 2000 at 13:40:48 Has any of you guys / gals had any kind of lump in the cerebellum Bill Heatherington <bill_AT_willnme.freeserve.co.uk> Consett, Co. Durham, - Sunday, July 30, 2000 at 20:19:04 I've been on Dostinex now for about four months and have noticed no side effects except for the following: I seem to have lost all sense of pride when accomplishing any sized task. I know it sounds strange, but prior to taking the drug, I would always feel good about getting something done, whether it was something big like painting all of the walls in my house or something little like brushing my teeth before bedtime. I know I'm not depressed (although I am concerned about my medical condition). Has anyone else out there felt the same way? Thanks for your time! Jeff <pikakard_AT_scc_DOT_.net> Twin Cities, MN - Sunday, July 30, 2000 at 13:18:23 I was just wandering if anyone knew if the pituitary gland causes seizures? I know I wasn't suppose to ask medical questions but I could'nt find the info on the net. brandi <kain_AT_bullitt_DOT_.net> louisville, ky - Saturday, July 29, 2000 at 21:41:24 Hello, Im a living lab rat, I met requirements for a Human groth hormone study. Upon returning from vacation I recieved a letter adviseing me that I have a small tumor Approx 2mm in size. I will be doing further testing to find out the whos why's and when's in addition I was diagnosed as being Bipolar and OCD. If I can help or you can help me e-mail me _AT_onebigcat64_AT_juno _DOT_.com Tim Washburn <onebigcat64_AT_juno_DOT_.com> Atlanta, Ga - Saturday, July 29, 2000 at 20:45:31 This is my 2nd visit to the website. Still getting used to the idea of having a 4 mm pituitary tumour. I feel dreadful and the doctor can't put me on any medication because of nerve problems. I just hope it isn't growing, I also have an underactive thyroid problem. I just wish I could feel better and putting on weight is a problem with me as well. Lois Lehmann <llehman_AT_powerup_DOT_.com.au> booval, - Friday, July 28, 2000 at 01:43:03 i would like to talk to someone about my possible condition . my prolactin level is 38 a second test was done but the results are not back yet. i am experiencing fatigue no periods for 6 months vision problems pertaining to my right eye no sex drive depression inatentiveness etc. if you can help me understand whats going on with me please contact me . i am 36 and female. diane <pdipersio_AT_ns.sympatico.ca> north sydney, - Friday, July 28, 2000 at 00:14:43 Who started this operation in U.S. ? Isaac S Davie <jdavis_AT_usmo_DOT_.com> St. Clair, MO - Thursday, July 27, 2000 at 15:04:24 I was looking for information on pituatary gland tumors, I had a MRI of the pituatary gland and a suspected tumor. Linda Fahrenkamp <fahrenkampfamily_AT_hotmail_DOT_.com> New Prague , MN - Wednesday, July 26, 2000 at 07:50:06 Hello Everyone- it's been awhile since I've posted here, and I desperately need some advice. On 12/1/99 I had a Non-functioning Pit Macroadenoma removed via the transphenoidal route. While recovery was slow, I recently have only been experiencing mild symptoms. Until Fri! On fri I had a severe, sudden-onset headache, nausea, dizziness and blurred vision. I was immediatley sent for an MRI. ( I work in a Dr.'s office) The Mri ended at the end of the work day, but a Dr. and the Radiologist looked at the films immediately. I was informed Fri at 5:20, quite casually, that I had empty sella, and that "it would take awhile for my Pituitary to grow back". I was then sent on my way, and of course I was in such a state of shock that I neglected to ask any questions. Today I saw my regular Dr. and he said that I had to have a Pituitary or that I would be dead. While this reasurred me some, I am still concerned. I am awaiting the Radiologists full reading and report. Has anyone experienced this? I could really use some advice. My regular Dr. said I did not need any other follow up and that my headache was probably just a Migraine. I used to have migraines quite frequently due to the tumor, but havn't had any in months! Not to mention this was quite different to my usual migraines. Any advice would be greatly appreciated. Deb Deb Iverson <debkurtiver_AT_go_DOT_.com> Tomahawk, Wi - Monday, July 24, 2000 at 14:05:36 Hi, I just found this sight I was finally diagnosed with Cushing's Disease after many years of suffering. I had surgery which proved unsuccessful and have just undergone 5 weeks of radiation. I would like to hear from anyone who has undergone the same and would like to know how long it took before you noticed any improvement. Julie <julieroland_AT_ripnet_DOT_.com> Brockville, On - Sunday, July 23, 2000 at 18:37:44 Hi, I just found this sight, I too suffer from Cushing's Disease and I believe I have suffered with it for about 7 years with it being missed and misdiagnosed in 1993 I had surgery for this in 1999 which was unsuccessful and have recently undergone 5 weeks of radiation. Would like to communicate with others who have undergone same it is nice to know there is a support group out there. Juliet Lugthart <julieroland_AT_ripnet_DOT_.com> Brockville, - Sunday, July 23, 2000 at 16:18:57 Hi, I'm a 31-year old woman. I'm scheduled for surgery september 6, 2000. I have a 1.5 mm nonfunctioning adenoma pressing against my optic nerve. At this moment I'm taking Parlodel(3 x 2.5 mg)to keep my prolactine levels normal (it was 70) and so I 'm having normal periods again. The prolactin level is high due to a so called 'stalk effect' The adenoma presses on the pituitary stalk, thus producing more prolactin.I'm not experiencing any side-effects from Parlodel (except a bit of a stuffy nose) I'm worried about possible weightgain which may come from the medication before and after the operation. Does anybody know how I can prevent this? Is there any food that I need to avoid. I'm excercising 2x a week, and go to my work by bike. I quit smoking three years ago and gained 10 kilo's, but my weight has been the same for the last 2 years. Any info is welcome.....Thanks, bless you all and good luck. Vicky <pinokkio_AT_chello.nl> Apeldoorn, - Sunday, July 23, 2000 at 07:32:08 I am recently diagnosed with Pituitary Macroadenoma. I found a lot valuable infromation related to my dicease. John Lam <johnl_AT_vertex-networks_DOT_.com> Irvine, CA - Friday, July 21, 2000 at 21:52:13 I have bruises on my legs and am following some links I found in a posting forum to here. Alexei Kulberg <akulberg_AT_home_DOT_.com> Fairfax, CA - Friday, July 21, 2000 at 02:17:13 I have just found out that I have a micro adenoma and am waiting to see my endo, but I wondered if anyone with this condition suffers with major hot flashes??? I do and it is so extreme, I perspire so much it is pathetic. Please email me if you happen to have this symptom, I have not read of any one on the message board with this symptom. Thanks Barb Barb J. <barbiejj_AT_ivillage_DOT_.com> Kingsston , Ont - Friday, July 21, 2000 at 00:44:57 Just wanted to mention another great resource--Pituitary Tumor Network Association at www.pituitary_DOT_.com. Also, I've seen some other messages similar but if anyone has any info on Dostinex and pregnancy please e-mail me. My support to all... Morisa <morisascot_AT_aol_DOT_.com> Paoli, PA - Thursday, July 20, 2000 at 23:50:02 hello just asked for people to please e-mail me I am sorry but put in wrong e-mail address! Sorry please send to mookey6_AT_htomail_DOT_.com jennifer <mookey6_AT_hotmail_DOT_.com> - Thursday, July 20, 2000 at 22:00:31 Hi! I have just recently been diagnosed with a micro adenoma. My prolactin levels were high and came down a little after being on Parlodel. Now they took me off due to bad reactions. Now I was wondering what will happen? any information please contact me. Thank you I am in desperate need!!! jennifer <mookey_AT_hotmail_DOT_.com> - Thursday, July 20, 2000 at 21:50:32 Hi everyone, I just came from my endocrinologist. My prolactin level is down to 14 from 156. I've been on Dostinex for a year this time. My MRI showed the tumor has shrunk to not even showing up . It was 5x7x10 mm a year ago. So I am happy. My endo did warn me to STAY on the Dostinex, because if I quit taking it, the tumor would grow faster and larger than before. Good luck to all! Linda <enonoh_AT_aol_DOT_.com> Enon, OH - Thursday, July 20, 2000 at 15:09:53 Please take me off the guestbook! I did not think it was going to be posted to the public!!!!! DeeDee deedee <> scottsdale, az - Tuesday, July 18, 2000 at 21:34:03 HI EVERYONE!!! I'M HAPPY TO HEAR THAT I'M NOT THE ONLY ONE WITH THIS PROBLEM, I'M 29 YEARS OLD, I'M MEXICAN, SO I'LL PROBABLY WILL HAVE SOME GRAMMAR PROBLEMS SORRY!!! WELL, I WAS VERY SICK LAST YEAR, DIDN'T HAVE ENERGY AT ALL, NO APETITE, HEADACHE ALL THE TIME, AND MENSTRUAL PROBLEMS - WENT TO THE DOCTOR AND TOLD ME THAT I HAD A TUMOR CALL PROLACTINOMA, I WAS SO SAD AND CONFUSE!!! I STARTED MY MEDICATION WITH PARLODEL "BOMOCRIPTINA", I'M TAKING 3 A DAY AND I FELL A LITTLE TIRED AND SLEEPY, DO YOU GUYS THINK THAT THIS IS BECAUSE OF THE PARLODEL??? BUT, I FEEL FINE I'M VERY WORRY AND SAD, BECAUSE I'M GOING TO GET MARRIED IN AUGUST, AND I WANT A BABY SO BAD, AND MY DOCTOR SAID THAT IT WILL BE VERY DIFFICULT FOR ME TO GET PREGNANT, MY LEVEL IS LIKE 41.05 AND HE WANT'S ME TO GO DOWN TO 20 OR LESS!!! HE ALSO SAID THAT IF IT DOESN'T GO DOWN HE WILL CHANGE MY MEDICATION BUT I'M SO SCARE BECAUSE THE OTHER ONE IS STRONGER!!!! AND I DON'T KNOW HOW I'LL FEEL???!!! SOMETIMES I JUST WANT TO DIE, BECAUSE IF I CAN'T HAVE A BABY I'M NOT INTERESTED IN ANYTHING!!! PLEASE ANSWER ME AND GIVE ME SOME ADVISES I CAN'T NEVER TALK TO ANYONE ABOUT THIS, BECAUSE NOONE FELL'S WHAT I FEEL... TAKE CARE, AND GOD BLESS YOU ALL NELLY Nelly Ramírez <nyjj1426_AT_yahoo_DOT_.com> San Luis Potosí, S.L.P. - Tuesday, July 18, 2000 at 18:12:38 Hi this is Michelle just browsing site I am 23 and have been diagnosed with Microadenoma of the pituitary gland Michelle Hinson - Tuesday, July 18, 2000 at 13:38:38 Hi there ~ Just wanted to give a brief update to an entry that I had placed on 6/18/00. I was diagnosised with a macroadenoma just over a month ago. At that time my prolactin level was at 418.7 (the norm I was told was between 1.4 and 24.2). The endocronologist that I had seen prescribed .5mg of Dostinex 2x per week. In the past month and a half I have experienced all of the side effects of the medication (dizziness, headaches, stuffy nose, nausea and extreme tiredness). I have been told that the side effects will lessen in time as I become more accustomed to the Dostinex. A week ago I went in to have my levels checked...it is now at 0.6. I still can't believe that it has dropped that much and in such a short period of time! At this point in life it doesn't look like I will have to have surgery :) The doctors are confident that the medication will keep my levels within a normal range, unfortunately, this means that I will be on Dostinex for an indefinite period of time:( I have seen a neurosurgeon, and an eye doctor and all is well! Thank you to everyone who assisted me with a list of questions that I could ask the neurosurgeon and eye doctor. I felt confident and well prepared (as prepared as anyone could be for these types of appointments). This guestbook has been a great source of information and support! This has truly been A LIFE EXPERIENCE ! Best of Luck to all of you... hang in there. Kris <IMALRT2_AT_aol_DOT_.com> WI - Monday, July 17, 2000 at 19:13:56 I have a prolactanoma and have had surgery 4 years ago, through my palate. I am currently suffering from very bad migraine headaches. Does anyone have any solutions?????? Angie van Greuning <oneway_AT_softswitch.co.za> Cape Town, - Monday, July 17, 2000 at 19:08:00 I would like to know what effects the removal of the Pituitary gland and have there been cases where medication can be used instead of operating. Could the growht have affected my moods etc. ANy information would be helpful Kind Regards Andrea Petrucci <Apetrucci_AT_investec.co.za> Durban, Natal - Monday, July 17, 2000 at 03:33:49 Six months ago,after having been hospitalized for stroke like symptoms that lingered for weeks my doctor sent me for an MRI with Contrast and it showed that my pituitary gland was enlarged. After reading some of your stories and syptoms ,I now know that I may not be suffering from a psychiatric disorder after all. Recently I have returned to my doctor complaining about my hair falling out at an alarming rate and now finally she is going to do some more blood works and possibly another MRI. I want to say I am glad I found this site. I definetly need more info on this medical problem, in laymens terms. Kimberly <AuntTaz711_AT_AOL._DOT_.com> NY - Saturday, July 15, 2000 at 20:31:42 any one with acromegaly and on sandostatin I'm interested in your experiences. cleo rohde <cleoroh_AT_aol_DOT_.com> raleigh, nc - Saturday, July 15, 2000 at 09:37:59 Please add me to your guestbook. Thankyou for being and helping us sufferer's with the information you supply Bill Heatherington <bill_AT_willnme.freeserve.co.uk> Consett, Co. Durham, - Thursday, July 13, 2000 at 19:39:30 Please e mail me if you are on long term steroid(hydracortisone) use due to hypopituitarism. justin james <justin.jes_AT_ic24_DOT_.net> essex, - Thursday, July 13, 2000 at 14:23:44 I was wondering if some one could suggest some superstar surgeons in the transphenoidal feild.You know the ones that are gifted and have a done a lot of pituatry surgeries.Any help will be colossally valued.Is there a publication that might rate surgeons?How does one find the best surgeons for pituatary macroadenomas.Thanks again for any ideas on this search. I Mullick <imullick_AT_pacbell_DOT_.net> San Francisco, CA - Thursday, July 13, 2000 at 00:44:35 Searching for info on behalf of a friend - i.e. causes, genetic, diet, chemical additives, stress etc etc debbie martin <panthera_AT_iafrica_DOT_.com> - Wednesday, July 12, 2000 at 12:32:57 Newly diagnosed with P.T. It is a very small microadenoma, but I'm certain I have had symptoms for years. Glad to find others with similar experience. Keepin' the faith! Patti Pomeroy <pjp1111_AT_extremezone_DOT_.com> Tempe, AZ - Wednesday, July 12, 2000 at 01:56:30 Thank you for all the remarks and helpful info everyone writes on this web site. I have a pit. adenoma, which they though was micro, now they tell me its actually macro. I am 26 and only found this out last year, after not feeling great since I had my daughter 4 years ago. My consultant has given me the OK for trying to concieve, but he will need to monitor me very closely through out. I am taking Dostinex Cabergoline 0.5 mg every 4 days. If I become pregnant I can come off the tablets, but if there is a problem I will need to go back on them after the birth. This worries me as I want to breastfeed, and also I do not want to be on tablets for the rest of my life. I am very woried about the fact that my consultant, who is a professor, does not seem to know a great deal about this. Every time I ask a question like, did my pregnacy cause the adenoma, as I did not have any symptoms since then? "We don't know" is the reply. I would really appreciate any advice or possibilities about the whole subject, as I felt in the dark, until I discovered this web site. I am also interested in any alternatives to tablets, and or, diet changes. I have heard that dairy produce has been linked to pituitory as well as breast tumors. Please write if you can, thanks, Adele. Adele Shaw <adele-tony_AT_lineone_DOT_.net> Cheshire, - Tuesday, July 11, 2000 at 19:04:33 I have just been diagnosed with a tumour but the Doctor didn't put me on any tablets. He just said he would keep an eye on it. A man I have liked for 2 1/2 years keeps giving me a biff. Lois Lehmann <llehmann.powerup_DOT_.com.au> Booval, - Tuesday, July 11, 2000 at 17:20:15 HELLO I WAS DIAGNOISED WITH PROLACTINOMA THIS PAST CHRISTMAS. THIS HAS BEEN A TWO-EDGED SWORD. I AM FINALLY GLAD THAT I HAVE A NAME FOR WHAT HAS BEEN BOTHERING ME FOR THE PAST 16-17 YEARS. I WAS TOLD IT'S NOTHING TO BEING DIAGNOISE WITH EPELISPY. I DO HAVE AN INVOLUNTARY NECK MOVEMENT AND I HAVE HAD HEADACHES, I WAS GIVEN DILANTIN UNTIL IT PROVED TO DAMAGE MY LIVER, I HAVE BENN GIVEN PARODEL AND NOW I TAKE ALLEGRA AND DEPRESSION MEDICINE IT IS WONDERFUL TO KNOW THAT THERE ARE OTHERS THAT UNDERSTAND THE PAIN AND FRUSTRATION I AM EXEPERICING. BECAUSE I WENT UN-DIAGNOISED FOR SEVERAL YEARS I THOUGHT I WAS IMAGINING THINGS UNTIL I BEGAN TO HAVE SEZUIRE TYPE EPISODES AND FORGETFULNESS.I AM INTERESTED IN ANY RESEARCH STUDIES THERE MAYBE FOR THIS I AM 37 FEMALE. PLEASE EMAIL ME IF ANYONE CAN GIVE ME MORE INFORMATION.(JTUME_AT_AOL_DOT_.com) PS. ARE THER ANY SUPPORT GROUPS I DON'T FEEL MY DR. UNDERSTANDS TOO MUCH ABOUT THIS . I HAVE BEEN TOLD THEY WOULD KEEP CHECKING MY PROLACTIN LEVELS WHICH HAVE BEEN ELEVATED FOR OVER 7 YEARS, UN DIAGNOISED OR MEDICATED FOR THE WRONG THING. AND EMOTIONALLY WHERE DO YOU GO FOR A DISCEASE YOU HAVN'TEVEN HEARD OF? SOMETIMES THE DEPRESSION HAS BEEN UNBEARABLE, I CONTEMPLATE THE WRONG THINGS AND HAVE TERRIBLE MOOD SWINGS. j.patterson <jtume_AT_aol_DOT_.com> det, mi - Tuesday, July 11, 2000 at 14:41:45 cassie, Pretty simple to tell. What is his sperm count and motility like? Best of luck sue - Tuesday, July 11, 2000 at 09:39:36 I just posted a message about my prolactinoma web page and this paragraph is an experiment to see if I can embed a hyperlink in the message text. If it works as intended the words "Treatment of Prolactinomas" should be underlined and if they are you should be able to click here Treatment of Prolactinomas to visit my page at http://www.rose_DOT_.com/~chrisa/prolact.html Just an afterthought Chris Christopher Anthistle <chrisa_AT_user.rose_DOT_.com> Greater Toronto Area, Ontario - Tuesday, July 11, 2000 at 06:53:43 I am not a doctor, and have no medical training, but somebody close to me, a family member, has a prolactinoma and polycystic ovaries so I developed an interest in finding and reading medical research on the subject. I have created an extensive web site titled "Treatment of Prolactinomas" which is at http://www.rose_DOT_.com/~chrisa/prolact.html My web site has been available since 2nd. December 1998 and has just (July 2000) undergone extensive updating. My site provides easy access to published medical research findings about a type of pituitary tumor which produces an excess of the hormone prolactin. This tumor is known as a prolactinoma, it is very very rarely malignant and can usually be controlled by medication. My emphasis is on treatment options rather than patients sharing experiences, though I recognise both are important and I think this Guest Book is the best message board I have seen on the topic. My web site will be of interest to prolactinoma patients, their families and doctors, and to medical students. Patients and families often have difficulty finding good prolactinoma information. In my efforts to correct that I may even have provided too much information on my site, so I apologize if you have to wade through some seemingly boring stuff to find those golden nuggets you are particularly interested in. Hope it helps ! Chris Christopher Anthistle <chrisa_AT_user.rose_DOT_.com> Greater Toronto Area, Ontario - Tuesday, July 11, 2000 at 06:40:02 my husband has pituary tumor and had surgery in 1995 and ia on dostinex.I would like to know is tere any man who has had children after being diagnosed with pituary tumor. my husband test cassie <dayna.hare _AT_ world net .att_DOT_.net> baltimore, md - Monday, July 10, 2000 at 20:04:39 after an incomplete abortion at 40 I started with my pituitart problem.Period would not come back after 6 mo. Blood test revealed to uch prolactin. Had cat scan showed nothing. Had mri , showed nothing. Been on parlodel for 10 years now. When I go off for a month my level shoots from 20 to 60.So it is growing whenI don't take it. I believe the incomplete abortion caused my problems. Would like to know if I could have lasor or something else down where they don't have to cut.I have allergies that trigger the migraines. This condition has disabled me where I am not able to hold on to a job. I am staying in a very dangerous marriage just for this reason .Is it hard to get disability for this condition and if not please contact me and tell me how you went about it. My doctor knows of my migraines but its another thing when they have to sign there name to a disability.If anyone out there can help me out before it is to late. There is alot of physical and verbal violence . liz in youngstown ohio Liz Radowick <chrybtrfly_AT_aol_DOT_.com> oh - Monday, July 10, 2000 at 15:27:26 Hello everyone! Now it´s almost a year since my op and I feel great. I would like to get in touch with someone that has Diabetes Insipidus. If you have DI, i would like to share my experiance with you and get answers to my questions. My endo doesn´t have much info about DI and it´s difficult to have no one to talk to about DI. Best wishes, Eva Eva <evag_AT_sks.is> Reykjavik, - Monday, July 10, 2000 at 10:57:26 It was good to find your guest book. I have a friend who was operated on for a tumor on the pituitary 9 years ago. She has had bad headaches ever since and there does not seem to be any help for her. Part of the problem is that ridges of muscles, from the front to back of her head, become enlarged at times and add to her pain. Her left eye often weeps with the pain. Does anyone else have these problems? Has anyone found relief? Judith Curtis <jcurtis_AT_pcpro_DOT_.net.au> Broken Hill , - Monday, July 10, 2000 at 09:16:49 Hi! My name is Kiley and I was diagnosed in Feb. 1997 with a very large prolactinoma pituitary tumor. I went in at 16 to find out why I was not having periods and why I had headaches. The doctor put me on birth control. I took it for 4 months and gained tons of wieght and went off of it. I started lactating and the dortor told my that it was normal and not to worry. I still had no periods after stopping the birth control. The doctor told me that if asprin took my headaches away then there was nothing to worry about. 5 years later I lost sight in my left eye. Worried I went to the eye doctor and was told it was Glaucoma. I went to specialists and they sent me to an MRI. A week later I was in for emergency surgery. They found that the tumor hemorrheged inside of itself and if it did again I would die. My prolactine level was almost 10,000 before surgery. The tumor was the size of a small lime. It was wrapped around my right corraded artery and the nerves to my left eye, leaving me legally blind in my left eye and my right was being pushed out. It had also invaded my sinuses. The surgery turned out better than they expected. I am currently on 20 mil. a day on parlodel. I am now married and have been told that birth control was ok to take. Only in five months of taking the pill my prolactin level has tripled and the gyno still does not believe that birth control had anything to do with it. My level was stable before taking birth control. I have stopped since then. We are now planning to start our family. I would like to hear from others with this tumor and maybe learn more to help me understand this tumor. Thanks Kiley Kiley <kiwilly24_AT_hotmail_DOT_.com> Logan, Utah - Sunday, July 9, 2000 at 22:37:33 Hi my name's Ria and I am a 19 yr old female. In 10/97 I was diagnosed as having a pituatory tumor. This was recognised due to lack of periods and a random blood test being done. It was found that I had a high prolactin level. I was put on BROMOCRIPTINE to surpress growth of the tumor and reduce the prolactin level in my blood. I started to have bad headaches which were like someone sticking needles in my eyes the pain was that intense. My consoltant told a neurosurgeon about my case because he thought it was rare. I had regular Goldmans done to check my feild of vision. In 3/98 I had a field test done which showed that it had deteriorated rapidly and I was rushed to Addenbrooks Hospital because my tumor was pushing on my optic nerve and I was slowly going blind. They operated within 24hrs to remove the tumor. It was found that it was actually a cystic adenoma. Thay could only remove 90% without damaging the optic nerve. I lost my pituatory gland and I am now currently taking BROMOCRIPTINE, PREDNISOLONE and OESTROGEN. I had Radiotherapy earlier thsi year (6/00) to remove the further 10% and I am now waiting to be givin the all clear. I feel a lot better in myself than I have done for nearly 5 yrs. If anyone has been through anything like this I would be intrested in hearing from them. Ria <RTMStew_AT_bun_DOT_.com> Norwich, - Sunday, July 9, 2000 at 08:48:20 Hi my name's Ria and I am a 19 yr old female. In 10/97 I was diagnosed as having a pituatory tumor. This was recognised due to lack of periods and a random blood test being done. It was found that I had a high prolactin level. I was put on BROMOCRIPTINE to surpress growth of the tumor and reduce the prolactin level in my blood. I started to have bad headaches which were like someone sticking needles in my eyes the pain was that intense. My consoltant told a neurosurgeon about my case because eh thought it was rare. I had regular Goldmans done to check my feild of vision. In 3/98 I had a field test done which showed that it had deteriorated rapidly and I was rushed to Addenbrooks Hospital because my tumor was pushing on my optic nerve and I was slowly going blind. They operated within 24hrs to remove the tumor. It was found that it was actually a cystic adenoma. Thay could only remove 90% without damaging the optic nerve. I lost my pituatory gland and I am now currently taking BROMOCRIPTINE, PREDNISOLONE and OESTROGEN. I had Radiotherapy earlier thsi year (6/00) to remove the further 10% and I am now waiting to be givin the all clear. I feel a lot better in myself than I have done for nearly 5 yrs. If anyone has been through anything like this I would be intrested in hearing from them. Ria <RTMStew_AT_bun_DOT_.com> Norwich, - Sunday, July 9, 2000 at 08:45:31 Hi, I wrote in this guestbook about 2 months ago regarding my depression after transsphenoidal surgery (thanks to all of you who wrote back). These feelings went away for a little while, but they've returned. My sister is a manic depressive, so I feel as though I can't say anything about it to my family because they'll think it's out of pity or envy of all the attention she gets. I know this is not the case (if I wanted attention I would have opened my mouth by now). I don't know what to do. Does anyone have any suggestions other than talking to my family or doctors? Does anyone know if it's normal to be feeling down for such a long time after surgery? E.B. <djjazzyliz_AT_hotmail_DOT_.com> Dundas, ONT - Friday, July 7, 2000 at 18:18:49 Hi everyone! I have written in the past about my 15 year old son, diagnosed with a macro adenoma on January 12th. On June 28th at Methodist Hospital in Houston he underwent his surgery. Not only did he have Cushing's and the prolactinoma/adenoma, they found a Rathke's Cleft Cyst that had invaded his spinal column that didn't show up on any of the 5 MRI's. The transphenoidal surgery was tough, he went through 5 hours of it, on the way to ICU he opened his eyes and said, "mom, I can see the clock"...prior he couldn't see the clock beside his bed without glasses or contacts. Because of the Cyst, he developed a spinal leak and had to have a lumbar drain. He also developed very severe diabetes insipidus, and his sodium levels were twice the norm. The medication DDVAP corrected this after 2 doses. With all of the complications he had he was in ICU for 5 days instead of overnight, and in a room for 2. The child I have now is happy, pleasent, loving, calm, and we are so thankful for our surgeon, Dr. David Baskin. It has been such a success I would never hesitate to reccomend this to anyone, with a skilled surgeon of course. He is being slowly weaned off of Cortef, sinthetic cortisol, and hasn't had pain meds in 2 days. His bright purple striae is completely gone, and so are the headaches. God Bless all of you that have suffered with this disease for so long with no improvement. The surgery is scary, not much fun for patients or their family, but God gave us our child back, and it appears the wost is over! If you have any questions please feel free to write to me! Ruth Poirier <Maxhappens_AT_aol_DOT_.com> Tyler, TX - Friday, July 7, 2000 at 12:40:44 new patient D. Moeller <DMOEL81329> Georgetown, IN - Tuesday, July 4, 2000 at 12:33:54 My Husband has this disease Lynn Schaible <Schaible_AT_rider.edu> Hamilton Square, NJ - Monday, July 3, 2000 at 14:55:30 It's been aprox. 4yrs since being diagnosed with a pituatary tumor with prolactin levels of a pregnant woman. I'm a 43 yr old male. I've been taking Parlodel (bromocriptine) 2.5 mg in the morning and 3.75 mg at night. Tumor was originally 8mm. in size and has been brought down to about 5mm. Prolactin levels are normal now and feel much better, I don't have nausea or headaches but I feel tired a lot. Endocronologist says parlodel will have to be taken for the rest of my life. Good luck to all. Marc Walker <jmhispeed_AT_home_DOT_.com> Brantford, Ontario - Saturday, July 1, 2000 at 23:55:28 My 19 year old son has Cushings. He had excess upper body weight, fatigue, acne, loss of concentration, depression, high blood pressure and red arm pits with red stipes radiating from his arm pits and around his waist. The stipes looked like stretch marks but brighter red. He is going in for a MRI on Monday and his doctor feels sure he has a tumor on his pituitary. He'll probably end up having surgery in July. Interestingly, prior to his diagnosis, he wanted to join the Air Force. They told him to lose 20 lbs. before he could join. For the past 2 months, he has been on the Atkins diet (protiens, no carbs, no caffeine). He's lost 20 lbs, has a lot more strength, is no longer hungry all the time, has lower blood pressure, less depression and his red arm pits have gone away & the stripes have deminished. This has shocked the doctors who say that the arm pits rarely lose their redness without medicine. They have no explanation for the changes. Subsequent urine tests say that he still has Cushings but his symptoms have gone away. I don't know if this diet would help any of the other conditions mentioned (my doctor doesn't know enough about the disease to know how diet effects it). I'd be interested in knowing if anyone has tried different diets to curb the tumors. I've read that tumors love sugar which might explain why a low carbohydrate diet might slow their growth. I'm collecting data about diet and Cushings. I'd love to hear any comments. Sara Fitzgerald <AskMzFitz_AT_aol_DOT_.com> Houston, TX - Saturday, July 1, 2000 at 01:06:27 Hi, 15 days prior to my 34th Birthday I was diagnosed with a Pituitary tumor. I have been having problems for years. These last two in paticular I have been lactating. My OBGYN blew me off when one breast was twice the size of the other one. I go for a MRI July 7 if the OREGON Health plan with pick it up. As a result of my illness, my husband divorced me. Angie Noah <abcnoah_AT_earthlink_DOT_.net> Cottage Grove , Or - Friday, June 30, 2000 at 01:10:56 My husband is 31 yrs old and diagnosed with a Prolactinoma in March 2000. His prolactin level was over 800! His Dr. started him on Dostinex 0.5mg/ 3 times a week with dramatic results. His prolactin level dropped to 5 in two months. He had some dizziness, fatique, and nausea initially. Now he is experiencing difficulty with concentration, excessive energy, anxiey if he has to sit in one place for any length of time, he has a sense of being more self-centered, and a generalized sense of uneasiness. I am thinking this is related to the sudden shifts in his hormones. His teststerone went from 150 to 850 also in two months. Has anyone else had this experience? Alexandra Hill <hill.alexandra_AT_mayo.edu> Rochester, MN - Thursday, June 29, 2000 at 17:20:32 I am a MEN-1 patient seeking out others with this rare disorder. MEN-1 stands for Multiple Endocrine Neoplasia. In 1999, I underwent surgery to have tumors removed from my pituitary gland, pancreas and parathyroids. I even had one in my spinal cord but there is no certainty if it was related to my MEN-1. I have set up a website to meet others who are affected by this disorder. Please drop by if this affects you or one of your family members. Robert <rgrnnn_AT_hotmail_DOT_.com> Chicago, IL - Wednesday, June 28, 2000 at 21:24:32 about a year ago i noticed little white dots on my chest and neck. there weren't that many. here lately i have been getting alot more and now they are getting a red circl around them. the range in diffrent sizes. i was just wondering if anyone knew what they were and if i should be worried about them or not. please email me if you know anything. thank you Evelyn <snaggl00_AT_aol_DOT_.com> titusville , fl - Wednesday, June 28, 2000 at 08:22:00 I am a 49 yo female who was diagnosed with a pituitary tumor back in 1995. I have a pituitary micro-adenoma. At the time I was originally diagnosed I had not menstruated in over a year, I was suffering from extreme fatigue, had a continually stuffy nose, and appeared to be lactating at times. I thought that I was in the middle of some strange, premature menopause. I finally went to my gyno who determined that I was not menopausal and immediately did a blood test and discovered that my prolactin levels were quite high. She immediately referred me to an endocrinologist who orderd an MRI. The MRI revealed that I had a microadenoma (5mm in diameter) and a partially empty cella. My endo immediately prescribed parlodel which I took for three years, For the last two years I have been taking Dostinex. The good thing about Dostinex is that I only have to take twice a week, as opposed to having to take Parlodel every day. The medication reduced my prolactin level to within normal range, and I stopped lactating. I also began menstruating again and feeling sexual desire. A more recent MRI has shown that while the tumor has not shrunk in size as my endo had hoped, it has not grown either. In the past five years, however, I have gained over fifty pounds, have not had one good nights sleep, have been diagnosed with sleep apnea, have terrible pain at time in my joints, am always extremely fatigued, am always very short of breath, and always feel like I have an incipient cold. I also used to have a nice singing voice, but no longer. My voice has deepened, and it cracks when I try to sing. While vision field test show that I have had no loss of peripheral vision, I have had some visual disturbances and blurred vision. I regularly go to an opthamologist who tells me not to worry that this is just a sign of natural aging, but I wonder. Occassionally, I will have brief bouts of vertigo and my children claim that I appear to have mood swings. I must admit I am not the sunny, bright eyed and bushy tailed individual I was six or seven years ago. I have bouts of depression, and I have rarely previously ever been depressed, no matter how bad things may have gotten in my life at different times. I would really like to have the tumor removed, if it would mean I could go back to feeling more normal. I must admit, reading all of your comments had been very helpful, as I have been shocked to find that my current symptoms are consistent with so many of yours. I am planning to see my endo shortly and feel much more prepared for a discussion with her about my symptoms and options. Thank you all for sharing. I know that I am not alone nor all that different from others who have been diagnosed witha pituitary micro-adenoma. Linda R. <LAWYERAAU_AT_AOL_DOT_.com> Flushing, NY - Saturday, June 24, 2000 at 10:42:38 Has anyone experienced enlarged liver and spleen as a result of pituitary tumor and/or parlodel or dostinex? Thanks. Larry <larrytonti_AT_hotmail_DOT_.com> cleveland, oh - Friday, June 23, 2000 at 07:19:41 Boy was I glad to see this page. I was diagnosed with a macro-adenoma prolactinoma last fall,( after two years of telling the Dr. that there is something wrong with me). Finding information pertaining to this is virtually impossible and finding a dr. that knows anything about it is even harder. I am currently taking bromocriptine 5mg/day. It makes me extremely sick and I feel very loopy all of the time. I am considering the surgery and like to hear from anybody who has had it. Will I ever feel normal again? JAN <jan_roberts2hotmail_DOT_.com> TERRACE, BC - Thursday, June 22, 2000 at 16:52:14 I have been diagnosed with high level of prolactin in my blood. MRI showed no sign of tumor. I still experience blurred vision and breast pain. Any sugestions would help! thanks! Helen Romero <jhjsromero_AT_aol_DOT_.com> Redondo Beach, Ca - Wednesday, June 21, 2000 at 23:02:54 I am a 27 year old female dignosed with micro prolactoma in 1994 it was 5mm in diamiter. I have not had a MRI done again.I take 2 and a half tabs of 2.5 mgs of parlodel or bromocriptine. I have found that the generic makes me very nasuated, dizzy, and very tired! I feel those symptoms sometimes even if I have not had the genertic. I also get a dry feeling in my head,and sometimes depression. I did not have my medication for a whole week and started geting migrane headaches. I read about weight problems I dont have one myself but am very courius of all problems I can poss. prevent or symptoms that might require a certin medication. Im also trying to learn of other pituitary path. I might be prone to. My prolactin levels are normal. I was diagnosed after symptoms of no periods, and lactation (not pregnant)then an MRI. E-mail me if you would like to know about my experiences or if you have any to tell me. Man I would like to rid myself of these symptoms. By the way Im going to the doctor July 11 and I will be requesting and MRI be done.Martie Martie <leximarti_AT_aol_DOT_.com> Navarre, Fl - Tuesday, June 20, 2000 at 19:36:34 I have just turned 20 yrs old this April 2000 and I have been diagnosed with prolactinoma which has enabled me not have a regular menstrual cycle. The only time I have gotten a cycle was when my dr's put me on provera pills about once a month. Because of this dr's say that i'm gaining weight despite me being an active walker three days a week for 2 hrs and I regularly attend an aerobics class four days a week for an hour and half. I also have been cutting fats out my daily eating habits. What am I doing Wrong? I have four other younger sisters ages 18,17,15,& 13 who have all gotten there periods around the age of 12 or 13. So what could be my problem? Will I have an early menopause because I haven't gotten a period??? danielle <partygirl0080_AT_aol_DOT_.com> piscataway, nj - Tuesday, June 20, 2000 at 19:21:20 Hello- I have been taking Dostinex for about a year for a hyperprolactin. I have gained over 10 pounds throughout the year despite lots of exercise and diet. Does dostinex cause weight gain??? Thanks jess <jessica.clark_AT_yale.edu> New haven, ct - Tuesday, June 20, 2000 at 09:15:08 About 7 years ago my periods just stopped. I was 34 at the time and my GYN said "well, it's better than the alternative" No tests of any kind were done. In 2/99 I went to the ER at the hospital where I worked with what I thought was another severe sinus infection. The PA was not satisified that that's what it was and ordered a CT Scan and an MRI. When the results came back they at first thought I had an anuerysm. Shortly after telling me this the neurosurgeon that they had called came in and said, no it's a pituitary tumor. I follwed up with him at his office and then he referred me to an Endocronologist who put me on Dostinex and said this would shrink the tumor, that they were very common, nothing to worry about, blah, blah, blah. After about 2 weeks of taking it my periods came back after not having them for 7 years. I experienced all the side effects of the Dostinex, especially the headaches. Now I had severe cramps with my periods. I told the neurosurgeon and the Endo about the headaches. All they would say was no it doesn't cause that...They even told me the tumor would not cause headaches. I did research on my own that contradicted everything they had told me. I kept taking the dostinex. In August of '99 I ended up having to have a total hysterectomy beacuse of the fibroid tumors and the and the severe cramping. I forgot to mention that my vision was checked to make sure that the tumor was not pressing on my optic nerve, it wasn't which is about the only good thing to come out of this. Anyway, my prolactin levels were being checked regularly and always staying the same. This was the end of 1999. Then I started having severe pains in the left side of my head. Another MRI was done and it showed that the tumor was bleeding. At this time, Dec 1999 the neurosurgeon decided that since the tumor was not shrinking and because of the bleeding that the best thing to do would be surgery. Ok, I thought to myself, I'll get this thing out and that will be that. I had the surgery 3/30/2000, was in ICU for 5 days and if I had it to do over again I don't think I would. The neurosurgeon and ENT doctor did the surgery. I have been out of work since 8/99, I have no energy, my head hurts all the time, I'm having severe anxiety attacks, depression, loss of appetite, I cry a lot. I go to the Endo and he runs all the expensive lab tests but can't seem to give me an answer. I know that a some pont in my life I did feel good. I don't remember what that was like. I've read that it takes time for the body to adjust to not having the tumor anymore..I don't know. All I know is that I do not feel like the same person anymore and these docs can't give me any answers. All I ever kept hearing was how common they were, no big deal and so on and so on. I was also told prior to the surgery that I would most likely be on thyroid meds, hormones and steroids. So far, none of the above. I no longer see the neurosurgeon, after the 2 post op visits he said his part was done but he did want me to see a neurologist because of the headaches. I see him the end of July. The Endo tells me absolutely nothing, I ask, but he says nothing. I know it's time to find another one, I just hate going through that whole process again. The thing is, I feel rotten and because of this it has led to more depression and I can't help but wonder if I will ever feel good again. Hopefully I'll find the right doc. Thanks for listening. Marti <STHRNSTILL_AT_aol_DOT_.com> N. Las Vegas, NV - Tuesday, June 20, 2000 at 02:50:58 Hi, my name is Kris and I am a 33year old female. In attempts to determine why I had developed an overabundance of ovarian cysts and fibroids, my ob/gyn sent me 2 months ago to see an endocronologist. The endocronologist checked my prolactin levels and determined that my level was at 418.2. I was told that the normal level for females was between 1.2 & 24.2. I have read through many of the messages in this guestbook and have found that the normal prolactin levels vary. I am wondering now if I was given the right information from the endocronologist that I saw. After some further testing and an MRI (open MRI, found out I was claustraphobic and that the regular MRI wasn't my cup of tea)it was determined last week that I have a pituitary tumor. At this point, I have no idea what size it is and if it is going to affect my optic nerve. This morning I found out that I am being referred to a neurosurgeon. I have an appointment to see the neurosurgeon on July 10th. I must admit that I am scared. Has anyone else had similar experiences? What kind of questions should I be asking the neurosurgeon? I should add that the endocronologist has prescribed Dostinex .5mg 2x wk (boy is this expensive!!! Thank God for insurance). I am experiencing pretty much all of the side effects of this medication, headaches, nausea, lightheadedness and am extremely tired(urrggh). I have left out alot of what I have gone through over the past year, but what I have written has pretty much summed everything up. Is there anyone out there that can give me some ideas of questions that I should be asking the endocronologist and neurosurgeons? I am so glad that this message board is here!! Good Luck to all of you!!! Kris <IMALRT2_AT_aol_DOT_.com> WI - Monday, June 19, 2000 at 22:11:55 I have been diagnosed with a 1 cm. big pituitary tumor that is enclosed within the sella turcica. I have been taking Dostinex for 2 years and haven't had any further problems. So far it hasn't grown-so I am happy! Its nice to know that I am not the only one with this kind of tumor. Lindsey Starr - Monday, June 19, 2000 at 00:59:32 I had Cushings Disease and underwent surgery two weeks ago. If I can be of any help to anyone let me know. Another good BB is at www.support-group_DOT_.com at the Cushings selection. Lots of great people there with lots of info...jack jack <jdean_AT_sc.rr_DOT_.com> Columbia, SC - Sunday, June 18, 2000 at 21:40:24 hi i am fay it is great to know about this site now i can read what others might be going through that i am going through i have had two pituitay tumors tsh secreating kind and radiation i am now pass the 10 year mark but still have problems but hopefully the tumor will stay away. thanks for having this site. fay fay divine <mikiedivine_AT_aol_DOT_.com> surprise, az - Saturday, June 17, 2000 at 19:19:26 My granddaughter, Christy had surgery to remove tumor-craniopharingioma 5 years ago. She just learned today,6/16 that the tumor is growing back. She will now undergo stereotactic radiosurgery. Is there anybody that has had this done recently. Christy will be 15 years old in August. When she was first operated on, the tumor crushed her pituitary gland and she developed diabetes insipidus. She is on numerous meds. Anybody know the prognosis for this procedure?? I have a friend at work that had this procedure done one month ago and he has been ill ever since. Thanks for your input. Joni Gustafsson - grandmother Joni Gustafsson <Gussie2340_AT_aol_DOT_.com> Ft Wayne, IN - Friday, June 16, 2000 at 21:27:05 Life consists not simply in what heredity and environment do to us but in what we make out of what they do to us. H.E. Fosdick pj <enjoy life to the fullest> . - Thursday, June 15, 2000 at 23:44:24 I want to re-enter your guest book as a reader. The first time I found this guestbook, I was very impressedf. I just found out I have a prolactinoma and Growth Hormone deficiency, after a fall a year and a half ago, being called a "martian" by a back specialist, Physiatrist, finally a diagnosis of severe Fibromyalgia. My back, legs, hips and hands have severe spasms controlled barely by a huge collection of drugs,. I was already chronically ill, on 2 short leaves from work as a school Nurse. But this time with this fall I took at work, I kept getting worse and worse and thoug I have excellent doctors for Pain and Rheumatology etc...no one looked into my endocrine side, after my first bout of life threatening illness was a mis or undiagnosed severe case of thyrotoxicosis. By chance?luck?I diagnosed myself the first illness, autoimmune thyroid,the second illness(Sjogren's and Trigem inal Neuralgia) was diagnosed by a Rheumatologist. So after this work injury I saw my former Rheumatologist and Endocrinologist, asking if this worst complete disability could be related to the autoimmune thyrotoxicosis, which took 5-6 yrs to stabilize after being allergic to several necessary meds, and it turned ou hyper again after the fall. Being a former Endocrine Nurse Clinician before having my second caesarean at 40, I called my old boss for info about Growth Hormone for adults. I also found ou that my father, dead 20 years ago with a Glioblastoma, had an operation on hs Pituitary when he was young. So again it was my self referral as an Endo Nurse that finally got me to my new Endo, who turns ou to be part of the local Pituitary Society at NYU. He added a couple of other tests to the stim test. Now I have Growth Hormone Deficiency and a Prolactinoma Had I not known about endo, I could have lay here for several years with the Fibromyalgia symptoms, in a wheel chair with cane and medications galore, till who knows what would have happend to me this time. Why are doctors so reluctant, or ignorant of such an obvious post traumatic, 4 ft 10 inch person who is SO exhausted and experiencing obvious signs of possible endocrine exacerbation, and a horrible history of so many endo and pain chronic and acute illnesses starting about 2 years after my 2nd child, now possibly the timing of Sheehan's Syndrome after pregnancy pituitary trouble, but symptoms only starting a few, in my case 2 years later. If I can find all this out as a Nurse with the internet for research, why did it have to be me who found ou what was really my first true, on paper diagnosis? My website is a Musical one, former grad student, writer and teacher of music, now on long LOA from Music, can't play with hand pain carpal tunnel etc... spasms. Now there is hope for me to again return from endo pathology to my original smart super active self? Thamks, Ellen Ellen Rosenfeld <errosie_AT_bellatlantic_DOT_.net> Closter, NJ - Wednesday, June 14, 2000 at 09:04:52 I am writing with concern for my mother. Fifteen years ago she awoke one morning with problems to her vision(blurred and seeing double). After a visit with her doctor an immediate cat scan was done and a pit tumor was found. A week later she was scheduled for surgery and the tumor was removed. She has never been the same since. This incredible woman still remains incredible but her lack of energy, tiredness, weight gain, swelling, fatigue, etc.(u know the routine) does not have her feeling too incredible at all. She tells me that through out all of those fifteen years she has always felt as though she was pregnant. She has always felt that she is not ok. She has tried to explain these feelings to numerous doctors but saddly enough, none of them took her concern very seriously. At times even laughing and telling her that it's all in her head and that maybe she should go talk to a dietician. I AM COMPLETELY OUTRAGED!!! Time and time again she has gone back to the same doctors and they kept on telling her the same and casually sluffing her off! So, over the years she has done her homework because the doctors that she has gone too have been of no help. She has approached these doctors again with inqueries of Cushings disease. After a couple of urine and blood tests through much of her own coaxing, nothing was found and the doctor(a neurologist) was confident that nothing was the matter. Luckily my mother was smarter than that and new her body well enough to really push for an MRI. Might I add, this was to the "doctors" dismay but the MRI went through on the 31rst of May. Guess what was found!? It's dimensions where 15mm x 10mm x 15mm in size. She was told she has another tumor but no cushings? Is that possible!? He then went on to tell her ON THE PHONE!, ya got three choices 1) wait a year, see how much growth occurs 2) radiation 3) surgery.... it's up to you.(I never realized bedside manner could be done on the phone and so non-chaulantley) Where does she go from here? I really want her to get a second opinion. Is there anyone that could suggest anything in this circumstance. Really, Canada is not as COLD as it sounds. Hendrik Beekman <gbeekman_AT_eidnet.org> Rainier, AB - Tuesday, June 13, 2000 at 21:14:16 Hi, I have a macro-adenoma secreting prolactin and growth hormone. Diagnosed initially with only prolactinoma in 1992. Operated on in 1992 and 1995 and had radiation treatments in 1996. I however found out in 1998 that I had Acromegaly, currently on Sandostatin injections. I have been having serious bouts of depression since 1995. I'm wondering if anyone else has experienced bouts of depression. I have been on several types of anti-depressants but it has had only minor affects towards helping the depression. Just wondering if it's somehow connected with the tumor and some sort of hormonal imbalance. Eileen <jedrazek_AT_worldspy_DOT_.net> MA - Tuesday, June 13, 2000 at 19:30:01 My husband was diagnosed with macroprolactinoma in April. He is a healthy, active 25 year old. The tumor is slightly bigger than a golf ball. The only indication we had was slight vision loss in one of his eyes. He went to his primary care physician, and within an hour he was at the hospital waiting to have an MRI. The doctors have decided that the best route for him is Dostinex (.75mg 2x wk). We are scared... We have no idea what to expect over the next few months, even years. He will have another MRI next week. He will go to the endocrinologist in a month for more blood work. Initially his prolactin was at 3500. It is now at 115. His testosterone is still low at 323. When should we expect to see this thing shrink? Will it ever go away? Are there any hidden side effects from the Dostinex? He has had minimal side effects so far. I'm looking to hear anyone's story - preferably a male in his twenties. A <ffddssaa11_AT_hotmail_DOT_.com> LA, CA - Tuesday, June 13, 2000 at 10:24:09 Refering to and continuing my previous postings: My eyesight (peripheral vision and visual fields) tested very good, even though my optic nerves were stretched (in the words of the neurosurgeon) "to the max". This, with the fact that what symptoms I did have were mild, led him to conclude that my tumor has grown slowly over the course of several years, maybe ten or fifteen. He (neurosurgeon) opted not to operate, but to turn my case over to the endocronologists. That, people, is a conservative surgeon. Ben <dmacneal.vicon_DOT_.net> Livonia, PA - Monday, June 12, 2000 at 23:02:42 Continuing from yesterday: the "spells" I'd been experiencing were a type of siezure (though I was able to drive or carry on conversation during these episodes with no problem) caused by pressure my lobed, "dumbell-shaped" tumor was putting on the right temporal lobe of my brain. In the MRImages, the dislocation of grey-matter was a bit unsettling. Also showing on the pictures was a hemmorage within the tumor itself which I experienced as a very severe headache two days before the MRI, that headache was the only actual hurting pain my tumor caused for me. Ben <dmacneal_AT_vicon_DOT_.net> Livonia, PA - Monday, June 12, 2000 at 22:51:07 Hello, After reading all the posts in here I decided a story I wrote a few years ago for pituitary_DOT_.com might help. There seems to be a lot of confusion, concern and worry about the tumors we have or had. Maybe this will help some. Here goes: A success story by Tom O'Neal And now for some good news and a few tips from a "cured" acromegalic. I'm new to PTNA but I thought I would share my story with you in the hope that it may offer some encouragement to those of you who may be very concerned, very frightened and very frustrated. My acromegaly tumor (3 cm) was discovered in 1991 by a GP who just happened to be a very close friend. He broke the news gently and told me, the best he could, what the problem was and what my options were. He had done a lot of reading before talking to me and explained that the only way to completely remove a pituitary tumor was to remove it surgically. He stressed that he, and most of the medical profession, was very ignorant about pituitary tumors. He explained the procedure for removing one was very delicate and required a skilled surgeon working with a team that included a top notch endocrinologist. He was honest and acknowledged that he had no idea where to send me. He did warn me that I should not let anyone use me as a guinea pig. I thank him to this day for that advice. He then suggested that we begin a search by calling all friends, family and associates, explaining the problem and have them check their areas for surgeons and endos who were familiar with pituitary disorders. Perhaps, he said, we would get a couple of names that came back from a lot of the contacts. I personally made calls to Washington, DC, Los Angeles, Houston, Atlanta, Michigan, and Minnesota, Canada and other places. All of my friends in those areas made inquiries. Within a week I had many lists of names. So did my GP. Only two names were on all the lists - Dr. George Tindall at Emory University Hospital in Atlanta and Dr. Edward Laws, now at the University of Virginia. More checking showed that both Tindall and Laws were neurosurgeons who had a team of doctors who specialized in pituitary tumors. Both also worked with a very good endocrinologist. Both had performed more than 1,000 transsphenoidal surgeries and both had excellent track records. We were on our way. Since my parents live in Atlanta, I chose Tindall. My GP made the appointment. Despite being told by many of the doctors I had contacted and who had seen my MRI that a 3 cm tumor would cause major problems, especially considering the awkward position it was in, I was put at ease quickly in Atlanta. Dr. Tindall checked my MRI, confirmed what I already knew and said: "I think we can handle this. How about next Monday." He and all his team treated me with great respect. I was introduced to all those who would be involved, including the endocrinologist, Dr. Richard V. Clark, a really great guy. I was introduced to David Adams, one of Dr. Tindall's many assistants and the man who specialized in removing a tiny piece of adipose (fatty) tissue from the abdomen to pack the sella after the tumor had been removed. Before I left, Dr. Tindall took me to meet a woman who had undergone transsphenoidal surgery (Cushings) the day before. It was very reassuring. My tumor was removed on July 9, 1991 beginning at 7 a.m. When I awoke at 4 p.m. Dr. Tindall was in my room and whispered gently, "I believe we got it all." Today, eight and a half years later, all blood tests have been perfect. I received my most recent test results on October 26, 1999. I have required no medications and no radiation treatments since surgery. I feel and look great and I am keeping my fingers crossed that my tests will remain perfect until I hit my 10-year period, which is both Tindall's and Law's time frame for a complete cure. That's only a year and a half from now. I consider myself very lucky and blessed. Here is what I learned. I hope it will help you. Remember, most endos and neuros, even the good ones, know practically nothing about pituitary tumors. Search for the right one until you are exhausted. If you get the right team, you'll know. They will treat you with respect and you'll get no conflicting information. They know what you are going through; they deal with this everyday - just like you. Do not let ANYONE tell you what you must do (radiation, medication, etc.) until you are convinced they know what they are talking about. Remember my GP's warning: Most know little about pit tumors; don't be anyone's guinea pig. Get the right team. Good luck, Tom O'Neal (oneal_AT_coastalnet_DOT_.com) Tom O'Neal <oneal_AT_coastalnet_DOT_.com> Atlantic Beach, NC - Monday, June 12, 2000 at 22:19:55 I am a 52 y.o. man living a moderately active life, working full time and on my feet most of the working day. I have a prolactinoma pituitary tumor starting. We caught it early because of my suspicions of several side effects from it like gynecomastia, low testosterone, and osteoporosis of my spine. Find out which type of tumor you have and do a web search on the internet through http://www.metacrawler_DOT_.com You will find lots of useful info through the search engine!!!! Including about the drugs that might be used. It has been VERY helpful for me! Also look up pycnogenol on the internet and consider whether you want to start using this powerful antioxidant herbal substance to strengthen your body nutritionally. Doing the homework on the internet will help you sort out a lot of your concerns as it has for me, including the weight issue related to hyperprolactinemia, with which pycnogenol may be helpful also. read, read, read! you have a vested interest in yourself that the doctors do not have. Craig <cmarsz_AT_erols_DOT_.com> CT - Monday, June 12, 2000 at 20:33:55 the address i gave the first time was wrong but this is the right one and if anybody has any information about sella turcica i would sure appericate it.My aunt is a 51 year old that was dignoised with that.And any information would help. Thank you debra faulconer <debra faulconer_AT_aol_DOT_.com> wyoming , mi - Monday, June 12, 2000 at 19:05:32 Hi There i was wondering where i could get information on sella turcica. Thank you for your time DEBRA FAULCONER It is not for me it is my aunt and i need some information on it Debra faouconer <debraffaulconer_AT_aol_DOT_.com> wyoming, mi - Monday, June 12, 2000 at 19:00:08 asking about pituatry tumor anhthupham <anhthup_AT_yahoo_DOT_.com> - Monday, June 12, 2000 at 17:12:41 looking for somebody with knowledge of coroted body tumor in neck ,glomus tumor,paraganlioma that matasticized all over the spine.currently getting radiation to the spine mark simpson <TFnewyork_AT_aol_DOT_.com> - Monday, June 12, 2000 at 16:19:50 I want some information about gamma radiations. Actually my friend is suffering from gamm radiation burns. Rajinder <Rajinder_AT_nmicro_DOT_.com> new delhi, Delhi - Monday, June 12, 2000 at 05:28:55 I am looking for a site to find out about a surgion. All I can get is basic info. I would like full background profile and case history.re. Dr.Alen Berger Jax.Fla.(neurosurgion). My father will visit him next week.Thank You russellfer429_AT_cs_DOT_.com fred russell <russsellfer429_AT_cs_DOT_.com> tampa, fla - Monday, June 12, 2000 at 04:39:13 I'm a 34 year old male diagnosed 12/99 with macroprolactinoma (50mmx38mmx28mm). Symptoms prompting Dr visit were mild dizzy spells (including deja vu and a distinctive olofactory sensation)starting 9/99, and mild diplopia starting 11/99. MRI showed this impressive tumor, neurosurgeon thought it probable cranial pharyngioma, but blood test (prolactin 7426 ng/ml) showed the truth. Immediately initiated bromocriptine _AT_ 5 mg/d. I'm at the end of a long copper wire, and my server will hang up on me, so I'll send now, add more later. Ben <dmacneal_AT_vicon_DOT_.net> Livonia, PA - Sunday, June 11, 2000 at 22:18:30 none kathleen nellis <ktnellis_AT_aol_DOT_.com> Babson Park, FL - Sunday, June 11, 2000 at 09:27:11 I'm a 32 yo male. I was diagnosed in 10/99 with a macroadenoma. I was put on Bromocriptine. My prolactin went from >2000 to 60, where it has leveled off. My endo wants to put me on Dostinex to see if prolactin will go down to more realistic levels. Followup MRIs have shown the tumor is shrinking, although not as much as they had hoped. But the headaches and pain behind my left eye are gone. Yeah! Anyway, I tolerated the bromocriptine extremely well, IMHO. I was wondering how the Dostinex will be I will start this week taking it. Also, besides this excellent resources, does anyone know of any mailing lists for folks with pituitary adenomas? Please e-mail. --Michael. Michael <threecatz68_AT_hotmail_DOT_.com> Washington, DC - Saturday, June 10, 2000 at 15:47:17 I have been treated for hyperprolactemia for 7 years. My prolactin level has been very dynamic with me needing a dose of 10mg a day to keep it in normal range. My periods are regular with this dose. Both of my MRI's concluded that it was a microadenoma on the pituitary gland. I've had episodes of near passing out these past few days. My doctor told me to stop taking it until we can see a current level. She seems to think that it may be caused by this "high" dose. She stated that it may being supressing other stuff. Has anyone ever experienced this? Does any of this make any sense? I'd appreciate any feedback/comments. Thanks. Hartz <billster_AT_ix_DOT_.netcom_DOT_.com> Boston, MA - Friday, June 9, 2000 at 16:30:55 my daughter was just diagnosed with a pituitary tumor C.Fullerton - Friday, June 9, 2000 at 13:35:45 I am very interested in your website! Please e-mail me anything on this topic. Thanks Paula Smith <PSmith1218_AT_aol_DOT_.com> Mansfield, OH - Friday, June 9, 2000 at 06:40:03 My husband and I have been trying to conceive for two years now. I have had a high prolactin level for the last 9 years. I have been on parlodel the entire time. Has anyone had any success with conceiving with this problem? We are still afraid of the risk factors of getting pregnant with this problem. Any reassurances? Laurie <anderslb_AT_arlaw_DOT_.com> Baton Rouge, LA - Thursday, June 8, 2000 at 12:06:04 I had brain surgery October 13, 1999. I had a Rathke's Pouch Cyst in the Pituritary gland pushing up aginest the optical nerve causing my vision to deteriorate to where I had no side vision. After the surgery I am experiencing intracranial pressure and at times my vision gets blurred, and I am very tired. Is this commom! I have just recieved a Cat scan within the last month and nothing is showing. Anybody have any answers or opinions. Angela Privitt <alonzo1_AT_earthlink_DOT_.net> Riverside, ca - Thursday, June 8, 2000 at 00:44:55 I'm looking for any information on the possible connection between the mononucleosis virus and pituitary malfunction. I am currently being teated for a prolactinoma, but I can't get an MRI for three weeks. (HMO) Thanks and good luck to everyone! Kelly <KeliMil_AT_aol_DOT_.com> Seatle, WA - Wednesday, June 7, 2000 at 18:31:40 PJ, I have IGF and HGH and a few others tested once a year. The last tests were in November. HGH was 1.3 ng/ml and IGF was 253 ng/ml, both very normal for a 51-year-old male. Both my neurosurgeon and the endcocrinologist who worked with him specialized in pituitary tumors (I was the neurosurgeon's 1,200 transsphenoidal back in 1991). Neither thought an MRI was needed unless the blood levels showed some abnormalities. They haven't and I haven't had an MRI since the one I had before surgery. Tom Tom O'Neal <oneal_AT_coastalnet_DOT_.com> Atlantic Beach, NC - Wednesday, June 7, 2000 at 17:55:27 curious about weight gain from others having high prolactin. what worked in terms of medication, diet etc. teresa luce <ccspang_AT_aol_DOT_.com> lake oswego, or - Wednesday, June 7, 2000 at 15:41:40 looking for any info on a elevated prolacton level and making breast milk, minus pregnancy and nursing tina pinzone - Wednesday, June 7, 2000 at 14:21:46 Hi. I was so happy to find this site. I have suffered from hyperprolacin for about ten years now. It happened after I had my first child in 1990. My breast milk never went away, and I didn't even breast feed. I have been to more doctors and specialists than I could mention. I just had an mri, and my tumor is only 3mm in size, although I have been taking Dostinex for quite some time. I have gained 70 pounds that the Dostinex has not helped me in losing (I thought I would shed the weight with lower levels). I am an emotional mess, and not used to being overweight, since I was always thin before this. My breast milk has gone away finally, and I just started having periods again after many years. I had a second child in 1997 with the help of parlodel and chlomid, and the symtoms worsened. I am now thinking that I may have cushings syndrom, since I have this incredible hump on my back, a round face, fatigue, and most of my weight is in the middle area (my legs are still thin). People always ask me when my baby is due, and it is embarrassing, since I am certainly not pregnant. My question is... Is Cushings easy to diagnose. I am going to the doctor next week, and I need to know what questions to ask. GAIL CUELLAR <CBROOKCAT_AT_AOL_DOT_.com> CARROLLTON, GA - Wednesday, June 7, 2000 at 13:55:51 I was recently diagnosed with hyperprolactinemia. Was retested after 4 months (no meds) & level was higher. I tried Dostinex, but experienced very bad side effects. I am seeing an endocrinologist in two weeks. What I am wondering about is the weight gain I have experienced. Is there anything I can do to lose weight? Will I stop gaining & start losing after the level is lowered? I have gained at least 20 pounds and I am very depressed about it. Shannon <tjwesson_AT_fwi_DOT_.com> Garrett, IN - Wednesday, June 7, 2000 at 13:38:47 Mary I tried to e-mail you privy but your addy is wrong. I have info regarding parathyroid tumors. My stepfather had his removed last year. E-mail me and I will send you the info. Trish trish <acrowhat_AT_aol_DOT_.com> OH - Wednesday, June 7, 2000 at 08:09:22 I've writtein recently about my son, having a 2 cm tumor removed on June 28th. We have a new symptom, but I can't find anything about it. He has developed striata. His hips and thighs all of a sudden look like he's been attacked. I've never seen anything like this. Does anyone else have this, or maybe know it's cause? Is it something I should be alarmed about? Thanks again to everyone who has written. Ruth <Maxhappens_AT_aol_DOT_.com> Tyler, TX - Wednesday, June 7, 2000 at 08:07:15 Hi Tom O'neal, Are both IGF and GH in normal range? How frequent do they check them? How frequent do you have MRIs? p pj . - Tuesday, June 6, 2000 at 23:18:00 Hello, My name is Tom. I posted a message on this guestbook a few months ago and got a lot of responses. Just thought I would drop in again in case any of you wanted to talk. Here is my story. My acromegalic tumor (3 cm) was discovered in late June 1991. How it was discovered is a long and fascinating story. With the help of a little luck and some excellent advice I had the tumor removed less than three weeks later. During those three weeks, many experts told me that the tumor could not be completely removed (it was wrapped tightly against the carotid) or that I would surely lose my pituitary. I was scared, just like many of you. But that was nine years ago. Today, I am alive and kicking. I have required no medication, no radiation and all my blood levels have remained stable. I’m not sure if there is such a thing as a ``cured acromegalic’’ but I guess I’m pretty close to being one. I feel incredibly fortunate. I have even had the chance to do some editing for my neurosurgeon (I write for a living) and probably know more about pituitary tumors than I need to. Anything I can do to help others I consider the dues I am gratefully paying for being healthy today. You can find my ``success story’’ at http://www.pituitary.org/Articles/PatientPerspectives/AcromegalicSuccessStory.htm I know how a lot of you are feeling right now. I’ve been there. You are frightened, concerned, uncertain, in pain and probably don’t get a whole lot of sleep at night. If you just want to chat, ask questions, or whatever, drop me an e-mail. I do not give medical advice. But I will gladly share what I have learned. Take care, Tom O’Neal Tom O'Neal <oneal_AT_coastalnet_DOT_.com> Atlantic Beach, NC - Tuesday, June 6, 2000 at 19:14:27 I have been diagnoised with Nullcelladenoma. I am very scared and will have to have surgery in July to get rid of the tumors. Tina Whitney <tina_whitney_AT_eli_DOT_.net> Canby , Or - Tuesday, June 6, 2000 at 12:56:32 I have recently been diagnosed with hyperprolactinemia. I have been seeing an infertility expert as we've been ttc for over a year, My level is 41. I am now on Parlodel. But my periods were always regular? Anyone else having regular periods with high prolactin? I'm thinking there might be some other problem with conception. My husband's sperm count is normal. Larene <CLen484690_AT_aol_DOT_.com> Dubuque, IA - Tuesday, June 6, 2000 at 11:58:29 It's been a while since I signed in. This guest book has been a great source of comfort for me. I am hopefully nearing the point at which we will be able to try to get pregnant, YEAH! My husband and I are still trying to find out any information on Dostinex and pregnancy. If anyone has been pregnant and stayed on Dostinex or needed to start taking it again while still pregnant, we would love to hear from you. We are very anxious about this. Thank you everyone for sharing your experiences. Tracy Gorman <robtrayg_AT_netscape_DOT_.net> Plainview, NY - Tuesday, June 6, 2000 at 01:05:58 It's been a while since I signed in. This guest book has been a greta source of comfort for me. I am hopefully nearing the point at which we will be able to try to get pregnant, YEAH! My husband and I are still trying to find out any information on Dostinex and pregnancy. If anyone has been pregnant and stayed on Dostinex or needed to start taking it again while still pregnant, we would love to hear from you. We are very anxious about this. Thank you everyone for sharing your experiences. Tracy Gorman <robtrayg_AT_netscape_DOT_.net> Plainview, NY - Tuesday, June 6, 2000 at 01:05:37 It's been a while since I signed in. This guest book has been a greta source of comfort for me. I am hopefully nearing the point at which we will be able to try to get pregnant, YEAH! My husband and I are still trying to find out any information on Dostinex and pregancy. If anyone has been pregnant and stayed on Dostinex or needed to start taking it again while still pregnant, we would love to hear from you. We are very anxious about this. Thank you everyone for sharing your experiences. Tracy Gorman <robtrayg_AT_netscape_DOT_.net> Plainview, NY - Tuesday, June 6, 2000 at 01:04:48 Great Site for inter-action. We hear of some many more people with this type of tumor. thanks again Vanessa Gladney <RelivShaker_AT_aol_DOT_.com> Melvindale, MI - Monday, June 5, 2000 at 22:47:26 NEED INFO ON HYPERPARATHYROIDISM. WHO HAS HAD THE OPERATION/WHERE AND BY WHAT DOCTOR? RESULTS? IS THERE NON-SURGICAL TREATMENT? MARY EGAN <MARYEGAN98_AT_AOL_DOT_.comBALLSTON LAKEB> BALLSTON LAKE, NEW YORK - Monday, June 5, 2000 at 22:20:34 NEED INFO ON HYPERPARATHYROIDISM. WHO HAS HAD THE OPERATION/WHERE AND BY WHAT DOCTOR? RESULTS? IS THERE NON-SURGICAL TREATMENT? MARY EGAN <MARYEGAN98_AT_AOL_DOT_.comBALLSTON LAKEB> BALLSTON LAKE, NEW YORK - Monday, June 5, 2000 at 22:20:28 I had a operation in 1986 and 1997. After the last one I have been off work and I have severe depression from that time. If any one has any helpfull ideas please contact me by E: Mail please. Both of these operations were done Toronto On. Canada. I only live a short distance from there. Thanks to any one who may be able to help me. David W. Johnson <dw_AT_sympatico.ca> Lindsay, on - Monday, June 5, 2000 at 21:36:22 Im about to undergo a pituitary gland tumor removal treatment. Theo Smits <Goldeye001_AT_aol_DOT_.com> Stiens, Frl - Monday, June 5, 2000 at 10:50:04 I am glad to see something like this. Carolyn Metzger <Shimtty_AT_aol_DOT_.com> Clarksville, TN - Saturday, June 3, 2000 at 21:16:30 I wrote about a week ago when they scheduled my son's surgery for June 2nd, because of new problems it has been rescheduled for June 28th. His tumor is now 2 cm, and all along has been non-functioning. Adding to his other problems he developed, almost overnight, a greatly enlarged breast with discharge. We did another endocrine workup and his prolaction level jumped from 8 to 78 in less than a month. We were told in the beginning from our "first" Neurosurgeon that non-functioning tumors never became "functioning"...WRONG! Now added to my son's symptoms of depression, weight gain, personality changes are extreme fatigue, aching legs, unsteadiness and dizziness. We now have a wonderful surgeon who is finally going to get this thing out of his head, but no one, NO ONE will admit to us that the tumor is causing all of these symptoms, even his migraines! From reading I know that virtually all of you have some or all of these symptoms, and I'd like to know if you are running into doctors who say your tumor is an "incidental" finding, not related to your symptoms! Please email me if you have had this same experience. Our family just cannot believe it's a giant coincedence he developed symptoms, had an MRI, found a tumor, but the 2 aren't related! Please help convince us we are not crazy! Thanks too for everyone who has written! Good luck to you all! Ruth <Maxhappens_AT_aol_DOT_.com> Tyler, TX - Saturday, June 3, 2000 at 17:04:11 Would like any information on high prolactin level. Denai Williams <delphie_AT_earthlink_DOT_.net> Downey, CA - Saturday, June 3, 2000 at 14:37:28 Hi Everyone, Have a female problem here. I recently switched from parlodel to dostinex and I'm VERY happy with the switch but do feel a little more tired. The problem is since the switch my periods are very different. Not really a period. I don't want to offend any males here witht he details but it's more like heavy spotting for 7 days and the next perioed was heavy spotting for 3 days. I'm usually very predictable and this is odd for me. Anyone else have a change in their period and will things settle down? I'm taking 1/4 a pill 2x a week. Prolactin will be checked in a week to see if this low dose is good for me. Last prolactin count was 44 on an even lower does of dostinex, but that's when I did the switch over and so it's probably not too accurate. Thanks for helping and I love this BB. Karen................. KFStarCatcher_AT_aol_DOT_.com karen <kfstarcatcher_AT_aol_DOT_.com> CT - Saturday, June 3, 2000 at 13:38:50 I was reading the July issue of "Prevention" magazine last night. There was an article regarding Chasteberry on page 116. The last paragraph was very interesting as it mentioned that Chasteberry lowers prolactin. Does any have any information related to this and if it is safe to take if you are taking Dostinex? My doctor does not believe in alternative medical treatments but I'm curious! Thanks. Jeanette Fecteau <Jeanette.Fecteau_AT_saucony_DOT_.com> MA - Friday, June 2, 2000 at 09:50:29 I am a 35 year old male I was diagnosed with a pituitary tumor September 1999. 3 mm. I also had extremely low testosterone levels and what one doctor called slightly high prolactin levels and endocronologist said minimal prolactin levels. Male range 18-21 mine 59. The endrocronologist put me on a testosterone patch. Also tested all hormone levels several times now. The only one she said is a little low is thyroid but she is waiting 3 months to recheck this before treating this. I also had a bone density scan in december wich revealed ostopenia. I have old man bones in essence. I started seeing the doctor due to weight gain and numrous other complaints. I feel very lathargic at times extremely depressed and mood swings that have effected personal relationships. I almost never wake up feeling good I have not felt good in so long I don't know what it would be like to feel good it has been so long. Most days I feel I am going out of my mind. I have had another MRI and my tumor did not grow it is still 3 mm so I guess that is good. I just wish that I knew someone else who had similar symptoms and felt the same way. I am always tired and ache all over. I have headaches daily and I have slightly blurred vision in my right eye sometimes not every day. Anyone with information would be greatly appreciated. Joe <PJABSTRACT_AT_AOL_DOT_.com> Erie, Pa - Friday, June 2, 2000 at 00:21:13 please let me know from where i canget the medicine alpha fludro cortisone and the use of that medicine.my address is sachithps_AT_yahoo_DOT_.com Sachith.P.S <sachithps_AT_yahoo_DOT_.com> kochi, - Thursday, June 1, 2000 at 09:11:48 I'm a 26 year old female.A couple of weeks ago, I went to my Dr's, feeling tiered, rundown, depressed.In addition to this I have missed my periods for 5 months and I am lactating(Although this is tiny amounts) I received that results of my blood tests yesterday, to be told my prolactine level is 2000, and it should be around 50. I have been referred to an endo.Dr and have been scheduled for a CAT scan and MRI.This is a really scary buisness.It seems nearly everyone who has written comments here, has had a tumour of some sort.Can someone please keep in touch with me.Just for a bit more help and re assurance. Love the page, by the way.Don't know how I would have managed without it over the last couple of days. Joe <paulkennea_AT_localdial_DOT_.com> - Thursday, June 1, 2000 at 03:33:30 I have had a pituitary adenoma for approx. 8 years. I was diagnosed mid-Feb. of 1997. I had surgery (not through the nasal cavity) the last of Feb. 1997. My story is long and could be helpful to alot of you looking for answers or others that have experienced the same things you are going through. I have posted my story on the web, on my homepage. Any and all of you are welcome to go out and read it, after all that is why it is there. I hope it brings some comfort to those of you that think you are alone and answers to those of you looking. The URL to my story is: http://www.geocities_DOT_.com/cankcad/personal/mystory.html If you have any questions or comments feel free to email me at any time!! Candice Cadena <cankcad_AT_yahoo_DOT_.com> Ft. Worth, TX - Thursday, June 1, 2000 at 01:14:01 For a study..I would like to have any information regarding pituatary adenomas...possible side effects, surgery side effects, etc...Please e-mail me..I would really appreciate it..Thank you so much! Amanda <alongo_AT_aegonusa_DOT_.com> Clearwater, FL - Wednesday, May 31, 2000 at 15:59:53 We recently went and got an evaluation for our 16yr old from the neuro surgeon and he said at her age and the size of the tumor 8mm it would be advisavle to have it removed. He also said it is easier to remove if she has not been on medication for years and that the chance of it growing back are better to. He gave her a 95 to 98% chance that she could be perfectly normal with out having to take anymore medicine. She has been doing fine on the dostinex but he said for some people it just quites working. We have realy been in limbo here but she wants to have it done. I welcome all of your comments thanks so much. Karry <kkhsdrob_AT_aol_DOT_.com > CA - Wednesday, May 31, 2000 at 15:35:17 I was operated on for a pituitary tumor several years ago. The doctors thought they had gotten all of it. I was taking the medication Parlodel for several months and could not stand it! Then they had be taking half tablet, well I still could not take it. Finally it went down to taking 1/4 of the tablet, well I still could not toletate it. So I took myself off the medicine. For several years I thought I was doing fine! that was almost ten ears ago. Now it seems that the tumor is still there from all the indications I''ve been having. So I found this site by accident and found that I'm not the only one having this problem. It's very informative and interesting. I now know that I'm not the only one having this problem Irma J. Fontenette <irmajf_AT_swbell_DOT_.net> Missouri City, TX - Tuesday, May 30, 2000 at 19:24:50 Just wanted to join send any info my way> was just diagonsed 2 months ago with a pituatary tumor Debbie Prye <Strikerr_AT_aol_DOT_.com> PA - Monday, May 29, 2000 at 23:16:54 This is a very informative site. Thank you.Gay Galleher, Ph.D. 1044 Sir Francis Drake Blvd, Suite #4, Kentfield, CA 94904 Gay Galleher, Ph.D. <gaygalleher_AT_earthlink_DOT_.net> Kentfiled, CA - Monday, May 29, 2000 at 11:31:31 Hello, I have a prolactinoma 8mm and have now tried three meds, bromocriptine, permax, dostinex...all three make me extremly ill. I have been considering the surgery, has anyone ever been through this that can maybe give me some insight, THANKS! colleen <saenzcoco_AT_aol_DOT_.com> phoenix, az - Saturday, May 27, 2000 at 01:56:47 More research on prolactinomas....causes, symptoms, etc. Cathy Brown <c1t8ybrn_AT_aol_DOT_.com> Seattle, WA - Saturday, May 27, 2000 at 01:24:38 my sister has had a tumor on her pituatary gland for a few years now, they said it wasnt growing so not to be worried, she had asthma and was taking lots of prednisone (steriods) she got her asthma under control, and was able to quit taking the steriods, then she got so ill she couldnt walk she gained lots of weight, fatigued, really bad muscle pains, she found out she had a underactive thryoid, now she has been having periods for a couple months and her prolactin level is very high, she will go in for a mri next month, they say her tumor has probably grown, and that she probably had this befor, but the steriods was hiding it, i dint realize how serious this could be untill i read all the comments here, im woundering why they never gave her any medications for her tumor, and has any one had this problem, and been able to lose weight with the medications? also how dangerous is this, if it grows? i would really appreciate any information. thanks, debbie (hugs) to all. :-)))) debbie <kuka_AT_internetcds_DOT_.com> oregon - Friday, May 26, 2000 at 23:29:49 It is wonderful to know this Webpage exists. I was diagnosed in 1992 and struggled with parlodel for years. Finally in September of 1999 the adenoma hemmoraged and my decision was made for me. The surgery was peformed at the end of Oct 1999. After seven years I feel that I am living a normal life again. Including a sex drive! If I can be of help to anyone I will gladly share my experience. I am grateful that I had the surgery. Sheila Woods <woodsliberty_AT_cs_DOT_.com> Sea Cliff, NY - Friday, May 26, 2000 at 22:10:34 I am a 37 year old woman, I've been married for 3 years and I'm thinking about becoming pregnant. Please send me any info that might help me and my husband become pregant. thanks Jeanette Jeanette Phillips <NettePhillips_AT_AOL_DOT_.com> Manassas, VA - Friday, May 26, 2000 at 12:54:36 My sister-in-law was just diagnosed with a pituitary tumor yesterday(05/25/00). Information can also be found at: http://www.mayo.edu/gammak/proced.htm If anyone knows where I can find more info on this type of brain tumor please e-mail me. thanks, Larry Larry Gallagher <LGMISTER_AT_AOL_DOT_.com> LAWRENCEVILLE, GA - Friday, May 26, 2000 at 12:24:13 I have just been diagnosed with pituatary Adenoma can anyone please send me some information. Thank you. Carmen Aponte <Ahandyman20001_AT_aol_DOT_.com> Brooklyn, ny - Wednesday, May 24, 2000 at 17:50:14 Do Non-functioning Pit tumors reoccur? Or is it usually secreting tumors that come back? Any one out there have a non-functioning tumor, that was removed completely with surgury, reoccur? Any info would help. Deb Iverson <debkurtiver_AT_go_DOT_.com> Tomahawk, Wi - Wednesday, May 24, 2000 at 14:06:07 Looking for any info or anyone else that might be feeling tis way...was diagnosed with 6mm Proloactinoma in March. Am on dostinex 2X/week and prolactin level is "normal" (between 11-15 usually.) After that, went to Endochrinologist (on my own decison) for further testing just to make sure there was nothing else, because I wasn't happy with my care so far (tumor diagnosed by my OB/GYN.) Anyway, those tests were all "normal" too. My question is, if I am "normal" why do I feel horrible - mood swings, FATIGUE, headaches, still gaining weight, HOT all of the time, and just basically miserable. Is this how it will always be? Has anyone else expereinced this kind of "normal" hell? Thanks!! Libbi <ljaillet_AT_austin.rr_DOT_.com> Austin, TX - Wednesday, May 24, 2000 at 14:04:56 I have recently told that I may have a prolactinoma tumor, I am going to be scheduled for an MRI to find out if I do indeed have a tumor. If anyone has information that might be of help, please email me. Thanks...God Bless Carolyn Isbell <lnita_AT_mailcity_DOT_.com> McColl, SC - Wednesday, May 24, 2000 at 11:08:50 I HAVE PITUTARY GLAND PROBLEMS. MY PITUTARY RELEASES A HARMONE CALLED PROLACTIN,AND I HAVE TO TAKE A MEDICATION CALLED DOSTINEX TO KEEP IT AT BAY AND OUT OF MY BLOODSTREAM. IT CAUSES A REACTION,LIKE MOOD SWINGS IF I DO NOT TAKE IT. MY DOCTOR SAID THAT THE INTELLECT IS O.K. IT IS JUST WHEN THE PROLACTIN GETS INTO MY BLOODSTREAM THAT IT CAUSES CONFUSION OR MOOD SWINGS. eXAMPLE: IT IS LIKE SOMEONE WHO WOULD DRINK AN INTOXICATING DRINK, IT ALTERS THE MIND AND CAUSES A REACTION THAT THEY WOULD NOT OTHERWISE HAVE. THIS CONDITION IS CALLED HYPERPROLACTEMIA. SO THEREFORE I AM ALWAYS LOOKING AT MEDICAL QUESTIONS OR INFORMATION ABOUT THE PITUTARY,SINCE I HAVE A PITUTARY PROBLEM. MARY VANDEVER <HLMSV _AT_AOL_DOT_.com> HOUSTON, , TX. - Tuesday, May 23, 2000 at 22:47:23 I have just found this site. I was diagnosed with a pituatary tumor when I was in high school, I am now 25 years old. I have been trying to find a natural less medicated way of dealing with this problem. I have researched and researched all that there is to know about this and I know that there is much more to know. I am a Second Degree Reiki Practitioner and for those of you who would like to link up and try to find a much more natural way of dealing with this please contact me it would be great to hear from somebody who is willing to open themselves up to the possibilities.Thanks...Blessed be gigi pellegrini <www.gigistar_p_AT_yahoo_DOT_.com> wheaton , MD - Tuesday, May 23, 2000 at 19:08:20 I HAVE A PITUITARY TUMOR AND IT IS NICE TO KNOW THAT THERE IS A WEB SITE, FOR PEOPLE LIKE ME ANDREA MATOS <KITTY_540_AT_YAHOO_DOT_.com> NEW YORK , NY - Monday, May 22, 2000 at 18:55:19 I was told today that i had a rather large tumor in the right side of my thyroid gland.I also have my thyroid hormone level fluctuating from rather high, to rather low,TSH and T3. Donette P. Stephenson <purplepasshun_AT_hotmail_DOT_.com> clarksville, tn - Monday, May 22, 2000 at 17:23:00 My son, 15 is having surgery for a 1.9 cm non-functioning adenoma on June 2nd at Methodist Hospital in Houston. I have read many posts asking about links between these tumors and bipolar disorder and schizoprenia. My son went from being a respectful, honor roll high school student, to attempting to kill his family in a matter of weeks. Luckily the police took him to the e.r. instead of jail! The C.T. scan revealed the tumor. No doctor will admit there is a link between the tumor and mental disorders. But in my research I have learned that Jack Ruby had a pituitary tumor, along with the guy who killed all of the people from the tower at the university of Texas in Austin, along with other infamous people! I would like to hear of any others that have had these experiences. My son is doing fine pre-op on Risperdal, elavil, ativan, tegretol, and fioricet for headaches. Ruth <Maxhappens_AT_aol_DOT_.com> Tyler, TX - Monday, May 22, 2000 at 15:07:02 PITUITARY TUMOR 1976 EIGHT WEEKS OF RAIDIATION. NOW THE RAIDATION IS REACTIVATING AND CAUSING ADRENAL PROBLEMS. IT'S AMAZING WHAT THE TUMOR CAN DO TO A BODY. NOW I HAVE TO HAVE EYE SURGERY. WHAT'S NEXT. Carolyn Mooney <cbscam_AT_aol_DOT_.com> VISALIA, CA - Monday, May 22, 2000 at 14:12:34 Has anyone been through menopause with a prolatin-producing pit tumor? I am 50 and think I am starting menopause. I have had this tumor for 25 years, but only took medication for it during the last 2 1/2 years (dostinex). I had few periods during the years before dostinex. They have been very regular each month since dostinex. These past 3 months, the periods are getting farther apart and are lasting 17 days. I know my prolactin is normal (11), because I just had it checked last month. I will have an MRI in July to check the size of the tumor. Anyway, I was just wondering how having a prolactinoma affects menopause. Thanks. Linda <enonoh_AT_aol_DOT_.com> - Monday, May 22, 2000 at 09:48:22 Hi, I had a pit tumour removed this time last year, it was very successful, but I am still finding that my hormone levels, particularly prolactin, are still too high and causing problems. I have been on Dostinex which flattens the prolactin completely, has anybody else found anything which has helped their levels achieve a more natural balance? C.Irish <Caroline_irish_AT_hotmail_DOT_.com> Wiltshire, - Monday, May 22, 2000 at 06:23:45 first visit-not enough information. tank2662 <tank2662_AT_aol_DOT_.com> sacramento, ca - Sunday, May 21, 2000 at 19:22:56 This site helped me have clearer comphreension of aspects of the problem I have: a pituitary macro-adenoma, which will be surgically 'removed' next Monday (22/05/00) Jan Edson Leite <jerl_AT_openline_DOT_.com.br> Joao Pessoa, PB - Saturday, May 20, 2000 at 10:54:04 hi iam 38 soon to be 39, for a couple of years i have had pains in all my mucle area's. it seems to rotate through my body, the pain is greater through my upper legs, and lower calve area. it does travel all overt though at times, i have seen my neuroligist about this, he ran test and cannot seem to find an answer for it. the pain gets so bad some times, in my knees, it almost makes me fall down from the pain. i dont know what to do, or what test to ask for, but i do know the pain is real, and it is damming my life. anyone out there, that has the same pain, please talk me. lea shirk <miklea_AT_yahoo_DOT_.com> caterville, mo - Friday, May 19, 2000 at 05:20:05 I was curiouse if any one who has had surgery ever have any problems with migraines.After my second surgery I have been cursed with severe migraines.I can't tolerate most medications.My quality of life is ruled by these awful migraines.My only options are to go to the E.R.for an injection.Is there any one who has had some relief from either medications,biofeedback or any other remedy.I would greatly appriciate any sugestions.Thank you Ren'e <EYORENPOOH9962_AT_aol_DOT_.com> Salem, Va - Thursday, May 18, 2000 at 23:28:18 I was diagnosed with a pituitary tumor and was told I should not get pregnant. After each birth, I was admitted for a CAT Scan and after each pregnancy, the tumor was smaller. As of today, I show no signs or symptoms. Shirley Miranda <ihbf_AT_aol_DOT_.com> Satellite Beach, fl - Wednesday, May 17, 2000 at 11:23:15 I would really like to know. How do you determin that you should have surgery versus taking medication for ever. I feel like if we go to see a neuro surgeon, he will want to do surgery because thats what he does. Our gyno dr. even made the same comment. Karry <kkhsdrob_AT_aol_DOT_.com> ca - Tuesday, May 16, 2000 at 16:29:04 Hello everyone! How nice to hear from others. I was diagnosed with a prolactanoma tumor May of 1998. I then began taking bromocriptine. Eventually go up to 4 mg a day (That's 8 pills) I have since switched Dr. and am finding out the the normal 3 pills a day is not working and it is suggested I switch to dostinex. Since May of 1998 I have been able to give birth to a beautiful baby boy who is now 10 months old. I'm somewhat hasitant to switch med. because my husband and I would like to try for a second child soon. Is there anyone who has had experience with taking dosinex while trying to get pregnant? I'd love to hear from you. Thank You and God Bless! Sheri <pshm_AT_aol_DOT_.com> - Tuesday, May 16, 2000 at 13:04:35 We were having a problem tryibg to decide if our daughter should be seen by an endocrinologist or a neuro surgeon and thanks to the advise of Tom Oneal we have decided to have an evaluation from a neuro surgeon. I was just wondering if anyone else has been treated for a microadenoma by anyone other than a endo or neuro doc. Our gynocologist has been treating her and has not yet wanted to refer her to another doctor. she is 16 and has a 7mm. I would really like to hear from others on this. thanks so much. Karry <kkhsdrob_AT_aol_DOT_.com> ca - Monday, May 15, 2000 at 22:25:51 I would like to get more imformation on Pituitary tumors. I recently had blood work done at my dr.s office and it came back showing high in Prolactin. I do not understand much of what i have read. So, i would like some more imformation regarding this matter. I was told that it was nothing to worry about at this point, but seems as though they want to schedule a MRI it concerns me. Please send me any imformation that you think may help .... Thanks. shay <shay1017_AT_aol_DOT_.com> tx - Monday, May 15, 2000 at 22:10:39 I'm a 49 yr. old male just returned from Dr. and was told my prolactin level turned out high (66.1) testosterone was very lowermost limits of average range.He wants to run more bloodwork and recheck prolactin as well as ACTH, PSH levels before sending me to an endocrinologist or take an MRI.Mention of a possible tumor was made.Does this sound familiar? Anyone have any suggestions or info?I would appreciate any help it's difficult finding info on pituitary problems. homer <gpulz_AT_aol_DOT_.com> - Monday, May 15, 2000 at 18:03:22 Try www.rawfoods_DOT_.com it has helped many people. You will feel a lot better. I felt guilty reading all the posts and knowing a place you could go for help so I thought I should share on the grounds it may motivate a few to try it and they may tell others. If no one attempts it then atleast I offered it up and I don't have to feel guilty for not sharing. Naomi Naomi <naomi_AT_rawfoods_DOT_.com> Huntington Beach, ca - Monday, May 15, 2000 at 13:45:42 Has anyone heard about natural treatments (herbs, diet changes, homeopathy, etc.) helpful in controling prolactin levels or shrinking pituitary tumors? Know of any herbalists or homeopaths or other reputable professionals who have helped someone with a pituitary tumor? As I read about the treatment options (surgery & drugs) I am not excited about either. I would really appreciate any info on natural treatment. Thank you!! Wendy <kleem_AT_texas_DOT_.net> Austin, TX - Sunday, May 14, 2000 at 23:59:33 37 year old male diagnosed with Cushings will have surgery scheduled soon. Symptoms are weight gain, fatigue, high blood pressure, and decreased libido. After the surgery do all of the symptoms go away quickly. Do certain symptoms tend not to go away? What medication are men put on after surgery? Thanks Jack <jdean_AT_sc.rr_DOT_.com> Columbia, SC - Saturday, May 13, 2000 at 23:36:41 I have a pituitary tumor. After surgery in 1989, it is now about 2mm in diameter. I have been taking bromocriptine 2.5 mg t.i.d. I am trying to get pregnant and it has lowered my prolactin levels since May 1, to 56. Is it possible to become pregnant at that level, or does it have to be lowered? Please write me and fill me in on the information. Thanks. JULIA BEILSTEIN <SWEETVABREEEZE_AT_AOL_DOT_.com> ASHLAND, VA - Saturday, May 13, 2000 at 00:46:57 I am 34 years old and was diagnosed with a pituitary micro adenoma atlest 10 years ago. I never fully understood what it really was and today is the first time I found this sight. I have been taking Parlodell all these years. I was told by my endo to take it (believe it or not) vaginally and the side effects would be much less severe. I have had minor headaches over the years, but the biggest problem I've had is absolute exhaustion! To the point where I feel like I can't get through a single day without a 2 or 3 hour nap! None of my doctors have ever been able to tell me if this is from the Parlodell, yet there has never been any other reason for it. I am interested in finding out more about Destinex. My doctor didn't want to try it b/c he said the Parlodell had been working to lower my prolactin levels. Has anyone switched from Parlodell to Destinex and found their energy levels have improved? I would greatly appreciate hearing from you! Linda <Lindas65_AT_yahoo_DOT_.com> - Thursday, May 11, 2000 at 22:34:09 O.K now I'm really scared I have 3 children and i m 26 .For 3 years i have had to battle with haveing bipolar.To find out today i may have a pit tumor.I went for all the blood test not thinking anything was wrong.For my doctor to call me and say get in to the radiologist for a C.T scan.I dont even know what to do or say all I know is when I talked to my doctor he told my own husband that if i where his wife he would be very concerned.YOU GUYS I'M SCARED..Now im thinking pipolar may not be that bad my ct scan is for june 15 please pray for me as i will all of you jennifer <blaznbloomers_AT_aol_DOT_.com> las vegas , n.v - Thursday, May 11, 2000 at 01:24:09 i was diagnosed with a pituitary tum, during surg, rathkes cleft pouch cyst was discovered, no reoccurances, i see lots of info on rathkes cleft, no cleft pouch, is there a difference, i was told yes Lori Sweeney <cornlor_AT_bconnex_DOT_.net> Barrie, on - Thursday, May 11, 2000 at 00:41:49 My dad recently found out that he has a pituitary tumor. Looking for any info I can get. Tracie Marshall <tmag91_AT_aol_DOT_.com> - Wednesday, May 10, 2000 at 16:55:05 Does anyone visiting this website know of people with galactorrhea BUT normal periods? I have log had galactorrhea, though the prolactin levels come back "within normal limits". I then developed severe disequilibrium, headaches every day, pain near the kidneys (though serum cortisol is also WNL) and, most wonderful of all, a moustache; also, my testosterone is low (=no libido = no long-term relationship possible, though I'm only in my 30s - it's sad!). The MDs say "don't worry your pretty little head, if your prolactin comes back OK, and you have normal periods, you shouldn't be concerned, it's "just" idiopathic... I have been struggling to maintain some sense of composure for several years now, and would be grateful for comments from other readers. Thanks, Michele michele <multilingual_AT_accglobal_DOT_.net> ottawa, - Wednesday, May 10, 2000 at 14:40:49 Does anyone visiting this website know of people with galactorrhea BUT normal periods? I have log had galactorrhea, though the prolactin levels come back "within normal limits". I then developed severe disequilibrium, headaches every day, pain near the kidneys (though serum cortisol is also WNL) and, most wonderful of all, a moustache; also, my testosterone is low (=no libido = no long-term relationship possible, though I'm only in my 30s - it's sad!). The MDs say "don't worry your pretty little head, if your prolactin comes back OK, and you have normal periods, you shouldn't be concerned, it's "just" idiopathic... I have been struggling to maintain some sense of composure for several years now, and would be grateful for comments from other readers. Thanks, Michele michele <multilingual_AT_accglobal_DOT_.net> ottawa, - Wednesday, May 10, 2000 at 14:40:43 May daughter was diagnosed with a pit tumor at age 16 . She tried to take parlodel for 1 year before her Dr. found Destinex. She has now been taking Destinex for 3 years. She is 20 years old. Often it ha been difficult to tell if the moods are teen moods for pit tumor induced. The parlodel was just awful - nasea - vomiting - sleeplessness - sleepyness - in fact had a very hard time finishing her Senior year of high school. Destinex - has been wonderful - symptoms have subsided - moods vary - still worrie about the future for motherhood. I would strongly reccomend Destinex to anyone suffering from this inflection - Good Bless You! k K Moyles <Kmoyles_AT_PET.K12CA.US> PETALUMA, CA - Wednesday, May 10, 2000 at 12:54:15 I am 2 years post Cushing's Disease and had transphenoidal surgery at Mass. General. I did have some difficulty in that on the day I was supposed to fly home to Mesquite, Texas the doctor discovered I was leaking spinal fluid from the surgery site and I had to repeat the surgery again. 1/2 of my pituatary gland was removed due to a tumor that was down inside my gland. I still feel bad much of the time and am on Prednisone 4 mg. daily. I must say that I am better than I was 2 years ago, but nothing like I used to be. I have quit working and am not as physically fit as I once was. I still have trouble with names of people every now and then which does bother me a lot. My symptoms before I was diagnosed were: weight gain, memory loss, slow and slurred speach, muscle and bone aches all the time, I couln't get enough sleep, and my face was very puffy, and I carried my weight around my middle which is common for Cushing's patients according to my doctor. Ruthie Melton <RkayMelton_DOT_.com> Mesquite, Tx - Monday, May 8, 2000 at 23:26:16 On March 2nd I underwent an endonasal trans-spenoidal procedure to remove a functioning pituitary macroadenoma that resulted in the development of acromegaly. Blood work following surgery indicated that GH levels had been halved but are still much too high. A recent MRI revealed residual tumor that could not be safely removed during the operation. As this may still be secreting GH at unacceptably high levels, my endocrinologist has suggested that radiation and or medicinal treatment will likely be necessary to bring the situation under control. If there is anyone out there who has had or knows of a similar experience I would appreciate whatever information you may have concerning this subject. D. Harrison <aztec2_AT_webtv_DOT_.net> Villa Park , IL - Monday, May 8, 2000 at 22:23:23 I have been recently diagnosed through an MRI as having an enlarged pituitary gland and am scheduled for an MRI of the Pituary gland this week. Has anybody had a similar experience? M. Welch <NursMWelch_AT_aol_DOT_.com> - Monday, May 8, 2000 at 10:38:38 Hi, I am a 43 year old female. I was diagnosed with at prolactinoma in 1993. I stopped have a cycle and my breast began lactating. My gynecologist sent me for some blood work to check my prolactin level at this time. He was already suspecious of what it probably was. My prolactin level was high (cannot remember the level anymore). I was then sent for a MRI, which revealed my pituatary tumor. I had the transsphenoidal surgery the same year. It was not completely successful and I had to take parlodel to keep my prolactin levels in the normal ranges. I take 2.5mg. of parlodel a day. A half a tablet in the morning and the other half a bedtime. This is has been keeping my tumor from growing and my prolactin levels in normal range. I came across the guestbook of other people with pituatary tumors when I was trying to find out some of the side effects of parlodel. I did not even know that there were other medications out there besides what I was taking. I have asked my endocronolgist many times of weight gain and muscle aches, etc. It seems that most of the doctors in my area do not know much about the side effects from parlodel. The drug that most of the other patients are taking dostinex, sound like something I would like to know something about. Of course, I am afraid of switching to something else, since this seems to be working for me without many of the side effects others are experiencing. I wouldn't want to start a new medicine and have my tumor start growing again. Should I leave well enough alone. E-mail me if you can help. Nessa Barrois <NessaB56_AT_aol_DOT_.com> Buras,, La - Saturday, May 6, 2000 at 18:13:52 I had my prolactinoma removed 6 days ago. I was so anxious before the surgery because it was my first time--I couldn't wait to get it over with. I came home from the hospital 2 days ago and have been suffering from severe depression. I'm wondering if anyone else has experienced depression after surgery. Am I the only one who misses the dry mouth, the IV, the 20 cups of water per hour? I would really appreaciate it if someone answered me on this one. Thanks. Elizabeth Blackwell <djjazzyliz_AT_hotmail_DOT_.com> Dundas, ON - Saturday, May 6, 2000 at 15:34:39 just to talk to someone trying to have a baby with the condition Shauniko Smith <bdaddy1204_AT_aol_DOT_.com> Spring Lake, NC - Saturday, May 6, 2000 at 01:37:11 I was diagnosed with a pituitary micro adenoma approximately 12 yrs. ago. I take bromocriptine, 2.500MG tabs, 3 times per day. I also take Levoxyl, 50MCG once a day for hypothyroid. My doctor has not recommended surgery, however when my GYN had me experiment with me cutting back on my bromocryptine, my prolactin level went up. I usually don't feel well most of the time. I am always tired, I feel lethargic and like I have a virus all the time. I just went to the gyn yesterday and he is running some lab test. I would love to here from someone who has been diagnosed with a pituitary microadenoma and has been taking bromocriptine. I would like to know if my symptoms are common. I would love to start feeling normal again. Patty Burns <pattyaburns_AT_aol_DOT_.com> Richmond, CA - Friday, May 5, 2000 at 23:29:22 I have a prolactinoma, diagnosed in 1993. I am looking forward to more information on pituitary tumors. Karen Oshiro <oshirokm_AT_aol_DOT_.com> Honolulu, HI - Friday, May 5, 2000 at 18:41:52 Hi, I am a 24 year old wife and mother. I was diagnosed on march 4, 2000 with a Rathke's cleft cyst in my pituitary. It was a 2.0cm x 1.6cm x 1.5cm (marcoadenoma). It was also compressing my optic nerve. The only symptoms I had were two fainting spells exactly one month apart. I had a cat- scan and an mri done which revealed the cyst. Once it was discovered the nightmare began. I went to see many doctors with many different opinions. I was suggested to do a procedure called gamma knife by one doctor and I was also suggested to do the transsphnodial surgery by another doctor. I wanted to do the gamma knife since it was the less invassive of the two. After much research I discovered that the gamma knife was not the best choice for me since the tumor was touching my optic nerves. Unfortunitly I did not have the the choice to leave it alone. I had to make a decision and remove the tumor because it would eventually cause blindness. I was very scared of the transsphnodial surgery because I was aware of all the risks involved. I continued my research and looked for the best doctor in town. I contacted a neuro-optomologist which recommened me to an outstanding doctor who specializes in pituitary tumors. If any of you are in the South Florida area I recommend Dr. Linda Sternau at Mount Sinai Hospital in Miami Beach, FL. I had the transsphnodial surgery three weeks ago and am very happy to say that all went well with no complications. The tumor was removed completly and my pituitary is functioning normally. It was not as bad as I thought it would be. My suggestion to all of you who need the surgery is to find a neurosurgion who specializes in pituitary tumors. Make sure they do the surgery through your nose and not through your mouth. This has been a life changing experience and I have learned alot from it. I hope my story will help many of you going through similar situations. I am very thankful for this web site because when I was feeling very discouraged I found it and it gave me much comfort learning that I was not the only one out there with a pituitary tumor. I wish all of you the best of luck and if any one has any questions or concerns please feel free to email me. I would love to help in any way. God Bless ! Lisette Martinez <moem_AT_ibm_DOT_.net> miami, FL - Thursday, May 4, 2000 at 23:58:43 This is my second week of Bromocriptine. The first week I took 1/2 of 2.5mg at bed time on Tues. I had two days of alittle nausia and some headaches. This past Tues. night I went to a whole pill, yesterday i had baout the same feeling during the day,but Tues. night I had a bad night,a hard time sleeping . Today i've been worse, the headaches are worse and I've had stomach pain and sick stomach. Is this normal? I've read so many opinions ,I'm not sure. Penny <msparkysmom_AT_aol_DOT_.com> Brownsboro, TX - Thursday, May 4, 2000 at 23:14:46 A bi-polar person I know got thyroid cancer this year and had a thyroidectomy. Amazingly, this person now only gets thyroid/hormone replacement therapy and for the first time in life is completely unified mentally/emotionally. Bye-bye, bi-polarism. Medicare doesn't provide for monitoring the thyroids. THE DOG'S MIND by Fogler showed me how the human pituitary gland works. It's our limbic system!! I just discovered on this site the idea of neuroendocrine synergy. So why can't we have this synergy monitored as part of our health program from birth? It's not as complicated as medical pro's intimate. Before we put man on another planet, let us "masses" enjoy a more productive life on Planet Earth. Ethel Jean Saltz <nietgal_AT_airmail_DOT_.net> Garland, TX - Thursday, May 4, 2000 at 11:25:45 Dear All It's been over eighteen months since I have contacted this support site ! I thought it was time to revisit and catch up with old friends who have supported me through my diagnosis of a micronoma and my subsequent pregnancy. Well the good news is I now have a healthy 14 month year old. I was not on any medication throughout my pregancy and breastfed for twelve months. My checkup at the specialist about three months ago indicated that my tumour has grown from the original 6mm to 10mm and I am back on dostinex. Apart from a few headaches, I'm feeling good about life. Please feel free to email me with any questions regarding pregancy and dostinex. Looking forward to the Olympics !! Kirstyn <k_buhagiar_AT_hotmail_DOT_.com> SYDNEY, - Wednesday, May 3, 2000 at 22:48:23 none f. alexander <bizmom2000_AT_aol_DOT_.com> Va. Beach, va - Wednesday, May 3, 2000 at 19:39:57 I have a benign pituitary adenoma. The tumor is classified as "huge" and slow growing. I underwent surgery resection" in January of 98 as well as 28 radiation treatments. The tumor still very much exists and is still considered huge. Routine doctor visits are required as well as MRI's to track growth.>/b> mgilliam - Wednesday, May 3, 2000 at 16:32:43 I am glad that this site is here I just wish that I would be able to find out more information on what a pituitary tumor actually is. noelle files <noellefiles_AT_hotmail_DOT_.com> the colony, tx - Wednesday, May 3, 2000 at 13:08:22 Hi everyone. I have a 1.2cm prolactinoma tumor. Having the surgery on May 18th. Pretty nervous. Would like to talk to others about surgery, side effects, medications or whatever. My surgeon hasn't told me how long I'm going to be in the hospital or how long it takes to recover. So please mail me if anyone can give me the details about their experience. Thanks very much. Take care. Brenda Martell Age 27 <b-martell_AT_home_DOT_.com> Toronto, ON - Tuesday, May 2, 2000 at 20:01:21 I have Cushings Disease, first diagnosed in 1997. I had first transphenoidal surgery in Connecticut and was recovered for one year, then symptoms came back. I had 2nd transphenoidal in May of 1999 at the nat'l Inst of Health. Surgery was unsuccessful. I had bilateral laparascopic adrenalectomy at Univ of Conn in October of 1999, and gamma knife radiation at Univ of Virginia in Dec of 1999. I am doing ok now, although I sleep 12 hours a day and don't cope well with stress. Sue <SWGauvain_AT_aol_DOT_.com> - Tuesday, May 2, 2000 at 14:51:40 Is there any corralation to schizophrenia mavis bifano <mavisbifano_AT_home_DOT_.com> surrey, b.c. - Tuesday, May 2, 2000 at 01:18:16 looking for info on pituatary tumors and some side effects when removed macrland hawkins <machawk_AT_laol_DOT_.net> - Monday, May 1, 2000 at 23:47:14 just getting information about cortizol Cristina Clark <Pingo12_AT_aol_DOT_.com> san francisco, ca - Monday, May 1, 2000 at 20:27:40 I recently had a MRI for headaches and it was discovered that I have no pituitary gland. More blood work was taken but no results yet. I have an annual bloodwork check-up at my job and my thyroid results are always in normal range. Has anybody else heard about anybody's pituitary gland completely missing. Craig Burris <cburris_AT_juno_DOT_.com> Irving, TX - Monday, May 1, 2000 at 11:11:16 I am suffering with periferal vision loss due to the removing of my pituitary tumor. I find it hard to accept the fact that I can not drive and be as independant as I would like. I am 33 years old and have been living with this since I was 18. Noreen De Lacy <NorNor07_AT_aol_DOT_.com> White Plains, NY - Monday, May 1, 2000 at 07:55:33 I have a friend who has this dreaded problem, would like more info on this. Jeanne M. Anderson, LMT <msjmanders_AT_aol_DOT_.com> jacksonville, fl - Sunday, April 30, 2000 at 19:35:22 I was diagnosed with a pituitary microadenoma when I was 23, a little over a year ago. I had been showing signs of the tumor (lactating) for over six months. I had no idea that I had anything wrong. A close friend found some information on the condition and pased it on. After I was diagnosed, I was put on Parlodel. This caused my BP to rise and I would become extreamely dizzy. My doctor then put me on Dostinex 2x/wk. This brought my prolactin levels back down to normal. Although I was very lucky, I will still need to monitor this for the rest of my life. I believe more information and support needs to be available. Until I found this site, I felt like a sort of freak show. The openness everyone shares on this site is so informative and comforting. I hope all your bloodwork, MRIs, and CT scans pay off. Each and every one of you will remain in my thoughts. Jenny <jhatc_AT_oh.freei_DOT_.net> Urbana, Oh - Sunday, April 30, 2000 at 18:40:57 I have been doing quite a bit of research on Pituitary Tumors for my own personal knowledge although I am sure that my doctors know best. I found an interesting site from the American Brain Tumor Association. They will send information on procedures, statistics, tumor definitions etc. I found it to be very educational. I want to learn as much as possible about this condition and I guess that is a part of coping and acceptance and the will to keep fighting. I will keep all of you in my prayers. Marian <Ptsbstfrnd> Pa - Sunday, April 30, 2000 at 00:36:35 I am writing this simply as a comment to the many people who have posted messages saying they are receiving medication for pituitary tumors. Numerous studies have shown that the success of pituitary tumor removal by surgery, usually transsphenoidal, is increased greatly if the tumor is ``virgin,'' meaning that no medication or radiation has been applied to the tumor prior to surgery. I have to agree with this. I had a 3 cm acromegalic tumor removed by an excellent neuro/endo team in 1991. It was a ``virgin'' tumor. Since surgery, I have required no medication, no radiation and all blood work since the surgery has been fine. Medication and radiation are needed if the tumor is nonoperable. If an operation is indicated, however, please be careful of medications and radiation. They might treat the symptoms but not the cause. Best wishes, Tom O'Neal. Tom O'Neal <oneal_AT_coastalnet_DOT_.com> Atlantic Beach, NC - Saturday, April 29, 2000 at 23:34:47 HI MY NAME IS CINTHIA I'M 23 ABOUT 3 MONTHS AGO I WAS DIAGNOSED WITH A MICROADENOMA 4MM IN SIZE MY DOCTOR SAID SHE ISN'T WORRY UNTIL IT REACHES 10MM IN SIZE. I ALSO HAVE HYPOTHYROIDISM FOR ALITTLE OVER TWO YEARS I HAD BEEN TAKING .125 LEVOTHYROXIN MY DOCTOR NOW HAS ME TAKING .150 FOR SIX DAYS OUT OF THE WEEK THE MEDICATION HAS ME EXTREMLY ANXIOUS AND EDGY AND HAVE TROUBLE SLEEPING OR SOMETIMES ALL I WANT TO DO IS SLEEP.MY DOCTORS INSIST THAT IS THE SAME AS TAKING .125 EVERY DAY( IT SURE DOESN'T FEEL RIGHT) IF ANYONE HAS MORE INFO ON LEVOTHYROXIN AND ON MICROADENOMAS PLEASE WRITE ..... THANKS CINTHIA ADAMS <lareinadelhielo_AT_aol_DOT_.com> daleville, al - Saturday, April 29, 2000 at 17:52:55 I am a 34-year old woman who was found to have high prolactin and a pituitary adenoma about two years ago. I take 2.5 mg of Parlodel a day and have had no problems. My doctor, though, is very vague when I ask him about this condition. Does anyone know whether this is something I will take every day forever, or should I be concerned? I had a brain aneurysm when I was 11 and have metal clips in my head, so I cannot have an MRI. They did confirm the adenoma with a CAT scan, but I understand those aren't as precise. I really just wonder what exactly I have and how serious it is. Thanks for any information. Tiffany <tdandmd_AT_aol_DOT_.com> Danville, CA - Friday, April 28, 2000 at 13:06:14 Hello all my fellow sufferers ! I ahve been through hell and back for the past two years and my fights is still going. Was diagnosed with a Tumor in October 99 and am currently on Dostinex 250mg 2 x a week. I have would love all info that anyone may have so that I may further my education on pituatry tumors. Also does anyone know of a pituary foundation here in the U.S. ? If so could you please let me knoe about it. I would like to start a support group here in the Long Beach, CA region and possibly grow Nation wide! I have so many ideas for fund raising for more research for this pituary disorders. There needs to be nation and indeed world wide educaton and recognition so that the millions of us that are suffering and indeed those that don't even know it can have a more fullfiled life. As our lifes at present with the way the world sees (Or should I say does not see) our condition is appauling and I'm ready to fight for the respect and attention that we deserve. I look forward to hearing from you. - Keep safe and remember to rest and don't stress out that's the worst thing to do. saleika jade <saleikajade_AT_Hotmail_DOT_.com> Long Beach, CA - Thursday, April 27, 2000 at 18:37:39 I have been diagnosed with microadenoma on my pituitary JACKIE D FAULKNER <fjfaulk_AT_peoplepc_DOT_.com> Ozark, Al - Thursday, April 27, 2000 at 11:08:16 I have had both Adrenal glands in 1974, a Pituitary Adnoma removed(transphenoidal)in 1981at Mass General, and radiation treatment after the adnoma . I have been on steroids since 1974. If anyone has any questions please feel free to e-mail me. sherry podobed <podofam_AT_aol_DOT_.com> columbus, nj - Wednesday, April 26, 2000 at 21:03:08 Hi all, I just had my prolactin checked, and it is still in the normal range thanks to Dostinex. It had been as high as 156, but is now 11. I am only taking .5 mg of Dostinex a week (half a pill on two days a week). My endo did say that if I ever stopped taking it, however, the prolactin would shoot up higher than ever, and the tumor would begin growing faster than before. That's the irony of Dostinex--if you take it, you probably have to take it forever. I'm just glad my tumor responds to such a small dosage of it, and I have no side effects from the medication. Good luck to all. Linda <enonoh_AT_aol_DOT_.com> - Wednesday, April 26, 2000 at 10:33:18 I am a 56 year old male tenor saxophonist who was born and raised in Seattle and am now living in Florida. I have just experienced pituitary failure, and it is suspected that this was caused by a tumor on or near the pituitary gland. I am presently taking Levothyroxine and Prednisone, but nothing more until I see the neurosurgeon and neuroendocrinologist. I have an appointment at Shands Hosptial next week, perhaps this week if they can squeeze me in. The surgeon is quite famous in his field and I have the utmost confidence in him. Three years ago he performed a craniotomy for a brain aneurysm. They cut a little window in you head and go in and wrap a weak vein with a metallic substance. It sounds very gruesome but wasn't too bad, though I wouldn't want to do it again. I recovered without complication and resumed my old life. What is significant is that I cannot have an MRI because the magnetism might move the metal clip on the vein in my head. THe tumor was found through a cat scan and is located behind the clip. When I read the accounts on this forum, I become very discouraged. Can anyone explain the differnces between gamma knife surgery, radio proton, or transphenoidal? Also, I read wrhere in some cases they go through the lip. I can't figure that out, but I am a saxophonist and that is out for me. I was hoping that I could be treated with drug therapy but that sounds worse. Side effects of gross obesity, hair loss, chronic fatigue, depression, mood swings? Is this the most I can hope for? I am 57 years old now. I would rather just live a few years more as I am and throw myself off a high bridge than live 20 more years as an artificial man, with chemical moods, and with a personality I don't recognize, that my friends don't recognize. I would rather live as me for a short time than as someone else for a long time. Anyway, if anyone can help me prepare some questions for the neurosurgeon and neuroendocrinologist, I would mot grateful. God be with all of you, Lea Macquarrie MMacqu2070_AT_aol_DOT_.com Lea Macquarrie <MMacqu2070_AT_aol_DOT_.com> daytona beach, FL - Wednesday, April 26, 2000 at 08:39:37 El - there is a research project in progress with Henry Ford Hospital in Detroit, Michigan for Pit Patients. Contact Teresa at Sully_AT_ismi_DOT_.net for the details. Lori Lori <ToMajestic_AT_aol_DOT_.com> MI - Tuesday, April 25, 2000 at 22:20:26 DOES ANYONE KNOW OF A RESEARCH PROGRAM GOING ON FOR PEOPLE WITH PITUITARY TUMORS? I WOULD POSSIBLY BE WILLING TO TAKE PART IN ONE. I LIVE IN NH. El <Nhejf_AT_aol_DOT_.com> NH - Tuesday, April 25, 2000 at 22:12:41 I am a 32 y/o female who was diagnosed with a microadenoma pituitary tumor at age 24 when trying to get pregnant. I have had blood work and MRI's done, however have not kept up with them. My question is: does anyone know about a connection between the pituitary tumor and kidneys spilling calcium. I have heard through the grapevine that there can be a connection but this is all I have heard. Thank you. El <Nhejf_AT_aol_DOT_.com> NH - Tuesday, April 25, 2000 at 22:07:58 I am 41 yrs. old and eas just told last week that I had a pit. tumor over the phone. I had a MRI 2 weeks before, andI won't see the doctor to explain anything to me until the 15th of May.(this is the VA, also) Anyway this site has been very educational, and scary, too.But now I know more and most important, I know what to ask the doctor. Thanks Penny <msparkysmom_AT_aol_DOT_.com> Tx - Tuesday, April 25, 2000 at 20:41:58 I added to the guestbook back in March. At that time I was told that I was going to have to have surgery. I met my new Endo/Neuro's on Monday and was quite anxious to hear my results. I was told transphenoidal surgery prior to the appointment and now they are saying that they are going to try to doubling the medication and if that does not work within the next month, I will have to get radiation due to the tumor being connected to the carotid artery. The doctor told me that I could lose my vision and that other organs would be affected. The tumor measures 1 cm. Has anyone gone through this? Is it ever too late to resort to surgery instaed of radiation? The new doctor that I met was not very personable and I believe I am going for a second opinion because I do not have the confidence in him that I need to get through this. Does anyone know of an Endo with experience and knowledge in Pit Tumors near the Harrisburg area? I truly trusted the Endo that I had in NC at Wake Forrest. Now I feel panicked. Thanks Marian <Ptsbstfrndmar_AT_aol_DOT_.com> Pa - Tuesday, April 25, 2000 at 17:32:49 I have one! Mark Villa <markvilla_AT_knology_DOT_.net> CHARLESTON, sc - Tuesday, April 25, 2000 at 07:49:10 I had a 2cm nonfunctioning pit.tumour removed 2 years ago transsphenoidally. Although there is still some residual tumour that they are unable to remove due to proximity to the carotid artery I am pleased to report that there has been no new growth indicated by my most recent MRI. I have been feeling great this past year aside from the last couple of weeks worrying about the annual visit with the neurosurgeon to discuss MRI results. It seems that nonfunctioning pit. tumours are slow growing and that annual MRI's will certainly alert the "team" before it gets too big. I am pleased to say that I can now follow the MRI and distiguish where the tumour is, where my pituitary gland sits, and the optic nerves . My advice to anyone going through any type of pit. tumour is to read up on your particular tumour , write down questions before your Dr. visit, write down the answers before you leave, and foremost take along an advocate that can look after your best interests. My husband was able to listen objectively and hear things that I missed out on. As I move along this journey,I am trying to stop frequently to smell the roses. Cynthia <jcmacd_AT_telusplanet_DOT_.net> Edmonton, AB - Tuesday, April 25, 2000 at 01:39:50 I'm 41 years old and I've just been told I have a tumor on my pituitary gland, I don't have any other information, and I won't until the middle of May. I go to the local V.A. hospital for treatment. The doctor called me to tell me the news and she wants me to start taking Bromocriptine . I'm pretty scared, but I do know that I'm not the one in charge,and He has a purpose for this situation. He promised He would not put anything on me that I could not handle. I pray that through this someone will see Jesus in me. Penny <msparkysmom_AT_aol_DOT_.com> Tx - Monday, April 24, 2000 at 23:58:55 Two years ago I was diagnosed with a tumor on my pituitary gland. The tumor had grown and attached itself to my optic nerve, and because of that when my doctors removed the tumor I lost my periphreal vision to my left side. I was wondering if anyone knew of any procedures to help me regain some if not all of my vision back. Suzanne Leathers <Skisuzy_AT_aol_DOT_.com> Vestal, NY - Monday, April 24, 2000 at 22:10:12 MY FRIEND HAS HAD ALOT OF TUMORS AND I WAS WONDERING IF I HAD SEX WITH HIM WOULD I GET ONE TRINITY ANN BROOKS <DADDYS1TRINITY_AT_AOL_DOT_.com> SWEETWATER, TN - Monday, April 24, 2000 at 16:54:38 I am a 44 yrs. old female and I have a pituitary tumor. I am taking the durg Parlodel and it causes me to get spots on my skin and I am losing a tremendous about of hair. It wasn't until I visited this site (just today) have I learned so much about my condition in such a short time. This is a very interesting and informative site. I will continure to visit. To all of you, take good care of yourself and may God bless! I Ceola Jackson <Jackson.Ceola_AT_epa.mail.gov> San Fransico, CA - Friday, April 21, 2000 at 17:46:10 My husband has been battling an ectopic pituitary tumor for a couple of years. He has been taking Parlodel. The doctor recently upped his dosage. He sleeps all the time and has no energy. Every site I go to talks about women and prolactinoma, not men. Men get them too! If anyone can help please email me. I have lots of questions, Charlot Charlot <charlot_AT_btechdesign_DOT_.com> Alexandria, LA - Friday, April 21, 2000 at 11:19:44 ANY INFO WILL BE GREATLY APPRECIATED. MY GRANDSON IS 4 YEARS OLD. HE WAS JUST DIAGN. YESTERDAY WITH 2 TUMORS IN HIS PITUITARY GLAND. HAS ANYONE OUT THERE HAD ANY EXPERIENCE WITH A CHILD AROUND THIS AGE COMMING DOWN WITH THIS PROBLEM? THE DR.S' DON'T EVEN KNOW YET IF IT IS CANCEROUS OR NOT. WE KNOW NOTHING ABOUT THIS. HIS ONLY OBVIOUS SICKNESS RIGHT NOW IS DREADFUL HEADACHES AND SOME VOMITTING. THANK YOU, FROM GRAMA POOD POOD <PAULMARK35_AT_AOL_DOT_.com> MARYSVILLE, WA - Friday, April 21, 2000 at 01:34:31 Hi, does anyone knows an endocrinologist in New York who handle workers compensation or Long Term Disability forms. I have a high prolactinoma and on total disability. Please email at caidor_AT_yahoo_DOT_.com jj <caidor_AT_yahoo_DOT_.com> Queens, NY - Thursday, April 20, 2000 at 22:44:56 I was diagnosed with a Prolactinoma on 10/18/94. Had surgery in March 95, followed by radiation. Take Parlodel and hormone replacements. In general, it has been a good experience. I'm always happy to answer questions. Feel free to e-mail me Bryan <BKean10_AT_aol_DOT_.com> Kirkland, WA - Thursday, April 20, 2000 at 16:02:59 I'm confused on my IGF-1 test results. Some doctors say it is elevated and other's say it is normal. It seems that labs have differnet normal values. Does anyone know what the normal IGF-1 levels for a 39 year old female really are?? Michele <mmtraum_AT_mindspring_DOT_.com> Rochester Hills, MI - Thursday, April 20, 2000 at 11:10:19 Hoe do I find a defination of Microadenoma and the latest treatment? Thank you. Javad Abdollahian, M.D. <Abdolian_AT_aol_DOT_.com> Radnor, PA - Thursday, April 20, 2000 at 09:52:46 i am experiencing a recurrence of cushings disease. in 1993, i was diagnose with cushings, a tumor on my pituitary gland. i had transphenoidal surgery which was successful. now, seven years later, my symptoms have recurred. mri's and ct scans did not pick up a mass tumor, however, the petrosal sinus sampling test did confirm my cushings was back and that i had bad cells growing on my pituitary. i had transphenoidal surgery again in dec 1999, mostly an exploratory surgery, which was unsuccessful. the plan of treatment now is to have mild radiation on the pituitary to prevent the bad cells from growing, and to have my adrenal glands removed to stop the symptoms. i will then be on hormonal replacements for life. if anyone is or has experienced a similar situation, please feel free to email me, i'd love to talk. michele allison <lallison_AT_sprint.ca> halifax, nova scotia - Wednesday, April 19, 2000 at 18:29:51 Hi, everyone.....I last wrote on 4/2 regarding my 32 yr. old daughter with 5 little boys. What the drs. had thought was breast milk causing discomfort and lumps may now be more serious....a new dr. will be doing a biopsy either 4/24 or 4/26. He is quite concerned about a malignancy (I can't even believe I am able to type that dreaded word). I ask you all for your prayers for Dawn; rest assured, I have been praying for all of you since I found this site.....every day! Please be vigilant about your conditions, and if you feel you aren't getting the right answers, go further! I wish you all the very best and send a special thanks to those of you who have written with info and encouragement. Sincerely, Dale Dale Vani <dalevani_AT_aol_DOT_.com> - Wednesday, April 19, 2000 at 17:10:32 first visit to your site, have acromegaly. I am london, england area co-ordinator and membership secretary for Pituitary foundation england. hello. mike stevens <mike_suehome_AT_hotmail_DOT_.com> london, - Wednesday, April 19, 2000 at 16:59:30 I want to education myself to this type of tumor. Because I was diagnosis in having it. And right now I am a little ignorant to this subject matter. Any information you could send would be greatly appreicated. Valorie Brown <ddiamondvb_AT_aol_DOT_.com> Alexandria, VA - Wednesday, April 19, 2000 at 10:04:10 I just found out I have prolactinoma and my Dr. put me on Dostinex. I have read quite a few postings and see it being mostly a female problem, if there are any men out there with my same problem I sure would like to hear about your expierence, thru. an e-mail. Thanks Mike <mxjx_AT_aol_DOT_.com> Apex, NC - Tuesday, April 18, 2000 at 15:27:16 Joyce, How skilled was your nurosurgeon? How many surgeries has he done? Most people come through the surgery with no problems. The dr that told you that you would be sterile to is wrong! I know a woman on total hormone replacement for no pituuitary gland who has a healthy baby. Does you endo no anything about pituitary tumors..Even if it is Georgitown. Take care, Sue sue - Monday, April 17, 2000 at 22:40:43 I had a pituitary tumor in 1982. I had the surgery at Georgetown University Hospital in Washington, DC in June of 1982. Every complication you could imagine happened to me. I was in the hospital for 2 months. I was paralyzed on the left side, lost peripheal vision in both eyes, developed a CSF leak which resulted in meningitis and a second brain operation to close the leak. I have been on a tremendous amount of medication and will have to continue it for the rest of my life. The weight gain is a terrible side effect of this tumor. I was lucky to already have 3 children when the tumor was discovered, so I wasn't disappointed when I learned the surgery would make me sterile. I was diagnosed with fibromyalgia in June 1999. Is there a connection? joyce <jah21253x3> Annandale, va - Monday, April 17, 2000 at 20:49:16 Hi I was diagnosed with cushings syndrome in 1993.I was a athletic male 5' 9" 185. My weight gain over 7 yrs was up to 355 lbs. Since it took such a long time to diagnose the it caused several medical problems. I spent 3 months in a research program in New York Hospital (Cornell University )After 3 months I had surgery on my pituitary gland. It took about 2 years for my pituitary to work again. I suffered from diabetes, high blood pressure, osteoporsis,weak muscles,trunkal obesity, ulcers om my legs & tongue. So far everything is better except I lost 4" of height do to compression fractures in my spine, i suffer from severe back pain.I still have osteoporsis, high blood presure, & my weight is down to 250. If anyone has any questions feel free to contact me.LennyA13_AT_aol_DOT_.com Lenny Antonelli <LennyA13_AT_aol_DOT_.com> Staten Island, NY - Monday, April 17, 2000 at 14:00:47 I am 30 and have a pituitary tumor and have several side effects from it that concern me. I have severe dizzy spells and loose my balance. I hope to conceive soon, can someone please e-mail me some info. please.... soon Terrie <Alrosebuds_AT_aol_DOT_.com> Hueytown, al - Sunday, April 16, 2000 at 13:39:16 I have been greatly depressed lately, very tired and when I visit this site, I get scared because i think I have been in denial about the seriousness of this tumor. I was diagnosed 7 years ago, I have a 3 year old son who is perfectly healthy, and for the past 9 months or so i have not taken any medication because i have no medical insurance. I was on Dostinex which seemed to work better then Parlodel and Pergolide. I have terrible mood swings, and I hear most you talking about weight gain, I have lost a tremendous amount of weight and I don't know why. Anyways, thanks for a great site and I'll keep coming back. I needed to know there are more people like me. Veda <onekidisenuf_AT_altavista_DOT_.com> CA - Saturday, April 15, 2000 at 22:24:27 I am interested in becoming a neurosurgeon and I would like information about it please. Thanks Amanda McDaniel <BlondeRogue_AT_aol_DOT_.com> Bryan, TX - Friday, April 14, 2000 at 00:13:26 I HAD A BRAIN TUMOR ON MY PITURARY GLAND WHEN I WAS 12 YEARS OLD AND NOW I AM 32 YEARS OLD WITH THREE CHILDREN AND PERFECTLY HEALTHY THANKS TO MASS GENERAL SURGERY TEAM MICHELE CHAREST <CHAREST61_AT_AOL_DOT_.com> KOKOMO, IN - Thursday, April 13, 2000 at 21:15:29 Hi everyone I was wondering if any of you who had a pituitary adnoma experienced any joint or muscle pain due to fibromyalgia or rheumatoid? If you do or had any of those diseases I would like to hear from you. Please email me! Ada Saunders <adasaunders_AT_hotmail_DOT_.com> Springdale, Nfld - Thursday, April 13, 2000 at 10:39:29 Can anyone tell me how to find information about Partial Empty Sella Syndrom? Thanks! Kim Roman <KSRoman_AT_aol_DOT_.com> Herrenberg, - Thursday, April 13, 2000 at 03:18:15 This is a very difficult letter for me to write because I am just beginning this process of determining if I have a pituitary tumor or not. I have had at least one million blood tests, all results were normal with the exception of the one for prolactin levels. I have not been told what my number was, all I know is that it was high. Today, April 12, 2000, I had my first MRI completed and I get the results back hopefully on Friday, April 14, 2000. This has been a very scary experience because I have never been seriously sick before. In fact, I have never been in the hospital for any reason. I have so many questions but I do not know where to start. In part this is because all of this has happened within the last two weeks and I have not had time to catch my breath. Until I have specific questions I will continue to read the comments submitted to the guestbook. For any of you currently going through this process, is there any extremely important I need to know or ask my doctor at this early stage. Thanking you in advance for your kindness and assistance. Stefanie Columbus, Oh - Thursday, April 13, 2000 at 00:36:21 hello i am looking for information on gigantism, any help would be very apperciated i am trying to help[ someone out with this condiction he is along and would like to find others with same thing so please could you help me ROLAND roland <rrg17697463861_AT_aol_DOT_.com> auburn, ME - Thursday, April 13, 2000 at 00:10:11 I'm on dostenex for my pituitary tumor. All I do is itch with this drug. I was on parlodel, and could not tolerate that drug too. Anyone out there going through the same thing? Katherine Turner <jturner7_AT_uswest_DOT_.net> Colorado Springs, CO - Wednesday, April 12, 2000 at 22:41:54 our son max is 7 years old,5 months ago we found out he has a germinoma,he has had his radiotherapie and his hypofyse is damaged,does anybody has some experience whit this? trapman <j.trapman_AT_planet.nl> driebergen, hl - Wednesday, April 12, 2000 at 17:19:56 I have a question. For those of you that have had the surgery on these tumors, what made you doctors finally decide to do the surgery. I have had this tumor for 3 years and my doctor wont touch it. I have gain in excess of 100lbs. I dont know what I can do to convince her to do it. I just want my body and life back. Thanks for the support. Shawna <CaliGirl030675_AT_aol_DOT_.com> Lompoc, CA - Wednesday, April 12, 2000 at 15:20:33 Great site and good source of therapy. Writing about it helps sometime. Thanks again and God Bless. Vanessa Gladney <RelivShaker_AT_aol_DOT_.com> Melvindale, MI - Wednesday, April 12, 2000 at 10:45:36 Have been diagnosed with a prolactinoma. Having been taking a medication called Parlodel. Have been feeling depressed and am wondering if this is a side effect. Also, Cannot seem to loose weight. Marlyn Shafritz <Bucksvall_AT_aol_DOT_.com> Collegeville, PA - Tuesday, April 11, 2000 at 21:30:46 Please explain guest book Terie Crain <Alrosebuds_AT_aol_DOT_.com> Hueytown, Al. - Monday, April 10, 2000 at 18:13:11 daughter has 7mm microadenoma with high prolactin Karry <kkhsdrob_AT_aol_DOT_.com> CA - Monday, April 10, 2000 at 14:44:38 I've been living with a pituitary tumor for over 7 years..i currently have no medical insurance and was wondering if anyone has any samples of Dostinex. Please email me. Thanks! Veda <onekidisenuf_AT_altavista_DOT_.com> - Monday, April 10, 2000 at 01:13:10 Headaches could be from hormonal imbalances. They aren't always tumor size related. What are you hormone levels doing? pj - Sunday, April 9, 2000 at 22:53:33 i have a brain tumor but the doctors says it is the size of a pea. so why do i keep having bad, headaches. at least 3 times out of a week. chandra <003alesus_DOT_.com> - Sunday, April 9, 2000 at 19:15:23 I just found out Dostinex is over $25.00 a PILL. Anyone else paying that kind of CRAZY amount?? karin karin <kfstarcatcher_AT_aol_DOT_.com> CT - Sunday, April 9, 2000 at 15:29:25 my mri shows i have a arachnoid cyst. im 37 and have had symptoms of nausea and disorientation for many years. Ive been unable to work full time, live with my parents and feel im not getting any better. Drs all said it was my chronic fatigue synd. loaded me with meds and still i knew it was something else. I asked for an mri and there was this huge mass. One dr. says no way would he take the chance,its too risky. I am going to see a neurosurgeon on 4-20. Can you please explain the risk for this surgery? DeeDee <> scottsdale, az - Saturday, April 8, 2000 at 19:04:16 My cousin was diagnosed with a pituitary gland tumor so im learning more about it Jenny - Friday, April 7, 2000 at 23:08:17 i had a sudden, partial, loss of vision in my right eye about three months back. it went down to about 20/400. when i try to read anything with my left eye closed, i cant see anything where i am focussing and to the right.left eye is almost okay at 20/40, but that too has some blurred spots. initially there was not much eye-ache or head ache. after that my right eye started getting achy and it would give me a headache in the right side of my head - not very severe. there was no regular point of time when i would get this. some times it used to disappear after a nap/sleep. when i got theis vision problem first, my doctors thot it was a reaction/side-effect of a TB drug (ethambutol) i was taking for 8 months till then. during a recent visit to my eye/retina specialist, they did a visual field test and asked me to go for an MRI. and obviously, they have got me scared to death. I would like to know if my symptoms are typical of a pitutary or brain tumor . in my last eye exam(done the same day as the visual field test), my vision has improved to 20/80 in the right eye (even though i dont find such a substantial difference) and left eye is still at 20/40. i dont have any headche these days (last 7-8 days)...atleast for last 8-10 years i used to have chronic sinus problems...i have not put on any weight...it had been almost steady for last 1-2 years. any response would be greatly appreciated. please email me at svg70_AT_yahoo_DOT_.com shan vegy <svg70_AT_yahoo_DOT_.com> MLPS, MN - Friday, April 7, 2000 at 19:17:57 I came down with a real bad case of the flu in December. I went to the doctors and the usual was prescribed - rest, fluids etc. The flu continued to get worse - nausea, headaches, extreme dizziness. The doctor then put me on an SSRI as he said anxiety was making my symptoms worse. 3 months later and 5 different SSRI's and I'm still having severe headaches and dizziness. I've seen an ENT and a neurologist - had a tilt test, all kinds of blood work, etc. When I'm not taking the SSRI's the symptoms are not as bad - mild headaches and occaisional dizziness. The neurologist said the virus prob. spread to the mengies in my head. The ENT said everything looks ok. All blood work and tests are normal. The dizziness and headaches are still here, only made worse by doctors prescribing SSRI's. When on SSRI's I felt like my head was going to blow off, as well as extreme dizziness, and trouble with my eyes........ yet the docotrs keep on trying to treat me with them........ Steve <steve01821_AT_aol_DOT_.com> Billerica, MA - Friday, April 7, 2000 at 15:39:30 I HAVE A PITUTARY TUMOR AND WOULD LIKE SOME ANSWERS TO SOME QUESTIONS. FELICIA HAYWOOD <F820_AT_AOL_DOT_.com> CHICAGO, IL - Friday, April 7, 2000 at 13:37:07 Had pituitary Tumor removed surgically 01/11/78 Has grown Back now taking Dostinex. Are there any adverse side affects (Dostinex) Anita Heller <AnitaH53_AT_AOL_DOT_.com> Maple Falls,, WA - Friday, April 7, 2000 at 10:39:57 With all my best wishes to the founder of this web. I would like to send some of work observations a bout the pituitary tumor, please patients try to avoid the following 1-aged food 2- allergic food 3- allergic diseases4-prolong use of medication5-prolonged sleep 6-prolonged sun exposure7-prolonged fasting8-fatigue9-and nervousness as well try as much as possible to avoid the compination of all of the above restrictions with all my best wishes to all pituitary tumor patients with long happy life. do not hesitate for any kind of help even over seas. Dr Nedal Barakat E mail nedal-kemco_AT_usa_DOT_.net Dr nedal Barakat <nedal-kemco_AT_usa_DOT_.net> Amman, - Friday, April 7, 2000 at 10:02:05 Our 18 yr old daughter was diagnosed with a pit tumor and acromegaly on Tuesday. We are seeking information regarding gamma knife, radio protron, and transsphenoidal surgeries and personal experiences. If you can respond it would be greatly appreciated, this whole situtation is very overwhelming and I know time is an important factor. Thanks for your help! Winny Winny <konrad_AT_wpt_DOT_.net> Billings, MT - Friday, April 7, 2000 at 02:36:22 We got the results of my daughters MRI on Tuesday and she does have a pit tumor, diagnois acromegaly. We would appreciate any personal experiences regarding gamma knife surgery, radio protron surgery, and transsphenodial surgery. My daughter is 18 and we are seeking to gain more knowledge to make the right choice. Thanks, Winny Winny <konrad_AT_wtp_DOT_.net> Billings, MT - Friday, April 7, 2000 at 02:28:58 We got the results of my daughters MRI on Tuesday and she does have a pit tumor, diagnois acromegaly. We would appreciate any personal experiences regarding gamma knife surgery, radio protron surgery, and transsphenodial surgery. My daughter is 18 and we are seeking to gain more knowledge to make the right choice. Thanks, Winny Winny <konrad_AT_wtp_DOT_.net> Billings, MT - Friday, April 7, 2000 at 02:28:11 I am looking for someone who has had gamma knife radiation. I had gamma knife done in May of 97 and think I am just now experiencing a side effect from it. A doc and NYU says it is not a side effect. However, I have done some research and it is not totally out of the question. My side effect is hair loss. Anyone who has had a similar experience or know where I can find some good info please email me. Thanks Candice Cadena <cankcad_AT_yahoo_DOT_.com> College Station, TX - Thursday, April 6, 2000 at 13:04:43 I was first,and finally, diagnoised in 1988 after 4 years of going to doctors for unexplained breast lacation, and migraine headaches. Their diagnoised was a "pituitary adenoma" by one doctor and a "Rathkes Cyst" by another...I guess they are not exactly the same thing???? I dont know, and I dont think my doctors did either. I went for a follow up MRI in 1991 by a different doctor who "didn't think" it had grown any. Said it was probably just something there since birth and to not worry about it. 1993 I had some basic hormone test done, and found my Cortisole level was wayyy above the "normal" for the highest high. When I asked my doctor what that ment,and what cortisole does...he blew it off as nothing. Nothing LOOKED wrong with me,and he said it didnt seem to be affecting me in any bad way so it was nothing to worry about.I have had no treatment of any kind since then. I am now starting into the process of getting it re-checked. Other medical problems I have had are Endometreosis, a Ruptured Ovarian cyst,and problems with my pregnancy that I feel were related to my pit. tumor. Also currently I can NOT take ANY form of the Birth Control Pill as my migraine headaches and vision problems increes dramatically!! If anyone would like to chat, please feel free to e-mail me. Cathie <TheVintageLife_AT_aol_DOT_.com> Las Vegas, NV - Thursday, April 6, 2000 at 05:33:47 Please scroll down and read my entries from March 10th and March 28th before reading this one. I went to an Endocrinologist last week and had some blood and urine tests done. All were normal except testosterone level was slightly lower than normal and prolactin level was very high at 3,000 which should be between 5 and 18 for a male. The Endocrinologist was happy about it because now it may be possible to take care of the tumor with the drug Dostinex thus avoiding surgery. But there is still no guarantee. Today I saw a Nuerosurgeon who agreed with this course of action. He also put me on Dexamethasone, which is a Corticosteroid. Don't ask me what Dexamethasone is or what it does. All that I know is that it's supposed to help the Dostinex work better. Bye for now; thanks for your time! Jeff <pikakard_AT_scc_DOT_.net> Twin Cities, MN - Wednesday, April 5, 2000 at 22:27:45 My son age 28 was recently diagnosed with a pit tumor and acromegaly I just wanted to find out more about this disorder barbara <barbluhib_AT_aol_DOT_.com> nashville, tn - Wednesday, April 5, 2000 at 20:48:21 HAD A RATHES CLEFT REMOVED 1992 NOW HAVE A NEW MICROADENOMA SUFFER ALREADY HAVE DI HYPOTHYROID..JUST LEARNED GROWTH HORMONE IS LOW...WOULD WELCOME SOME DIRECTION..THANKS karen <KJBSLAYER_AT_AOL_DOT_.com> JENSEN BEACH, FL - Wednesday, April 5, 2000 at 20:40:50 Hello everyone! I would like to know if anyone out there that had a pituitary adnoma developed fibromyalgia or rheumatoid arthritis? If anyone did please e-mail me I would love to hear from you! Ada <adasaunders_AT_hotmail_DOT_.com> Springdale,, Nfld. - Wednesday, April 5, 2000 at 12:04:48 In reading the guestbook, you can see people posting from all over the country, and from other countries. It seems to me like I notice a large percentage of people are from Texas. Has any research been done on incidence of pituitary tumors in certain geographic areas? With a definite cause being unknown, I am curious about that if anyone knows... Monique <eddieandmonique_AT_aol_DOT_.com> Hickory, NC - Tuesday, April 4, 2000 at 19:34:21 I ALSO HAVE A PITUITARY PROBLEM. MY QUESTION IS ANY OUT THERE HAVE THE SURGERY? WHAT SHOULD ONE EXPECT? I HAVE ALOT OF BACK PAIN. AND I WENT A YEAR BEFORE GOING TO THE DOCTOR AND I FEAR THAT I MIGHT OF DONE SOME DAMAGE BUT NOT SURE. I DO TAKE THE BROMOCRIPTINE AND THERE ARE SOME DRAW BACKS. NOT FEELING ALL THAT WELL IS ONE. BUT I TAKE IT AT NIGHT SO I REALY DONT FEEL ANYTHING. BUT I ALSO NOW WHEN I HAVE TAKEN TO MUCH I CRY ALOT THE FRIST SIGH AND THE ONLY ONE I CAN CONTROL. IF YOU HAVE ANY SUGGESTION AND HELP FOR ME I WOULD LOVE TO HERE FROM ANYONE WITH THIS PROBLEM. THANK YOU. june seabourn <worldoffun123_AT_aol_DOT_.com> dallas, or - Tuesday, April 4, 2000 at 00:24:59 i've recently been diagnosed with a pituitary adenoma and any information is greatly appreciated. i've read up on it as much as possible and the information you have provided has answered some of the many questions i have yet to be answered. Thanks for the info. cynthia <mcandy73_AT_aol_DOT_.com> el paso, tx - Monday, April 3, 2000 at 23:37:26 Looking for case histories of social security diasbility, my wife is currentlu undergoing treatment for acromegaly(had surgury) trying for disability (3rd time) for her affliction. as she can no longer work (beurocrats !!!!) please send help e-mail me at johne_AT_mi-web_DOT_.com or johnedalpiaz_AT_hotmail_DOT_.com urgency is of the utmost. John E. Dalpiaz <johnedalpiaz_AT_hotmail_DOT_.com or johne_AT_mi-web_DOT_.com> wyandotte, mi - Monday, April 3, 2000 at 23:10:49 My daughter, 32, was recently diagnosed with a prolactinoma (small in size). Her endocrinologist hasn't put her on any medication as of yet. She does get bad headaches upon waking almost every day. She was told she would have to have her prolactin levels monitored quarterly and have an MRI if the levels rise. In the meantime, she has been plagued by problems with her breasts, filled with milk, lumpy, painful, etc. She recently underwent a nuclear test to rule out any malignancy. Apparently, the condition is related to the prolactinoma? She has 5 little boys (including 2 yr. old twins) and is getting very discouraged because she is simply not feeling well. She will get the results of the nuclear test this week. HMO's are a problem because they really don't like all the referrals that are necessary with this type of condition. We are hoping that the drs. in her plan are qualified to render an accurate diagnosis. She doesn't have a computer, so I will pass along any words of encouragement, information, etc. to her. I count my blessings when I see her pain and read about yours in the guest log. My thoughts and prayers are with all of you. Thanks for listening. Dale <dalevani_AT_aol_DOT_.com> Bklyn, NY - Sunday, April 2, 2000 at 19:37:01 MY 8 YRL OLD DAUGHTER WAS DIAG W/CRANIOPHARINGIOMA 2/29/00. HAVING HER DIAG W/ THE TUMOR WAS THE LAST THING IN OUR MINDS. SHE WAS HAVING SEVERE HEADACHES FOR THE PAST 4MONTHS & THEY WERE DIAG AS MIAGRANES IT WAS ONLY BY CHANGE THAT WE FOUND OUT THAT IT WAS A TUMOR ON 2/28 SHE FELL IN HER ROOM AND WAS NOT ABLE TO GET BACK UP. A MRI WAS DONE THAT SAME DAY AND THE RESULTS CAME BACK AS A TUMOR. SHE WAS ADMITTED TO MIAMI CHILDRENS HOSPITAL THAT SAME DAY. THE TUMOR WAS SO BIG A WITH SUCH A MASS, THAT THE DOCTORS COULDNT REALLY UNDERSTAND HOW LONG IT TOOK FOR ANY DOCTORS TO FIGURE OUT THAT WHAT SHE HAD WAS A TUMOR. BESIDES THE HEADACHES THERE WERE NO OTHER SYMPTOMS. MORE MRI AND CT SCANS WERE DONE HER TUMOR "CRANIOPHARINGIOMA" STARTED AT HER PITUITARY GLAND AND ENDED AT THE TOP OF HER SPINE. THE DOCTORS SAID IT COVER 1/3 OF HER BRAIN, THE OPERATION WAS DONE ON 3/3 AND IT TOOK OVER 13HRS. THOSE 13HRS HAVE BEEN THE LONGEST HOURS IN MY LIVE. I HAVE HAD A VERY HARD LIFE AND I TRUELY THOUGHT THAT THE PAIN THAT I HAD ENDURE IN MY CHILDHOOD AND IN MY TEEN YEARS WAS UNIQUE AND NO OTHER PAIN WAS GOING TO BE WORSE THAT, BUT SEEN MY CHILD GOING THOUGHT ALL THIS, IS TRUELY A UNIQUE PAIN I FELT HELPLESS. THE TUMOR HAS BEEN REMOVED BUT THERE IS DAMAGE TO HER PITUITARY GLAND THAT MEANS SHE WILL HAVE TO DRINK HORMONE REPLACEMENTS FOR THE REST OF HER LIVE. THERE WAS ALSO DAMAGE TO HER VISION AND THAT WILL BE REPAIR IN ABOUT 3-6 MTHS WITH ANOTHER OPERATION. SEEN MY DAUGHTER GO THROUGH THIS HAS REALLY TEACHED ME HOW PRESIOUS LIFE""" REALLY IS """ & HOW YOUR CHILDREN ARE """REALLY""" THE ONLY IMPORTANT THING ONE HAS. I THANK GOD AND THE GROUP OF DOCTORS THAT HELP GABBY BE ABLE TO BE WHAT EVER SHE WANTS TO BE IN LIVE. GABRIELA FT LAUDERDALE. GABRIELA <GABBYTONYTINA_AT_AOL_DOT_.com> FT LAUDERDALE, FL - Sunday, April 2, 2000 at 18:02:29 I am a 41 year old male acromegalic. Transphenoidal surgery in Jan 1992. Neuro-surgen, Kevin O. Lillehei, UCHSC. No radiation treatment. My growth hormone level was 24.1 and my somatomedin-C level was 3400 plus. Post operation symptoms include: headaches (severe at time), manic depression (social security rated), lower back syndrome (vertibrea compressed 7 disks), Wolf-Parkinson-White syndrome (irregular heart, tachy-cardia,angina), sleep disorder (no cicadian rythum - sleep 100 plus hours per/week), extreme fatigue, muscle and joint pain. Growth hormone levels have been normal since 1992. Arthur R. Lillyblad <alillyblad _AT_yahoo_DOT_.com> Butte, MT - Sunday, April 2, 2000 at 03:38:46 Thank God you are here! I just happened to come across this guestbook today. My 16 yr. daughter probably has a pit tumor. Symptoms are elevated Prolactin level and some vision problems. She goes for an MRI tomorrow 4/2/00. She does not know the serious nature of this problem. I had no idea there were this many people out there with this disease! Just glad there is support out there. Anyone who woul like to talk just email me. Thanks for being here. Joan <Joan_AT_luv2volli_AT_aol_DOT_.com> Clayton, OH - Saturday, April 1, 2000 at 09:16:16 LOOKS LIKE I'M FINALLY GETTING SOME RESULTS! I WONDER IF IT WILL LAST,MY BEING TREATED W/PARODEL, seasea <seth_AT_cfweb_DOT_.net> J, La - Saturday, April 1, 2000 at 05:11:45 I'm pleased to have ran across this site! I too have a pit tumor, a microprolactinadenoma. I was diagnosed 6mos ago after presenting the common symptoms I have read about in here. In my reading I realized there are many questions I have not asked of my endocrinologist....but I will, won't she be thrilled! ;o) I'm on dostinex with little or no side effects. My periods came back but are not regular, nor the same as they used to be. I have severe cramping now, and clots, I never had that before. I was upset today to hear my endocrinologist say I would have to be on dostinex for the rest of my life and even that was no guarrentee that the pit tumor would shrink. She also does not see any reason for another MRI. This really concerns me. I've only had one, the initial one. How will we know if the tumor is growing or not without an MRI? What are the incidences of the tumor being the type that spreads on a cellular level to other organs and tissues? One hopeful letter in here (among many) said that in their research 80% do not spread...sounds good, but where did you find your info? I'd love to see that too. Frankly, my largest worry about the whole thing is my lack of choices with treatment..with who treats me...what meds...etc. because it's all dictated by an insurance company. Most insurance companies hire nurses to make these decisions, not doctors. I respect nurses, I'm a nurse myself, but I'd rather have an experienced doctor calling the shots. One with enough integrity to stand up for what is best for the patients, not the insurance company. Has anyone had any problem with insurance companies not wanting to cover dostinex? It's expensive, no doubt, but one only has to read through these letters to see that it is more tolerable than previous meds for pit tumors. I'm interested in hearing from those with insurance and cost concerns, and naturally from those who have been treated with dostinex for a long while who have a prolactin secreting pit tumor. Thanks for letting me sound off!! Best wishes to you all! Robin Robin McMurrin <soshal3_AT_lisco_DOT_.com> Cincinnati, IA - Friday, March 31, 2000 at 23:42:47 Hello again, I just thought I would let everyone know that my MRI came back normal.(thank goodness) So now i am back to the beginning. Same symptoms, same lost feeling. Like i told a few of you that I have been talking to maybe i do have "imaginitis". I am waiting for the last test taken for the throids. I wish all of you luck and prayers.....Cricket Cricket <coyizme_AT_aol_DOT_.com> east windsor, nj - Friday, March 31, 2000 at 07:40:57 I have an 18yr old daughter that is going for an MRI on 4/1/00 to check for a pituitary tumor, her endro suspects acromegaly. I would appreciate any info you can provide regarding diagnosis, surgery, ect, & prayer for a total healing. Winny <konrad_AT_wtp_DOT_.net> Billings, mt - Friday, March 31, 2000 at 04:17:43 I am 20 yrs old and have a 15mm pituitary tumor. I have had all the tests and it is not hormone secreting (even though I am lactating and have other hormone related symptoms). The last test I am waiting on is for Cushings though I do not have classic Cushings symptoms, it is possible. I should have the results sometime next week. They tell me if it is Cushings I need surgery ASAP and if not I have a choice to wait. I have type one, insulin dependent diabetes, which decreases the number of children I will be able to have safely, and now with this they tell me if I have surgery it is doubtlful that I will ever be able to have children at all. Thus the reason for waiting. My tumor is not pressing on my optic nerve so that is not an immediate threat. I am only 20 and my quality of life sucks. I am on leave of absence from my job and have been unable to attend college this semester. My question is: Is it worth it to risk having surgery now to alleviate my other symptoms, or does surgery just bring more pain and recooperation? I'm scared and I don't know what to do! Whitney <whit_79_AT_hotmail_DOT_.com> Dallas, TX - Thursday, March 30, 2000 at 23:21:20 Age 23, Female, Otherwise healthy Elizabeth Bova <eabova_AT_hotmail_DOT_.com> Weston, CT - Thursday, March 30, 2000 at 20:12:58 I was diagnosed 3 years ago with a macroadenoma. Until this past month my prolactin count was kept under control with Parlodel and now the doctors are talking about the surgery I have dreaded. I have been experiencing shooting peircing pains in my head. Is anyone else experiencing this? I am probably going to have intranasal surgery and I was hoping for any info or advice on how long hospitalization and most of all recovery time. I am trying my best to stay strong but I am terrified. I cant really talk to anyone in the family because they just dont really understand and it is not their fault, they are trying the best that they can. I think it helps just to know someone cares. I have an appt with an endo to discuss any concerns I may have but like anything else the waiting is enough to drive me crazy. I would really appreciate anyone emailing me with their experience with surgery. This guest book has been a blessing. Until I found this site, I felt like I was the only one going through this. I wish all of you well and the strength is takes to stay positive. God Bless! Marian <ptsbstfrndmar_AT_aol_DOT_.com> PA - Thursday, March 30, 2000 at 09:33:26 I am going to have MRI done on April 6/2000.Scared to death.Do not want to have a surgery and hope for the best. Lyuba Gulabyan <MLKNHONNEE_AT_AOL_DOT_.com> Syracuse, NY - Wednesday, March 29, 2000 at 21:55:43 Hello, i have been reading some of the post in here and i have some questions that i am sure most of you can answer better then the doctors i have been seeing lately. Last june my prolatine level was at 97 and i had another one done a few weeks later and it read normal. Now all this time later i am having severe headaches dizziness and blurred vision. i am also very tired and have had to take some time off from work. I have been to the Er and to a neuro and then to a encro doctor and none of them seem to know what is wrong. i had a MRI done on the 28th and took the films with me to the encro guy(which didn't know how to read them)he had no clue what was wrong with me and treated me as if i was imagining it all. ANY HELP would be nice. does anyone have any ideas where i should go now? thanks for listening. Cricket <coyizme_AT_aol_DOT_.com> East Windsor, nj - Wednesday, March 29, 2000 at 16:12:07 Just before Thanksgiving I was diagnosed with a macroprolactinoma (2.3cm x 1.8cm x 1.5cm) with my prolactin level at 469. Had no symptoms besides loss of menstrual cycle, 1st thought it was due to being on the Pill for so long. Visual field tested A-OK. Started taking Dostinex immediately, .25mg, twice a week. Have done bloodwork on a monthly basis and with the level continuing to decrease, Dr. has increased my dosage to the maximum recommended dosage of 1mg twice a week. My latest bloodwork showed my prolactin level is down to 111. My MRI last month showed that the tumor had decreased in size, the height went from 2.3cm to 1.1cm. So all in all, 4 months later I have shown great improvement. This has all been with no side effects that we are sure of. Sure, I've had some days that I've been really down, but based on what I was going through those days it did not seem to be due to any of this, maybe a little more emphasized, I'm not sure. Actually I did start lactating slightly once I started taking the Dostinex, nothing terrible. What I am hoping to find out from anybody is whether they have taken higher dosages of the Dositnex? My Dr. wants to increase my dosage, but he is doing research to make sure that it will be safe and/or it will make any difference. If anyone out there has any experience I would love to hear about it. Also, the reason we even found out about this was because we were trying to get pregnant. Has anyone out there taken Dostinex during pregnancy? Many people have written how fast they became pregnant after starting Parlodel, but no one has mentioned their experience with pregnancy and Dostinex. Any experiences would be welcome, my husband and I would really like to start a family. Thank you everyone for sharing your experiences, it has been a great comfort. Tracy Gorman <robtrayg_AT_netscape_DOT_.net> Plainview, NY - Wednesday, March 29, 2000 at 00:14:11 NONE AT THIS TIME ANNA M. ASHCRAFT <VIRGOHD59_AT_AOL_DOT_.com> BRODHEAD, KY - Tuesday, March 28, 2000 at 17:22:05 Please scroll down and read my entry from March 10th of 2000 before you read this. Using my scanner, I've made some jpeg image files of the actual MRI films as well as the MRI text report. If you would like to look at them, I can attach them (there are 5 files total), to an e-mail to you. The films are kind of cool to look at. Thanks to all of you for being around. Jeff <pikakard_AT_scc_DOT_.net> Twin Cities, MN - Tuesday, March 28, 2000 at 06:19:55 i was diagnosed with a 3x3mm pituitary tumor a few years ago & haven't had to have treatment yet. i'd just like to say thanks for having this site. Deidre Markham <Deidre_AT_mediaone_DOT_.net> Mableton, GA - Monday, March 27, 2000 at 13:59:03 Hello, I had an MRI last week, and my doctor told me today that I have a 4mm microadenoma in my pituitary. Should I worry? What are the effects of this microadenoma. My menstrual cycle is very irregular (I'll go for months without it). What other types of other abnormalities are associated with prolactima? My doctor is putting me on Parlodel. I've read many of the stories in this website and it seems that many people have to undergo a surgery. Please let me know how parlodel works for you and why people chose to go through surgery. Mary <maryn76_AT_hotmail_DOT_.com> Pasadena, CA - Monday, March 27, 2000 at 05:08:43 Hello, I had an MRI last week, and my doctor told me today that I have a 4mm microadenoma in my pituitary. Should I worry? What are the effects of this microadenoma. My menstrual cycle is very irregular (I'll go for months without it). What other types of other abnormalities are associated with prolactima? My doctor is putting me on Parlodel. I've read many of the stories in this website and it seems that many people have to undergo a surgery. Please let me know how parlodel works for you and people chose to go through surgery. Mary <maryn76_AT_hotmail_DOT_.com> Pasadena, CA - Monday, March 27, 2000 at 05:07:37 Hi, I was diagnosed with a hyperprolactinoma two and a half years ago. I was told I would never become pregnant I of course did and had a beautiful baby girl 9 weeks ago. I wasnt on the bromocriptine when I became pregnant and am wondering if anyone had become pregnant off of it and how quickly did it happen. We would love to have more children and we dont want them too far apart. Can some one help answer this question? We would much appreciate it. Thanks Shawna Shawna Schroeder <CaliGirl030675_AT_aol_DOT_.com> Lompoc, ca - Sunday, March 26, 2000 at 23:03:46 Keep up the good work! There is a great need for information and support out there. We appreciate all the effort you put in. Acromegaloism??? patient. Melanie ol8iver <melo_za_2000_AT_yahoo_DOT_.com> Christchruch, - Sunday, March 26, 2000 at 17:33:25 Keep up the good work! There is a great need for information and support out there. We appreciate all the effort you put in. Acromegaloism??? patient. Melanie ol8iver <melo_za_2000_AT_yahoo_DOT_.com> Christchruch, - Sunday, March 26, 2000 at 17:33:19 My mother was just diagnosed with acromeglia and her physician doesn't know much about it and is consulting with a specialist. Do you have information related to this diagnosis? Chad <cwyoung1_AT_hotmail_DOT_.com> - Sunday, March 26, 2000 at 16:54:48 severe fluid retention\massive wt.,gain prolactanom\4mm. anyone else?on parodel-30mgs.,lasix-160mgs charlotte <seth_AT_cefweb_DOT_.net> j, lasevere - Saturday, March 25, 2000 at 21:23:33 I had my pituitary removed when I was 11 - I'm now a healthy 30 year old! If I can help in any way, please contact me. I'm currently on a Growth Hormone trial and trying to start a family at the same time - what a challenge!! All the best, Andy [Wales, UK] Andy Wride <andy.wride_AT_virgin_DOT_.net> Caerphilly, - Saturday, March 25, 2000 at 15:21:38 Is there a long life, if you are living with a pituitary tumor? Katherine Sauve <ssauve_AT_incentre.ca> Cold Lake, Alberta, Albe - Friday, March 24, 2000 at 23:38:58 I have had the surgery 2 times and have been cursed with migraines.I hate being sick all the time. the only good thing after my surgery I have 2 boys who are the light of my life.If any one has a ? e-mail me Ren'e <EYORE N POOH9962_AT_aol_DOT_.com> Salem, Va. - Friday, March 24, 2000 at 17:22:37 Where can I ask a medical question?! I have a tumor and am pregnant...lost last one 8/99. Does pituitary grow during pregnancy and should I be considered a high-risk pregnancy with this pituitary macroadenoma? PLEASE SOMEONE RESPOND Mel Miller <meltom_AT_arn_DOT_.net> Amarillo, Tx - Wednesday, March 22, 2000 at 20:33:22 I have a two year old daughter whom was conceived while I was taking parlodel, I discontinued use as soon as I learned I was pregnant. My daughter was born with bilateral club feet,(hereditary)and was also born with an artery missing from her umbilical cord. I am told this is extremely rare, and can cause serious birth defects, or can cause none whatsoever. Fortunately, my daughter has no serious problems due to this, but I always wondered if the parlodel was a factor in the missing artery. Has anyone else had a similar experience? If so I would LOVE to hear from you. Monique <eddieandmonique_AT_aol_DOT_.com> Hickory, NC - Wednesday, March 22, 2000 at 17:01:13 I am a second time offender of the pituitary tumor. I never tolerated bromocryptine, in fact, my tumor continued to grow. they removed it surgically in 1992. In 1999, it resurfaced. Now I am on permax. I hate it. It is easier a little bit, then bromocr., but not by much. I have |
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