Pituitary Guest Book 2000

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.
Renee Wright-Drane <wrightrx_AT_mail.milwaukee.k12.wi.us.>
Milwaukee, WI - Sunday, December 10, 2000 at 20:01:12

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LOOKING FOR ANSWERS
RHONDA LEA
- Saturday, December 9, 2000 at 12:39:29

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Just looking for possibilities for a friend
Jenn Puhl <Kitten9181_AT_aol_DOT_.com>
Trevose, PA - Friday, December 8, 2000 at 19:17:43

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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need infor on tumor
homer Sales
- Thursday, November 30, 2000 at 20:12:14

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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36 with secreating tumor.surgery or not
mitch <mitch_AT_joehale_DOT_.com>
houston, tx - Saturday, November 18, 2000 at 03:25:12

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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

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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

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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

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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

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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

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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

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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

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no comment
j.r.
okc, ok - Wednesday, November 15, 2000 at 11:24:47

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Don't know what the problem are
Elizabeth Collins <bobbeth96_AT_aol_DOT_.com>
Haughton, LA - Thursday, November 9, 2000 at 19:01:15

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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HELLO Everyone
ryan newman <rnewman_AT_sco.edu>
memphis, Tn - Wednesday, October 18, 2000 at 02:19:18

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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

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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

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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

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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

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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

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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

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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

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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

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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

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no comment
kondi poulimenakos <Kpoulimenakos_AT_hcmt_DOT_.com>
baltimore, md - Thursday, October 12, 2000 at 10:43:30

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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

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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

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Looking for anyone with pituitary tumor (prolactinoma) who has had endonasal surgery, NOT transphenoidal. This new