1998 GuestBook for Pituitary Tumor Guestbook at Massachusetts General Hospital/Harvard

These Public GuestBooks are intended for Patients, Family and Friends as a way to:

post Public information, comments and feedback
post questions and concerns to which other patients can respond
get in touch with others that have had similar concerns
or get support in knowing that there are others with similar problems

But again, Please do not ask medical treatment questions here - you will not get a direct response from us !

Archived versions are found at:

Guest2004 | Guest2003
Guest2002 | Guest2001
Guest2000 | Guest99
Guest98 | Guest97
Guest96 | Guest95

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:

post Public information, comments and feedback
post questions and concerns to which other patients can respond
get in touch with others that have had similar concerns
or get support in knowing that there are others with similar problems

But again, Please do not ask medical treatment questions here if you want a direct response from us !

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 1998

I was just surfing the web and noticed this guestbook. I am ongoing patient of Cushings Disease. I have had two Pituitary Surgeries in the past that has rendered me Hypo-Pan... If this agency ever has new information on Cushings Disease and the recovery of the disease, please email me... Thank you again, Edward D. Weathers
Edward D. Weathers <weathers_AT_falcon.cc.ukans.edu>
- Wednesday, December 30, 1998 at 22:29:44

Very informative website. Thank you.
Suzanne Pontiere <SzPont_AT_aol_DOT_com>
Sarasota, FL - Saturday, December 26, 1998 at 13:30:32

I was amazed to find this site - I never realised so many people had problems with the pituitary gland. I had mine removed due to the presence of a tumour when I was 11 years old - I am now 29! If anyone has any questions, feel free to ask! All the best, Andy
Andy Wride <andy.wride_AT_virgin_DOT_net>
- Friday, December 25, 1998 at 07:22:10

I had two pituitry tumor operations in December 1979. The first under my nose which only got 20-30% of the tumor.Then through my front left forehead, which left me with severe short term memory problems.Over the past four or five years I've sufferd severe sexual inabilities. I do'nt know if it's from medicine or what. I am now 58 years old. p.s. Viagra has'nt helped either. Any comments? thank you, Don Johanson
Don Johanson <lindon_AT_mail.telis.org>
Cobb, Ca. - Friday, December 25, 1998 at 00:24:42

I just started taking Dostinex, about three weeks ago and I feel like a new person! I have not felt this good in about two years! I still have problems with my memory, but I no longer act like Cruela Devil! I recomend this drug to anyone who has had now success with the other medications.
Helma Murton <mmurton1_AT_gte_DOT_net>
Albuquerque , NM - Monday, December 21, 1998 at 14:56:36

Hi pituitary friends. I wanted to supply the address to the site I have been working on to represent The Henry Ford Hospital Pituitary Disorder Education and Support Group. I have just added a newsletter for the Holidays that I want to share with everyone. I am still having a few glitches with the treatment options page, so try again when that occures or send me mail when a link is not operating correctly. This site is full of resources and inspiration and plenty of pituitary backgroung information give it a visit and let me know what you think! Teresa Sullivan pitps_AT_aol_DOT_com
Pituitary Disorder Education & Support <Teresa Sullivan) pitps_AT_aol_DOT_com>
Brighton, MI - Monday, December 21, 1998 at 10:19:50

After reading all the positive comments in the guestbook, I will be switching to Dostinex this Friday 12-18-98. Wish me luck!
Cheri <hoover4_AT_alltel_DOT_net>
Pierpont, Ohio - Thursday, December 17, 1998 at 16:46:25

Just wanted to add that my previous message had a typo I'm looking for Dostinex that is not expired not expored. Thanks
charlene lewko <clewko_AT_bc.sympatico.ca>
abbotsford, bc - Wednesday, December 16, 1998 at 22:53:30

My prolactin level is high and I want to get pregnant. I have been on Norprolac for a while with no success,as my system has built up a tolerance to it. My doctor says he wants to try me on Dostinex. I am agreeable but the medication will cost me $42.00 a pill, as the drug is experimental in Canada. I f anyone has Dostinex that is sealed and not expored I would appreciate hearing for you. I will pay the postage. Thank you.
charlene lewko <clewko_AT_bc.sympatico.ca>
abbotsford, bc - Wednesday, December 16, 1998 at 22:45:44

I just wanted to mention that one of my cats, (yes, a cat), has been diagnosed with acromagely. It is particularly hard for me since I have had Kele for almost 10 years now. I've taken her all over the world with me when I was active duty Navy and now that I've settled down, I find out she has a rare disease in which nobody can really help. I believe she's had this disease going on two years, but I cannot be sure. You see, she had a liver problem in September of 1996 before I left Pensacola. The vet diagnosed her with hypatic lympadosis (fatty liver) because her liver enzymes were very high. She "recovered" from that but her stools had never been the same. I took her to another vet when I moved to Arizona in March of 1997. She was then diagnosed with diabetes. She's been through every kind of insulin, even one that was considered "experiemental" (PZI) - but we couldn't get her to respond (except for the glucose curve test -but who can give a cat regular insulin every 2 hours?). It was a year and a half of trying everything to control her diabetes when my vet, Dr. Randy Spencer, suggested Kele take a test to see if she had a rare disease called acromagely. Well, the "score" should have been around 72 - Kele got a 260. She's doing ok, she's got some of the symptoms associated with the disease - diabetes, pot-bellied, large paws (in the front), hind leg weakness, non-responsiveness to insulin. I hydrate her twice a week with sub-Q fluids and maintain her diet of w/d 2x a day. She gets 10 units of NPH insulin and 5 units of regular insulin 2x a day also. She's still very loving and I do what I can to make her life as comfortable as possible. I'm not sure how much longer I'll have Kele, the vet has not recommended that I pay the exhorbiant amount of money it would cost for radiation treatment. So far there hasn't been enough research on this disease in cats to warrant a good response to oral medication. Therefore, we just hope her tumor doesn't grown any faster and that she stays healthy. I'm sure ny story pales in comparison to a human having this disease - but I love my animals as much as I love life itself so I felt compelled to share it with you.
Dawn Bushnell <drbushne_AT_sprintparanet_DOT_com>
Chandler, AZ - Wednesday, December 16, 1998 at 10:14:53

pitutiary tumor
b lar <balar_AT_tds_DOT_net>
naperville, il - Tuesday, December 15, 1998 at 18:22:36

I would appreciate if anyone could give me info on taking Dostinex and getting pregnant.Thankyou.
charlene lewko <clewko_AT_bc.sympatico.ca>
abbotsford, bc - Monday, December 14, 1998 at 17:06:20

this site is very informative... my dermitologist noticed my condition in 11/98 and referred me to endocrinology (yeah to the derm dr's). an mri confirmed that i have a 10cm tumor, and i am now for a transphernodial resection in 1/99. i am hoping that i do not have to use any drugs afterwards... question, what is tpical recovery time, i mean return to work and other normal activities???
Devan T Combs <devan54_AT_juno_DOT_com>
Delmar, NY - Monday, December 14, 1998 at 08:19:18

In 1993 I had surgery to remove a 1cm Pituitary tumor. After the surgery my Prolactin level remained too high to have children. My doctor advised me about a drug called CV205-502, now called Norprolac. The drug was not yet approved for used in Canada so my doctor contacted the Health Protection Branch in Ottawa, and the drug was approved for my use. Since taking Norprolac I have had two healthy children, and I am currently taking it again to have our third child. If there is anyone else out there with a high Prolactin level and wanting to get pregnant, please contact me if I can provide you with any information about Norprolac. thank you.
Charlene Lewko <clewko_AT_bc.sympatico.ca>
Abbotsford, B.C. - Monday, December 7, 1998 at 23:16:50

In 1993 I had surgery to remove a 1cm Pituitary tumor. After the surgery my prolactin levels remained too high to have children. My doctor advised me of a drug called CV205-502 now called Norprolac. The drug was not yet approved for use in Canada,however my doctor contacted the Health Protection Branch in Ottawa and had the drug approved for use. In 1993 I was the first person in Canada to start taking the drug, and to date I have had two healthy children. I am currently taking Norprolac to have a third child. If there is anyone else out there wanting to have children but your prolactin level is too high, please contact me if I can provide you with any information about Norprolac. Thank you.
charlene lewko <clewko_AT_bc.sympatico.ca>
abbotsford, bc - Monday, December 7, 1998 at 23:00:22

Hello, my name is Christine. Just this past January I was diagnosed with a pituitary tumor at the age of 28. My tumor has brought on two symptoms, one is prolactinoma, the other acromegaly. I was unable to have the tumor removed surgically due to the position of the tumor. My doctors watched to see if octriotide would bring the growth hormones down. But after taking it for eight months my growth hormone count was still on the rise. I have just completed gamma knife radiation. I wanted to know if there are others that have both prolactinoma and acromegaly present with their tumors. I also wanted to know if there are others my age that have acromegaly. It is a great relief to have found this guest book. I have spent many months searching for support groups on the internet with no luck. If I can be of any help to anyone, please feel free to email me. And once again if anyone is in a common situation as I, please write to me.
Christine <okettani_AT_aol_DOT_com>
Fairfax, VA - Monday, December 7, 1998 at 16:20:28

Hi Toni I am currently 32 weeks pregnant after falling pregnant whilst on dostinex. My pregnancy has been a breeze. I have experienced no prolactinoma symptoms since falling pregnant as my hormones seemed to have leveled out (you produce more prolactin naturally when pregnant). I have spoken at length with my endocrinologist on dostinex and pregnancy as well as over the net with many other women. There are firstly many women out there who have either been on dostinex whilst conceiving (like me) and some who due to their tumour size have remained on this medication throughout their pregnancy. Dostinex is categorised as a level B risk drug for pregnancy. Basically, the manufactor is claiming that it can not guarantee that this drug is 100% safe as it is still a relatively new drug and more tests need to be done. There has been shown to be a slightly higher risk of miscarriage in the early months. There is NO EVIDENCE however for women who have carried fullterm whilst taking dostinex to have produced children with any malformations by dostinex. My endocrinologist asked me to stop taking dostinex whilst carrying as his concern was that where possible it is obviously best to be 100% drug free however, he also indicated that if I was to start feeling my tumour symptoms were coming back that medication might be necessary. I doubt at this stage whether I will require dostinex untli after breastfeeding (my tumour is 6mm only). Toni, I don't know your situation, whether your contemplating pregnancy or are pregnant already but I wish you luck if this is what you want. I found dostinex restored my womanly functions within weeks of being on this drug so that I was able to conceive very easily. Talk to your doctor and read as much information as you can to get all the facts clear in your mind about what will be best for you. Goodluck, Kirstyn PS. I will only be available at this email address until 10/12 so please don't email me after this date. Please feel free to email me asap if you have any questions.
Kirstyn <K.Buhagiar_AT_cst.usyd.edu.au>
Sydney, - Sunday, December 6, 1998 at 16:32:58

I would like any information on Pregnancy and dostinex
Toni Giammalva <ToniLGia_AT__DOT_com>
- Sunday, December 6, 1998 at 15:53:44

My cousin was recently diagnosed with a 4x4mm pituitary microadenoma. She is 27 with a history of bipolar disorder. In the past three or four years she has gained a substantial amount of weight, which we always attributed to her meds. She also has a lot of skin problems, acne, etc. Which we also attributed to the meds. Her face is very round, which I have read can be a sign of Cushing's. Anyway, her gynecologist has told her this is nothing to worry about, while her psychiatrist seems a little more concerned. My cousin herself seems not too worried about it, but she is not always able to take control over situations in her life due to her bipolar disorder. I am worried about this diagnosis, and what significance it may have. Should she get another opinion? What information is available to help her deal with this? What symptoms should we look for? How do we know if this affecting her? HELP! There are so many questions, if anyone out there has some of the answers I would really appreciate it your help. Thank you, T.J. Parker
Teague Parker <dwilson_AT_swetland_DOT_net>
Ramsey, IL - Saturday, December 5, 1998 at 20:59:35

Well we have scheduled our next meeting for the New England Pituitary Tumor Support group for January 16, 1999. Anyone who is interested, please contact me.
Diane Chen <parishrd_AT_netway_DOT_com>
Boston, MA - Friday, December 4, 1998 at 05:31:57

Very informative website. Thank you.
Suzanne Pontiere <SzPont_AT_aol_DOT_com>
Sarasota, FL - Saturday, December 26, 1998 at 13:30:32

pitutiary tumor
b lar <balar_AT_tds_DOT_net>
naperville, il - Tuesday, December 15, 1998 at 18:22:36

I would appreciate if anyone could give me info on taking Dostinex and getting pregnant.Thankyou.
charlene lewko <clewko_AT_bc.sympatico.ca>
abbotsford, bc - Monday, December 14, 1998 at 17:06:20

I would like any information on Pregnancy and dostinex
Toni Giammalva <ToniLGia_AT__DOT_com>
- Sunday, December 6, 1998 at 15:53:44

I have recently being diagonesed with a 5mm Pituitary Adenoma, please inform me if there are any neuroendocrine centers in New York City. Thank you.
Silvana Bajana <sbajana_AT_cnr.edu>
Mamaroneck, NY - Thursday, December 3, 1998 at 17:30:59

hi, i was diagnosed with cushings in 93 after a year of tests. i had all the symtoms of cushings syndrome they operated on my pituitary and removed fibrous tissue. they thought i would come right but i didnt, i was bed ridden for a year because of the water retention. i suffered very badly from depression because of all the changes i went through my face got very bad, and after a long period with the dermotologist they put me on retin a and roaccutane, this dried out the pustules and turned them into scabs all over my face. they then sent me for more tests to a nuclear phycysist to do a scan called a radio isotope, the next thing i knew i was in for my second operation. they removed both my adrenial glands, they cut me on my stomach because of the recovery period on my back because i was so fat. cutting a long story short things started comming right i lost alot of the weight and the scabs on my face started comming off , i lost all my water but i was left with hanging skin and still alot of fat. i went to the plastic surgury in the provincial hospital and they removed my somach roll and did some lipo but was not such a good sucess. i then went up to endo on the 10th floor where they were doing blood test and sending me for mri and ct scans to see if there was any tumors, but there was nothing, the blood tests were showing that my acth levels were sky high, this didnt make any sence to them. this has been carring on for about 2-3 years and they could not find the exact spot where it came from. now they say because they cant find anything they want to operate to explore and see if they find anything. i cannot accept that, they have got to find out exactly what they are looking for. i need to know if anyone has had the same experience as me and if they have had any treatment. they say its nelsons and addisons, but i need to know whats going to happen if they dont operate. if anyone has any info please contact me .
jennifer lynne bird <mjruger_AT_intekom.co.za>
cape town, - Thursday, December 3, 1998 at 15:19:49

I was wondering if anyone out there has any experience with treating a Prolactinoma with Estrogen replacement therapy? My endocrinologist recently suggested this option, and I am reluctant to try it. I have had the Prolactinoma for about 8 years. I started off taking 4 Parlodel a day, and in 1995 I tried surgery. The surgery only reduced the tumour from 8mm to 6.5mm, but my prolactin went from over 400 to 139. After the surgery, my periods were still irregular, so my endo put me on the birth control pill. I was not happy taking it, due to various risks and medical problems in my family history. Also, I was not comfortable introducing any more hormones into my body. My endo says that I am not producing enough estrogen and she fears premature menopausal symptoms. This is why she suggested the estrogen. My concern is that this is simply treating the symptoms and not the cause. If I go back to the Parlodel, and lower my prolactin, then my body should start producing estrogen anyway. Has anyone out there ever tried the ERT? I would appreciate any feedback, as I have never heard of this. Thanks.
Alison <baileyau_AT_autobahn.mb.ca>
Winnipeg, MB - Thursday, December 3, 1998 at 14:23:47

Hi again. I posted here a few weeks ago and thanks so much for the wonderful personal responses I received. Since discovering this page and looking into Dostinex, and talking with my doctor, I have switched from Parlodel to Dostinex. The relief from Parlodel's side effects is profound, to say the least. However, the Dostinex is making me so tired. I feel good and am not depressed at all, but I could just lie down and take a nap any old time. So far I have taken 4 doses - 2 weeks. Anyone else have this side effect? Does it subside or do you live with it? Is there anything one can do (or take) to boost the energy that Dostinex may be sapping? Anyone have any experience with natural antioxidant/bioflavinoid supplements or an herbal energy booster?
Tana <tanars_AT_aol_DOT_com>
Lancaster, PA USA - Sun Nov 15 13:54:12 1998

Hello Everyone!I was diagnosed with a non-functioning pituitary tumor in 3/98.I was on Bromocripton until 8/98, and had all the side effects everyone lists.My doctor has now put me on Dostinex,and I actually got my period!The problem is I haven't gotten it again.Has anyone else experienced this?I go in for my second MRI at the end of the month,and will see my doctor in early December.She has been recomending surgery,but I am unsure.Can anyone tell me about surgery/recovery and what to expect?My husband and I want children very much, and I have been very depressed about my condition lately.I would welcome an Email from anyone who could give me some advise. Thank you!
Laura <leer515_AT_aol_DOT_com>
Wilmington, DE USA - Sat Nov 14 1:57:37 1998

I am a reporter with a county newspaper who is interested in writing a book about living with acromegaly. My husband has lived with this disease for the last 8 years, so I have first hand knowledge about the condition, and its consequences. He is now recovering from knee replacement surgery after having hip replacement in July. Next on the horizon is a full set of dentures to replace his teeth, once straight as an arrow, now a crooked mess. I am looking for people who are willing to share their stories for this book, which I see as being more inspriational than medical. I want to give hope to those that may be newly diagnosed and are looking to see what the future will bring. While there are definately hard times here, it is possible to live a peaceful and productive life. Please contact me at rocapd_AT_algorithms_DOT_com. It should not be neccessary to use real names in the book if you request confidentiatly.
Donna Rocap <rocapd_AT_algorithms_DOT_com>
USA - Fri Nov 13 20:15:57 1998

I am a 62 year old male with a pituitary tumor that was found about 1 year ago. I'v had this tumor most likely since in my 20's. I lost my throid function at age 25, so this is most likely the cause. My Endo. doctor has me on destinex and I am doing ok. My prolactin was above 500 when first tested, but now is about 8. I'v lost all my pituitary function except for my adreneal gland. I'm on testosterone and have recovered my libido which I am very thankful . The tumor has evaded my sinus and my neurosurgeon is keeping tabs on this with MRI scans. The last of two scans shows the tumor slightly smaller. The next scan is scheduled one year from the last one. I hope the tumor will contimue to shrink and surgery avoided. I'm not sure my case history will help anyone, but if I can help, please E-mail me. THANKS TO ALL FOR SHARING YOUR EXPERIENCES.
Donald R. Bale <DBale41788>
Hendersonville, Tn. USA - Tue Nov 10 21:36:58 1998

Just wanted to let B from Hamilton, ON., CANADA know that I sent her an e-mail as I am currently taking Norprolac. I also have changed my e-Mail address, so if anyone wants to e-mail me please use this new address, and not the one from my previous guest book entry. thank you.
charlene lewko <clewko_AT_bc.sympatico.ca>
abbotsford, bc canada - Mon Nov 9 22:57:20 1998

In 1993 I ha a Pituitary tumor removed. Although the surgery was a success, my prolactin levels have remained high. Since 1993 I have been taking Norprolac, I am the first person in Canada to take this drug. Since taking Norprolac I have had two healthy children, and I am currently on it to have our third child. If I can provide any information to anyone please e-mail me. I hope my experience with Norprolac can assist someone. Thank you.
charlene lewko <lewko charlene_AT_bc.sympatico.ca>
abbotsford, bc canada - Mon Nov 9 5:42:44 1998

Hi! I had suffered with joint pain weakness and always being tired. I had been to numerous doctors and they could find nothing. I started to think I was going crazy! Finally I had stroke symptoms and was taked to the Emergency room where they did a ct scan and mri and found my pituitary tumor BY ACCIDENT!!! As you can see I survived the stroke and luckily found the most wonderful neurosurgeon. The minute I walked in the door he looked at me and told me I had a pituitary tumor that was most likely hormone producing. He told me I had acromeglia and that was the reason for all my symtoms for the past several years. He did a trans- spheniodial resection of my tumor and thank God I was 100% better. I went to an endocrinologist and told him I was only supposed to be on my steriods for a month as the neuro surgeon had told me. The endocrinologist kept me on the steriods for six months. I started to have return of my prior symtoms and returned to the doctor that saved me from the stroke. He called the neuro guy and they came to the conclusion that I was now having cushing syndrome due to the steriods. I now have to be weaned off them slowly and deal with the old symtoms over again. The surgery worked great and the pain was gone and I did need to be on the steriods to help my system adjust to no tumor. The mistake came in staying on them too long. I would recomend the surgery it keeps the tumor from growing and releives me from worrying about another "stroke". I really enjoyed reading form all of you I don't feel so alone anymore. thanks, Susan
Susan
Hawley, PAPA USA - Sat Nov 7 20:37:07 1998

It's relieving to see how many people actually have pituitary tumors. I was diagnosed with one in April 1996. The first choice was treat me with Parlodel. That made me so sick that I has a hard time getting around. The next medication was Dostinex. Great stuff! I had no side effects and I don't feel too bad. I still experience mood swings and that's the hardest thing to handle with three children. They don't understand why Mom's upset again. I guess if that's all we have to put up with, we'll make it! Like I said in the beginning, It's nice to hear how others are doing. I can relate!
Trish <patricia.paul2_AT_gte_DOT_net>
Potsdam, NYN USA - Fri Nov 6 21:36:54 1998

Subject:Dopamine,norepinephrine and serotonin The modern era of research on the chemistry of mood disorders began several decades ago, when it was hypothesized that depression might result from the decreased levels of certain brain substances known technically as "amines." The amines currently implicated in mood disorders include norepinephrine, dopamine and serotonin. What are amines? they are chemical transmitters which nerves use to send messages to each other. Amines are the brain's biochemical "mailmen" particularly concentrated in the limbic system, a primitive brain region which appears to be involved in mood regulation. some research has been consistent with the amine theory. Some but not all high blood pressure drugs appear to bring on attacks of depression in individuals predisposed to mood disorders. these drugs have a tendency to deplete the brain of the amine chemical messangers. The lowered amine levels may trigger depression Drugs which block the activity or reduce the level of amines cause sedation and lethargy. I found this information in the book Feeling Good by David d. Burns MD. page 428 I thought it may have something to do with the mood swings and depression. Just a theory, I am interested in more information.
william
USA - Fri Nov 6 21:08:40 1998

hi, my name is clive I!m a 39 year old male and was diagnosed six years ago in London England,with a pituitary prolactinomer. The first consultant I visited who was a pituitary Surgeon wanted to remove my pituitary Gland, which I was not happy about,I feel surgery should be a last resort. I went to a Endocriminologist for a second opinion who started me on Bromocriptin ,for the last three years I have been taking 10mg a day but over the past 6 mths have been able to reduce this to 2.5mg a day. as the tumour has now shrunk so much, it is just a matter of keeping a balance on hormone levels twice a year and a MRI scan once a year. I am very pleased with the way Bromocriptin has worked on me with very little side affects,but I must admit I still do not feel 100% fit, I still feel Tired alot and Find I seem to have a lot more body hair has appeared from nowhere. Also my sex drive is still not back to normal. I wonder if these are a side affect of the Bromocriptin.
Clive <WATERMAN.1FREESERVE.CO.UK>
LONDON, ENGLAND - Fri Nov 6 18:21:35 1998

hi, my name is clive I!m a 39 year old male and was diagnosed six years ago in London England,with a pituatary prolactinomer. The first consultant I visited who was a pituitary Surgeon wanted to remove my pituitary Gland, which I was not happy about,I feel surgery should be a last resort. I went to a Endocriminologist for a second opinion who started me on Bromocriptin ,for the last three years I have been taking 10mg a day but over the past 6 mths have been able to reduce this to 2.5mg a day. as the tumour has now shrunk so much, it is just a matter of keeping a balance on hormone levels twice a year and a MRI scan once a year. I am very pleased with the way Bromocriptin has worked on me with very little side affects,but I must admit I still do not feel 100% fit, I still feel Tired alot and Find I seem to have a lot more body hair has appeared from nowhere. Also my sex drive is still not back to normal. I wonder if these are a side affect of the Bromocriptin.
Clive <WATERMAN.1FREESERVE.CO.UK>
LONDON, ENGLAND - Fri Nov 6 18:20:18 1998

In 1992 I was diagnosed with a prolactin level of 100 something. For two years I was taking pergolide (which made me very sick) and switched to Parlodel (which also made me sick). After 4 years of that drama, I was put on Dostinex which I find to be remarkable, with very little side effects. I was so frustrated with the other medication, I hesitated with the Dostinex, but continued to take it for about 3 months and stopped. In 1995 I prayed for a miracle from the frustration of taking the medication and in April 1996 I was pregnant. Not from taking the medication. My prolactin during my pregnancy was around 68-70 and I was not advised to take the medication, but to be monitored during my pregnancy to make sure my prolactin did not go up. My pregnancy was wonderful, I was happy and healthy and delivered an 8lb. 6oz boy in Dec.'96. After delivery I breastfed for two months(as long as I could stand it) and after six months I couldn't understand why my breast were still leaking. I was put back on Dostinex and it took care of that problem along with my p.level. Six months ago I stopped taking Dostinex cause I was having breast pain. A few weeks ago I noticed leakage from my nipples and it wasn't until I began to read all the wonderful and touching stories of the symptoms I had forgotten about, that I realized that my fatigue, depression, mood swings, leakage and headaches were because I was not taking the Dostinex. Well I started back last night. Today I feel great, a little tired, but no head pain. Thank you all for sharing your stories. I could not believe there were so many people living with p. tumors. I almost cried when I found this. I said thank God I'm not alone. I do not currently have an E-Mail address,but I am honored to share my story and be a part of the P. Tumor team. Keep the Faith and God Bless You All. Veda J.
Veda Johnson
Inglewood, CA USA - Fri Nov 6 13:04:25 1998

I have undergone 2 surgeries in the pase 4 1/2 months to remove my Pituitary tumor. I must now undergo radiation to remove the residual that could not be removed in those procedures. I am looking for any information that I can get about this process. If you have been through this, please drop me a line and tell me about it. If you are aware of any helpful internet resources that can give me clinical informarion about 3D-Conformed style radiation please send those along as well. Good luck to all of you that are going through this. Please feel free to contact me or visit my web site for more information about what I have been through. Information is a powerful tool for healing and I want to get and give as much as I can to fight this tumor! Keep your heads up. Steve Howard
Steve Howard <showard_AT_one_DOT_net>
Cincinnati, OH USA - Thu Nov 5 23:49:13 1998

This is the second time I've sent something to this guestbook. I am on CV205-502 - also known as Norprolac. I've been on it for over a year and a half. My prolactin is down and I feel ok. Since no one is writing me back I am worried that there is no one else that is on this drug. Please write to tell me if you know anything. Also any stories or information on getting pregnant while on this drug would be appreciated. Thanks.
B. <kauth.wings_AT_sympatico.ca>
Hamilton, ON Canada - Thu Nov 5 17:45:13 1998

Steve, I sent you info about radiation to your e-mail. If anyone else needs info, just ask. I am going to my doctor next week and hope to get off parlodel and go to Dostinex. Praise God for this site. I am so glad that others a feeling the same way I do. It is hard to carry a poor self image for all these years. Now I know I am not alone.
Barbara Whatley <barbara_whatley_AT_hotmail_DOT_com>
USA - Thu Nov 5 12:14:55 1998

Hi! I have some information regarding pit. tomours, parlodel, prolactin, PREGNANCY! etc. I am 24 years of age and although have not been diagnosed with a pit. tumour I suspect I have one, or have had my pit. gland damaged by 6 weeks of radiation I received when I was 14 following an operation to remove a brain stem tumour. It would be pretty bad luck if I had another tumour! I have suffered fom an absence of periods and high prolactin leves for a number of years, but managed to fall pegnant after taking parlodel for 2 years. I now have a 2.5 year old boy! I have increasingly suffered fatigue, menopausal symptoms,weight gain etc. etc. and feel pretty sorry for myself at times! I am about to arrange with my doctor to have an M.R.I to see whats happening up there! I have been prescribed Dostinex but have been slack in taking it, hoping that my body can heal itself naturally. Tonight I'm going to start taking it again after reading about how successful it's been for other people. I have found a natural alternative to hormone replacement therapy. The transdermal cream is called BioGest and it's active ingredients include WILD YAM as well as Omega-3 fatty acids. It has worked wonders for me and brought my periods and SEX DRIVE back. The cream contains natural progesterone, which, put simply, travels through your skin, into your blood stream, telling your ovaries to produce your own oestrogen. Please consult a health care practitiner before you all plunge yourselves into this cream, but I suspect many doctors don't think much of this cream because the progesterone from wild yam can't be patented, therefore there is not much of a push towards this product. I suspect BioGest might not be available in the U.S but I'm sure there are many similar products on the market containing wild yam that will do the job. If you have difficulty, I suggest consulting a natural health care practitioner.Regarding pregnancy, I ceased taking the parlodel once I found out I was pregnant. I felt fantastic for the whole pregnancy, and I think this is because the placenta takes over in hormone production and the pituitary takes a back seat! I breastfed successfully for 2 years. However, I'm increasingly suffering fom fatigue and weight gain, high prolactin and no periods, so it's back to square one! Bye for now, I send you all love, sympathy and encouragement. I hope that this information has been of some interest and benefit to others. Cheers, Jenna.
Jenna Austin <austinja_AT_postoffice.utas.edu.au>
Launceston, Tasmania Australia - Tue Nov 3 19:01:36 1998

My 27 year old daughter has recently had the diagnosis of a 5 to 7mm. nonfunctioning pituitary microadenoma established by MRI and MRA studies done to investigate an acute headache secondary to a focal intracranial hemorrage thought to arise within the microadenoma itself. No opthamological or endocrinological anomalies are present. Symptoms of headache have resolved within 36 hours on rest and Decadron. Are there research or review articles dealing with 'non-functioning microadenomata of the pituitary' which indicate experience with this disorder and outline approaches to short and longterm followup?
gduke <gduke_AT_cableregina_DOT_com>
Regina, SK Canada - Mon Nov 2 23:11:49 1998

Earlier I posted a question regarding adenomas and stress/traumatic event. Has anyone also had fibromyalgia along with a pituitary adenoma? I've done some cross-research on fibromyalgia and found that it can be caused be a stressful or traumatic event such as a car wreck, death, etc. I'm just trying to figure out why or what caused it. Thanks.
Adriane Lee <mmt2_AT_netdoor_DOT_com>
MS USA - Mon Nov 2 17:08:13 1998

Thanks for the info
Catelynn <Stormy1067_AT_aol,com>
Carpinteria, CA USA - Sat Oct 31 13:52:58 1998

Has anyone ever heard of the following. I have the following symptoms, galactorrhea, weight gain, fatigue, headaches. Iam 28 yr old female. I had one Dr, tell me my prolactin level was fine so just deal with the above conditions. I know have another Dr. who stated that I could possibly have a Pit. Tumor that my prolactin doesnt have to be high to have one. All the message i read in here talk of High prolactin. Anybody have any ideas or been thru this? Iam scheduled for a MRI next Wednesday but not even sure if it is necessary. Thanks
Trina <curtisp_AT_sos_DOT_net>
Mt V, WA USA - Fri Oct 30 15:51:04 1998

I too am interested in hearing more about pregnancy and elevated prolactin leves/pituitary disdorders. I have tried Clomid without success. My dr. wants to try Pergonal but I don't know if that's safe since I have had elevated prolactin levels in the past. If anyone relates to this and has any success stories I'd love to hear from them.
DC <jimbeau_AT_bouldernews.infi_DOT_net>
USA - Fri Oct 30 14:40:39 1998

Hello Everyone!!!! I just had to give a little update as to my experience with the dreaded Parlodel!!!! I am just ending my 8th week since I started to take Parlodel/Bromocriptine for my elevated prolactin (1300 at the start). I was very VERY nervous to take the drug. I've never taken any drugs and the thought made me upset. Well- since I learned the last year just how sensitive I am to drugs- I took my doctors advice to start VERY SLOW!!! (patience by the buckets needed!) The pills I have are 2.5 mg. I started with 1/8th of a pill for the first WEEK! (need a sharp exacto knife and some determination!) Then I raised it to 1/4 of a pill for the next week. then up to 1/2 for a week and 3/4 for a week and on up by 1/4 every week. I must say I have had alot of prayers said in my behalf so I give credit there too but I have done surprisingly well so far. Tomorrow I will raise up to 2 pills =5mg. My doctor will then have me stay there for 12 weeks and then check my level of Prolactin. I know this sounds very conservative but my doctor (I call him the brain chemist!) he feels that many of you with horrible side effects could be overdosed or started and raised too fast. I have had a few side effects- Since I always raise up on Friday night before bed- I have had some doosey headaches Saturday morning. So far Ibuprophen has worked pretty well for the pain. I experience some brief bouts of nausea during the day- no big deal It just comes in waves- especially when I have an empty stomach. My depression is lifting and my mood and motivation is improving alot so I am grateful for that. I have chosen to stop fighting the idea that I have to take a "DRUG" and I have started to be thankful for something that can help me feel better. I really have felt bad for several years with out even knowing it was my tumor. I blamed it on everything and yet it all points back to the brain and body chemistry all out of whack. WELL- Whew! How is that for a sermon! I just wanted to share my experience in case it might be helpful to someone else. Thanks for all of you who are brave enough to share and ask for support. You have all helped me and I am very grateful. I have made some wonderful friends in this whole process. God Bless to all of you fellow pit patients!!! Jalyne in Seattle
Jalyne <jfidler_AT_slc.shorelin.wednet.edu>
Seattle, Wa USA - Thu Oct 29 22:33:30 1998

matthew <crossclamp_AT_aol_DOT_com>
USA - Wed Oct 28 23:54:52 1998

I just learned I have a 5mm pituitary microadenoma. I have been having galatorrhea since have by last child 11 mon ago. My prolactin leven is 77. I have tried parlodel but have very bad side effects. Now I have been placed on Dostinex. Just started taking it 2 days ago. I have had symptoms of no menses, galactorrhea, decreased lipido, blurred vision, mood swings, and extreme fatigue. Would like to know if these symptoms are common with this condition. My Dr. states he would like me to continue on Dostinex for 1 yr if I can tolerate it and then wean me off and see how I do. My other option is surgery. Would like to hear from others and there treatments.
Terry <nick627_AT_globaldialog_DOT_com>
watertown, wi USA - Wed Oct 28 21:24:16 1998

I wish I had seen this site long before the Pituitary Adenoma surgery for my mother. When she was diagnosed to have a pituitary tumor of about 2 cm in size from the CT-Scan and then the MRI, the Neuro-Oncologist and the Neuro surgeon said, this could most probably a benign and should be surgically removed looking at the size of it. Infact, we went by the Doctor's word and my mother went thro' a transsphenoidal surgery. Most of the tumor was removed and it was benign. There is still some tumor leftover since try removing all the tumor would be very risky, the surgeon said. She is on the Decodran steroid after the surgery. Her harmonal functions are at good level so far after the surgery 5 days ago. I am interested in knowing about the post-operative pain/problems, how long does it take for the recovery etc. She is feeling very week and tired. Having severe head-ache. How long does this head-ache last and how is the general well being after the surgery? What are the follow-up actions to remove the residual tumor? If you could share your experience, that would be very great. I couldn't see my Mom struggle so much with the pain after the surgery. Any suggestions would be of great help. Thanks. -Ganapathi
Ganapathi Subramaniam <cguns_AT_hotmail_DOT_com>
Edison, NJ USA - Wed Oct 28 16:00:26 1998

Barbara and Tara, I encourage both of you to talk with your endocrinologists about Dostinex. I was on 25mg of Parlodel for many years and never really got totally adjusted to the dizziness and exhausted feelings I experienced. I made the change to Dostinex, and aside from some horrible dreams, initially, I have done very well on it and have experienced no side effects. I take 1mg tablet twice a week. The most difficult part of being on Dostinex is remembering to take it! Email me if you need further information. Lori
Lori Majestic <ToMajestic_AT_aol_DOT_com>
MI USA - Tue Oct 27 19:55:47 1998

Diagnosed with hyperprolatinemia/pituitary adenoma 22 years ago and been on Parlodel since it was approved in US, except during my one miracle pregnancy and nursing for over 2 yrs. I am now 47 and still get a period every month, however irregularly. Never had surgery to remove the tumor. Even after all these years, the side effects of Parlodel are debilitating - even a nightly dosage of only 1.25mg. I just don't know how much longer I can stand it. Very interested in any studies of long-term bromocryptine therapy and very curious about possibility of switching to Dostinex.
Tana Reiff <tanars_AT_aol_DOT_com>
Lancaster, PA USA - Tue Oct 27 14:51:57 1998

I have had two surgeries to remove my lemon sizes PIT Tumor. I am about to start my radiation treatments. If anyone has gone through this procedure and can give me any information I would greatly appreciate it. I have a web site that chronicles my journey through this process. If anyone has any questions that I may be able to answer, please do not hesitate to write me.
Steve Howard <showard_AT_one_DOT_net>
Cincinnati, OH USA - Mon Oct 26 22:17:41 1998

Hi Anja, In reply to your post re your microadenoma and would like to firstly welcome you to Sydney and to let you know that we have some fantastic medical staff and facilities available to us in this city. I was diagnosed in March this year with a 6mm microadenoma (prolactinoma) by my general Gp, Dr Melanie Gray (Bondi) who then referred me to my endocrinologist, Professor Ho at St Vincents Clinic, Paddington. Professor Ho is very understanding of both the psychological and physical effects of this type of tumour. He prescribed to me Dostinex back in March to treat my tumour and immediately all symptoms disapeared. I fell pregnant so I am currently off this medication however Professor Ho is monitoring the progress of my tumour throughout my pregnancy. To date, I have had no reaccuring symptoms so I imagine that I have had little if any tumour growth. With regard to your question on the side effects of dostinex, I personally never experienced any except maybe getting pregnant ! I hope this is of some help. Please let me know if you require any further info. I don't know how you are dealing with your tumour however for me personally I have found my experience with Professor Ho very reassuring. Kirstyn
Kirstyn <K.Buhagiar_AT_cst.usyd.edu.au>
SYDNEY, AUSTRALIA - Mon Oct 26 17:03:50 1998

Have been diagnosed with a macroadenoma on the anterior portion of the pituitary gland approx. 19mmx11mm. I'm not sure if what I've been going through is just stress or if they're actually side effects. I've been reading what you all have been writing and I don't think I can just pass it off as stress anymore. I've had this tumor that I know of, for about 2 years. Although it is a non-fuctioning tumor it's location has caused an increase in my prolactin levels which I think are around 100 now. I get alot of headaches, feel fatigued (especially during the winter months), and recently have been losing alot of my hair to name a few. My endocrinologist has recommended Parlodel, but no thanks. No dopamine agonists for me thanks! So I've been looking into surgery. Id like to hear from people about their experiences with surgery. What did they go through? How was it afterward? If anyone else out there is reading from Canada, did you feel the symptoms of your tumor worse during the winter months?? Anyways, good luck to everyone. Hopefully one day we'll all find a cure for what we have, or at least an explaination. Laura
laura <octane1_AT_usa_DOT_net>
Ottawa, ON Canada - Mon Oct 26 15:29:00 1998

I am 51 year old woman who had a pituitary tumor removed in 1991. I then when through five weeks of radiation treatment. Three years ago I had a 3cm basel cell removed from my cheek(wonderful surgon and the scar is covered with makeup)and just last week another one on the other cheek. These were a result of my radiation teatment. I hate my parlodel. If I do not take it with a dairy product just before bed, I suffer. Some times it just gets to me to remind me about where I am coming from. I am having a terrible time with mental stress, memory, hand pain and being tired all of the time. I start the day with a generic sinus pill and pain pill. I have been back every year for a MRI and visual fields. I have some sight loss and the blind spots in my car are scary. I am surprised at how many of us are out there. I am also surprised that we all handle it differently and have different side effects. I am really scared about my memory and recall. I will get a name almost correct and it has becaome a family joke that I was close. I do not want to be close. I want to be sure. I do not worry about my weight anymore( that is a Lie) because I can not do anything about it. My worry is being dependent on hydrocortizone and parlodel. I need info on the medication and long term effects. I load pills once a week. Three hormones, hydocortizone, thyroid, blood pressure, potasium, water pill and my wonderful parlodel. I need to know if there is something out there besides parlodel. Thanks.
Barbara Whatley <barbara_whatley_AT_hotmail_DOT_com>
CampWood, TX USA - Mon Oct 26 11:20:20 1998

Hello! I was diagnosed with a microadenoma in April this year. As I just recently moved to AUSTRALIA I would like to know if anyone knows doctors in Sydney to recommend. Does anyone know about the sideffects of DOSTINEX? Did anyone experience that the adenoma disappeard again from medication? Does someone have information abour HERBAL or NATURAL treatments? As I am very confused with my current situation at the moment I would appreciate every information very much! Thank you!
Anja <abeb.gmx_DOT_net>
Sydney, Australia - Mon Oct 26 2:26:06 1998

I am a 44 years old male and a month ago I have been diagnosed with a microprolactinoma. My prolactin levels were consistently in the 130 range, testosterone level was low and an MRI scan revealed a 3 by 6 mm microadenoma in the right side of the pituitary gland. This guestbook has been very helpful in learning about the disease and I would like to add couple of comments about my experiences so far. My first visit to a local endocrinologist was quite frustrating. Many of the questions I prepared for this visit remained unanswered and often I had a feeling that I knew more about this condition from one week of Internet browsing that he did from his life-long medical experience. He started to write a bromocriptine prescription even before I had a chance to ask him the questions. He could not tell me any advantages of bromocriptine over cabergoline, aside from the price and the fact that bromocriptine has been longer available for prolactinoma treatment than cabergoline. I arranged to have my second opinion by visiting one of the leading endocrinologists specialized in the treatment of pituitary diseases. He basically confirmed my suspicion that HMO cost regulations are a major factor in a decision to prescribe bromocriptine over cabergoline. Besides a treatment with a medication which seems most appropriate for my case, other possible treatments are: 1) leave the tumor untreated (in 80% of cases over a 10 year period such tumor does not grow), frequently monitor prolactin levels, conduct occassional MRI scans, and treat secondary hormonal defficiencies (testosterone replacement) - this treatment does not eliminate all symptoms and therefore was not recommended, and 2) surgical removal which seems to be a relatively low risk procedure nowdays if it's performed by an experienced neurosurgeon - it is the most likely way to eliminate the tumor, but there is about 40% chance that the tumor will regrow from the cells left after the surgery. I also learned from recent tests that my growth hormone level (measured as IGF-1) is low. I have a suspicion that HGH defficiency may have some connections to a number of symptoms I have been experiencing over the years: fatigue, weight gain, loss of muscle strength, lack of concentration, occassional depression mood etc. However, the only treatment of HGH defficiency that seems to be effective is through daily injections. Is anybody aware of any current work on developing a transdermal or similar HGH therapy?
Philip <filiprad_AT_ix_DOT_netcom_DOT_com>
Minneapolis, MN USA - Sun Oct 25 0:26:18 1998

This is a message for Sharon from Mukwonago, WI: Your address still doesn't work, for some reason. I read your posting and I am sorry that you are having such a rough time. I live in Canada, and I was diagnosed with a Prolactinoma 7 years ago. I am 27. I took Parlodel for a while and didn't like the side effects much either, although they weren't as bad as they sound for you. I am writing because there is a drug available in the States called Dostinex, that people are just raving about. Apparently it does not have the severe side effects of the Parlodel. I cannot get this drug, unfortunately, because it is not available in Canada. But you should definitely ask your doctor about it!!! I have heard people say it is a miracle drug, and lots of people who could not take Parlodel for the same reasons as you describe have found success with Dostinex. I wish you all the best. Don't hesitate to contact me if you need someone to talk to. I know how it feels when no one understands what is wrong with you. It is not like anyone can relate because most people have never even heard of it. I am very lucky that my husband is very supportive. Before I met him, it was a lot harder to cope. Take care. Alison Au.
Alison Au <baileyau_AT_autobahn.mb.ca>
Winnipeg, MB Canada - Sat Oct 24 14:17:44 1998

My husband has had acromegaly for 8 years, and is suffering from it's side effects. He had his hip replaced in June and will have his knee done next week. We are filing a disabilty claim listing acromegaly as the cause. has anyone had success with social security in this way?
Donna Rocap <rocapd_AT_algorithms_DOT_com>
USA - Thu Oct 22 21:05:47 1998

Has anyone heard of a prolactinoma being triggered by a stressful or traumatic event?
Adriane Lee
MS USA - Thu Oct 22 13:10:39 1998

I've just been told I have a pituitary mass while doing an MRI for unexplained hearing loss. I'm scheduled for a pituitary MRI and follow-up w/ a neurologist. I've been diagnosed with fibromyalgia, esophogial spasm, and other ailments. I'm scared to death and this page gives me some hope!
Dan Reed <dareed_AT_hotmail_DOT_com>
SW Hbr., ME USA - Wed Oct 21 22:06:35 1998

I'm 29 years old, and I was just diagnosed with a pituitary tumor on 10/13 after having an MRI. My physician just started me on bromocriptine last week. It hasn't been the best 2 weeks of my life as I'm sure many of you have experienced. I would really love some basic info. and to hear some of your coping techniques. Thanks.
Nicole Verban <VERBANNM_AT_mail.milwaukee.k12.wi.us>
Milwaukee, WI USA - Wed Oct 21 21:00:53 1998

Hi everyone. I am currently taking Dostinex and am having great results. I was wondering if anyone out there has had a successful pregnancy on this drug. Were you able to take the medication, or did you have to go off it. How did you feel. I am very serious about trying to get pregnant in the next few months, but of course I am very concerned. If anyone has any information I would greatly appreciate it. Thanks, Heather
Heather Marsh <N1122_AT_webtv_DOT_net>
Pt. Pleasant, NJ USA - Tue Oct 20 22:34:52 1998

Hi everyone! I am being treated for galcactorrea, pituitary tumor. My levels were up to 225 and now they are down to 55. I feel that Dositnex is really helping me a lot. I was wondering if anyone out there has been able to get pregnant on Dostinex, and if so were you taking the drug while you were pregnant or did you have to go off the drug. Did you feel O.K., and how is the baby. I really want to start trying. But I am very concerned and wondered if there is anyone out there with some information. Any information would be so helpful. Thankyou
Heather Marsh <N1122_AT_webtv_DOT_net>
Pt. Pleasant , NJ USA - Tue Oct 20 22:27:16 1998

Hello again. I have Cushings and I am getting referred for a breast reduction. I was wondering if anyone has gone through this and if there were any questions I should be sure to ask the surgeon? After all the mandatory pituitary and adrenal surgery, its kinda nice to have a choice on who will be doing this, but I havent a clue as how to determine who the best person for the job is.
susan
USA - Tue Oct 20 19:18:20 1998

Sharon from Mukwonago, WI: You posted a message on October 18, but your e-mail address doesn't work!!!
Alison Au <baileyau_AT_autobahn.mb.ca>
Winnipeg, MB Canada - Mon Oct 19 13:23:33 1998

I am so glad to find this site. I had no idea there were so many people who had the same problems as I do. I think this is great. I currently have a pituitary tumor. I was also on parlodel for 8 years and did not like it. I had many side effects and got very sick while on it. My doctor put me on dostinex. Two months into it I got pregnant and soon after I found out I was pregnant I stopped taking the dostinex. I ended up having a Misscarraige in my 3rd month. I am not sure what from but always wonder if it could have been the doxtinex I was on for the first 2 months of pregnancy.If anyone has heard of such a thing or a possibility of it I would like to hear from them. thank you.
Anna Daly <adaly_AT_uswest_DOT_net>
Mesa, az USA - Mon Oct 19 3:19:30 1998

I am a 40 year old woman who has had a pituitary tumor since I was 28 years old. I went a year not fealing well and doctors telling me their was nothing wrong. I have gone through so many changes from the mood swings, to the wieght gain. I tried the parladol but it made me so sick and irritable all of the time I couldn't take care of my family. I gone for these past years just trying to handle the head aches and the weight gain. I was wondering if anyone has any good suggestions. I was alway a very small person and now I have gained enough weight that I have asma quiet bad. I am so glade to see that other people are experiencing the same thing. I was able to show my husband and the doctors that this is a problem that is not just imagined. Please help with suggestions!
Sharon <knappman.execpc_DOT_com>
Mukwonago, WI USA - Sun Oct 18 21:13:35 1998

I had a large tomor removed 4 years ago. THERE STILL REMAINSTOMOR ON MY PITUITARY and I have no atch or thytroid function. I have to get a mri but have been told that the tomor has not grown . I can sleep 36 hr a day. Will hormone treatment give me back some energy and hel my dizziness. will it help my libet o
Paula Hubley <hub44_AT_webtv_DOT_net>
St John's , NF CANADA - Sat Oct 17 18:05:17 1998

WOW, I am so glad to have found this page. I was diagnosed with hyperprolactinemia 5 years ago. I am 27 now. I had severe headaches for 8 years and never had a period. At the age of 22 when I still had no regular periods and the progesterone stopped inducing them, my gynecologist tested my prolactin levels and found them to be around 3500. Two weeks later I had my first of 4 MRI's. I had a 3mm tumor. I was imediatly put on Parlodel. Within a month my levels came down to 300, and 5 months later to 20. My period started 2 months after I started the parlodel. Within 8 months I was down to 7. The parlodel was horrible: constant congestion, sinus headaches, nausea, and if I did not take it everyday I had to start over with small doses. After 4 years of Parlodel, my levels were starting to rise (never above 20) and the tumor shrank a little. Last March my doctor switched me to Dostinex. It has been wonderful. I feel like a normal person. The doc and surgen told me that the surgery was simple but if this was working to treat it with dostinex and see if the tumor becomes fibrotic and no loger produced prolactin. I also found something over the years that no one on this list has mentioned. I is very very important whether you are taking dostinex or parlodel that you are absolutely consistent. Do not miss a dose. Especially with parlodel! This is critical to the effectives of the drug. I am persuing a homeopathetic treatment now because long term hormone use has never been found to be good for you. I wonder what is going to happen to me 30 years from now because of this. I am so glad to hear that weight gain is not unusual. I thought I was losing my mind. I have never met anyone who has prolactinemia. This is a great resource. The last thing I would like to mention is that I went through 4 doctors to get to the one I presently have and I drive 8 hours from Charleston, SC to Charlottesville (UVA), VA to see him. It makes all the difference in the world. It helps to get a lot of opinions and feel-out who you trust.
Christy Constable <constabl_AT_musc.edu>
Charleston, SC USA - Fri Oct 16 20:00:32 1998

I have hyperprolactinemia and want to know if I will ever be able to live without dostinex, unless I have surgery. Has anyone ever had the adenoma go away? CVC
Christy Constable <libbyville_AT_hotmail_DOT_com>
Charleston, SC USA - Fri Oct 16 18:15:20 1998

I have a small prolactinoma. My symptoms are weight gain, lack of energy, heavy lead feeling in legs and feet, depression and mood swings, hair loss, numbness on left side of face, irregular sleep patterns, etc. I take dostinex, .25 twice a week. It has helped with the severe headaches I use to have. I am interested in hearing how others have dealt with mood swings and depression. Suggestions , please! Hair loss started before I went on dostinex. Anyone else experience this? Help!
Kathy <stephen_AT_ionet_DOT_net>
USA - Thu Oct 15 22:42:14 1998

I've just had a successful operation of a pituitary tumor on this past Oct. 1. My awareness that a tumor even existed came about on August 21 when I was suddenly losing my sight and I would find out that it was the tumor that had been enhanced and the tumor was touching the optic nerve or interferring with it as I understand it. So I hope my experience maybe shared with someone else. Please include my name on your mailing list. My mailing address is as follows: Berneda G. Earle 13903 Korte Detroit, Mi 48215 Tel: (313)824-5546
Berneda G. Earle <hvcl48a_AT_Prodigy_DOT_com>
Detroit, , MMi USA - Wed Oct 14 2:42:06 1998

My misfortune seems to have resulted from a head injury suffered while playing hockey. After the incident I began have headaches, something I was never acustomed to. Almost a couple of years later the headaches became severe with dizziness when bending over. I went to emergency hospital and was attended to by a neurologist. Was given a cat scan of the head and also a lumbar puncture for meningitis and the like but all proved negative. I returned to emergency two days later in likewise distress. Was seen by another neurologist given a tranquilizer and released. After 17 days and 25 pounds weight loss the headaches stopped. I suffered short term memory loss, loss of appetite, depression, loss of enery and total fatigueness. I went to many doctors before I was diagnosed with the catch-all phrase known as "fatigue syndrome". I didn't believe it and continued my quest to find someone who knew what they were doing? It does happen but it takes plenty of preserverance. I was also incorrectly misdiagnosed with MS. Finally I got the best, Dr. Ian R. Hart, Ottawa Civic Hospital, Ottawa, Canada and after a 30 consultation was told I suffered from a pituitory apoplexy (fancy name for stroke or hemorhage). In 35 years he had never had a case of it but my notes and indications told him it must be. After a MRI and a triple Bolus test (3 specific blood tests) ie. testosterone, insulin and another) it showed him to be correct. I had lost 95 per cent of my anterior pituitory (master gland). It was a long recovery because I was so long in getting correctly diagnosed. I am on total steriod therapy for the rest of my life (unknown grounds when taking such powerful drugs as testosterone, cortisone acetate, fludro-cortisone, and throid replacement) but I am 75 per cent of my normal self. There have been side effects: daily mood swings, aggressiveness when in arguements, depression, etc. I have good contacts and resources should anyone feel the need. Hope to hear from those in need.
Ken Smith <Ken.Smith_AT_thezone_DOT_net>
Port Saunders, NF Canada - Tue Oct 13 11:04:01 1998

Being on-line and diagnosed by my physician with a pituitary tumor - prolactin has made understanding my health issues. Thanks!
S Ward <eskimopi_AT_aol_DOT_com>
Olympia, wa USA - Tue Oct 13 1:40:19 1998

This is a great site! I was diagnosed with a prolactin secreting pituitary adenoma 5 years ago at age 21. Since then I have tried parlodel-no good. Made me sick. After my prolactin levels kept climbing, almost to 300, I was put on CV205-502. That was over a year ago. My neurologist advised no surgery at the present time because of my situation. I got married last year and would soon like to start a family. My tumour is only 5mm in diameter, but the doctor insists I will have to get it removed one day. Anyways, the CV205-502 has been working well. Causes a little nausea but I take it at bedtime. My prolactin is down to about 7-15. It fluctuates. My concern is that I know little about this drug that I've been putting into my body for the past year. There is little info on the net about it. Please e-mail me if you have any information on this drug - good or bad. The drug is still considered "experimental" in Canada. Thank you for the great resource.
Brooke <kauth.wings_AT_sympatico.ca>
Hamilton, ON Canada - Mon Oct 12 21:19:21 1998

I was wondering? I have acromegally and have had surgery to remove the tumor nine years ago. Is there anything to back up the thought that it can be passed on to my children? Is it heredity? Any comments or articles would be appreciated.
Steve Bechtel <Sbech10345_AT_aol_DOT_com>
Marietta, Ga USA - Mon Oct 12 17:08:47 1998

I am interested in finding information regarding patients who have been treated with Dostinex that have seen an increase in the growth of their tumor. Can anyone share how you were monitored when you were switched to Dostinex. Did you get blood test, MRI's? Was the switch to Dostinex recommended to you by your doctor---why was the switch recommended? Any comments from patients who were treated first with Bromocriptine then changed to Dostinex. I am interested in any information as to both the postive and negative aspects from the switch to Dostinex. Has anyone experienced the initial success of drug treatment and then been told that both Bromocriptine and Dostinex are no longer working to contain the tumor growth? Are there any recommendations for other drugs, natural treatment? Any information or ideas are greatly appreciated.
Beinder <m_beinder_AT_valley_DOT_net>
USA - Mon Oct 12 11:12:30 1998

A friend's daughter-in-law has a pituitary tumor. I wanted to print out some information for my friend.
JoAnn Meyers <jomey_AT_webtv_DOT_net>
stow, oh USA - Sat Oct 10 18:50:47 1998

I entered an incorrect address for my web site. Please go to http://w3.one_DOT_net/~showard/start.htm For information about my journey and recovery from Pit. Tumor surgery and hormone treatment. Good luck to all of you! Steve
Steve Howard <showard_AT_one_DOT_net>
Cincinnati, OH USA - Sat Oct 10 15:35:56 1998

I am interested in the use of Pergolide in the treatment of pituitay tumors.
Debbie Haw <Van6506(aol)>
Richmond, Va USA - Fri Oct 9 15:22:49 1998

Hello there! Thank you to the person who notified me that my e-mail address did not work. The correct address is below!!
Alison Au <baileyau_AT_autobahn.mb.ca>
Winnipeg, MB Canada - Fri Oct 9 15:07:45 1998

Hi there. After having a prolactinoma for 7 years, I finally got online and found this page, and it is great. I took parlodel for about three years, and then I decided to try the surgery. (It took me that long to work up the courage!). The tumour was L-shaped, so they were only able to remove about half of it. This was very disappointing, and it has had a big effect on my life. After the surgery, I wasn't too crazy about taking the parlodel again because it made me very dizzy and made my nose stuffy all the time. My periods were still really irregular, so my endocrinologist put me on birth control pills. I have been taking them for about a year, but I am very concerned about their effect on the tumor and am considering going off and back on parlodel. I have been reading a lot of your comments and some people refer to a drug called Dostinex. My doctor has never mentioned this. Does anyone have any information on this drug? Also, I would be interested in anyone's experience with prolactinomas and the Pill, as well as any problems getting pregnant. I am not considering children for a few more years, but my husband and I have always been concerned about our chances. I would really appreciate any information!! Thanks. baileyau_AT_autobahn.mb.ca
Alison <baileyau_AT_autobah.mb.ca>
Winnipeg, MB Canada - Tue Oct 6 14:32:17 1998

I have gont through two surgeries to remove a Lemon sized Pituitary adenoma. I am currently going through hormone therapy and doing very well. I have chronicled (sp) my experience on a web site, the address is http://w3.one_DOT_net/~showard/start.htm. I will be glad to answer any questions that anyone might have. I am surviving very well and have gonr through it. I will shortly begin radiation treatments to remove the remaining 10% of the tumor. Information about that experience will be included in my page in the next month or so. I have also included many links to other sites that you may find informational.
Steve Howard <showard_AT_one_DOT_net>
Cincinnati, OH USA - Mon Oct 5 23:35:05 1998

Hello this is Helma! It ha s been a few weeks since I wrote and live has chanched quiet a lot for me. I am no longer on medication since it was not doing any good and I have to wait for the V. A. to get permition to give me some other medication, so I will be without for the next two month. My levels are up in the 50 range witch is nothing compare to many others, but I am barely able to handle every day live and am hoping someone else is out there who knows how I feel. Many times I do not want to get out of bed in the morning and dealing with my spouse is another supject. Anyway, it givesa me great comfort to read everyones letters!
Helma Murton <mmurton1_AT_gte,net >
Albufquerque , N M USA - Mon Oct 5 20:48:59 1998

Dear Jay, you wrote sep 29 but you email address doesnot respond - a URL address problem .I have a reply for you but cannot contact. Feel free to email me directly Regards Bruce. PS Sorry to put this on the main board.
bruce <bruce_AT_om_DOT_com.au>
USA - Sun Oct 4 6:22:04 1998

I tried to sent this previously but do not think I did it properly. Please accept my apology if this is a duplicate. I just found this site and was very excited to learn about it. I was diagnosed with a pituitary adenoma 7 years ago. My last prolactin level (taken this month) was 245. I have been taking parlodel for about 6 years (currently taking 12.5 mg per day) and have not had any of the side effects such as dizziness, vomiting, etc. However; recently, within the last year, I have experienced memory loss and a low libido. I was married five months ago and my husband and myself do not understand this especially since I did not have this problem in the past. Has anyone else experienced this? after such a long time on parlodel? My memory loss is also very alarming. I am 28 yrs old and am worried it will continue to decline. I also began wearing contacts the same year I was diagnosed,until then I had perfect vision! I apologize for taking up so much space but this is the first time I have seen this site and am interesting in receiving info from anyone who has experienced these same problems. I would also like info from anyone who has gotten pregnant while on parlodel. Thanks, Jen
Jen <j-dprox_AT_erols_DOT_com>
Baltimore, MD USA - Tue Sep 29 21:04:23 1998

Hello, I am a 38 y/o male diagnosed Dec. 96 with 5cm. pituitary microprolactinoma. I was taking parlodel for the first year with side effects being a severe stuffed up nose every night, some nausea, and some increased head pains. The parlodel did lower my prolactin levels to normal range and my tumor did not increase in size at annual MRI. I am also getting quarterly lab work and quarterly vision field tests. My endocrinologist suggested Cabergoline or Dostinex that I take 2.5mg split into two doses a week. The side effects I have experienced with the Dostinex are...Day after taking meds I feel extremely fatigued, have trouble concentrating, have short term memory problems, and have more intense head pains. What I am wondering is if the Dostinex is making me feel this way or just my tumor? Some of my other troubles are...Weight gain, trouble speaking with people because of memory and concentration problems. When I am driving the car I am having problems paying attention even to the point of running a couple of red lights!! NO accidents thank God. I am also experiencing fatigue, sleeping problems, some sexual dysfunction, and some mood swings. I greatly welcome any responses from people experiencing similar problems. Address E-Mail to jayl2661_AT_aol_DOT_com Subject: Pit Tumor. Good luck to all of you! Thanks, Jay
Jay <jayl2661_AT_aol_DOT_com>
Spokane, WA USA - Tue Sep 29 2:41:18 1998

I am 20 years old and am suffering from hirsuitism. I was told that my pituitary level(?) is high. I am now seeking medical attention but have not in the past because I do not have family insurance (the college I attend, however mandates insurance for enrollment so I am covered during the academic year)My periods have always been irregular since they started (age 12). I thought I had PCOS, but my tests results were negative. My family is in denial that there is anything wrong with me and think that I am being vain for undergoing electrolysis. I think that the hair is probably the only visable symptom of a serious medical condition. I need to speak to someone supportive, especially because the excessive body hair depresses me tremendously. I need to contact a support group. Any suggestions?
K.W. <soubise_AT_bu.edu>
Boston, MA USA - Mon Sep 28 21:14:27 1998

I am looking for the information on the "cause" of petuitary microadenomas. I have one that secretes excess levels of prolactin.
Emily D. Haley <emshaley_AT_msn_DOT_com>
Portland, OR USA - Sun Sep 27 16:06:54 1998

Website information for Michigan Meeting updates. ( left out from previous posting) http://members.aol_DOT_com/tomajestic/ Lori's website has much to explore for pituitary patients from all over the world. Oct 7th a meeting will be held in Michigan with guest speaker Dr. Viken Matossian MD. The topic will be the effect of hormonal disorders on emotional functionioning. Reasearch on the brain-hormone interactions will be boiled down to a few practical messages for patients and families. contact Teresa Sullivan 810 227-5615 for more details
Teresa <Sullivan>
Brighton, MI USA - Thu Sep 24 18:15:36 1998

I have cushings disease,last year I had two pituitary operations and 6 weeks radiotherapy.Istill have high acth levels and high cortisol levels, today I have decided to go for a bilateral adrenalectomy,probably by the posterior route.Has anyone experience of this operation? recovery time? etc thanks rachel.
rachel <atkinben_AT_aol.co.uk,>
uk - Thu Sep 24 17:36:47 1998

I am a post-prolactinoma patient. The symptoms are very hard for most males to discuss. If anyone would like a feed- back from me, just ask. I will be frank and honest. I am not shy of any question, no matter what.
Tom Stewart <cctom_AT_wt_DOT_net>
Houston, TX USA - Tue Sep 22 20:35:59 1998

Pituitary Tumor Education and Support Group Meeting October 7th Wednesday _AT_ 6:30 PM.To 8:30 PM. Brighton Public Library. Guest speaker Dr. Viken Matossian, MD. Director Board Certified Adult & Child Psychiatry Topic; The relationship between Nerves , Hormones & Emotional Well-being Please RSVP to Teresa Sullivan 810 227-5615 or email sully_AT_ismi_DOT_net Brighton Public library is located at 200 Charles H. Orndorf Dr. This Drive runs beside the Meijers store, off Grand River. 810 229-6571 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ November7th Henry Ford Hospital Pituitary Disorders Center Education and Support Group Meeting. We will discuss goals, patient survey, and agenda for 1999 Location West Bloomfeild medical Center ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ West Bloomfeild Medical Center. is located at 6777 W. Maple Rd. ( 15 Mile ) Between Halstead and Drake. 248 661-4100 Visit website for up dates
Teresa Sullivan <sully_AT_ismi_DOT_net >
Brighton, MI USA - Tue Sep 22 18:52:39 1998

I am locking for new information about galactorrea in a case of fever of unknow origin.
vilson ochman <rsf4614_AT_pro via-rs_DOT_com.br>
porto alegre, rs brazil - Tue Sep 22 11:06:54 1998

Hello. Just about two months ago I was diagonsed with an enlarged pitituary tumor. My prolactin levels were at an astonishing 560! I am 18 years old and was wondering if anyone is around my age or would like to talk. I have been perscribed Dostinex and sofar I have had no problems. I feel bad for the ones who have had side effects. I hope to find out what other people have been told by there doctor. I also am very concerned for my future re: haveing children. If anyone has anyhing to share please contact me. Thank You!
Christy Howard <cinnamongirl131399_AT_yahoo_DOT_com>
MI USA - Mon Sep 21 22:35:27 1998

Hello, I was diagnosed with a pituitary adenoma in March 98 and started a course of bromocryptine but could not stand the side effects after five weeks. I then started on cabergoline and am currently taking one tablet in two half doses each week. Apart from the fuzziness and the odd headache and nausea there are two other symptoms which I would be interested if any body else has had. 1. I have a constant very high pitched ringing in the head (like tinitis I guesss) and 2. my skin around my nose gradually became more sensitive and then itchy and my doctor prescribed a cortisone cream which did very little and then Metrogel which is a strong antbiotic cream which also did very little . The irritation has increased quite dramatically this last week and has extended across the left side of my face like an acne. It is now quite serious. I am seeing a skin specialist next week but am wondering if there will be anything he can do. Has anybody else had a sensitivity like this taking cabergoline? I am trying to ascertain whether it is conincidental or a result of taking the cabergoline for the five months. On the positive side my prolactin level is now within the acceptable levels. Bruce Ballina , Australia.
Bruce <bruce_AT_om_DOT_com.au>
NSW Australia - Wed Sep 16 8:35:49 1998

A Big THANK YOU!!! to all of you who "encouraged" me to get on the ball and start my Parlodel (Bromocriptine). I am proud to say I have joined the ranks of all of you who are actively working to regain better health . I did hear from someone who had good results on this drug and it helped me take the last step in beginning my tumor treatment. After all 15 years is a long time and I didnt want to rush into things! Ha! Honestly I am thankful for all who share their stories here. I went from being all alone back in the 80's to having a tremendous support group now in the 90's. I know first hand how frustrating and frightening this medical jungle can be and I wish all of you courage as you work together with your doctors to find the best treatment for your situation. I must say that having a doctor that will listen and be supportive is critical. I really went through the mill with cold doctors who just saw me a another person to put on the surgery schedule with out dealing with me as a person. The doctor I am seeing now is the perfect balance of knowledge and caring. Please dont give up until you find a doctor that you can work with. After all it is your life and your body and you know how you feel better than anyone else. I have started on the Parlodel at a very low dose and I am gradually increasing until I reach the desired results. I had heard so many horror stories about terrible side effects. I had a doctor teach me how to start a drug slowly and it has helped me greatly. If you are having side effects that make you miserable it could be you are on too strong a dose to begin with. I started on 1/8th of a 2.5mg pill of bromocriptine the first week. Then 1/4 the second week and then 1/2 the 3rd week and so forth. Talk to your doctor. I know it has worked for me and has given my body a chance to adjust. Wow I have sure rambled- God Bless to you all. Jalyne
Jalyne <jfidler_AT_slc.shorelin.wednet.edu>
seattle, wa USA - Mon Sep 14 23:24:51 1998

It has been over a year since my diagnosis and I am very happy to say that my tumor has steadily and progressively gotten smaller through medical treatment with Dostinex. I was diagnosed on 8/21/97 with a 2+ cm macro adenoma. At that time, my prolactin level was 19,000 ng/mL. (See my initial posting in '97 guestbook toward the end of September.) I take 1.0 mg twice a week. Both my endocrinologist and radiologist are very pleased with the latest MRI results stating that the tumor is shrinking at a quick rate and both have downgraded it to a micro-adenoma. My prolactin level has been normal to below normal since the second week of September 1997. Luckily, I have not had to have any other medical treatment such as hormone replacement or surgery. The most significant change I've experienced is that my weight has dropped over 35 pounds since starting the medicine last August. I still experience a "buzzing" in the front part of my head, occassional lethargy and mood swings. Compared to what I felt like this time last year, I'm a new person. I'm very glad that this site is available to us. It has helped me meet many new friends with similar conditions. It helps knowing that you're not alone with this especially when first diagnosed. My wife or I would be happy to communicate with anyone who may want to. Please contact us at the below address. Good luck to all of you.
Tom Riordan <ibframed_AT_access995_DOT_com>
Beaver Falls, PA USA - Mon Sep 14 19:28:06 1998

Is any one out there taking the new protocol drug for acromegaly called Trovert. Thanks
Steve Bechtel <Sbech10345>
Marietta, Ga USA - Mon Sep 14 17:44:45 1998

Have just been told that I probably have 'Acromegally', more tests this week. Have had headaches for the last four years but thought they were as a result of badly fitted bridge. Routine MRI of jaw joint instead found 'a 1.0-1.5 cm enlargenment of anterior lobe of Pituitary gland' ie a Tumour!, very confused as attitudes here seem to imply it is nothing to worry about. Then I found your guestbook and a whole new undiscovered world. Any advice please, for a life that is about to be turned upside down......
John Scott-Laws <johnsl_AT_emirates_DOT_net.ae>
Dubai, UAE - Sun Sep 13 3:50:05 1998

Hy,my name is Helma and I have had a 6mm P.T. for about 1.5 years.I was on 15mg of Bromocriptine a day and it did not help, so they gave me Pergolide and I am of that now,too. My prolactin levels are very stuporn and are not coming down. I am getting a bone density test next week since I am showing signs of ostiop. This is a rather frustrating disease,since most of my Doctors do not beliefe that weight gain, memory loss and so on are symptons of this. Does anyone have problems explaining how they feel and actually getting someone to believe that these symptons are for real?
Helma Murton
USA - Sat Sep 12 12:23:37 1998

I am a 25 y/o male and suspect that I may have a pituitary tumor or disfunction, but the doctors I have seen are very reluctant to pursue the possibility. I have several symptoms that I feel are consistent with a P.T., and was wondering if anyone else out there shared the same or similar symptoms prior to diagnosis. Here are the symptoms- 1. Joint pain and "popping" 2. Daily frontal headaches, thought to be sinus headaches, but that failed to resolve even after sinus surgery, 3. Visual changes, mainly floaters in my peripheral vision, but sometimes things appear darker out of one eye than the other, 4. tremors, almost unnoticeable to anyone but me, mainly in my hands and face (lips, eyelids, etc), 5. a feeling I can only describe as "strange" around my mouth and chin, almost like a loss of dexterity in my facial muscles, 6. recent return of acne after nearly ten years without, 7. and recent weight gain. If anyone experienced a significant number of these same symptoms prior to dianosis, please let me know. Thanks for your help.
Matthew <cvaprn_AT_aol_DOT_com>
USA - Sat Sep 12 1:29:43 1998

Darlene, Your email address isn't working.
Kirstyn
Australia - Thu Sep 10 22:32:06 1998

Ihave been on Dostinex for 3 months and have had great success-Prolactin dropped from 60 to 4-no side effects, and had my first menstrual cycle in 3 1/2 years! Want to get pregnant. Has anyone gotten pregnant while on Dostinex and had any problems? If anyone has any info on taking Dostinex while trying to get pregnant, this would be really helpful. Please help me! Darlene
Darlene <sbutner _AT_msn_DOT_com>
Poway, CA USA - Tue Sep 8 3:01:00 1998

After treatment of a neuroendocrine cancer in the left sinus I am dealing with irrigation problems with a fistula. The fistula is leaking into the cheek. Is there any know cases of this kind of problem and is there help for it?
Debbie <dnat_AT_tyler_DOT_net>
Tyler, TX USA - Tue Sep 8 2:20:13 1998

Jalyne, you will be fine on the Parlodel...please take it, it isn't doing what it needs to do for you by sitting in the medicine cabinet. I send you my love, Lori To Chris, I read your page, and the false memory symptoms you feel are associated with Parlodel. I havne't seen that documented anywhere, but it could be possible. Your page is filled with a really complete list of symptoms, if you can, please share your resouces with all of us. To EVERYONE: There is a NEW study being done by a hospital in Michigan for those of us with Pituitary Disorders. For information, and to participate, please click on the above URL and go to the page marked "Research". Lori
Lori MI USA - Mon Sep 7 19:40:59 1998

To anyone who needs it, Parlodel can be of great help. However, because of its side effects, the blessings could be somewhat mixed. In a psychotherapy situation, could some of Parlodel's more ill-natured side effects make a patient more susceptible to the controversial False Memory Syndrome? Please click the homepage URL and read the story. Feedback links & topic forum are provided. Your comments would be highly appreciated.
Chris <cinclus_AT_geocities_DOT_com>
- Fri Sep 4 8:11:33 1998

I just started parlodel again after being off it for 1.5 years. The first 5 days (I took one at night until I felt I could handle more) were tough. I added a second one last Sunday....I'm handling it better by the day. I've always handled it pretty well though. The good news is the improvement was immediate!
mike <mikep_AT_vornet_DOT_com>
Tracy, CA USA - Thu Sep 3 19:07:28 1998

HI Jayleene, For fifteen yrs you did nothing?? It is proven that the tumors will grow without medication and that didn't stop a dr from putting you on medication?? I know you levels weren't that high but high is high .. I wish you luck ..it is important to get those levels down. If you have bad side effects than go of asap and push for dostinex and if those side effects are bad try Permax..etc etc chris
chris
USA - Thu Sep 3 15:21:00 1998

Hello fellow pituitary patients!!!! Its been a long time since I have checked out this site! I am the one who was diagnosed in 1983 with prolactin levels over 200. It has been 15 years and I am finally getting on the band wagon and returning to the wonderful world of medicine! ? I found a wonderful endocronologist here in Washington thanks to this wonderful guestpage. It took me 2 and 1/2 months to get an appt and now I am finally on my way to lower my prolactin (It is now over 1300! bummer!) Now the problem is. . . I have my trusty bottle of Parlodel (bromocriptine) in my cubbord and I am waiting for the right moment to take the little bugger! I am very concerned that I won't tolerate the drug and that after I stop the drug, that my tumor will grow more quickly. After all it has been quite slow growing. Is there anyone who can give me some good experiences having taken bromocriptine! (My doctor thinks it reminds her of Superman and kriptonite!!! Ha!) I really wanted to start on Dostinex but my doctor feels bromo is the place to start first since Dostinex has a half life and bromo doesnt. I am very sensitive to medication as I found out this year when depression got the best of me and I went on Effexor. I really am moving forward, Just slowly!!! I appreciate all of you who have been so helpful and kind in writing to me. May you all be blessed with peace and healing. Let me know if you have any experience with your tumor growing due to the stopping of drug theraphy. (Please forgive my spelling! It's late!)
JayLynne <jfidler_AT_shorelin.wednet.edu>
wa USA - Wed Sep 2 23:29:00 1998

My name is Dragana. I live in Yugoslavia(former Yu). I also have a problem with hyperprolactinemia since I was age of 21. I am 33 year old now, I have one child after treating sterility for almost 3 years. Lately I tried new drug called Dostinex and I want to recommend it to everyone because there are no side effects. Looking forward for new informations about this subject. Thanks.
dragana bukur <draganab_AT_yahoo_DOT_com>
USA - Wed Sep 2 3:08:31 1998

Hey Guys!! Remember me? I had the 3 cm, non secreting tumour...removed 8/24 at Emory in Atlanta. I had no problems with the surgery, but my cortisol and thyroid were low, so I am on low doses of that. Am feeling much better. My pit tumour turned out to be a craniopharyngioma...my dr. says very rare in my age...49...and was benign. My eyesight has already improved, my headaches are gone and my heel spur has been helped by the hydrocortisone. I am seeing an endocrinologist, too, for these things. I am being very careful with my recovery....no lifting, no bending, no sneezing, no coughing, etc. Don't want to do it again, but it was not nearly as bad as I thought it would be. Much luck to those of you who are having these problems....my prayers are with you
Martha <mhyeager_AT_surfsouth_DOT_com>
GA USA - Tue Sep 1 21:20:12 1998

pituitary_DOT_com pituitary tumor info
sue
USA - Sun Aug 30 11:37:02 1998

Pituitary Tumor Network Association has a site plush pulblished books availabel through the site. They also have chat rm, bulletin board,ask the experts section and yearly conferences for paitient to attend. There are two conf. coming up one in Philly,PA and one in Calif!! Check out the calendar for up coming dates.
,
USA - Sun Aug 30 10:04:50 1998

My name is Valerie. I am 37 years old. I was told a year ago of my pituitary tumor. It is very small. My prolactin has been normal 8 - 11. Recently up to 28, still low compared to most of you. I have had severe headaches, my hair is growing at an incredible rate. I will have my prolactin checked again in Sept. I seem to be very lucky and early on in this after reading some of your comments. I am nervous though because my doctors made this out to be no big deal. I wish everyone good health.
valerie <liatris88_AT_aol_DOT_com>
in USA - Sat Aug 29 9:27:14 1998

I can't find one single place online other than this that mentions pituirary tumors. Can that be? I want to know basic symptoms. Can you help? Thank you. I am dealing with breast cancer, caught it small so have not needed chemo, radiation, tamoxifen or drugs, but continue to have chills, no matter how warm it is outside, slight nausea, tireness, hairloss at front, forhead scalp, bloating.Thanks for suggestions.
Donna <kjmq25a_AT_prodigy_DOT_com>
USA - Wed Aug 26 10:34:02 1998

Back in 1990 I was diagnosed with a pituitary microadenoma. I started on the dreaded Parlodel, which made me vomit, faint, and feel ill constantly. I tried for several months, but was very noncompliant. I was then switched to Permax, which wasn't as bad. However, I still was unable to lead a relatively normal life. I switched endocrinologists and went back on Parlodel per the MD's request and I vowed to be compliant. I ended up taking 7.5mg three times a day, but felt lousy and very tired. The adenoma did decrease from 9mm to a 5mm cyst-like adenoma. I still wasn't happy with the way I felt and thought there must be a better drug. Once again I switched endocrinologists. I'm now on Dostinex and feel like a normal human being. Aside from the drug costing a fortune, it has been a relief. My level is down, not enough, but getting there. I'm interested in hearing more about the side effects, research being done, risks associated with pregnancy while on the drug, and the doses that others are on. I am taking a rather large dose, 1.5mg three times a week and seem to be cycling normally. Anyone else taking this dose? This is great to know that others have had experiences similar to mine. This site is very helpful and makes you realize that many people have this problem .
Denise <uslacker_AT_bellatlantic_DOT_net>
Deptford, NJ USA - Mon Aug 24 22:47:16 1998

My wife has been diagnosed with hypoprolactemia (sp?). At first she was taking parlodol, but the side effects were too much. Now she is taking Dostinex and it seems to be much better. Her prolactin count runs between 100 and 400. Now she is interested in having Gamma Knife surgery to have the tumor removed. Has anybody else been through this procedure?
Jim <jimmcconnell_AT_usa_DOT_net>
Kaneohe, HI USA - Mon Aug 24 19:40:52 1998

Regarding your message posted: 'Tim Drowley Manchester, England., England. - Thu Aug 20 9:22:53 1998' you may have to repeat with your e-mail address.
Dave Auger <augerdb_AT_together_DOT_net>
Groveton, NH USA - Sun Aug 23 20:11:28 1998

Hello everyone. I had a pituitary tumor removed and me entire gland was removed in the proscess. I am in the early stages of hjormone replacement and I am wondering what the process entails and what you have gone through. My surgery was on July 27th and I am still only taking DDAVP and Prednisone. I thought that the replacement would be more extensive than this. Does anyone have any experience that they would like to share with me? I could use any information you have to offer. Thanks in advance, Steve
Steve Howard <showard_AT_one_DOT_net>
Cincinnati, OH USA - Sat Aug 22 22:57:57 1998

Looking for any info on Pituitary Gland!
Mike Kneese <Rumor_AT_gte_DOT_net>
Lovington, NM USA - Fri Aug 21 15:36:04 1998

Looking for any info on Pituitary Gland!
Mike Kneese <Rumor_AT_gte_DOT_net>
Lovington, NM USA - Fri Aug 21 15:35:49 1998

Hi everyone...I was diagnosed in 1992 with a macroadenoma secreting prolactin. Since then I have had 2 surgeries and raidiation treatment. I gained over 60lbs in 3 years and have had boughts of depression. I recently found out I had Cushing's caused by my prior Dr. perscribing cortisol, when it was not needed at all. I was on cortisol for over 3 years and finally became so frustrated with symptoms that my prior Dr. ignored so I decided to switch Dr's. Since then I have been taken off Cortisol and also have found out I have Acromegaly and am on injections of sandostatin for it. I have lost 25lbs and am finally feeling a little better. I know I have a long and bumpy road ahead, but I feel I am finally going in the right direction. If anyone has had similar experiences I would love to hear from you. Take care all.
Eileen <EILJON_AT_prodigy_DOT_net>
USA - Fri Aug 21 8:07:55 1998

I am the Nurse Specialist in Endocrinology at the Manchester Royal Infirmary here in the sunny (!) U.K. I shall be presenting a session at the Society for Endocrinology National Nurses Conference in Sept, 1998 and thought it would be a good idea to "surf the net". I am extremely impressed with the depth and scope of the information on endocrine disorders and will definitely recommend this site to patients and nurses as a shining example of collaborative health care in action . Keep up the good work. Tim.ommend
Tim Drowley
Manchester, England., England. - Thu Aug 20 9:22:53 1998

Hi everyone. This is a great site. I have had a prolactinoma for 5 years now, being treated with bromocriptine, but not really controlling it. My endocrinologist is now trying me on Norprolac, an unapproved drug, still in the testing stages, as I am trying unsuccessfully to become pregnant for the second time. My prolactinoma started after my first pregnancy. Anyone out there know anything about Norprolac? Thanks.
Lesley Ann <landrews_AT_atcon_DOT_com>
Sydney, Nova Scotia Canada - Wed Aug 19 21:19:05 1998

Hello Have taken a break from visiting this site... been busy with my own webpages.. but glad I stopped by to check in on some great people.... Fellow Pit Patients... Had my surgery in 1978.. been taking parlodel since and prolactin level in somewhat stable between 7 and 12 Will drop by again.. take care to all.
Carla D. <kencarla_AT_erols_DOT_com>
Alexandria, VA USA - Wed Aug 19 16:03:46 1998

Hello all.. I am a 20 year old female desperately seeking advice. I am lactating, and have been doing so for almost a year now. My prolactin level is 19, which my doctor told me is normal. I had one MRI which showed nothing, but I experienced a panic attack during the MRI, and moved around a lot. Could this movement have marred the results in some way as to indicate no tumor where there really was one??? I have experienced several other symptoms of a hyperprolactemia such as weight gain, lethargy, migraine headaches, insomnia, and blurred vision??? I need advice as to my next step.. Do MRI's ever mess up or Miss a tumor>>?? I am so confused?
Liz <Terraliz_AT_aol_DOT_com>
Long Island, ny USA - Tue Aug 18 22:52:38 1998

My daughter is 17 almost 18 and has had a prolaction level of 75 for almost 2 years She started out having headaches and depression, now over the past 3-4 months she has gotten worse. She is uncontrolable, she has very bad mood swings, agressivness, and alot of anger. She talks so fast I can't keep up with her. Alot of times she doesn't make any sense because she goes from one subject in depth to deeper subjects that are sidetract. She will sometimes change and be real loving. And one more thing, she has a very short temper when she's angry. She doesn't realize sometimes how bad she gets. What could be wrong with her? She had one MRI that was normal but the doctor said she produces too much cortisal or adrenalin. Please help me before I go crazy. Oh, one more thing, she's had breast milk for several years without ever being pregnant. He has her on prozac which I think is making things worse!!! Please help!!!! kimmya_AT_tima_DOT_com
Kim <kimmya_AT_tima_DOT_com>
In USA - Tue Aug 18 3:52:32 1998

I was diagnosed and surgically treated for a pituitary tumor one year ago. Now, I'm experiencing some other neuro symptoms and my endocrinologist says that it may be a disease known as Myasthenia. Has anyone else experienced this disease along with their pituitary problems?
Cathy <Ldytrcker1_AT_aol_DOT_com>
Dover, TN USA - Tue Aug 18 0:08:57 1998

Has anyone seen any research about the prevelence of pituitary tumors in certain areas of Canada or the US? I live in an area that has a high rate of cancer, and pituitary tumors (rumoured due to some of the past industries in the area) but of course no one wants to think there might be a relationship. I just wondered if anyone else there had been able to compile such information - could be interesting...
sleblanc <sleblanc_AT_mnsi_DOT_net>
ON Canada - Fri Aug 14 12:05:12 1998

Hi. Greetings from Canada. I have a prolactin level of 72 and I am 24 years old. Experiencing the usual symptons : headache, tired, lactation, blurry vision. But my ears have also been bothering me. Have any you experienced trouble with your ears? I would really appreciate your help. colleen_AT_juniperlumber_DOT_com
Colleen Sweet <Colleen_AT_juniperlumber_DOT_com>
Juniper, N.B., N.B. Canada - Fri Aug 14 10:57:36 1998

Hi everyone in NEW ENGLAND. We are moving ahead on starting a support group. The next meeting will probably be in September. So far, we have people in Conn, RI, Mass, and NH. If anyone is interested, please contact me.
Diane <parishrd_AT_netway_DOT_com>
Boston, MA USA - Fri Aug 14 5:01:51 1998

Thanks for your site. It was most informative in dealing with my Pituitary Tumor, operation, radiation and follow up.
Paul Morrison <pmorris3_AT_tampabay.rr_DOT_com>
Seffner, FL USA - Wed Aug 12 18:43:52 1998

Sorry again! My entry is below, re. pregnancy and high prolactin levels. I'll try my address again - it's as follows:
Michelle <rustic_AT_dnvr.uswest_DOT_net>
Evergreen, CO USA - Wed Aug 12 17:13:56 1998

I would like to know if anyone has been able to get pregnant with prolactin levels in the 30's. At high doses of Dostinex, my prolactin levels just won't go any lower. We were just given the green light to go ahead and try to get pregnant. I don't want to get my hopes too high. Has anyone in a similar situation had any luck? Would love to hear from you.
Michelle <Michelle_AT_rustic_AT_dnvr.uswest_DOT_net>
Evergreen, CO USA - Wed Aug 12 17:06:53 1998

I was just diagnosed with hyperprolactinemia. Now I am on an information seeking rampage! Thanks for your site!!!!!!
Melinda G. Reichert <MGRcountry_AT_AOL_DOT_com>
Pipe Creek, TX USA - Tue Aug 11 15:53:00 1998

I got hormonse tested when I was 18 and found Testosterone level(1.45) which is much higher for female, have hirsuitsm. After 3-4 years I got serum testosteone checked (tested 2-3 times) again and is showing normal all the time (0.22). Now I am 29 and suffering from unexplained infertility? has anyone heard of this kind of a problem?
Seema <seema_meghani_AT_hotmail_DOT_com>
Jercy, USA - Tue Aug 11 6:09:41 1998

S. Lusk, In reply to your question regarding prolactinomas and weight gain....there is a relationship! You can email me for info, or check out some links on my page: http://members.aol_DOT_com/tomajestic
Lori <ToMajestic_AT_aol_DOT_com>
USA - Mon Aug 10 23:06:26 1998

Hello everyone. I have Cushings Disease, and have had the tumor removed, 5 weeks of radiation, and both of my adrenals removed in their entirety. Its been a couple of years post all of that, and I am now taking cortisone acetate and florinef to replace my adrenal functioning. My biggest concern at the moment is the SLOW delay in my recovery. That is, I cannot get lower than about 185 pounds, and my energy levels are still sluggish. The mood swings are there, although none of this is anywhere near as bad as before, but I know that this cannot be "normal". My question is: is there anyone out there, whether it be a fellow patient or medical staff, that can offer any reassurance that I have a chance at any improvement in the future? I have tried exercise, but anm limited due to stress fractures in my feet. I just get so frustrated sometimes when I hear that there is not much else to do but wait - I dont want to wait!I am 29 and would like to get on with my life. Anyway, any suggestions on how to get this weight off would be greatly appreciated (its been stable for a year) or coping strategies from others. Thanks, it feels a bit better to vent a bit!
S. LeBlanc <sleblanc_AT_mnsi_DOT_net>
ON Canada - Sun Aug 9 9:43:09 1998

I am looking for any information on lymphocytic hypophysitis. I have been told this is a very rare disease. Is it? Thanks Mary ranch_AT_nntc_DOT_net
Mary <ranch_AT_nntc_DOT_net>
NE USA - Sat Aug 8 18:23:55 1998

I had a Hyperprolactinimia Pituitary tumor found in July 1995. They removed the Tumor Feb. 1998 because it was pressing on my Optic Never and had growned even though I was taking Parlodel. I had my sergery on Monday went home Thursday evening I slept in a chair I couldn't lay down. Then on Tuesday I was taken back to emergency I Had Spiaial Meningitis Because I had a Spinal Leak. They put in a vaulve to releive the pressure off the Leak, It healed on it owed. I remained on IV's at home for two more weeks for the meningitis. I Had a MRI in June and they didn't get all the tumor so now I'm taking Radiation Treatments.
Luella <jennings_AT_mill.tds_DOT_net>
Millington, MI USA - Fri Aug 7 22:37:21 1998

Have any of you had any experience with a lumbar drain? I have to have one after my surgery because my tumour is so large (3 cm.). Also, can anyone give me an idea of how long I will be in ICU after the surgery? (Is there a chance I might not go to ICU?) I have enjoyed reading everyone's messages and looking around. I have found some good info, but I am wondering about the above questions. Thanks Martha
Martha <mhyeager_AT_surfsouth_DOT_com>
USA - Thu Aug 6 22:55:40 1998

My mom has been sick for three years now. Her new doctor and his colleagues were sure she had Cushing's, but her tests came back negative. He spoke to an endocrinologist who said she didn't have cushings. he did not have any answers for why she should have all the symptoms, but test negative. Does anyone have any suggestions of similiar negative test results or similiar diseases to Cushing's? We live in a very rural area and specialists are hard to come by. By the time you can get an appointment, you might be dead. Mom is losing all hope. Her legs are so weak and sore, she can hardly walk. Capillaries are breaking on her arms and legs causing large bruises whose skin breaks off. She's ashamed to go out in public especially with her large abdomen, chubby face, and back hump. Please if any of you out there have any suggestions I would appreciate them all. thanks for listening-Cathy
Cathy Conty <conty_AT_thegrid_DOT_net>
San Miguel, Ca USA - Thu Aug 6 22:30:10 1998

Hello all, so glad to find another place to chat with pituitary folks. I have just been diagnosed with a 5mm pit tumor. My symptoms include the usual lactation (but my prolactin level is normal (9.6), blurred vision, headache, moodiness, insomnia. The not so characteristic are sudden onset high blood pressure and numbness and tingling on my right side of face, down to my right arm and now my left hand is getting that way. Just did a cortisol testing and will let you know what they find out. Take care.
Cindy <evanst_AT_tminet_DOT_com>
Ca USA - Thu Aug 6 22:25:41 1998

Has anyone been to the Pituitary Treatment Center at UCSF, or spoken to Doctor Charles Wilson? I just found out about the center and would like to find out about anyone's experience with the center and its doctors. Thanks. Ps..If anyone knows of other specialists in the Bay Area please let me know, I haven't gone to one yet.
Lori <shop_AT_montu.berkeley.edu>
San Francisco, CA USA - Thu Aug 6 11:44:21 1998

Here is my latest update. I've been experiencing a bout of hyperthyroid after years of hypothyroid. Also my prolactin is on the rise after nearly 1.5 years of being off bromo. Looks like the hoped for "cure" has not taken place....I'll update again soon. Hope all you are doing well!!
Mike Pihlman <mikep_AT_vornet_DOT_com>
Tracy, CA USA - Wed Aug 5 20:12:46 1998

I am more than interested in any updates available to me as I have been diagnosed with a pit adenoma --13-15mm -- surgery is suggested....... Thanx!
Mari Grace Barnhart <magimystic_AT_aol_DOT_com>
USA - Tue Aug 4 15:30:03 1998

Your site is very informative!!
Vidican Sorin <vidican_AT_usa_DOT_net>
Cluj-Napoca, Cluj Romania - Tue Aug 4 13:51:57 1998

Does anyone out there know about the possibility of GH helping to thin out the endometrium---when it is too thick. I read somewhere that taking growth hormones has thinned out her endomitrium and eliminated the necessity for a hysterectomy. My endometrium also is too thick and I also am facing a hysterectomy. If you know anything about this, please let me know. My gyn just doesn't see the connection.
Sandi <sandib_AT_wt_DOT_net>
USA - Sat Aug 1 14:01:21 1998

I am about to start a study group taking a drug called Trovert.It is designed to lower my somatosiden levels. Is any out there that knows much about this new drug. Is any one out there that is also in this study. I am finding little information about this drug. Thanks
Steve Bechtel <Sbech10345_AT_aol_DOT_com>
USA - Sat Aug 1 11:17:20 1998

I am concerned about weight gain (15 lbs. in 3 months). My prolactin level is 103 and I am not currently taking Parlodel. What is the relationship between weight gain and pituitary microadenomas?
S. Lusk
USA - Thu Jul 30 20:54:50 1998

I have recently been diagnosed with a rare condition called Sheehans Syndrome. I would like to find out as much information as I can on this subject and make contacts with others who have the same condition. Please e-mail me if anyone has information about this syndrome. Thanks, Natalie
Natalie Lomeo <slomeo_AT_csrlink_DOT_net>
Clarks Summit , PA USA - Thu Jul 30 13:00:33 1998

I noticed that some of you have had children with prolactinemia. Some of you state that you were on Dostinex while some of you were on Parlodel. My question is, did you remain on the medication while you were pregnant, or did your'e doctor advice you to go off it? My doctor said it could be harmful for me to go off medication. I could lose my vision. But he does not no what happens to baby if taking medication. If anyone has info, kindly send me some info. Thankyou
Heather <N1122_AT_webtv.(Anthony Marsh)>
Point Pleasant, NJ USA - Wed Jul 29 23:10:51 1998

Does anyone have any advice for someone diagnosed with empty sella syndrome? The symptoms include obesity, fatigue, joint pain, tingling in fingers and wrists, headache in back of right side. Doctor says fibromyalgia, etc.
Sue <jgobert_AT_jas_DOT_net>
TX USA - Wed Jul 29 17:36:04 1998

Wanted to let everyone know that I've already sent out the Dostinex I had. Thanks for the replies and sorry I don't have more to share. Be sure and ask your doctors if they have samples because the first time I went mine didn't have any, but I kept asking everytime I went. Thanks!
LeAnn Ross <leann.ross_AT_ergon_DOT_com>
Vicksburg, MS USA - Tue Jul 28 13:20:48 1998

***ATTENTION PITUITARY SHOPPERS***!!!*** PLEASE READ *** Want to find an organization that is just for people like you who have Pituitary disorders? Do you want to find a website that addresses your unique symptoms, problems and concerns? Check out www.pituitary_DOT_com the home of the Pituitary Tumor Network Association, PTNA. Over the last couple years they have been a GREAT HELP to me and many others that I've come to know. People with Acromegaly, Prolactinoma, Cushings, MEN, Hypo- and Hyper-pituitarism. It's a great source of information. It's a great source of support. It's a great source of advocacy to the medical community to make sure we get the health CARE we deserve. Check it out. www.pituitary_DOT_com Eric
Eric Kamm <gemelk_AT_aol_DOT_com>
Los Angeles, CA USA - Tue Jul 28 11:23:23 1998

I wanted to update those that were interested in the vivid dreams I initially experienced on Dostinex. The dreams and hallucinations subsided after being on the new medication for three weeks. It has been six weeks since I have experienced an episode! My prolactin is down to 59, prior to the Dostinex it was hanging at 203 while on 20mg of Parlodel. I would definitely say the Dostinex is much easier to handle, and there really are no side effects (once you get through those wild dreams!) I feel a lot better...much better than I have in a long, long time! I am still emailing out results from the survey I took of 100 people with pit tumors. It is focused around weight changes and Pituitary Tumors. Email me if you would like me to send you the recap.
Lori <ToMajestic_AT_aol_DOT_com>
MI USA - Mon Jul 27 20:30:44 1998

I am the mother of an 11 year old daughter who has hypopituitarism as a result of neurosurgery for a craniopharyngioma at age 3 months. I am interested in obtaining information about support groups for children/young teens with pituitary disorders. I was quite pleased to find this site - it is refreshing to hear from actual people after wading through lots of research articles.
Gail Adams <GAdams1952_AT_aol_DOT_com>
San diego, Ca USA - Sat Jul 18 1:40:43 1998

Had a 2cm pituitary microadenoma removed in 1990. I elected for the surgery to be able to have more children. (I have since had 2 beautiful daughters). Before the surgery I began to gain weight and have had a terrible time getting down to the weight I want to be. I had no periods after my surgery unless I was taking Parlodel. But quit taking it (back in 1993) because of the side-effects. About 4 months ago my periods started again (out of the blue). I am feeling wonderful. Only wish I could tackle the weight. Any secrets. Let me know.
Danna Webster <kwcon_AT_pdqnet_DOT_net>
Cedar City, UT USA - Wed Jul 15 21:32:13 1998

I am so glad to find this web site. I have been diagnosed with hyperprolactinemia about 9 years ago. I have since successfully had two children with the help of Parlodel. In reading these other notes on this web site, there is talk about a drug called Dostinex. I would like more information on this drug as to long term use, side effects, etc. I have been told that I will be on Parolodel indefinitely and they can not give me what the long term effects that will be caused from this drug. If anyone has information on this drug or information about the long term use of Parlodel, it would be greatly appreciated. I have also heard something about some people have tried Vitamin B (I think) in stead of medicine and this keeps their levels down enough without using drugs. Any information on this would be appreciated also. Thanks.
Daphne <dbhj_AT_penn_DOT_com>
Summerville, PA USA - Wed Jul 15 20:09:13 1998

Hi! Only just got on the net via my college. Had diagnosed Pit. Tumor 15 Yrs ago treated with Bromocriptine 13 Years. I couldn't accept the confusion and memory problems and was converted to Dostinex. Tumor much reduced Prolactin levels down from 1500 to 60's Testosterone up to 20! Am told this is good! Sex drive high enough for a 50 yr old - several times a week or more if I get lucky - interested to see comments on depression (I've got it) and short term memory problems (I've got it). Write to me C\o 10 Suffolk Road, Bournemouth, Dorset,England.
Michael Lipson
Bournemouth, dorset England - Mon Jul 13 10:30:38 1998

I just want to know if anyone with a pituitary prolactinoma has problems with sex(painful, lack of interest)etc. Please someone help me.
Daphne F. Monroe <dmonroe_AT_visi_DOT_net>
USA - Sun Jul 12 22:21:47 1998

2 1/2 yrs ago I had a Pituitary Tumour removed followed up by a CSF leak which was rectified by another operation within 10 days. I have had 6 monthly MRI's and now they have found 1.4cm growth on my Pituitary again. I am now awaiting to have surgery again and then must opt for Radiotheraphy. Would like to know if anyone has had the radiotheraphy, what side effects are there, do you need to take drugs now, can you have children??
Annika <cotroneo_AT_rint_DOT_com.au>
Melbourne, vic Australia - Sun Jul 12 0:45:34 1998

dx'd w/ prolactinoma - prolactin level _AT_ 165 - mri normal, thyroid normal - just began taking parlodel (bromocriptine) but having trouble getting up to speed on this - drowsiness is a problem, and dizziness. Anyone have suggestion on taking this? How long do the side effects last? How long do you have to keep taking this, anyway...I have read that 50% of these tumors do not show up on mri's - anyone else have this experience? Thanks for the info.
Ruth <shasteen_AT_moultrie_DOT_com>
USA - Sat Jul 11 23:49:28 1998

No comment at present, except that I am interested in finding websites that are sources of current research information on pituitary prolactinomas.
Robert Campany <campanyr_AT_indiana.edu>
Bloomington, IN USA - Sat Jul 11 20:37:54 1998

Which type of adverse effects could produce the drugs that inhibit the prolactine hyperproduction?
Andres Mu�oz <amugar_AT_siu.buap.mx>
Puebla, Pu USA - Fri Jul 10 16:09:28 1998

I had pituitary surgery in January of 1991. I have always wondered if some of my problems are from a result of getting part of my pituitary gland removed. This web page answers a lot of my questions. It is great to be able to read about other peoples problems and realize that I am not alone here. Keep up the good work. Who knows, maybe doctors can learn from all of us that have been through it. Sincerely, Lori Smith
Lori Smith <basketw_AT_humboldt1_DOT_com>
Ferndale, CA USA - Wed Jul 8 3:43:12 1998

Just like to keep up on any new things with pituitary glands n not functioning. Like and good vitimins to take for more energy
carol zastrow <zastrokc_AT_execpc_DOT_com>
USA - Wed Jul 8 0:42:46 1998

I am interested in switching from Parlodel to Dostinex. Parlodel is working fine for me, but I have gained weight and also have low libido. I'd like to hear anyone who has advise on either switching drugs or dealing with these side effects. I have a 6mm prolactinoma. Thanks!
Kim <Kim.Anderson_AT_sjm_DOT_com>
Eagan, MN USA - Tue Jul 7 11:06:58 1998

I didm't realise there were so many people with pituatry tumors in Aust. let alone the world. I've had a tumor for 7 years (that I know of), I'm 21. I take parlodel to keep my prolactin down but suffer severe headaches and dizziness, etc if I don't take it. I don't get a period, and can't have children without it. Don't even know if I can with it. I had an MRI in January and I'm still awaiting the results, pretty sad effort from Westmead Hospital isn't it? Funny, I still know next to nothing about the condition as a whole. All I know is it's there and I don't want to die. Is this possible. Someone email with info please.
Amanda Clarke <nealanda_AT_ozemail_DOT_com.au>
Blue Mountains, NSW Australia - Mon Jul 6 10:29:58 1998

I've been reading everyones letters. I realize I don't have such serious conditions like a lot of you. I guess my condition really effects me more on an emotional level than physical. I have a very small tumor in my pituitary. My doctor diagnosed as hyperprolactinemia. I did not have a period for more than 4 years. The parlodel did not work. I am currently taking Dositnex 2 times a week. I finally started to get my periods again. I have had five of them already. I also lost 31lbs. Fortunately, I feel tremoundous. The only problem I have now though is a very low libido. I was wondering if any of you have that problem. I am only 29. I don't remember the last time I felt sexual and wish I could get it back. I'm eating better and excercising but still no improvement. The doctor really has nothing to say to me about that. I don't want to go through life feeling this way. I know it could be worse, but I don't want to keep dodging my husband all the time either. We have only been married for 1 1/2 years. He is extremely supportive, but I know it is hard for him to understand. If anyone has any suggestions I would appreciate it. By the way I am taking St. Johns Wort right now. I feel great. If anyone has comments I would prefer it if you could just leave it in the guestbook instead of e-mailing me. That is if it is about the libido. I really don't want husband to read about that. Thanks Heather
Heather <N1122_AT_webtv.(Anthony Marsh)>
Point Pleasant, NNJ USA - Wed Jul 1 23:54:01 1998

I had cushings and had pitutary surgery and I am doing good.
elaine wilcox <ewilcox_AT_powerlink_DOT_net>
Fayette, Me USA - Wed Jul 1 19:40:04 1998

Diagnosed with a prolactinoma 10/18/94. Transphenoidal craniotomy worked great! My tumor was 2.5 CM X 3.5 CM and some of it is still with me. Prolactin is down to 250 (from 6,400!). Did 6 weeks of radiation as well. Those who are on the borderline between drugs only and surgery should talk to an experienced neurosurgeon. I had to have surgery but the lesson learned was that tumors treated for long time frames with Parlodel (bromocryptine) first tend to become scarred and beat up. This makes them to hard/tough to operate on safely. If you're going to have surgery, you may not want to wait too long.
Bryan Kean <BKean10_AT_aol_DOT_com>
Kirkland, WA USA - Wed Jul 1 16:29:36 1998

My brother is to start proton radiation next week. If anyone has undergone this type of treatment for macroadenoma (pituitary tumor), I would like to hear what we can expect. Specifically, what are the side effects of proton radiation? He will be going to the Harvard site since the MGH site is apparently not yet up and running. Any comments would be appreciated.
Sara <paul.quigley_AT_wilcom_DOT_com>
ma USA - Tue Jun 30 23:27:54 1998

I have eight sealed samples of dostinex .5mg tablets that my doctor gave me last week. Found out I am pregnant-can't take them. If anyone is interested, email me and I'll UPS them. Thanks.
LeAnn Ross <leann.ross_AT_ergon_DOT_com>
Vicksburg, MS USA - Tue Jun 30 11:18:08 1998

My Mother-n-Law was told she has Neuro-endocrine. I'm looking for any information on this. I Want to be able to understand this kind of cancer. Also, she lives with me, and I want to be able to take care of her, the best I can. Any information you can give would be VERY appreciated. Thank you Teri Campillo
Teri Campillo <gaba1331_AT_aol_DOT_com>
Pico Rivera, CA USA - Wed Jun 24 21:46:43 1998

Craniotamy in June, 1994. Pituitary macradenoma. Attached to the blood supply behind my left eye causing the tumour to grow rapidly. Surgery scheduled within two weeks. Now 4 years later it is still there. Partially engulfs my carvernous and juxtasellar portion of the carotid artery (?). Superior margin of the tumour is starting to elevate the optic chiasm. Have had 4 MRI's and several CT's. Go to see the Nerosergeon on Friday the 26th. Have been taking Bromocryptine for about 4 months now with no side effects. Guess no shrinking of the tumour either. Has anyone else thought that their tumour was gone only to find out a few years later that is never really was?
Alison <MODMOLD_AT_HOTMAIL_DOT_com>
Windsor, On Canada - Wed Jun 24 17:59:53 1998

I was diagonosed with a prolactinoma by two doctors. According to the MRI test, the tumor is about 5 mm in diameter. However, I went to visit a third doctor, and he's having doubts whether this tumor is really a prolactinoma. Like Heidi, my prolactin level is supposed to be much higher than 32 (current status) if I really did have prolactinoma. He did a blood test last week testing the level of other horomones too, and I'll find out the result soon. If this isn't prolactinoma, what could it be? I hope it's not a malignant tumor... It seems this tumor is not very dense, perhaps with some water in it. Anyone have any idea what this could be? Thanks for your advice!
Mai Tsuji <mai_AT_fa2.so-net.or.jp>
Tokyo, Japan - Wed Jun 24 12:24:03 1998

I have just been dx with a macroadenoma of the pituitary gland measuring 12 mm x 10 mm x 1.8 cm. Is this big? My endocrinologist is concerned because my prolactin level was 79 and it is usually much higher with a prolactinoma. Has anyone ever had a cortisyn (sp?) stimulation test to rule this out? I hope it is a prolactinoma so I can just take meds and not have to have surgery. Is the surgery for this type of mass horrible? I am very worried.
Heide <hsciacca_AT_tmcpop.tmc.tulane.edu>
New Orleans, LA USA - Tue Jun 23 8:22:26 1998

I'M PREGNANT !! I was diagnosed with a micro prolactinoma (.6 cm)this year and have been taking dostinex for the past six weeks. My prolactin dropped from around 2000 to 90 within two weeks and within three weeks I was feeling absolutely normal !! (no headaches, blurred vision was back to normal, periods back and libido was up). I have just discovered that I am pregnant and have been advised to stop my medication. Has anyone got any info that they can share with me on pregnancy and prolactinoma ?
Kirstyn <K.Buhagiar_AT_cst.usyd.edu.au>
Sydney, NSW Australia - Sun Jun 21 18:53:44 1998

I was diagnosed in 1993 with a neuroendocrine carcinoma in the sinus (primary cancer). I had very extensive surgery in all three sinus, the maxillary, sphenoid,and ethmoid. Around and behind the eye also. The optical nerve was ok but some facial nerves were damages after the radation. It has been almost 5 years and I have been on constant doses of antibiotics because of improper drainage in the sinus and leakage from the eye. I get off the antibiotics and in two weeks so infected I can hardly breath. I also have some fluid leaking into the cheek from somewhere which builds a pocket in the cheek and stays red and swollen and sore. It then swells the gums on the same side. My problem is that my ENT says it is a dental problem and my dentist says its and ENT problem and meanwhile I am hurting and no one can seem to do anything for me except put me on antibiotics. They say that I might not heal if they cut into the tissue after it having radiation. So no one wants to help. The pocket in the cheek goes down when I lay down at night because it drains down the back of the throat. This would be fine if I could lay down all the time but we all know that is impossible. I am 44 years old with a 10 year old son I would like to enjoy. If anyone has had drainage problems similar to mine and can offer advice I would love to hear from you. I have been told by Drs. that my pain in my ear is really not there because they can see no ear infection. I believe I have a false wall of scar tissue that blocks off the back of the sinus from the doctors because the infection goes down my throat. Please send advice if you can.
Debbie Nicholas <dnat_AT_tyler_DOT_net>
Tyler, TX USA - Sat Jun 20 2:13:38 1998

would like to correspond with others about neuroendocrine carcinoma
Victor <eugene_AT_2xtreme_DOT_net>
sacramento, ca USA - Thu Jun 18 4:01:23 1998

My x-husband had surgery to remove a pituitary tumor on May 6th and is not recovering. He is still weak and does have enough energy to have visitation with our son. He is vomiting many times a day and is very depressed. I need to know how long this can last and if anyone else has experienced this type of a situation. He seems to be very confused and forgetful. When will the irrational behavior cease?? If anyone can help please let me know.
Mary Hansen <Dsbg1097_AT_aol_DOT_com>
Sunrise, Fl USA - Wed Jun 17 22:09:38 1998

You can tell I dont use the computer very much,can't you! I THINK I HAVE GOT IT RIGHT THIS TIME.
rachel <atkinben_AT_aol_DOT_com.uk>
uk - Mon Jun 15 16:04:46 1998

Rachel, YOur address is not working. There is a test to confirm CSF leak. It is a Cisternal gram.
sh
USA - Mon Jun 15 13:54:00 1998

Hi! I was Rx'd with a pit tumor in 8/94, since then have had 2 surgeries and radiation treatment-in 94, 95 & 96. Everything is going well. I am looking for an old friend, I lost his email by accident. Also, he didn't recieve my new email address. His name is Tom, and the only thing I can remember about his email is: tombot1, that's all!! It's driving me insane! The last time we wrote, he was about to go to MGH for proton beam(??) radiation. Can anyone please help me? He was the only person I met that had such an aggressive tumor as my own, and it was nice corresponding to him. Thank you, in advance, for your help. Everyone take care!! Lisa
Lisa Smith <tlcsmith_AT_landmarknet_DOT_net>
NH USA - Mon Jun 15 12:23:57 1998

I had two operations a year ago for a pituitary adenoma since then I seem to have an almost constant headache and runny nose.The headaches can be really awful , extending down one side of my face , or they can be quite mild sometimes feeling abit like pincers gripping or sometimes just like areas of intense pressure.My consultant cannot find a cause, I wonder if it is possible to have a slight csf leak for so long.if so how would they confirm it the amount lost from my nose is too smaa to collect although pretty constant.
rachel <atkinben_AT_aol.co.uk>
uk - Mon Jun 15 8:13:20 1998

Hi Kelly and others , It is hard to answer your questions without info..what type of tumor do you have? If you include your email address we can write back privately!! sh
sh
USA - Sun Jun 14 21:58:02 1998

I'm having a hard time getting info re: my tumor. It's benign and causing problems
Kelly
Canada - Sun Jun 14 2:25:09 1998

CSF symptoms can be >> salty tasting runny nose, taste in back of mouth, severe headache,flu like symptoms, greyish color to skin, lethargic>> these symtoms can vary in severity PLEASE CALL YOUR DR IS ONE IS SUSPECTED your address isn't working Rachel, do you think you have one? What are your symptoms?
sh
USA - Sat Jun 13 22:18:33 1998

If anyone has had a csf leak please could they let me know the symptoms
RACHEL <ATKINBEN&AOL.CO.UK>
USA - Sat Jun 13 13:36:17 1998

I had an MRI 3 days ago, which found a fairly large pituitary adenoma. I not too familiar with the medical terminology yet. It is compressing my optic nerve and caused some vision loss. It has also caused headaches for about 8 to 12 months. The doctor said that my pituitary took a "big hit." It is also around the coroted artery and restricting some blood flow. The neurosurgeon I saw doesn't deal with this kind of tumor. He's not sure if it can be done transphenoidally. He also said that I would probably need radiation after surgery. I don't seem to have any noticable hormonal problems, yet. I am interested in knowing if anyone has been through a similar experience. I am also very anxious to know what the experience of going through this surgery is like and how long the recovery period is. At first I thought that it might be a piece of cake, but I am beginning to get the idea that my hormonal problems will begin after the surgery. Any information would be appreciated.
Dan Murphy <dmurphy533_AT_aol_DOT_com>
Saratoga, NY USA - Sat Jun 13 11:19:07 1998

Hi again, I don't know if this will comfort any of you to hear this. I don't have a lot of knowledge about hyperprolactinemia. I work in a salon were I meet lots of women daily. I don't know their whole story about this condition, but I do know a few of my clients had high levels of prolactin which required them to take parlodel. I don't know how extreme their case was though. Two of the women I knew had twins, and others did have to take it in order to get pregnant. I will try to get more information from them, to find out exactly what the deal was. I have asked my doctor and he did assure me that I probably won't have a problem getting pregnant, but he does advice to wait for the tumor to shrink. He said it could hurt my vision. Talk soon again. Heather
Heather <N1122_AT_webtv_DOT_net (Anthony Marsh)>
Pt. Pleasant, NJ USA - Sat Jun 13 0:14:28 1998

MY BOYFRIEND WAS JUST DX WITH A NEUROENDOCRINE TUMOR.WOULD APPRECIATE ALL THE INFO. ANYONE HAS. THANK YOU
TINA JENNINGS <TJENNI2989_AT_AOL_DOT_com>
BRISTOL, TN USA - Fri Jun 12 22:39:57 1998

36 YEAR OLD MALE WHITH A MACROADEMONA 2 CM. AND WAITING FOR MY DOCTORS. PROLACTIN LEVELS 600
WILLIE ROSARIO <CAADI_AT_COQUI_DOT_net>
CAGUAS, PR USA - Fri Jun 12 15:23:12 1998

Hello to everyone from Tokyo again! We're in the rainy season here right now, gloomy and wet every day, but at least some useful advice from several people who wrote me back cheered up my gloomy mood! Thank you so much. Everyone in Japan is really excited watching the Soccer World Cup Tournanment as Japan is qualified for the first time in history. Anyway, I have other questions to ask everyone today. I've read about a new drug called Dostinex, some people who wrote me back also adviced me to take this instead of Parlodel for my microprolactinoma. I hear that this new drug is showing better results and less side effects. I'd like to hear more about it. Also what is a proton beam therapy and a gamma knife? I asked one of my doctors about it, and he said it's going to take hours to explain, and it's not commonly done in Japan due to more negative results than positive ones. Although I'm more and more convinced that I'm not going to get a surgery for the time being, I'm interested to know any options for the future. Thanks!
Mai Tsuji <mai_AT_fa2.so-net.or.jp>
Tokyo, Japan - Fri Jun 12 13:36:26 1998

Heather, I tried to respond to your post, but you email address doesn't appear to be listed correctly. Let us know how to reach you with info!
Lori Majestic <ToMajestic_AT_aol_DOT_com>
MI USA - Fri Jun 12 12:55:13 1998

Hi! It's 4:30am, and I am wide awake, I just had a bad dream...has anyone experienced wild vivid dreams while taking Dostinex? It seems as though they occur the nights I take my medication. Other than the dreams, (which I am beginning to think they are related to the Dostinex)...I have been doing great on it, and have had no side effects. If anyone taking Dostinex could compare notes with me, that would be great. Good Night (I hope!) Lori Majestic
Lori Majestic <ToMajestic_AT_aol_DOT_com>
MI USA - Fri Jun 12 4:25:33 1998

I'm a 31 yr. old Japanese female, married, without kids. I recently found out that I have prolactinoma: a microadenoma in my pituitary gland about 5 mm in diameter. One doctor told me I should get it operated while it's still small, because the smaller the tumor, the bigger chance of success in surgery, and better chance of getting back to ordinary horomone levels after the surgery. Another doctor told me surgery is not advisable at this stage; that I should take medication and do the MRI and blood test periodically to see how the medication works on the tumor. I've also been having milk secretion, and my mense is irregular. Since two doctors told me two opposing advices, I'm really confused. Should I get a surgery ASAP or should I try the medication for the time being? I presently take 3 tablets of Parlodel but fortunately haven't had any major side effects except constipation and stuffed nose in the morning and late at night. Based on your own experiences and knowledge, I'd like to hear your opinion about whether I should go for surgery or not. Surgery scares the hell out of me though, although it's not going to be that open-cranium type. I want to avoid it if I can. But also, I wish to become pregnant in the near future. Could Parlodel affect the pregnancy, such as abnormalities of the fetus? Again, based on your own experiences and knowledge, I'd like to know about having prolactinoma and getting pregnant at the same time. What are the con's and pro's of getting the surgery? Parlodel? What are the chances of the tumor growing back again even after it's been removed? Your advices will really save me from worrying like hell. There are no people around me with the same disease, nor is there an information website like this one in Japan. Thanks in advance for your help! Mai
Mai Tsuji <mai_AT_fa2.so-net.or.jp>
Tokyo, Japan - Thu Jun 11 13:34:30 1998

Hi everyone" I am new to having WEB TV. I was fooling around with all different titles to my problem, and cannot believe how much information there is on my situation. It is so comforting to know how many of you are out there. I have been diagnosed with a pituitary tumor about 4 years ago and life has been nothing but a big blur to me. I feel lost, alone, and numb. I am surprised to find out how many of you experience weight gain. My doctor makes me feel as all I have to do is exercise and eat right, I do agree in most cases, but this is different, its like it stuck on me no matter what I do. This is the best thing I could have discovered. Right now I am in therapy and I realize it is time for me to start enjoying life. I was reading the studies and they said that a big part of this problem was from pschological problems in your past and growing up with an alcoholic parent. This is extremely comforting to me. I feel there is hope. Does anyone also have the same situation? I am glad to have read all your letters. It is heartwarming. Talk to you soon.
Heather <N1122>
Point Pleasant, NJ USA - Wed Jun 10 9:01:18 1998

1996 diagnosed with MEN Type 1. No family history and yea!! not GI problems. I am interested in talking to anyone else with this rare disease.
Sandy <gobled_AT_wwics_DOT_com>
Touchet, WA USA - Wed Jun 10 0:57:36 1998

I have a prolactinoma (first diagnosed in 1991) and my prolactin level is currently 135. I was on bromocriptine for a month but did not get my blood checked until two weeks after going off of the bromocriptine. How possible is it that the bromocriptine worked even though my level increased from 128 to 135 ??? My doctor has now put me on Cabergoline for a month - I have scheduled an MRI in case my prolactin does not decrease - I definitely have a microprolactinoma - how scared should I be of possible transphenoidal surgery ??? My husband and I are very anxious to start a family this year - it is so frustrating because I feel fine (I still have regular periods, no galactorrhea, etc.) HELP !!!!!!
Elizabeth Anderson <lyon_AT_mailbox.mail.umn.edu>
Minneapolis, MN USA - Tue Jun 9 17:17:55 1998

After having my pituitary tumor removed, my surgeon suggested I might have some memory loss. I expected I might forget my locker combination at the gym, not why I fell in love with my husband. Although I have gotten some of "it" back, our marriage has never been the same quality it once was. I was just wondering if anyone else had a similar experience.....
Helena McKinney <hellion_AT_bellatlantic_DOT_net>
Cranberry Twp, PA USA - Sun Jun 7 23:09:59 1998

Mom might have cushings. Is in diagnostic process. Been gooing down hill for four years. Has most of the symptoms on the list. Has anyone else has trouble with low oxygen levels? She is on oxygen at night ( 2 liters), but no help in elevating it. any suggestions?
Cathy conty <conty_AT_thegrid_DOT_net>
Ca USA - Sun Jun 7 19:36:18 1998

Sorry, that address didn't show up. It is http://www.s-2000_DOT_com/bam/
Diane
Boston, ma USA - Sat Jun 6 5:15:28 1998

Many of your symptoms sound like Basilar Artery Migraines. The address I provided is full of info about this disease.
Diane <parishrd_AT_netway_DOT_com>
Boston, MA USA - Sat Jun 6 5:12:42 1998

I've read several of the entries from people that've been diagnosed with Pituitary tumors. What were your symptoms? I've had chills, nausea, dizziness, loss of balance, R sided headaches, Front of scalp hair loss, and shakiness. I'm waiting for results from my MRI scan to rule out Pituitary tumor & Sarcoidosis. Any answers greatly appreciated! Pat B
Pat Bogue <CRLP23C_AT_prodigy_DOT_com>
Millbrook, NY USA - Thu Jun 4 16:51:38 1998

pituitary prolactanoma dostinex cortate thoroxine testosterone
Peter Bartold <restora_AT_alphalink_DOT_com.au>
melbourne , vic australia - Sun May 31 7:58:40 1998

In 1954 I was stationed at Enewetak, in the Bikini Islands and was later diagnosed with acromeglia. I am interested in finding anyone else that was there at this time and came down with this same disease.
Ralph Bennett <bbenn110_AT_aol_DOT_com>
Caldwell, ID USA - Sat May 30 18:03:05 1998

I gave my wrong E-Mail. Is any one out there on a protocool study with a drug B-2036-PEG. The purpose is to lower somatociden levels. I had a micro. Adenoma for acromegally and my surgery was 6 years ago at Emory. I am fine but my somatociden levell is still high normal. thanks
Steve Bechtel <SBech10345_AT_aol_DOT_com>
USA - Fri May 29 20:32:04 1998

Hi Steve, I tried to respond but your address wasn't working. I have info on the need med. take care Trish
trisha <acrowhat_AT_aol_DOT_com>
OH USA - Fri May 29 19:35:34 1998

I had my tumor for acromegaly removed 6 years ago. I have been fine except my somatasiden level is still slightly elevated. I am being concidered for a protocol study. Is any one out their on a study with B-2036-PEG. How is it working
Steve Bechtel <Sbech10234_AT_aol_DOT_com>
USA - Fri May 29 12:50:22 1998

Great to have a bulletin board for pituitary tumours
Brenda Rosser <shelter_AT_webnet_DOT_com.au>
Wynyard, Tasmania Australia - Thu May 28 7:45:49 1998

I recently added to the guest book asking if anyone had had conflicting mri's I just realized that I had typed in the wrong e-mail address, and was hoping that why no one has responed to me. Today I found out I do have a cyst on my sinus and they neuro thinks that may be causing the migraines I have been having. Would appreciate any info anyone could give me
Beverly <txlaney_AT_aol_DOT_com>
USA - Wed May 27 21:34:43 1998

Thank you so much to all of yous who sent me an E-MAIL. I was suffering from a prolactinoma and had surgery almost a year ago. The reeason I have not been in touch is because I do not have access to the internet anymore.I want to tell all of yous that I am much better now and the surgery seemed to be a sucess. If you are afraid to contimplait the idea of surgery I want to tell you that if you have a good doctor that you trust surgery may be a good option for you. I can honestly say that i am very happpy that I had the surgery and now I am getting on with my life.If anyone has any quiestions they would like to ask or just need someone to talk too please do not hesitate to write me at * crystal harrison Box 417 Winnipegosis Mb. Canada R0l 2go . Good Luck to everyone.
CRYSTAL HARRISON
MANITOBA CANADA - Wed May 27 18:05:14 1998

Hi I have just been diagnosed with Cushing's syndrome. I have had symptoms for over ten years and part way through lost function of my thyroid. Since diagnosis I have commenced a heavy regime of omega 3 and omega 6 oils and no sugar or carbohydrate except oat milk and a bit of orange to take vitamin C with. I am feeling well (without medication) and walk 8 kilometres per day. I don't have osteoporosis or stretch marks. I believe my Cushing's has been intermittent (although less so for the last 5 years). My cortisol levels (urine) were 8 times higher than the normal limit. I want to explore gamma ray as a treatment option since the microadenoma is not that big. Does anybody have any knowledge of this facility in Australia? Thanks to all for sharing your experience Brenda
Brenda Rosser <shelter_AT_webnet_DOT_com.au>
Wynyard, Tasmania Australia - Tue May 26 18:58:19 1998

I would like to writte to C.B. Wilson. I`m a general practitioner from Poland. Please let me know how is his e-mail adresse. Thanks.
joan dydo <joandydo_AT_friko5.onet.pl>
Krakow, Poland - Tue May 26 14:28:56 1998

HI Julie and others, Here are a few places to turn for info on Growth Hormone replacement. The Majic Foundation provides support to families of children with growth disorders of all types. They have a newletter and a website. www.majicfoundation.org the tele # is 708-383-0808. The foundation is based out of IL., but I believe they have numerous local groups. Aother group is The Growth Hormone Division...they are distributors of GH but they also offer numerous other services such as financial assistance/ advising and home delivery. Also they offer 24 hr on call nurses and pharmacy staff to provide support and info as needed. Their # is1-888-6GH-TEAM. I have also heard of Manage Health Consultants..I am not sure of what services they offer. # 1-800-526-8613. I hope one of these org will be able to offer what you are looking for. Take care all Trish
Trisha <acrowhat_AT_aol_DOT_com>
Cleve, OH USA - Sun May 24 10:18:24 1998

I have a 2 year old daughter that has grown very little in the past year. She is in the process of being tested for Growth Hormone Deficiency. The initial blood test came back saying her levels were low but the test where they stimulated her hormones came back normal. It is all so confusing to me. Does anyone have any information on the testing process, diagnosis, and treatment for Growth Hormone Deficiency? Does anyone have a child that has been diagnosed with this disorder?
Julie <Jules1231_AT_aol_DOT_com>
CA USA - Sat May 23 19:57:00 1998

I was dx'd in Aug of 95 with a macroadenoma on an incidential find of an MRI, went thru all the blood work and vision tests and was told was non-functioning. I have since had 2 follow up MRI's that show no tumor, I was wondering if anyone else out there has had similar results from MRI's, I get migraines now that last for days and weeks that before would only last for a day. I am just intrested in anything anyone might could share.
Beverly <txllaney_AT_aol_DOT_com>
Kaufman, tx USA - Thu May 21 6:27:15 1998

Another update to let you know I met with my Endocrinologist yesterday. A couple of weeks ago they took a blood sample and tested both the prolactin level and the thyroid level. One year ago my prolactin was 98 and as of 5/19/98 I'm at 16!!! I feel like I won the lottery or something! My thyroid levels were normal too! How wonderful it is to feel like a "normal" person?! My weight also continues to drop as I continue taking my herbal supplement, I've lost 23 pounds and 17 inches! 27 more pounds to go! Unfortunately I still have to continue on Dostinex but my Endo is going to reduce my dose to just 1 twice per week. Another blood test in 3 months. By the way, my Endo told me that the ingrediants in the herbal supplement I'm taking to help me lose the tumor weight is fine. I felt like hugging him with all of the good news. He has no emotions though. Oh well, until next time... http://www.changesnow_DOT_com
Kristiina <sales_AT_changesnow_DOT_com>
Seattle, WA USA - Wed May 20 20:35:52 1998

If you would like a copy of the survey I took on Pituitary Tumors and weight changes, please email me. More than one hundred people participated,and the information they shared is very interesting and valuable. It was circulated to more than 300 people in the medical community, as well as to all of the participants. Thanks to everyone that contributed...what a great group of people I have met! Lori
Lori Majestic <ToMajestic_AT_aol_DOT_com>
Livonia, MI USA - Tue May 19 23:52:05 1998

I have just been diagnosed with a pituary tumor and have been told that I could forgo an operation and take parlodel. This will srink the tumor. But I may have to stay on the medicine for the rest of my life, If there is anyone out there that has allready gone through this I would really like some feed back. THANKS
Dave Wright <scout219_AT_aol_DOT_com>
butler, pa USA - Tue May 19 16:59:52 1998

In Feb.97 I had my entire Pitutary removed. I had gone to 19 Drs. over a 4 yr. period with high blood pressure missed periods., I continued to gain weight till I have gained 100 lbs. The Drs. told me to get on a good diet and exercise program. My Cushings cycled so it had to be tested at just the right time. Here I am 1yr and 3 months after the surgery no weight loss at all. I have severe headaches that never go away. I still have insomnia and get maybe 2 hrs sleep a night. I can understand the effects this has on you mentally, physically and the strain it puts on your family. I can only hope someone will find an answer to help us all. It makes me feel better knowing I'm not alone. I feel isolated alot because I cannot commit to doing projects at my church or my kids school because I may have 1 good day and 6 bad ones. I was in the hospital for 8 days the end of Feb. and unconcious for 3 of those and they didn't know if I would pull through just because of a reaction to certain medication. Please always ask your pharmacist before taking alot of drugs I didn't and my 9yr old and7yr old nearly lost a mom. Good luck everyone hopefully someday someone will understand this diesease . Its evident Social Security doesn't I filed for disability a yr ago and am still waiting on a hearing. I can't drive ,I always have bad headaches and joint pains. I also have week spells and really unbearable hot flashes. But they say they see no reason why I'm not working Cushings is very misunderstood. Good luck Everyone.
Judy Cherry <Judy_Cherry_AT_ hotmail _DOT_com>
Missouri City, Tx USA - Sun May 17 22:24:36 1998

I last posted a message back on April 21, and from that have received warm and thoughtful notes, helpful information, good counsel and encouragement. Thank you all...it is deeply appreciated. I am, four weeks later, now armed and blessed with the 'resource guide' (PTNA) and cursed with a decision re: radiation therapy - to do or not to do. In my instance (2 cm non functioning adenoma, endonasal transsphenoidal surgery, March 6), I perceive the issue of radiation therapy to be "controversial"...that there are two 'schools of thought' - one urging radiation, despite the risks - the other suggesting a cautious 'watch and wait' (MRI's twice the first year, once a year thereafter, and if there is residual tumor, and if it grows, then consider surgery again or surgery and radiation then). So while I've become a lot smarter since my April posting, yet at the same time, I am now even more confused than before. It is difficult to figure this out given that several docs urge "radiation now", while others urge "watch and wait". I cannot fathom why radiation therapy should be accepted "now", given the risks of radiation-induced tumors, dementias, risks to the visual apparatus, - and most significantly, almost-certain subsequent hypopituitarism - unless of course, there were compelling reasons to do so (e. g. invasion into sites outside of the sellar region, etc.). I am now attempting to ascertain the risks on the other side of the street - that is, what real risks are there if I elect to wait a year, monitor the situation, have followup MRI's. Are there really any grave risks? If so, are they "riskier" than those risks associated with radiation therapy? So...while I remain confused, am enlightened, yet undecided, and without answers...I think at least that I've got the questions framed. And thanks to all of you good souls who have helped.
David <shakerlit_AT_aol_DOT_com>
Ashfield, MA USA - Sun May 17 7:59:01 1998

After reading some of the contents in this site, I'm feeling very prompted to seek medical attention. I'm 24, recent irregular periods, breast milk, consistant daily nausea, and headaches. I'm positive that I'm not pregnant, nor have I ever been. Can you recommend doctors in my area? If not, any suggestions as to other options? I'm clueless. Thanks!
elizabeth <bmonahan_AT_kpmg_DOT_com>
Huntington Bch, ca USA - Mon May 11 4:18:19 1998

I have a rare disease called Sheehans Syndrome and would like to correspond with someone who may have the same disease. I was dignosed in 1993 and I am doing well. I is nice to know that I am not alone.
Joan <cbocker_AT_icubed_DOT_com>
PA USA - Fri May 8 12:49:13 1998

the first thing that bothered me, when i got on line to look up cushing's, was that there was more information for dogs than humans. i am 33 years old and have had a macro pituitary tumor since it was found in 1991. i had just had my second child which was a story in itself, to be short, i explained to a doctor the problems i was having with my weight since 1989, the problems with irregular cycles (i missed 1 whole year,) and the pregnancy from heck, still having milk after (two times) taking the pills after having the baby. the doctor looked at me and said, "i think i know what it is." he told me and sent me for a catscan. there it was. also my growth hormone was activated which explained the growth in my hand and shoe size. i went back and forth between military endocrine doctors and m.d.'s, moving and seeing others, and they told me it was macro so don't worry about it. the milk finally stopped and the growth hormone deactivated. now i have no cycle since sept and i'm loosing the hair at the front of my scalp and i've reached 173lbs from someone who usually weighted between ninety and 100 lbs. i find myself sleeping about 12 hours a day. i was having severe migraines every week and headaches just about everyday. i've have had people who worked with me in november commenting that my face has gotten so round. i've gained 30lbs since then. while i worked i worked really hard and the problem was that when i got home i slept most of the time. i also kept getting sick. i've gone to see a neurologist for the headaches, we now have them under control but i'm on medicine everyday and i have medicine for any migraines that may still accure. i've gone to the gyn doctor and they have done ultra sounds and found that i've got cycsts on my cervex and overies, but nothing that should stop me from getting my cycles. she sent me down to wramc in dc to see a gyn specialist down there. he said he wasn't going to touch me until he saw the results of a new mri of the tumor. i'm upset because i know two ladies personnally who have had cushings and i don't want to be a third. i'm angry because i'm having problems with my marriage because of the weight gain i have had in all these years. my husband goes nuts when i miss my cycles it's stressfull because i have to have a pregnancy test done. he's fixed, but you know how well that always works. he's upset with the tiredness, the weight gain and feels that if i exercised i'd loose the weight, echos from doctors, thought he admits he's puzzeled with the fact that i don't eat all that much. when i was working i was lucky to eat 2 meals a day and i didn't snack, but the weight did not come off. i'm more angry with the fact that if this is caused by the pituitary tumor maybe something could have been done years ago. why do we have to gain so much weight and lose our cycles and hair etc., before someone acts. we aren't stupid and know when something isn't right with our bodies. i was going throught the internet locations and came upon one about the pituitary tumor and the psychological effects. well it didn't surprise me that there were psychological problems with people with pituitary tumors, because some doctors go around telling these people that if they ate less or exercised more or that it is all in their heads, maybe it wouldn't bother them. i had!!! alway been thin, i was exceptionally active and am pretty active still, but i'm tired of people noticing how much weight i'm gaining. i wanted to have more than two children. i wanted to stay active and enjoy my husband's activities and my children's games. i like to rollerskate, ice skate, play hockey and ride bikes, camp, play a good game of racket ball with my husband. it's a little hard when all my joints ache and my muscles hurt from just working and walking upstairs. i'm not sure how much more weight my legs can handle. to end this, i know i sound angry but more information needs to get out to the doctors and more doctors need to take us more serious. i talk to the doctor tomarrow to get the latest results of my new mri, then i'll take it one day at a time. i'm tired of answers like, i'm not sure of why you aren't getting your cycle or why you've gained 30 lbs in 3 months or why you are alway tired. from now on i want answers and i won't stop asking until i get them. no more well don't worry about it from doctors. we should have worried about it! too many doctors telling me not to worry about it.
bonnie lawrence <lawrencewendall_AT_juno_DOT_com>
severn, md USA - Fri May 8 2:45:59 1998

A little update for those of you that I have contacted regarding the herbal supplement I am taking to help me with the weight gain, headaches, etc. caused by the prolactin secreting tumor I have. I have finally lost 20 pounds of the tumor weight that I gained. I feel wonderful and couldn't ask for anything more right now! Just another 20 pounds and I'm back to pre-tumor weight. Any of you wanting to join me in this success of losing the weight and feeling great again, please email me or visit the website we made regarding the product ThermoLift that has helped me like no other thing! The website address if you're interested is www.changesnow_DOT_com I believe in this so much that I am giving away free samples to anyone interested. Thanks to so many of you for your continued encouragement. I hope I can be an encouragement to you too! Feeling Fantastic!
Kristiina R. <sales_AT_changesnow_DOT_com>
Renton, WA USA - Fri May 8 1:25:23 1998

HI, IN 1982 I WAS DIAGNOSED WITH PROLACTINOMA, AND WAS PRESCRIBED PARLODEL. BY 1997 I WAS TAKING 7.5 MG A DAY AND PROLACTIN LEVEL WAS SLOWLY RISING. MY DR CHANGED ME TO DOSTINEX 1 TABLET 2 TIMES A WEEK. IT WAS WONDERFUL. THE SIDE EFFECTS FROM PARLODEL ARE GONE. AND PROLACTIN LEVEL IS NORMAL. BUT NOW AT AGE 45, I'M HAVING A HYSTERECTOMY DUE TO FIBROIDS , AND I AM KEEPING MY OVARIES BECAUSE MY ENDOCRONOLIGIST SAYS I CAN'T TAKE ESTROGEN BECAUSE IT WILL MAKE MY PROLACTINOMA GROW. AND THEY DON'T HAVE ENOUGH CASE HISTORIES TO GO BY TO GIVE ME ADVISE OR KNOW IF ESTROGEN WILL OR WILL NOT MAKE IT GROW, AND WHAT TO DO AFTER MENOPAUSE. HAS ANY ONE OUT THERE TAKEN ESTROGEN WITH PROLACTINOMA OR HAD A HYSTERECTOMY, OR GONE THROUGH MENOPAUSE ?? PLEASE HELP!! I WOULD LIKE TO KNOW IF THERE IS HOPE AFTER MENAPAUSE, THE THOUGHT OF NOT TAKING ESTROGEN SCARES ME. OVER THE YEARS I HAVE BEEN TO MAYO CLINIC, UNIVERSITY OF CHICAGO AND CURRENTLY AT STANFORD MEDICAL CENTER IN CALIF. I'M JUST HOPING FOR SOME HELP FROM FIRST HANDERS LIKE YOU ALL. ANY EMAIL ON THIS SUBJECT FROM ANYONE WITH PROLACTINOMA IS WELCOME.
PAMBA SCHAEFER <PAMANDLAR_AT_AOL_DOT_com>
SAN MATEO, CA USA - Wed May 6 12:53:02 1998

hi my name is dan i had transsphenoidal surgery in feb, i have double vision as a result of the surgery now my options for the remaining tumor are radiation or octreotide does anyone have any information or experience with the same situation, my diagnosis is acromegaly ...thanks
dan <djones4168_AT_relex_DOT_com>
auburn, ny USA - Tue May 5 23:13:29 1998

To anyone searching for general knowledge about prolactinomas: I have recently finished a rather extensive research paper on the subject and treatment options. If you have any questions about side effects or are considering surgery, e-mail me, and I'll try my best to help you out. And I can explain most of the big words your doctor is trying to use. Like another person in the guest book, I have become the "informed consumer" and would like to help others understand what's happening to them!
Jamie McLean <fizgig79_AT_hotmail_DOT_com>
Gaithersburg, MD USA - Sun May 3 20:44:00 1998

MRI showed pit tumor slightly larger than a golfball first week in Jan 98. All the classic symtoms which nobody could put together in the prior 3-4 year period. It took an actual abscessed tooth in Nov 97 to begin the search for what was really the problem. Thanks to Dr. Hoi Sang U (Ben) and his boss Dr. Larry Marshall at UC San Diego and their team. I am now missing the tumor and as Ben says, no longer have a nose that had more twists and turns in it than Lombard Street in San Francisco where Ben did his neuro residency under Dr.Charlie Wilson 20 years ago.
Robert Crisp <bcrisp_AT_mail.telis.org>
Truckee, CA USA - Sun May 3 18:44:44 1998

Thanks to all of the kind people who have shared their information with me the past few months. This website is truly a blessing. I have recently wanted to ask if there is anyone out there with a prolactin secreting adenoma that has postponed treatment? I was diagnosed 15 years ago and I continue to monitor my prolactin levels and optic nerves but have yet to get on medication or have surgery. I had a neuro surgeon tell me back 15 years ago that sometimes these tumors just go away. Anyone had one go away on its own? I am just curious. I'm NOT advocating doing nothing like I have. It has taken it toll on my mental peace and now I am dealing with depression and weight gain and who knows what else. I am trying to decide which treatment I want to pursue. To all who are struggling with the many types of pituitary diseases- I wish you health and peace. Dont forget prayer is powerful! I truly appreciate the support found here! Jalyne
Jalyne <jfidler_AT_slc.shorelin.wednet.edu>
Wa USA - Fri May 1 22:17:09 1998

Optometrist in private practice and expert witness
Michael Bywater, O.D. <mbywater_AT_orconet_DOT_com>
Costa Mesa, CA USA - Wed Apr 29 22:21:48 1998

Sorry I gave the wrong e-mail address: ldb_AT_besskunz_DOT_com is my boss' e-mail - please do not use - he will not be happy with me. Mine is ldg_AT_besskunz_DOT_com. Thanks.
Lori G. <ldg_AT_besskunz_DOT_com>
Phoenix, AZ USA - Wed Apr 29 20:52:46 1998

Hi. I am a 31 year old female with previous elevated prolactin level (72), weight gain, headaches, lactation, etc. (normal MRI). Went to Mayo Clinic last May and they decided to discontinue all medication, including bc pills. Prolactin went down to 5. They decided that it was probably caused by paxil (for depression), lactation when away and started to loose the weight. In February of this year I noticed some breast swelling and sure enough lactation has returned. Tested prolactin (9.2) "normal" tested three weeks later (17.2) "normal". I am still lactating and the doctors don't seem to be concerned. Changed my bc pills to lower estrogine level. Would like to hear if anyone else has run into this. I know my levels are very low compared to everyone I have read about but I can't stand the lactation and headaches and I everytime I go to doctors they treat me like I am a nut. I have asked to recheck prolactin in another four weeks to see what it is doing and they couldn't understand my reasons. Good luck to everyone I have read about.
Lori G <ldb_AT_besskunz_DOT_com>
Phoenix, AZ USA - Wed Apr 29 20:49:05 1998

This is my first visit here, although I am a frequent visitor to the PTNA page. I would like to know if anyone is interested in forming a Massachusetts/New England chapter? I know of about 6 or 7 people but we need more. I am having pit surgery on May 8 (I hope no changes). Non functioning but growing, so it may take me a while to respond. Please email me directly if you are interested.
Diane <parishrd_AT_netway_DOT_com>
Boston area, MA USA - Wed Apr 29 6:48:48 1998

Is anyone out there taking pergolide? If so, does it effect your sleep? It has been remarkable in reducing my prolactin, but the insomnia is terrible.
Ann <svec_AT_ulster_DOT_net>
port ewen, ny USA - Tue Apr 28 21:36:03 1998

Hi! Thanks to everyone that participated in the survey. I should have the results back to you by April 30. More than 100 people responded...I am anxious to share the infomation with all of you!
Lori <ToMajestic_AT_aol_DOT_com>
Livonia, MI USA - Tue Apr 28 19:20:53 1998

Has anybody that is taking Dostinex for high prolactin become pregnant? Can't tolerate the prolactin.
bsumv
USA - Mon Apr 27 22:22:35 1998

I had a pituitary adenoma in removed in 1979. Have been of and on Parlodel intermittently. Causes severe side affects for me: Severe headache, nausea, headache only on one side of my head , almost comes in waves of pain. Really weird. Neck and jaw hurts also from taking the parlodel. Now on Dostinex 2x weekly. Symtoms less severe, but still have some. I can function better with the Dostinex.
bsumv
USA - Mon Apr 27 22:18:30 1998

I apologize if I have upset any of you regarding the email that I sent out. I truly am I tumor sufferer and when I found out that something actually worked for me, I wanted to find a way to let my fellow sufferers know that I've found hope! In no way am I out to steal your pocketbooks, on the other hand, I had you all on my mind (since you've been an encouragement to me the last year with my diagnosis) that I wanted to share a glimmer of hope with you. Once again, I apologize for those I have offended and for those that have taken me quite seriously, I thank. I pray that you will also be able to begin to see the light at the end of the tunnel in regards to your daily living. Just to be able to have energy and a smile at the end of each day is a miracle for me. Notice that when you read my letter, I never mentioned that the products took away my tumor, I just mentioned that I can now live! I weighed in again this morning (I do on Mondays) and I've now lost 17.5 of those horrible tumor pounds. Once again, thank you for your responses and my hope is that I can continue to be of service and encouragement to any and all of you. Have a wonderful week! Sincerely, Kristiina Rauch
Kristiina <sales_AT_changesnow_DOT_com>
Seattle, WA USA - Mon Apr 27 9:52:20 1998

I have a prolactinoma that I took Dostinex for X 6 months. I am 8 weeks pregnant, I stopped Dostinex when I found out. I'm just wondering if anyone has been successful at breastfeeding after taking Dostinex. Please let me know. Thanks.
shani <showard_AT_athens_DOT_net>
Athens, GA USA - Sun Apr 26 15:31:37 1998

Hi! I'd like to hear from anyone who has been diagnosed with adult growth hormone deficiency... What were your symptoms? What testing was done? What are possible causes of this? Any other treatment(s)besides GH injections? Who are some of the leading researchers in this area? What were your lab results? Do any of your siblings or family members have this also? Thanks for any information!
Victoria <NoMedDx_AT_aol_DOT_com>
USA - Sun Apr 26 2:42:42 1998

Hi everyone. it looks like only half of my entry from yesterday made it into the book. What I'm wondering is if anyone with a prolactinoma had surgery to have it removed. I have a 6mm prolactinoma on the left side of my pituitary. When speaking to my endocrinologist(who I've only seen twice), he said that prolactinomas aren't serious enough to warrent surgery. But then I see that some of you have had surgery to have a prolactinoma removed. Could someone please email me and tell me why yours was removed. I'm concerned that my endocrinologist isn't informing me of al of my options. That or he just doesn't know that much about them. From someone who's been there, what kinds of questions should I be asking? This is all very new to me still.
Jennifer Randolph <tigger0855_AT_aol_DOT_com>
Mi USA - Sun Apr 26 0:42:10 1998

One more thing. I just started taking bromocriptine yesterday. I see that some people have had trouble with their weight as a result of this medication. I also see that someone is doing a survey about it. Could someone email me the results of that survey
Jennifer Randolph <tigger0855_AT_aol_DOT_com>
Mi USA - Sat Apr 25 1:12:51 1998

Hi all. First, thank you to everyone who wrote back to me. The support has been wonderful. I have now seen my endocrinologist twice and he told me that I would not need surgery to remove a 6mm prolactinoma. He made it sound as though prolactinomas are not serious, but then I see that others who had prolactinomas had them removed. Could someone please email me and tell me why their's was removed. I want to make sure my doctor is not misleading me and is offering me the best possible treatment. Also, how do I know if my doctor is knowledgeable? What sorts of questions should I be asking. This is all very new to me so I need a little guidance from those that have been down this road before. Thanks
Jennifer Randolph <tigger0855_AT_aol_DOT_com>
Mi USA - Sat Apr 25 1:09:10 1998

If there is anymore information or links, please contact me.
Christie <gt0365e_AT_prism.gatech.edu>
atlanta, ga USA - Tue Apr 21 15:34:28 1998

If you are reading these postings, that's a great first step...I took the second step yesterday, and wrote one. Already a thoughtful and well-informed response which really proved helpful. Yup, I'm the person who figured out that you needed to be "an informed consumer". I have learned a great deal from my md's in just the last day. I have/had a non functioning 3 cm adenoma...removed 3-6...no visual problems before or after...removed w/ endoscopic endonasal transsphenoidal techniques. Now - the next fork in the road: To have post surgical radiation or not. I have learned to work on building a 'great team', and to learn about the risks of radiation - also the risks of regrowth of the tumor. The answer will evolve. Anyone been down this twisty turny path before?
David <shakerlit_AT_aol_DOT_com>
Ashfield, MA USA - Tue Apr 21 10:23:17 1998

Has anyone that is on Dostinex, experienced mood changes, some days I am happy, some I want to be left alone. Please if you are experiencing anything like this, please let me know, so I know that it is the medicine....
Tara Sippel <sippelt_AT_mops.wl_DOT_com>
USA - Tue Apr 21 9:47:54 1998

I have primary adrenal insufficiency and possible clinical diagnosis of adrenomyeloneuropathy.
jeanne <jalarid_AT_state.nm.us>
USA - Mon Apr 20 10:35:23 1998

Hi. Am recovering - well, I think - from a surgical removal of a pituitary macroadenoma in early March. Now...with surgery over, I am now attempting to become an "educated consumer"...wish I had asked questions before, and secured answers before, rather than after surgery. I am now being referred for radiation therapy and am sitting on the fence of uncertainty...the risks of radiation (see PTNA information) versus whatever risks exist if I should choose not to take the radiation. Ahhh...and I am still attempting to ascertain just what type of adenoma I had removed (in whole or in part)...non functioning?...prolactinoma? Time will tell. Anyone with a like experience?
David <shakerlit_AT_aol_DOT_com>
Ashfield, MA USA - Mon Apr 20 8:00:34 1998

I had a bilateral adrenalectomy at Johns Hopkins Hospital in 1980 for Cushings Disease. In 1988 at NIH in Bethesda, they discovered an ACTH ectopic tumor on my right lung and had a lobectomy. I am currently taking cortisone replacement therapy and would like to talk with anyone who has had similar problems.
Denise McIntyre <DM090353_AT_aol_DOT_com>
Hagerstown, MD USA - Sat Apr 18 14:43:36 1998

I had terrible migraines for a year. Then I found out I had a prolactinoma and got surgery. 3 months later, I've still had no migraines! So this could be good news for someone else with both migraines and a pituitary tumor.
Ana <akravitz_AT_wesleyan.edu>
CT USA - Sat Apr 18 11:23:19 1998

In 1993 I was diagnosed with a Neuroendocrine Carcinoma. It is now 1998 and I am still alive.
Debbie Nicholas <dnat_AT_tyler_DOT_net>
Tyler, TX USA - Sat Apr 18 3:58:18 1998

I have reoccurring cushing diseaase and I am considering 3 options. A second transphenoidal surgery, an adrenalectomy or gamma knife. I have just returned from the Mayo clinic and I will recieve treatment there. I need to make a decision soon, so any information would be very helpful! Thanks!
Sharen <SBELL1998>
LOUISVILLE, KY USA - Sat Apr 18 0:13:11 1998

I have reoccurring cushing disease and am considering 3 options. A second transphenoidal surgery, an adrenalectomy, or gamma knife. I have just returned from the Mayo clinic in Rochester and I need to make a decision soon. I would appreciate any information that anyone might have! Thanks!
Sharen <SBELL98_AT_AOL_DOT_com>
LOUISVILLE, KY USA - Sat Apr 18 0:04:32 1998

Susan Hipsky i tried to email you directly but couldn't get through. Check your email address if not you can reach me at gjn3_AT_msn_DOT_com
Amanda <gnj3_AT_msn_DOT_com>
New Orleans, LA USA - Fri Apr 17 17:04:09 1998

I am looking for 11 more people to participate in a survey regarding Pituitary Adenoma and weight change. I will have the results back to everyone that participates by April 27. Everyone has been great...My goal is to survey 100 people, and I am just a little shy...so if you can participate, please contact me so that the questionairre can be emailed to you. It will take approx. 5-10 minutes to complete. Thanks so much!!
Lori <ToMajestic_AT_aol_DOT_com>
Michigan USA - Thu Apr 16 19:43:34 1998

Hi, my name is Jackie, I was diagnosed with a P. tumor about two years ag and was on parlodel which made me absolutely sick. About 6 months ago my Dr. put me on .5mg of Dostinex and things have been good. The tumor is decreasing. I am only 24 years old and my husband and I have not been able to get pregnant. Does anyone know what we should do. Also, the tumor has caused a lot of excess facial hairs and I was wandering what suggestions anyone has for safely removing these facial hairs.
Jacqueline Cartwright <jc1_AT_ra.msstate.edu>
USA - Thu Apr 16 17:30:00 1998

I just discovered this site today, and thank goodness! Is there anyone out there who can give me any success stories for getting pregnant, even with a pituitary tumor? In short, this is my story: Was on birth control pills for 9 straight years, stopped taking them 2-1/2 years ago. When I stopped taking them, I lost about 20 pounds in 2 months and my periods stopped completely. My prolactin level has been high each of the four times it was tested over the course of two years (mild elevation, 23 - 43). I've been going to a fertility clinic, and had a bunch of other tests done -- but an MRI I had last week showed something "not typical", and I'm seeing a specialist (neuroendocrinologist) at MGH soon. Does anyone have recent information about successful treatments and successful post-treatment pregancy? Also, some people's comments on this site about emotional/mental experiences is uncanny! It has really made me start to wonder -- I hope that the Dr.s at MGH can offer some explanations. Thanks! My e-mail is "susan hipsky_AT_cabot-corp_DOT_com"
Susan Hipsky <susan hipsky_AT_cabot-corp_DOT_com>
Boston area, MA USA - Thu Apr 16 14:46:45 1998

Found out today that I have one tumor inside my pituitary gland and one behind it. I am scared to death. What is going to happen to me?
Jessica North <j_north_AT_juno_DOT_com>
USA - Wed Apr 15 20:09:15 1998

I am a twenty-seven year old male. I was diagnosed with Pituitary prolactinoma in feb. 98. My prolactin level was 57 and have started on Dostinex. The side effects are none except my dreams have become crazy. It makes LSD seem like nothing. Has anyone else experienced such a dramatic change in their dreams? I had no idea my subconcious was so demented. I need to write a book or a movie to blow everybody away.
landini,j
Mammoth Lakes, Ca USA - Wed Apr 15 19:09:42 1998

I was on surgery for removing pituitaryadenoma in may 1990. It didn't take many months for me to get well. I haven't had any problems since then, except for high BP. I would like to have some e-mails from people who have had the same decease (Cushings syndrome).
Dan Olsson <dan.olsson_AT_ebox.tninet.se>
Eslov, Scania Sweden - Sun Apr 12 10:00:54 1998

I found very interesting finding this side on the net while I was looking for more information on Prolactin mediated tumor promotion following treatment with antipsychotics. Personally, I really would like to know if there is any relationship between tumor propmotion and the treatment with dopamine D2 antagonist like Haloperidol, rispiridone, chlorpromazine etc, if anyone knows something please let me know.
Martin de Haan <m.dehaan_AT_wxsnl>
Nederhorst_den_Berg, The Netherlands - Thu Apr 9 15:56:49 1998

THANKS
GITA KUMAR <MANGIKA_AT_AOL_DOT_com>
ATLANTA, GA USA - Mon Apr 6 6:49:43 1998

Interested to know about any body who had surgery for remvoal of Pituitary Adenoma
SANAA S , AL RADI <gendab_AT_emirates_DOT_net.ae>
Abu Dhabi, UAE - Sun Apr 5 9:37:40 1998

Interested in talking with anyone with postive experience with new drug dostinex
M.K. Thimsen <mthimsen_AT_pioneerplanet.infi_DOT_net>
USA - Sat Apr 4 1:14:06 1998

********* I highly encourage all of you to visit another website that has strong ties to this one! It is the home of the Pituitary Tumor Network Association, PTNA, and is LOADED with info. and support! Their Patient Resource Guide is fantastic!!! You'll learn so much from the book. The SUPPORT you get will be even greater!!! The people/patients there are wonderful! PLEASE, check it out at: www.pituitary_DOT_com I can't begin to tell you how this site and PTNA helped me! When I say it's been a God send, I'm not exaggerating! Go, learn, enjoy and feel embraced as part of a larger community that "KNOWS" what YOU are going through. Eric
Eric Kamm <gemelk_AT_aol_DOT_com>
Los Angeles, CA USA - Fri Apr 3 10:36:26 1998

Sorry t osay but pituitary tumors are hereditary. It is rare but it can happen and it is documented. I believe it is worded that the gene that causes the pit tumor to form is hereditary but not the actual type. e.g. one family memeber may have acromagealy and another a prolactinoma, but there are cases that are considered familial e.g. more than one family member has acromagealy. It is rare but it can happpen..I wouldn't live my life in fear of it occurring jsut be aware of any signs..unsuall headaches, growth slow or too fast, dry skin, etc.... Many drs don't believe it is herediatary but I know for a fact that it is documented. I don't think the woman Chris who post on the PTNA board would like to hear that considering her brother and son both have acromeagly. sue good-luck this is noot maent to scare people because it is very rare...just be aware
sue
PA, USA - Fri Apr 3 7:01:47 1998

I'm a 20 yr old female who found out this past week that I have a microadenoma on my pituitary(6mm). I see an endocrinologist tomorrow. I have many questions and concerns that are unanswered..ie.can I have children, is it life threatening, is surgey necesarry. I do not know anyone who has this same problem. I would love to hear from someone going through this also. It would be great to have someone understand what I am going through. This whole situation is very stressful for me, and I am scared.
Jennifer <tigger0855_AT_aol_DOT_com>
Grand Ledge, USA - Fri Apr 3 1:05:59 1998

In 1994 I was diagnosed with a prolactinoma. I was on birth control pills at the time and started lactating. My dr. did the blood tests and ordered the MRI. I had a microadenoma. I was monitored with blood tests for a year. I chose surgery in 1995 because my husband and I wanted to start a family. Six months after my transphenoidal surgery I was pregnant. It's been almost 3 years and all is great. Thank you to this sight for enlightening me w/ more info. on my past medical condition. I still try to follow up on any new info. on what may have caused it. Now I no it is not genetic and my daughter has a good chance of not having the same condition in the future!
Shani <Namrekka_AT_aol_DOT_com>
USA - Fri Apr 3 0:27:26 1998

Diagnosed 2/97 with microprolactinoma by gynecologist. First appointment with endocrinologist is April 23. What should I expect? Any response would be appreciated.
LeAnn Ross <leann.ross_AT_ergon_DOT_com>
Vicksburg, MS USA - Thu Apr 2 17:06:53 1998

I am 9 months post-op for removal of a cystic prolactinoma. Most symptoms are much improved, particularly headaches, tremors, feelings of anxiety, etc. However, I still get very fatigued and experience periodic "spells" where many more of my old symptoms return. Anyone else experience this? If so, how long before it goes away (if ever, sigh)? When do you completely feel like "your old self" again?
Mary Kay <mary_AT_zjs_DOT_com>
Milwaukee, WI USA - Thu Apr 2 14:03:16 1998

na
MICHELLE HUEY <crpinto_AT_crpinto_DOT_com>
Omaha, NE USA - Thu Apr 2 12:40:33 1998

My niece 2yr 10mo has just been dignosed with a phrangioma(sic)leaning on her pituatory gland. Weve seen 2 Dr.s and need to speak to patients or parents. If any one has the time to devote please contact me. we need to speak about realities.
Meyer Assoulin <mqa9998_AT_stern.nyu.edu>
Brooklyn, ny USA - Sat Mar 28 21:23:26 1998

Please email me if you would like to answer a short survey on Pituitary Adenoma and weight change. Thanks!
Lori <ToMajestic_AT_aol_DOT_com>
Livonia, MI USA - Sat Mar 28 10:59:06 1998

adenoma
Sachin Vora <sachin_AT_3dmirage_DOT_com>
New York, NY USA - Sat Mar 28 2:01:14 1998

Kindly add my e-mail address to your mailing list if possible.
Peter J. Vichi <pjvichi_AT_ma.ultranet_DOT_com>
Shrewsbury, MA USA - Fri Mar 27 10:54:13 1998

I have a co-worker whose daughter was recently diagnosed with Cushing's Syndrome. She was also diagnosed with Multiple Endocrinological Neoplasia Syndrome. She is diabetic and also suffers from hypertension. Any one out there with simlar experiences? We need some support!! Thanks a bunch. Incidentally, this is coming from sunny Kingston, Jamaica.
Yvette De Leon <yvettedeleon_AT_cwjamaica_DOT_com>
Kingston, Jamaica - Fri Mar 27 8:28:41 1998

Hi I've just (yesterday) been diagnosed with a prolatinoma (1900 count on my prolatin). I'm very confused as to the impact this will have on my life. I would be really happy to hear from anyone who has had or still has this medical condition. Thanks !
Kirstyn <K.Buhagiar_AT_cst.usyd.edu.au>
Sydney, Australia - Wed Mar 25 21:54:41 1998

I had a complete endocrine blood work done since I suspect a prob with my endocrine system. Smith Kline lab reports shows my somatomedin C (IGF-1) as being 94 ng/ml. I am a 31 year old female. This concerned me because it is lower than the range should be for my age, yet my doctor insists that it is within normal range and I should not be concerned. I would like to hear from anyone who is GH deficient as to what their level was/is. I don't know if I am wrong in continuiing to pursue this.
Violet Marie Parks <parks_AT_adelplhia_DOT_net>
Homestead, FL USA - Mon Mar 23 19:41:13 1998

Vicki I could not get my message to go directly to you so here is your answer concerning Cushing Syndrom evaluation. For more information, contact: E. Brad Thompson, M.D., Department of Human Biological Chemistry and Genetics, University of Texas Medical Branch 0645, Galveston, TX 77555; Phone: (409)772-2271; Fax: (409)772-5159; E-mail: bthompso_AT_utmb.edu. Good Luck! LaCretia
L Bevel
Huntsville, AL USA - Mon Mar 23 8:55:40 1998

I had a long duration case of Cushing's, first diagnosed at the Ottawa Civic Hospital (Dr T.J. O'leary), and then treated by Dr. Sorana Marcovitz. The tumour was very small ,2mm, and removed by Dr. David Hardy at Montreal General hospital. I also had a cancerous kidney discovered and removed during this period. I have recovered ,lost nearly 100 lbs. resumed riding racing bicyles up to 100 km. and resumed working as a writer and editor. I am still fighting depression and have to constantly watch my weight. My blood sugar levels are around 4.2.
Bill Glaister <billg_AT_intranet.ca>
Ottawa, On Canada - Sun Mar 22 11:29:25 1998

Hello! Has anyone else has had any of the following abnormalities or had more than one family member with endocrine problems? If so, what was the final diagnosis and/or treatment? What additional testing helped to identify the cause of the abnormalities? Any known specialists in the area of familial endocrine disorders? Thanks for any information. ~ Victoria :) <----------> Family member No. 1 (36 yo female)......... * low IGF-1......* high DHEA......* high DHEA-S......* periodic high urine-free cortisol......* periodic high prolactin......* periodic high 17-OH......* periodic high serum CRH......* non-existent levels of Vitamin D......* non-existent levels of ferritin......* abnormal pituitary MRI w/ contrast (enlarged pituitary gland; possible pituitary tumor; thin hypothalamus; bent pituitary stalk)......* abnormal facial MRI w/ contrast (unidentified mass extending from cheek to temple muscles)......* abnormal octreotide scan ("hot spots" in parotid gland area)......* symptoms: hirsutism; sleep disorder; osteopenia; periodic visual blurriness; tachycardia; shortness of breath; sensitivities to sun, light, chemicals, food, medications, temperature (cold); cold hands/feet; chronic sinus/pulmonary infections...... <----------> Family Member No. 2 (34 yo male).........* low IGF-1......* low GH (per aginine/L-dopa stim test)......* low testosterone......* low normal prolactin......* periodic high 17-OH......* high rheumatoid factor (179)......* normal pituitary MR w/ contrast......* symptoms: periodic sleep disorder; tachycardia; shortness of breath; weight gain; periodic facial puffiness; periodic hands/feet puffiness; periodic episodes of pupillary changes, sweating, feelings of fear; joint and muscle pain; sensitivities to sun, light, sounds, foods, temperature (hot)...... <----------> Family Member No. 3 (29 yo male).........* low IGF-1......* low testosterone......* normal prolactin......* low ferritin...... * no iron stores (per bone marrow aspiration but normal serum iron)......* diabetes insipidus (unknown etiology)...... * hypothyroidism w/ rapid fluctuations of TSH......* abnormal MRI w/o contrast (small pituitary; thin hypothalamus; thin pituitary stalk)......* symptoms: periodic sleep disorder; shortness of breath; weight fluctuations; periodic mood swings; periodic hand tremors; periodic episodes of pupillary changes, sweating, feelings of fear; sensitivities to sun, light, temperatures (hot); medications; chronic ear infections......
Victoria L. <NoMedDx_AT_aol_DOT_com>
USA - Fri Mar 20 18:19:24 1998

Yesterday I received some information from National Organization for Rare Disorders (NORD). There was an article in it that might be of interest to anyone with Cushing Syndrome. "Physicians at the University of Texas Medical Center are interested in evaluating individuals with Cushing Syndrome who have normal cortisol levels. "If this is of interest to anyone e-mail me and I will send you the address, phone # and e-mail address.
L. Bevel
AL USA - Fri Mar 20 13:19:53 1998

I've recently been switched from 10mg/day of Parlodel to 10mg/wk of Dostinex. The side effects are so much less! However, I've gained 5lbs. already. Can anyone compare the wt. gain effects of the two? Maybe I just have a better appetite because I feel so much better. Thanks.
Michelle <rustic_AT_dnvr.uswest_DOT_net>
Evergreen, CO USA - Wed Mar 18 15:36:53 1998

Yesterday I was diagnosed with a tumor on my pituitary gland. I would appreciate any information you could give me on my treatment options. I know that I have a lot to learn. Thank you for your help
Janice Cramer <janicec_AT_novell.uidaho.edu>
Moscow, ID USA - Wed Mar 18 12:56:57 1998

I was diagnosed with a 0.3mm pituitary tumor 18 years ago, (which has not changed according to several MRI's) However, my prolactin level has varied from 30 to the present high of 126. Throughout the years my dosage of Parlodel changed from one 2.5mg tablet, to the present dosage of one 2.5mg tablet and one 5mg capsule daily. My first question is: Has anyone had any studies done on long term affects of Parlodel? Question # 2: Has anyone been on Parlodel this long and recently switched to Dostinex, and what have been the results compared to Parlodel? Thanks for any info on this subject, please feel free to email me!!
Sue <thetwo-pence_AT_ctlnet_DOT_com>
S. Whitley, IN USA - Tue Mar 17 22:14:02 1998

I was diagnosed with prolactinoma in 1994. I was sick all the time, had headaches and was depressed alot. I went from doctor to doctor but all said my prolactin was not high enough to be caused by a tumor. The highest my level ever raised was about 75. In 1996 I was having a routine MRI when the doctor discovered a tumor. Not only that but that it was hemorrhaging. My pituitary tumor was filled with blood and was continuing to fill with blood. I had surgery immediately. It has been a year since surgery and I don't think I'm better. The doctors say everything is normal but they don't understand. I'm not the same person. I'm still depressed and exhausted alot. Has anyone suffered similar events, or just want to talk about the condition. I would love to meet someone that has experienced a tumor. Great site. I'm very glad to know there are people out there who might understand me!!!
Donna <orionsmyst_AT_aol_DOT_com>
Jacksonville, AL USA - Tue Mar 17 4:11:24 1998

Thank you to the many people that have written to me, and for all the great information and support. I am still gathering information on a couple of things, and would really like to hear from more people on this topic...There are many of us that have weight problems, and are unsure if it is related to the Pituitary Adenoma or the Parlodel treatment. If you have any comments on weight concerns, please email me when you have a chance. I will be certain to repsond to your letter, as well as share what I have learned with those that have contacted me. Here are the two questions; Do you have a weigh problem, and if so, when did it start? Do you take Parlodel, if so, how much, and when did you start taking it? Thanks so much...what a great support you have all been.
Lori <ToMajestic_AT_ol_DOT_com>
MI USA - Fri Mar 13 10:24:14 1998

I notice a lot of people are scared to death of surgery. Some had poor results. I had mine out and it was very easy and non traumatic, with great result. I think what is needed is to be a strong advocate for yourself (or get someone else to do so for you) and ASK what the doctor's experience is. How many procedures? With the most experienced surgeons, the results are very good and at very low risk. The best surgeons have done THOUSANDS of transphenoidal removals of pit tumors. Dr. Charles Wilson at UCSF in San Francisco did mine, and he is widely reputed to be the best in the world. Others in the country have also done many and are skilled. Don't take a new guy. Look for a very experienced doctor and the results will reflect it. Good luck. Believe me, with a good doctor, the procedure was a nothing. I was back at work in three days. Brian R. Dinday
Brian Dinday <DINDAY_AT_Pacbell_DOT_net>
San Francisco , CA USA - Thu Mar 12 20:06:46 1998

I am very thankful for this web site and the kind and caring people who have responded to my past entries. I am wondering if anyone has found a way to endure the MRI experience. I am very claustophobic and the thought of having another one about sends me nuts!!! Has anyone had any experience with the new open sided MRI's?? Are they successful? I have a prolactinoma and the last mri I had back in 1987 was an awful experience. I am now trying to gear up to to start dealing with my tumor but know I will need to do the MRI. I am a large person and it makes it all the worse! Yikes! I dont like the tube!!! Thanks for any news or advice you might have for me.* * \_/ J
J Fidler <jfidler_AT_slc.shorelin.wednet.edu>
wa USA - Wed Mar 11 22:22:24 1998

Any evidence of prolactinomas associated with head trauma???
LeAnn Ross <leann.ross_AT_ergon_DOT_com>
Vicksburg, MS USA - Mon Mar 9 17:50:36 1998

Terry Lee Tucker..regarding following message..why did they wait so long to send you to endo? worth travel to somewhere educated on pit tumors! out of pocket expenses aren't to bad if no testing is doneMGH is excelllent.Katznelsen or KLibanski sue
sue
USA - Mon Mar 9 12:48:28 1998

Pituitary region macroadenoma found 7/96. First visit to Endocrinologist Feb. '98. Undiagnosed type of mass. Frequent (almost daily) severe headaches, including migraines. Daily fatigue, nausea and some vomitting (resulting in weight loss 1-2 lbs./wk.) Confused by conflicting and uninformed information from local endocrinologist & neurosurgeon. neurologist, endocrinologist,
Terry Lee Tucker <ttucker_AT_aquilagroup_DOT_com>
Albuquerque, NM USA - Mon Mar 9 12:25:32 1998

Acromeglia
Joleyne Blain <blueslicks_AT_net_DOT_com>
Huntington, WV USA - Sun Mar 8 21:58:09 1998

My son Ryan is 16 he was diagnosed with a swelling of the pituitary stalk in 1996. He has diabeties insipidus, cortison deficency,low testosteron, growth hormone deficency. he is currently on replacements for all except growth hormone. the docters say unless this enlargment gets bigger they won't do anything. Does anybody have any advice for us? Does anybody suffer with the same problems? We need help.
Heidi Evdosin <daboss_AT_totalnet_DOT_com>
Montreal,Quebec, Canada - Sat Mar 7 9:23:17 1998

My son, was diagnosed with a swelling of the pituitary stem He is 16.He has diabeties insipidus, cortison deficency,and low testosterone.He is curenttly on replacements for all. He has had mri every 3 months for the past year and a half. His doctors say nothing has changed.Only if the swelling enlarges will they think of doing something. Does anybody have any help for me?
Heidi Evdosin <daboss_AT_total_DOT_net>
Montreal, quebec, Canada USA - Fri Mar 6 11:37:12 1998

Hi- I was diagnosed with Cushings in 1997. I had the surgery in June and they took 1/3 of my pituitary. I am just on hydrocortizone now. Things seem to be doing ok. Thanks for letting me read your comments.
Kris
USA - Wed Mar 4 14:31:23 1998

I was diagnosed with a pit. tumor back in October 1997. I have tried parlodel at first, however, doesn't seem to work. I am now trying dostinex. I have been on that for 8 weeks now. Not too bad. I am tired though of having severe headaches during my menstrual cycle. Does anyone else experience this? I am going to be trying to start a family in about a year, however, I am scared of my chances to become pregnant. I am so glad I found this page and that there are other people who understand what I am going through. No one asked to have a tumor. Life sometimes throws you a curve ball. Thank God my husband been supportive.
Tara Sippel <sippelt_AT_mops.wl_DOT_com>
USA - Wed Mar 4 14:13:52 1998

Tumor removed in December of 1996. Now undergoing hormone replacement therapy. Will post email address & website later.
Ray F. Brooks
Chesapeake, VA USA - Mon Mar 2 12:17:27 1998

no comment
pamela sims <pamela_sims_AT_iwhs.org>
paris, tx USA - Sun Mar 1 16:15:45 1998

After reading the comments of others of you out there with pituitary problems I am overwhelmed by the number of similar problems people are dealing with. In June, 1997 my doctor discovered a microadenoma on my pituitary. My prolactin levels were approx. 126 and she sent me for an MRI. And surprise, surprise...guess what they found. Now I am using a friend's computer in an effort to get more information. Last night my doctor informed me that my prolactin level is up to 74 from 38 in October, 1997. She wants me to take more parlodel. So far I have been symptom free at the lower dosage. Anyway, I'm scared. Any suggestions re: info about this entire lovely experience?
Jane <xjenx 29_AT_aol_DOT_com>
Hinsdale, IL USA - Fri Feb 27 19:33:44 1998

I have been on parlodel off and on for 12 years for a pituitary adenoma, and have experienced weight gain, fatigue, and moodiness. Has anyone else out there experienced the same things? Has anyone tried the new medicine, and does it cause the same side effects? Has anyone found something that you can take to speed up the metabolism so that you do not gain so much weight while taking parlodel? I would love to hear from anyone regarding their weight and fatigue problems, and any solutions they may have.
Lynette <dg4bmw_AT_aol_DOT_com>
Gulf Breeze, FL USA - Fri Feb 27 18:15:24 1998

I have had a pituitary tumor (prolactinoma) for 20 years. I have suffered from recurring depression and fatigue during this time. I have suspected that the fatigue and depression are related to the tumor but each doctor I go to says there is no evidence to support that. I have worked very hard at getting the depression under control. I have gone to numerous psychiatrists, counselors and support groups and I have also taken several different antidepressants along with Parlodel. I am so tired of being tired all the time and depressed most of the time. Does anyone know of studies which support a link between hyperprolactinemia and fatigue and depression? Also, I do not tolerate Parlodel or Dostinex very well. Has anyone tried Norprolac with success?
Carol Neville <jnevill1_AT_san.rr_DOT_com>
San Diego, CA USA - Wed Feb 25 12:44:38 1998

I was diagnosed with Cushings Syndrome in June 1986 after going to my doctor for approximately 2 years with the symptons!! Finally I saw another doctor who sent me for a series of tests and Cushings was found. I had a Transphenoidal Hypophsectomy in August 1986 and was on Cortisone for approximately 18months following the operation. Since then I have had two more children (I already had two) and have kept very good health. Would like to hear from others who may have had the same operation.
Barbara Page <pagey_AT_one_DOT_net.au>
Australia - Tue Feb 24 19:15:03 1998

have been on parlodel for about seven years. anyone know of any connection to ulcers?
rudy elder <tturfman_AT_aol_DOT_com>
USA - Mon Feb 23 19:20:45 1998

I have an 8mm prolactinoma which is nonresponsive to Bromocriptine, Cabergonline (Drostinex), and Permax. I've never heard of Parlodel, but I hear you gain a lot of weight. I'll have to tell my endocrinologist about everybody having memory loss, because she's never heard of it, and thought I was being silly when I complained of it. I gotta check out the PTNA! It sounds great!
Jamie <mclndlux_AT_wam.umd.edu>
College Park, Md USA - Sun Feb 22 17:32:53 1998

Has anyone has any experience or heard anything about Dr. Nelson Oyesiku at Emory University in Atlanta, GA?
L. Bevel <lbevel_AT_redstone.army.mil>
huntsville, AL USA - Thu Feb 19 13:36:05 1998

If anyone knows how to get to the message board in the PTNA, please e mail me. Thanks.
L bevel <lbevel_AT_redstone.army.mil>
huntsville, al USA - Thu Feb 19 13:18:33 1998

I AM LOOKING TO NETWORK WITH OTHERS WHO HAVE EXPERIENCED AN ADRENALECTOMY. I HAD A BENIGN TUMOR REMOVED IN MAY OF '95. I HAVE YET TO MEET ANY OTHERS WHO HAVE EXPERIENCE THIS. I'M 41 NOW AND HAVE NOT TAKEN ANY MEDICATIONS AFTER THE SURGERY. I WAS TOLD THAT ONE ADRENAL WOULD TAKE OVER FOR THE OTHER. I HAVE BEEN EXPERIENCES MORE SEVERE AND MORE CONSTANT HEADACHES THAN EVER BEFORE AS WELL AS A SIGNIFICANT WEIGHT GAIN DURING THE PAST THREE YEARS SINCE THE SURGERY. I'D APPRECIATE HEARING FROM ANYONE WHO HAS HAD AN ADRENALECTOMY. THANKS, ROBIN
Robin Denker <Robin4111_AT_aol_DOT_com>
Agoura Hills, CA USA - Thu Feb 19 1:03:55 1998

I'M 29 AND HAVE BEEN ON PARLODEL FOR 9 YEARS. IN READING THIS GUEST BOOK I NOTICED A NAME OF A NEW DRUG (NEW TO ME) SOME HAD CHANGED TO AFTER BWING ON PARLODEL, AND ALSO A DRUG TAKEN ONCE A WEEK WAS MENTIONED. COULD ANYONE PLEASE INFORM ME ON HOW THESE WORK, SIDE EFFECTS, ETC. I HAVE 6 PITUTARY TUMORS AND SURGERY HAS BEEN RULED OUT, AT LEAST FOR NOW, MAINLY DUE TO MY WEIGHT WHICH WOULD POSSIBLY HAVE SOME ADVERSE SIDE EFFECTS. COULD SOMEONE, ANYONE SHARE SOME ENCOURAGING NEWS AND/OR INFO. I'D APPRECIATE HEARING FOR YOU. THANKS ALOT. SHERRY
SHERRY <RTHOMAS&MSINETS_DOT_com>
SOUTH HILL, VA USA - Wed Feb 18 18:26:02 1998

I had a Transphenoidal Removal of Pituatory Tumour removed in October 1996. It was on hormone pills/thyroid pills and cortisone tablets for nearly a year afterwards. I am now off everything and have lost all the weight I gained during this period. The only problem I have experienced is a clear liquid that flows from my breasts. My neurosurgeon says it is prolactin. What causes this. He says it happens sometimes. I know it is called Prolactin, but why is this happening. Is anyone experiencing the same problem. What are you using for it.
Janine Michel <michelj_AT_sabc.co.za>
Johannesburg , Gauteng South Africa - Tue Feb 17 10:19:25 1998

I have recently been experiencing Galactorreah and headaches. However, my prolactin levels are normal and my headaches may be attributed to having the wrong perscription in my eyeglasses. I wonder if anyone knows of other causes of galactorreah or if it is possible to have a pituitary tumor if prolactin levels are normal? I recently began taking Prozac instead of Paxil for depression, could this be the cause? Thanks for your help.
Kelly <kgali67_AT_aol_DOT_com>
Hilliard, OH USA - Mon Feb 16 22:00:35 1998

I have a pituatary tumor. and I have surgery 3 month ago. please send me about prolactinoms treatment.
kim chang duk
kyngki-do, korea - Fri Feb 13 20:13:57 1998

If you have had surgery for a pituitary tumor and are now suffering from headaches (not previously experienced) please e-mail me at DOCSAVAGE1_AT_PRODIGY_DOT_net. I need to know that I am not alone. Thanks.
stephanie romero <docsavage1_AT_prodigy_DOT_net>
wantagh, ny USA - Thu Feb 12 19:20:20 1998

Has anyone been a "non-responder" to bromocriptine and made the switch to Dostinex? How did it go (i.e. effectiveness, side effects)? I'd love to hear from someone who's been there. Thanks.
michelle <rustic_AT_uswest_DOT_net>
Evergreen, , CO USA - Wed Feb 11 13:34:33 1998

Has anyone experienced a healthy and successful pregnancy during the presence of a pituitary adenoma? Did your discharge stop? Any symptoms before or after childbirth due to the benign pituitary tumor? Were you able to breast feed?
BEMA <stevea_AT_dmsinfo_DOT_com>
Tampa, FL USA - Sun Feb 8 23:48:18 1998

Has anyone experienced a health and successful pregnancy during the presence of a pituitary adenoma? Did your discharge stop? Any symptoms before or after childbirth due to the benign pituitary tumor? Were you able to breast feed?
BEMA <stevea_AT_dmsinfo_DOT_com>
Tampa, FL USA - Sun Feb 8 23:47:52 1998

Pituitary adenoma
BEMA <stevea_AT_dmsinfo_DOT_com>
Tampa, FL USA - Sun Feb 8 23:15:24 1998

Great site! Would like to see more on long term tumors, and long term statistics of patients taking Parlodel 15 years or more. Thank you!
Sue Pence <thetwo-pence_AT_ctlnet_DOT_com>
South Whitley, In USA - Sun Feb 8 22:07:31 1998

I have been traeted for a Pituatary tumor for sixteen years and have been on bromocriptine for that time which has supressed tumor growth. It has recently been determined that I have acromegaly and I have been on sandostatin for a few months.I am considering surgery.
Edmund Rice <holland-vt_AT_postoffice.worldnet.att_DOT_net>
Foxboro, MA USA - Sun Feb 8 10:03:49 1998

Does anyone have any information on Norprolac that they can provide me with? It is still a test drug in Canada. I have been on it for about 2 months now and would like to know more about side effects, etc.
Brenda <charukkb_AT_telusplanet_DOT_net>
Edmonton, AB Canada - Fri Feb 6 22:23:48 1998

I have recently been diagnosed with a pituitary tumor which is secreting prolactin. My prolactin levels are around 70. I am starting Parlodel, but was told this is another drug available to reduce pituitary tumors. The drug is taken 1 time a week with no side effects. Has anyone heard of this drug? I am only taking 1.25 mgs. per day of Parlodel. I have not started feeling the negative side effects but am concerned as my doctor stated they are rough. At what dosage did you start feeling the nausea? Thanks for any help!
Diane <diane.fletcher_AT_austin.ppdi_DOT_com>
Austin, TX USA - Fri Feb 6 16:19:05 1998

I have been in contact with several people from this site..it seems that we all have one thing in common so far and that is weight gain...while on Parlodel. I would like to hear from more people that have had that experience. I have done quite a bit of research on Parlodel, but never saw documentation of weight gain. I had always attrributed my weight gain to decrease energy levels and lesser activity as a result. Does anyone else have problems with memory or concentration as a result of being on Parlodel?
Lori <ToMajestic_AT_aol_DOT_com>
Livonia, MI USA - Thu Feb 5 19:18:55 1998

I had basicly all my pituitary through surgery 2/97. The sampling had said it was a tumor on the right side but when they went in it was full of nodules and they had to remove it It was of course Cushing Disease. It took 5 years and me gaining 100 lbs to get someone to listen . 1 yr later headaches still severe,still 100 lbs over weight and have tto use ddavp ,Hydrocortisone, and levoxyl plus medication to sleep for pain and my body aches in my joints . I've even tried Accupunture. If anyone is still having any problems like this I'd really like to hear from you.Thank You
Judy cherry <judy _cherry>
Missouri City, Tx USA - Wed Feb 4 0:16:42 1998

Hi my name is Shirley, and I was diagnosed with a 3mm miroprolactinoma in Aug. 96'. My only symptom was galactorrea with a PRL level between 40-60. I continued to get my period although sporadically and of short, light duration and flow. I never went on Parlodel or any other medication for fear of side effects. My second MRI in July 97' indicated that the tumor had grown to approx. 6 mm. Because of the way it looked, several Drs. thought it was a Rathke's Cyst. So, I opted for the surgery done by Dr. Harley Smyth in Toronto. The surgery was easy, no pain, absolutely no problems. All my hormone levels are normal and PRL is down to 3. Mine is thus far ( and thank God) a positive story. The year I had the tumor in my head I never felt ill, and so far I still feel really great. I was very fortunate in that, when I was immediately diagnosed I found the PTNA and got well informed. I found the best Drs. in the country that specialize in pit. tumors and made very educated decisions. The PTNA defiantely saved my well being and I am incredibly grateful to Bob Knutzen and all that have shared their stories. Best of health to all! Love Shirley
Shirley Brockhill <shirley.brockhill_AT_alphanet_DOT_net>
Toronto, ON Canada - Tue Feb 3 10:14:55 1998

I have recently been diagnosed with a micro-prolactinoma. My prolactin level is ony 3, but I continue to lactate. Also, I have gained 50 lbs. in a very short amount of time. I am taking 2.5 mg of parlodel each day and the lowest dose of the oral contraceptive-orthtrycycline. Has anyone else had a similar experience? WWJD_AT_AOL_DOT_com
Joanna <WWJD_AT_AOL_DOT_com>
USA - Tue Feb 3 6:41:14 1998

My sister-in-law has a pituitary tumor. I would like to get some information on any medical treatments, surgery, radiation therapy, alternative therapies and any other approaches that would help to treat the problem asap. Thank you very much.
ok park <okpark_AT_comp.uark.edu>
fayetteville, ar USA - Mon Feb 2 16:42:38 1998

Glad to find this website (my first e-mail- I'll have to double check my address). I was searching for any info. possible on pituitary tumors. I have been on Parlodel for a year an a half. The medicine has brought my 8/9 mm tumor down to approx. a 4. It took almost a year to see any change in size at all- contrary to what my doctors expected. Hadn't had any headaches to speak of since I started medication- until the past 3 weeks. I'm wondering if the tumor could be getting larger again...I haven't had an MRI in about 6 months. How I will know if my medication needs to be increased or changed? Also, am interested in any info. about pregnancy while on Parlodel..or risks about coming off of it if we decide to start a family.
jenni <jenclair_AT_eos.edu>
USA - Sun Feb 1 12:27:28 1998

Thank you for an informative Web site.
LWilson
Seattle, WWWWA USA - Sat Jan 31 22:14:46 1998

I have a tumor the size of a large marble. It is around my left corotid artery and surgery to reduce is all that can be done. I have taken Parlidol for 1 year and just began Dostinex. I am have really bad anxiety, nervesness headache, dizziness, and am having problems taking the medication. Does anyone out there know or have any suggestions for better adjustment.
JON HILL <deedee_AT_telenet_DOT_net>
Yerington, NV USA - Sat Jan 31 19:54:33 1998

RE: prolactin levels...Is there anyone out there who has or has had a prolactin level of 1,000 or higher? My level is currently 1,024. Also, I have read that elevated prolactin levels are not always caused by the presence of a pituitary tumor. Any information would be greatly appreciated. Thanks very much.
JF Wilson <jfidler_AT_slc.shorelin.wednet.edu>
Seattke, WA USA - Fri Jan 30 20:26:10 1998

This is my third pituitary tumor in eight years. I am considering surgery, and would like any information anyone would like to share on the subject. I am currently on 10mg of parlodel (increased from 7mg, in October). I seem to be exhausted all the time. Has anyone else experienced exhaustion/depression? Thank You.
Lori <ToMajestic_AT_aol_DOT_com>
Livonia, MI USA - Fri Jan 30 19:02:38 1998

The articles at your site are very helpful. I am particularly interested in more information regarding headaches, drug therapy (bromocriptine) when combined with asthma drug therapy.
Elaine Burr <elaine.waring-burr_AT_sun_DOT_com>
San Jose, CA USA - Thu Jan 29 14:42:22 1998

I have acromegaly and am looking into the Gamma Knife surgery. Has anyone ever had it instead of the transsphenoidal surgery? L. Bevel
L. Bevel <lbevel_AT_redstone.army.mil>
Huntsville, AL USA - Thu Jan 29 8:31:47 1998

I am a 30yr old female trying to start a family that has recently had a nonsecreting pituitary macroadenoma removed. We found the tumor through elevated prolactine levels and also found low levels of estrodial and cortisol. I am now on hydrocortizone and growing impatient with the side effects and lack of infomation reguarding pregnancy dealing with my situation. Anyone out there with similar conditions? I would love some insight.
AMANDA JONES <gnj3_AT_msn_DOT_com>
New Orleans, LA USA - Wed Jan 28 12:54:29 1998

New Homepage about home replacement therapie http://unet.univie.ac.at/~a9705103/diedruese.html
Die Dr�se <druese_AT_gmx_DOT_net>
Vienna, austria - Tue Jan 27 10:16:38 1998

Has anyone diagnosed with a prolactin secreting macroadenoma had a "Levodopa Argineen" test? This is supposed to check the growth hormone levels but I haven't found any other information on it. Please e-mail me if you know anything about the test. Thank you.
Tom Riordan <ibframed_AT_bellatlantic_DOT_net>
Beaver Falls, PA USA - Mon Jan 26 20:43:37 1998

So glad to find this site. I cried when I did. Anyone have any experience with a tumor that secretes alpha subunit AND prolactin? I've been on Parlodel for a year, hate the side effects and it's not really working. Supposedly alpha tumors don't respond well to Parlodel. Surgery scares me. Would love to hear from someone who's dealt with this. By the way, the endocrine team at Colorado University has been great . They found things that other MD's have missed for the last couple of years. Best of luck to you all.
michelle <rustic_AT_dnvr.uswest_DOT_net>
evergreen,, CO USA - Mon Jan 26 0:07:24 1998

I was diagnosed with a prolactinoma in October 1997. Currently taking Bromocriptine and prolactin level dropped from 1796 to 17. Currently taking meds for low thyroid. Anyone else had to take thyroid meds while treating prolactinoma? Any other possible effects we should be aware of?
B. Cashley <cashley_AT_sympatico.ca>
Canada - Sun Jan 25 21:46:33 1998

HI I AM A 44 YR.OLD MALE W ACROMEGALY I HAD THE SURGERY ON 9-96 THEN "NOMOS" RADIATION ON 3-97 I HAVE BEEN ON SANDOSTATIN INJECTIONS SINCE 12-96 I WAS RECENTLY INCLUDED IN THE "SENSUS" MEDICATION STUDY I TAKE SYNTHROID AND TESTOSTERONE AND RECENTLY STARTED TEGRETOL IN AN EFFORT TO CURB THE SEVERE HEADACHES THAT COME EVERY 2 HRS. DAY AND NITE I HAVE TRIED MANY MIGRAINE MEDICATIONS AND AM HOPING SOMEONE HAS SOME ADVICE TO GET RID OF THE HEADACHES ...MORE LATER
ROBERT <MOFFCOM_AT_JUNO_DOT_com>
COSTA MESA, CA USA - Sun Jan 25 3:01:40 1998

Sorry, my email address below was incorrect!! I was so excited to have found this websight that my finger can't keep up with me!! I would love to hear from other brain tumor patients, especially those with craniopharyngioma!!
Susan Agresta <SJA4home_AT_aol_DOT_com>
Lincoln, RI USA - Sat Jan 24 19:59:33 1998

I am a 34 year old mother of two who had surgery to remove a craniopharyngioma in May of 1994. Thank you for this websight. In the years since my surgery I have never met anyone who has even know what it meant!! Thanks.
Susan Agresta <SJA4hom _AT_aol_DOT_com>
Lincoln, RI USA - Sat Jan 24 19:40:29 1998

would like to hear from anyone else with prolactimona
Michelle <michelle_AT_reggie.mv_DOT_com>
USA - Sat Jan 24 0:02:59 1998

looking for a e-mail address for Dr. Klibanski I would like to to send her a big huge than-you!
sue
USA - Fri Jan 23 13:43:28 1998

E-Mail addtress for Cindy Jean Subject craiopharynigiomas
Cindy Jean <CBstein_AT_aol_DOT_com.>
Pa. USA - Fri Jan 23 10:10:50 1998

In May of 1991 my daughter was operated on for a craniopharyngioma ...she was is 6th grade and now is attending her 1st year of college 3 hrs. away from home. It was a 15 hr. 2nd surgery and a long 7 years. She lost all her pititury functions, her left field of vision..and has some short term memory loss. I have studied and gathered as much information as I could over the past 7 years and would love to talk with anyone with this tumor. I wish there was a place like this for me 7 years ago.. There are lots of questions that need to be asked and this tumor is not on the top of the list. Hope I can help someone as I needed help and at the time there wasn't much. Good luck to you all. Cindy
Cindy Jean
USA - Fri Jan 23 9:55:14 1998

I have a pituitary tumor affecting prolactin levels. I recently began taking Dostinex and have noticed a lot of facial edema and hot flashes. My eyelids, for example, look like I've been crying, they are so puffy. Has anyone else noticed this side effect from Dostinex? Also, while browsing thru a chat room for "pituitary tumor" people like me, I've noticed several references to Synthroid. I thought I was nuts last year when I found out I have so many problems - high BP, high cholesterol, elevated blood sugar(okay now) thyroid problems and my pituitary tumor. Thanks for these chat rooms where we can find out what others are dealing with, too. bbauer_AT_pressenter_DOT_com
Brenda Bauerkemper <bbauer_AT_pressenter_DOT_com>
River Falls, WI USA - Thu Jan 22 13:04:45 1998

To MIKE of Tracy,CA.Please tell us what do YOU think made your prolactine go down without any medication? could it be your exersice? you did mention in your message last May that you run several miles/week...or is there any form of "alternative medicine" that you are following? Please share with us..thank you
mneera <pinkgardenia_AT_hotmail_DOT_com>
USA - Tue Jan 20 14:37:48 1998

Could someone share their experiences with a possible microadenoma or a Rathke's cleft cyst? My daugther's M.R.I. shiwed one of these and we are awaiting our next step. Thank You.
Diane Stephenson <dsteach2x2_AT_aol_DOT_com>
Union , NJ USA - Mon Jan 19 17:01:14 1998

Just an update since my last entry this past summer. I've been off parlodel now for 13 months. My last blood test, this week, showed a prolactin level of 15 !! I had been on parlodel since 1987....
Mike <mikep_AT_vornet_DOT_com>
Tracy, CA USA - Sun Jan 18 15:30:51 1998

Carol, I do not know if you can get Norprolac in the US and how much it costs, but.... I do not know how in the US prolactine level is measured, but in The Netherlands where I live a level of 0,5 is normal. 1,5 weeks ago my level was 21! In a week time it decreased to 0,8 because of Norprolac! I also see improvement in my eye sight and the tests confirm this. My doctor is keeping me on Norprolac next couple of weeks, so surgery is postponed. At the end of February I will go for an MRI again, so we can see how the tumor reacts. I hope this information can help you. Anita
Anita <a.p.a.vet_AT_getronics.nl>
Cruquius, The Netherlands - Sat Jan 17 12:38:03 1998

Wow! What a comfort to find this website. I was diagnosed with a prolactin secreting adenoma way back in 1981!!! I was actively seeking medical advice but received such conflicting advice and felt so frightened and confused I decided to do nothing.I continued to monitor my optic nerves as blindness was my greatest fear Now I am older and have been battling depression and anxiety and obesity for many years and I am ready to pursue this tumor thing again. I would appreciate any info from anyone who has been or is being treated for a prolactin secreting tumor. I am interested in symptoms caused by elevated prolactin levels. My level was recently 1024. I feel comfort knowing I am not alone in this problem. Thanks from the heart!! PS- any recommendations for doctors or clinics in Seattle would be appreciated!!!!
JF Wilson <jfidler_AT_slc.shorelin.wednet.edu>
Seattle, Wa USA - Sat Jan 17 1:00:25 1998

I have prolactinoma and was diagnosed in November 1997. I have weight, skin & vision problems. At the moment I am on Norprolac. Tomorrow I will know if this medication is resulting in a lower level of prolactine. Thanks for all the real patient information. I will keep this page in my favorites. Good luck to you all. Anita
Anita Vet <a.p.a.vet_AT_getronics.nl>
Cruquius, Netherlands - Wed Jan 14 16:18:42 1998

Pitituary problems are new to me. I've been diagnosed with a cyst on the pitituary. Apparently, there isn't a whole lot that can be done for me. I need all the advice and information I can get. I would be interested in acquiring information about Medical Services.
R. L. Mingie <rmingie2_AT_utk.edu>
TN USA - Wed Jan 14 11:48:50 1998

I was diagnoised with a pitutary tumor over 10 years ago. Since I have been able to have two children with the help of paradel. In all of the years that I have had this, I have never met anyone else who has had it. I'm anxious to make use of this great website!!!
Coleen Warner <Coleenw_AT_juno_DOT_com>
Lincoln, NE USA - Mon Jan 12 19:59:55 1998

When I first saw this guest book I was not sure what to write or ask. That is why I now have two entries. In addition to severe headaches, I suffer from large weight gains and then small losses followed by even larger weight gains. My doctor's are stumped as why I have numbness and weakness on my left side. I am always exausted and have really poor concentration and can get extremely irratable. This makes holding a job extremly diffiuclt. Because the tumor is pressing on my optic nerves I am slowly losing my vision. Due too the fact that I have no health insurance, I use a charity hospital. The charity hospital considers me a low priority high risk case and prefers to wait instead of operating. Any suggestions on how to deal with these symptoms would be greatly appreciated. Finally, a site where I do not feel alone. Thank you so much for taking the time to listen to me.
Carol Fannaly <dragonsfire3_AT_juno_DOT_com>
Baton Rouge, LA USA - Mon Jan 12 17:11:10 1998

I am a 25 year old single mom with a pituitary tumor. My tumor appears to be benign. It's the headaches that are unberable. Does anyone else have this problem?
Carol Fannaly <dragonsfire3_AT_juno_DOT_com>
Baton Rouge, LA USA - Mon Jan 12 16:53:40 1998

I would like to see current information on drug therapy and cabergaline.
Leah R. Doherty <doherty1_AT_acad.wit.edu>
Boston, ma USA - Mon Jan 12 11:22:54 1998

Thank you!!! For 4 years, I have thought that I was crazy. I to thought that I was the only one with high prolcatin levels. As for parlodel, please I can not tolerate the side effects. For the last two years, I have managed to lower and maintain my level at 19 naturally with a black cohash blend of herbs. It seems to work well for me. Without it my levels go back up and the depression and insanity comes back. I am glad that I found others with my same fears. Thanks again!!!
CATHY SUDBURY <SSUDBURY_AT_JAXN_DOT_com>
Jackson, TN USA - Sat Jan 10 23:35:46 1998

I am interested in locating others who have had an adrenalectomy. I had a benign ganglioneuroma (tumor) removed along with my right adrenal gland in May of 1995. I am interest in finding others who have experienced this along with their recovery findings and how they feel now. I cannot find any site for adrenal tumors or a board for similar benign adrenal tumors. I am a 41 year old female with two children. Presently, my symptoms have been similar to many of you who describe pituatry tumors; coldness (at times), fatigue, ear aches and tooth aches and sinus aches all on the upper right side of my head as well as headaches. I've always attributed my headaches to stress in the past; however, now after finding this tumor (which was an incidental) finding, I question everything. I presently live in the Los Angeles area; however at the time my surgery was performed by Dr. George Irvin at the University of Miami hospital in Miami FL. This surgeon only operates on adrenal and thyroid tumors. He's the best in the SOutheast. Please contact me at Robin4111_AT_aol_DOT_com Thanking you in advance.
Robin <Robin4111_AT_aol_DOT_com>
Agoura Hills, CA USA - Fri Jan 9 23:46:24 1998

hi
Maureen Adams <mradams_AT_ione_DOT_net>
Berea, KY USA - Fri Jan 9 15:23:31 1998

Fellow Acromegalics: I have had elevated IGF-1 levels for years. Recently dipped into the normal range in early December 97. Any idea when these severe, incapcitating joint and muscle aches will calm down?
Michael <met1_AT_gte_DOT_net>
Everett, WA USA - Fri Jan 9 14:31:02 1998

PLEASE PLEASE..can any one tell me if you experience migraine headache and you are at the same time diagnosed with prolactinoma I need to know ..I get terrible migraine headaches every 2 weeks that is at ovulation time and just before the onset of my period I need help if there is any?I currently take IMITREX whenever I get migraines but is it o.k with the prolactinoma???
MNEERA <PINKGARDENIA_AT_HOTMAIL_DOT_com>
USA - Fri Jan 9 8:19:52 1998

I was diagnosed with a benign prolactinoma at age 18. I have my prolactin level checked annually and it seems to be hovering in the 18-23 range. I'm wondering if any of you that had a prolactinoma removed at an early age have had any trouble conceiving. I have been married for five years and we have been trying to conceive for the last year. My OB/GYN tells me not to worry, however, I'm wondering if anyone has any suggestions. Also, I had my surgery in Rochester, MN; my team of doctors were based out of the Mayo Clinic. I hope to hear from some of you!
Jill Sangl <jsangl_AT_thomas.butler.edu>
Indianapolis, IN USA - Wed Jan 7 19:31:53 1998

My sister, aged 27 has a macroprolactinoma. (large prolactin secreting tumor). The tumor was 2 1/2 times the size of the actual gland and has shrunk by a third, but is no longer shrinking. Her prolactin level was 24000, now it is 9000 and no longer dropping. In the UK, 200 is normal. We don't know how it is calculate in the USA. She has been on Cabergoline for one year. The side effects are awful: Dizzy, nausea, stomach bloating, many foods agrivate the digestive system, terrible fatigue, awful mood swings, memory loss, constipation. The doctors want her to have surgery and then radiotherapy. She does not want surgery as is petrified. We've heard that surgery can damage the pituitary gland and radiotherapy WILL destroy it! What are the side effects of both? Desperate to find out before any decisions are made. Please please help us with some answers. Thanks. Julie. ps. having never sent an email before I don't know if I need to add co.uk on our address.
julie <dhudleston_AT_aol_DOT_com>
isle of wight, uk - Wed Jan 7 18:09:35 1998

I HAD A PROLACTINOMA AND ENDURED THE SURGERY. AFTERWARDS I'M CONVINCED I COULD HAVE AVOIDED THE SURGERY (NOT AN EASY SURGERY). BEFORE YOU GET "TALKED INTO" SURGERY BY A NEUROSURGEON E-MAIL ME OR SEE YOUR ENDOCRINOLOGIST. I DIDN'T EVEN KNOW WHAT AN ENDOCRINOLOGIST WAS UNTIL AFTER MY SURGERY. BE SMART - GET ALL THE INFORMATION YOU CAN.
DON DEZARN <DDEZARN_AT_AOL_DOT_com>
EUGENE, OR USA - Tue Jan 6 23:25:12 1998

Just found out I have a pituitary tumor 3-4 cm originally diagnosed as a ear infection. Had operation that left my face paralized.
Leslie O. Glessner <kg2fc_AT_juno_DOT_com>
Bridgeton, NJ USA - Tue Jan 6 19:04:55 1998

I was diagnosed with PANHYPOPITUITARISM in May and had TSA surgery. It was lymphocytic hypophysitis. I am on lifetime hormone replacement therapy of prednisone, synthroid, prempro and calcium daily. Has anyone out there experienced this? I feel much better but not "normal". I have very dry skin and bloated stomach-maybe caused by the medicine. I am 39 years old. Please E-mail me if you know about this disease.
Mary <ranch_AT_nntc_DOT_net>
USA - Mon Jan 5 21:50:42 1998

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