Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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ledgy 03/26/2012

Hi to all,

I discovered this blogsite by accident, I am a member of the acromegaly forum...

I am writing to alert all of you to the hazards of a cosecreting tumor; that is a tumor that secretes excess prolactin, but ALSO excess hgh or other hormones...

In 1994, i had symptoms similar to what you have all experienced: fatigue, depression, low libido, etc. They tested me and found high prolactin and declared that i had a prolactinoma.....they treated it for 6 years until someone figured out that i really have a cosecreting tumor...and acromegaly which is much more serious than simply excess prolactin.....

So i urge all of you to have an igf-1 test......if it is even a little high, do a glucose suppression test....you probably have acromegaly....

Good luck

Ledgy

deleted_user 04/11/2012

Hi Ledgy, I have had a prolactinoma since at least 1995. I never had headaches as a symptom, but 2 1/2 years ago I got one that never went away. My doctor tells me that I can not have acromegaly because when I had the transphenoidal surgery the tumor only stained for prolactin. Did you have surgery, and if so did it only stain for prolactin, not growth hormone at the time? Of course, this question also goes out to anyone who can shed some light on this situation! Thanks!

ledgy 04/15/2012

I believe your doctor is wrong.......when they take a sample to do a stain, they only take maybe one percent of the tumor tissue to stain it...so maybe the sample that they took only had cells which were secreting excess prolactin... (by the way, after my surgery, the sample only stained for prolactin, even though i had already been diagnosed as having acromegaly as well).

Take an igf-1 level test....if it is high, then you have acromegaly, period. BTW, do the repeat mris show any remnants of tumor material???

deleted_user 04/16/2012

Ledgy,

The surgery only removed half of the tumor, the other half is wrapped around my carotid artery and was very close to the optic nerve. Last week's MRI report showed that the tumor has grown a little, enough to be touching the optic nerve. My OGTT was on the borderline of normal and my IGF-1 has been steadily climbing for years and is well above normal. My Endo is the one who suggested Acromegaly years ago, but he seems reluctant to diagnose me with it. He sent me to MGH for a second opinion, they did blood tests in the late afternoon (tests that I could swear are fasting tests) and called within days to say no Acromegaly. This tumor was relatively symptom free until 2 1/2 years ago when I got a headache that NEVER went away.

ledgy 04/16/2012

Does MGH mean Mass General Hospital? They are very good.....i just dont know how they can say no acromegaly when your igf-1 scores are above normal and are going up? What was your last number? Also, what was the lowest number that your OGTT suppressed to?

What treatment are you receiving now????

deleted_user 04/16/2012

Exactly, Mass General. I don't remember my numbers, I will have to look them up when I get home. I have been on Cabergoline since it came out in 1997 (I think). I went from one 0.5mg tablet per week up to the two tabs daily that I take now. I know, it is an extremely high dose, and it has not shrunk the tumor at all. My Endo thinks it is keeping the tumor from growing so I have stayed on it. Unfortunately it HAS grown. He wants me to get radiation, but I am not comfortable with the collateral damage radiation can cause.

ledgy 04/16/2012

Cabergoline might be causing your headaches.....I know the cabergoline gave me headaches, dizziness, thirst, and a foggy brain. I was successfully treated for acromegaly and excess prolactin with a monthly LAR Sandostatin and just a little bit of cabergoline.....it doesnt take much cabergoline to reduce the prolactin (i was taking a 1/2 of a pill once a week) Also, the Sandostatin LAR might further shrink your tumor...

So maybe a mix of small cabergoline with LAR Sandostatin might be better for you....good luck!

deleted_user 04/16/2012

Thanks so much for your help! I will be seeing my Endo again soon, so I will suggest that. I always questioned the high dose, but what do I know, I didn't go to medical school!

deleted_user 04/22/2012

Hi Chefcheryl - 1mg cabergoline per day is rather high. You might want to get an echocardiogram to ensure your heart is in good condition.

deleted_user 04/26/2012

Hi Belinda101! You are right, and my doctor sends me to the cardiologist every year. Luckily there have been no changes over the years. I know that many Parkinson's patients on high doses of Cabergoline have been having mitral valve issues, but all is well so far with me.

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