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Brain/Pituitary Tumors Community
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Avatar universal

Out of Options?

I was diagnosed 2 years ago with a prolactinoma. My prolactin levels were about 150, Testosterone was zero (yes 0!), and MRI revealed tumor to be a macro tumor about just over 1 cm in size.  I have been on Cabergoline with no success (size of tumor was the same after a year and a half of treatment), my endo kept increasing the dose but could not achieve normal levels and if so the next month they ended up higher.

My thyroid was borderline under functioning and I've been on AmourThyoid (didn't respond well to the regular thyroid medication).  

Had tumor surgically removed in February of this year by a fantastic surgeon who does many surgeries and had a high success rate of removing the tumor, but a month post-surgery my prolactin levels were higher than the day after surgery.  I believe it was 125 the day after surgery and 130 at a month past.  They told me at surgery that they feel they got 100% of the tumor.  

Have been put back on Cabergoline, but don't feel like it's the best of options since it wasn't successful before and did not shrink the tumor.  Bromocriptine was also tried for a short time, but the side effects were unbearable.  

Surgeons don't seem to have a clue why surgery didn't "fix" anything.  The newest MRI that was done 3 months post surgery they said shows "marbling" of a tumor within the pituitary gland.

So now at a point where I've done everything that they said we could try, but anything further would involve too much risk and result in likely permanently damaging the pituitary.  

Having a horrible time finding an endocrinologist who has any idea what to do, and running out of options in our area.  

Any ideas of what to do next?  

I am a 41 year old male.  
1 Responses
Avatar universal
COMMUNITY LEADER
There is one other med out there that is approved in Europe and some docs will go out on a limb to give in the U.S. As an experimental drug. Did you try taking the mess differently (like with food) or taper up?

Did you get a copy of your pathology by any chance?

You may have a rathke's clef cyst in conjunction with the tumor and that is why you have multiple issues... Is your neuro- endo testing all other hormones? Do you get copies? I assume yes but... What else is low? Everything else is normal?

I am panhypopituitary. So I do all the replacements... All but one... It is a pain but it can be done.
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