× As their name indicates, these relatively common pituitary adenomas do not result in excess hormone production. Instead they typically cause symptoms because of increasing size and pressure effect on the normal pituitary gland and on structures near

Non functioning adenoma or prolactinoma?

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Replied by yorgun on topic Non functioning adenoma or prolactinoma?

No problem. I understand what you are trying to do and thank you for that. However, I should rely on my physician because he is a professional. It is no wise to self diagnose for myself. I tell my symptoms, feelings and medical history to him, he is not like ignoring me, he listens to me well.  He does what he knows. I cannot blame him for cabergoline not lowering my prolactin level or reverse my hypogonadism. It is a rare situation. Indeed, cabergoline causes erectile dysfunction in me(never heard of this but the very opposite) and make my tumor bigger which is more rare! Of course that doesn't mean i believe in my doctor blindly. If i sense something unwise he decides to do about my own health, i will refuse it as i did with my 2 previous Endocrinologists. If he finally comes to the counclusion that the only way left for me is surgery, i will visit a neurosurgeon in the list of PNA. There is only one specialist in PNA's list in my country and she is a neurosurgeon.
2 months 3 weeks ago #10704

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Replied by carolk on topic Non functioning adenoma or prolactinoma?

Forgive my questions, you would be surprised how many pituitary patients go misdiagnosed/undiagnosed. 

Back to the original question, I have read that long term medical therapy treatment can cause prolactinoma behavior to sometimes be altered,  and even tumor self-destruction is possible depending on the size. It is possibly why your prolactin levels did not rise with you being taken off cabergoline. The problem is the medication never got you to normal prolactin levels and normal hormone function.  It's a possibility that the adenoma was non-functioning and the hyperprolactinemia present has a different source, but your specialist made the diagnosis based on your symptoms, prolactin levels, and adenoma size at the time you were first diagnosed. You should bring this up at your next doctor visit. I'm sure he/she has seen many cases of hyperprolactinemia and can look at how you have responded to the treatment and can gauge what's happening and see if there is additional treatment/increase in dosage that might get you there. 
2 months 3 weeks ago #10702

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Replied by yorgun on topic Non functioning adenoma or prolactinoma?

Of course he has done a full hormone panel tests. In my country, we do not have any problem like insurance will cover it or not. If i want to, i would get my blood tests done and MRI scan every week for only 5 dollars each :) 

Anyway, my hyperprolactinemia causes deficiencies in LH,FSH, GH, TT(low side of normal) but my acth, cortisol, tsh and t3,t4 are good. My E2 and progesterone levels are deep down in dangerous range. DHEA-S is always high wihch is also not good.  My endo thinks when hyperprolactinemia is cured, the rest will be normalized as a natural process, so this is my notion in this case too.

But my question cannot be answered, i believe. How  to know if it is a microprolactinoma or a non functioning microadenoma in state of hyperprolactinemia? Can it be identified in MRI scan by its location or something else?
2 months 3 weeks ago #10700

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Replied by carolk on topic Non functioning adenoma or prolactinoma?

Hi There,
I am not a medical professional. Having said that, what I know about cabergoline is that is used to shrink the adenoma and lower the prolactin levels. You didn't say if your physician is treating your hypopituitary symptoms. Has he/she done a full hormone panel to determine if your other pituitary hormones are affected? The most important question: are you seeing a pituitary specialist? Not all endocrinologists are, most treat the more common endocrine issues like diabetes. My advice, start keeping a journal of your symptoms including the time of day they are occurring. Write down all of your questions and concerns, and bring the journal with you to your doctor visit so you can get them all answered. Also, a second opinion from a known pituitary specialist never hurts. Below is a link to PNA'S list of pituitary specialists that you can search.
https://pituitary.org/medical-resources/physicians

You may consider choosing one within a pituitary center. They have a team of specialists that can consult and work together to come up with the best treatment plan for you. Best wishes on your journey!
2 months 3 weeks ago #10699

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Non functioning adenoma or prolactinoma? was created by yorgun

How to differ a non functional microadenoma with a microprolactinoma in case of mildly elevated prolactin.

My prolactin level is between 20-25 even if i stop taking cabergoline.  I did not take cabergoline for over 2 years and my prolactin levels did not change in that period. That really bothers me. I have all of the hypopituitarism symptoms. Cabergoline does not help me recover anything despite my low levels of prolactin. 

If it is a prolactinoma, shouldn't it be causing constant increase in my prolactin levels?

I could not find any information online regarding this situation?
2 months 3 weeks ago #10698

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