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I have a pituitary tumor, though my bloodwork doesn't seem to indicate that it's influencing my hormone levels in any way. Has anyone had any negative experience with pituitary tumors, whether prolactinomas or otherwise? Did they influence your hormones in any way, or did the tumor grow in response to hrt,  etc?

Quote from: Madison2002 on October 23, 2018, 10:31:57 PM
I have a pituitary tumor, though my bloodwork doesn't seem to indicate that it's influencing my hormone levels in any way. Has anyone had any negative experience with pituitary tumors, whether prolactinomas or otherwise? Did they influence your hormones in any way, or did the tumor grow in response to hrt,  etc?

I have an adenoma, about 5 mm in size, on the pituitary.  It is associated with a high prolactin level tha made my Endocrinologist cautious about starting HRT, specifically Estradiol, which could stimulate the adenoma.  Normal for AMAB is 0-18 ng/ml; my levels:

Before HRT: 30 ng/mL and 34 ng/mL
2 days into estrogen: 40 ng/mL
4+ weeks on estrogen: 38 ng/mL

Ah, but the standard prolactin test isn't clever enough to tell the difference between monomeric prolactin, the stuff that helps us start nursing, and the giant macroprolactin molecules often produced by a prolactinoma that are inert.  A chromatographic test that separates them shows monomeric prolactin at 9 (normal range 3.4-14.8).  So my little monster is just a boring microprolactinoma and won't be causing me any problems with growth or lactation.

There's a really cheap test that measures the amount of actual real prolactin, compared to macroprolactin, huge molecules that test like prolactin but are actually inert and harmless.  You might nudge your endocrinologist to try that test.  It takes several days to get results back, but it can do wonders to set your mind at ease. (Macroprolactin, Serum; Test ID MCRPL)

If the microprolactinoma does grow, there is another medication I can take for a while that has very good results in shrinking these growths. 

Women with a microadenoma can apparently become pregnant as it's deemed the risk of very high estradiol levels further enlarging the tumor is very low, despite reaching levels of 24,000-40,000 pg/ml, up to 75,000.