Susan's Place Transgender Resources

I know there are already a bunch of threads floating around about people getting elevated prolactin levels, I just wanted to whine a bit. So pardon me while I feel sorry for myself on a public forum for a moment :p

Today, a little over a year after beginning HRT, my doctor called up and said my prolactin level was high, like over double the highest they like to see (mine's in the 50s somewhere). I had actually gotten those test results a few months ago and freaked out about the high level back then, but never ended up calling the doc and sort of ended up "forgetting" about it. So now she cut my HRT in half and I have to go to an optometrist to see if my vision is getting messed with from a pituitary tumor.

I have already pretty much given up on any sort of social transition, but I was at least going to stay on HRT, and now that's getting screwed with too. Dammit, life, knock it off  >:(

With that bit of drama out of the way, I'm sure it's nothing...right?

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)

A level in the 50s isn't that big a deal.  You might have a microprolactinoma, a relatively common little thing that often fades away on its own.  The 'danger' level where prolactin itself can cause problems is a god bit higher.  It is a warning sign of something unusual going on.

My level was running around 40, but the Macroprolactin test showed the level of active prolactin was down around 9.  MRI showed a 3mm adenoma on one side of the pituitary gland, a probable prolactinoma.  (MRI = Expensive!; Macroprolactin, Serum test = Cheap...  Should have done the test first rather than MRI... Live and learn...)

If a prolactinoma gets to be a few CM wide it can put pressure on the optic nerves on either side of the pituitary, leading to double vision and related visual warning signs.  Cabergoline is effective in most folks at lowering prolactin levels and shrinking the little monster if it is causing a problem.

Your endocrinologist is just being cautious, not wanting to feed a possible prolactinoma.  The eye doctor checkup and a Macroprolactin test will provide good information for her.

Good luck, and the best possible results!

My prolactin levels currently range anywhere from 80-130 ng/ml but these levels are perfectly normal considering my estradiol levels are quite high (early pregnancy levels). When my E drops, so does my prolactin so that if it were truly a prolactinoma, prolactin levels would remain high and not decrease.

I would be wary of high prolactin levels (upwards of 50-60) IF cyproterone acetate were taken, non bio-identical estrogen or a non bio-identical progestogen like cyproterone acetate. Of the 8 prolactinomas reported in transsexual women in the scientific literature, 5 were taking cyproterone acetate, 2 were taking a non bio-identical progestogen and estradiol enanthate which may behave differently than bio-identical estradiol and all but one were taking non bio-identical estrogens.

Endocrine Society's 96th Annual Meeting and Expo, June 21–24, 2014 - Chicago
High Prolactin Levels in Transsexual Women Are Related to the Anti-Androgen Treatment Modality

"Treatment of male to female transsexual individuals consists of a combination of estrogen and anti-androgenic compounds including cyproterone acetate (CA), spironolactone, and GnRH analogues (GA)."

"CA treatment was associated with a pronounced increase in prolactin levels, in comparison to other anti-androgenic therapies, independent of estradiol levels."

Thank you both for your responses, they're somewhat comforting. I was okay during the day, mostly, but now it's really quiet and I've nightmarish scenarios floating through my head  ::)

I'll mention the test to my doc, thank you Michelle. And Kay, most of your post goes over my head, but I'm on spiro, micronized progesterone, and sublingual estradiol, so I think I'm okay that regard, perhaps my dose is just too high for my body to handle properly? Or elevated prolactin levels are just something that I will have during the course of appropriate treatment (HRT)?

I've been reading up on all the stuff that can cause elevated prolactin levels, and it can be so many things besides pituitary tumor things, even just really high stress levels, or just the body's natural response to HRT I guess? I don't know...All I do know is that if this all goes badly, I'm going to come back as a Cthulu-esque monster and burn everything down...EVERYTHING >:(

My prolactin level is 36 and my doctor said it is nothing to worry about.

Yea my prolactin level was high as well... they lowered my dosaged... did a cat scan and MRI to make sure my pituitary gland is ok...


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Quote from: IdontEven on November 08, 2016, 04:38:28 PM
I've been reading up on all the stuff that can cause elevated prolactin levels, and it can be so many things besides pituitary tumor things, even just really high stress levels, or just the body's natural response to HRT I guess?

Estrogen (as well as progesterone) stimulate prolactin synthesis. Prolactin goes up during pregnancy due to high levels of these hormones. Sublingually, estradiol levels peak and prolactin will increase accordingly. Pregnancy is not stopped due to high prolactin levels because professionals know this is a normal response to high levels of E and P but when it happens in transsexual women, oh no!!! In any event, this is just my opinion. Follow your doctor's advice but no harm in questioning and discussing this matter more thoroughly.

Awesome. Thank you so much everyone :)