Im a 34 yr. old female and I started secreting a creme colored thick liquid from both my breasts 9 yrs ago. 5 years ago i was diagnosed with a small pituitay adenoma after receiving an MRI; however, my prolactin levels are normal. The doctors could not answer my question on why I have a pituitary adenoma and lactation (if thats what it is, they only looked at it) but normal prolactin levels except to tell me they may not be related but didn't say what else it could be. Has anyone else heard this?
Oh yes. I had lactaction with barely abnormal levels. I had the pituitary tumor but the docs said the level was not high enough for the full lactation (um, gee, there has to be a limit one has to reach!?).
The surgeon I eventually reached 12 years later responded that any tumor pressing on the part of the pituitary that sends out PRL would make the lactation - hence they can see, for instance, PRL tumors causing Cushing's or non-secreting tumors causing hormonal issues.
In my case, I did have the prolactinoma and the original tumor seen was Cushing's. I was told to ignore everything but I steadily got sicker, could not regulate my thyroid and had all sorts of weirdness.
I would suggest that you find a neuro-endo that knows more than your current endo - it took me a long time, too long - and get all your hormones checked, and get treated. There is no reason to be lactating this long.
Just to let you know I too have been told my prolactin level is not high enough to cause lactation but for me one dr did have it sent to the lab to see if it was milk fat and it did come back positive. We are in the midst of changing my blood pressure med because one dr said it has been known to cause lactation in males and that med is Spironalactone (sp?). It's been since the end of January of this yr and so far I'm still lactating.
My tumor was discovered in April of 08 and they it's to small to be causing any trouble 3x4 micro. My hormone tests that I have been able to get them to do have all been normal except for my TSH was at 3.2 but the FreeT4 was 1.2. They say that is normal but I'm finding it is questionable.
I feel for you and I'm sorry I'm not a lot of help but I just wanted to let you know your not alone and hopefully someday we'll all know more. Hang in and keep pushing, thats what I'm trying to do and some of the people on this site have been extremely supportive and full of info.
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