Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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Endocrine System
/ Prolactinoma Support Group

133,000 Prolactin Levels

faithwonderwings
faithwonderwings

I’m 24 and I was diagnosed 8 years ago with a Prolactinoma. I’ve been on Bromocriptine, Cabergoline and Quinagolide - all had up and down levels, none going below 22,000. I am now at 133,000. I can’t see any others with levels this high.


I’ve been to a surgeon but he is reluctant to operate as the tumour has never grown and is not by my optic nerve. He will as a last resort, but it can cause more problems and not solve the issue.


I have a few questions:


• Should I be looking into my eggs and seeing if they are viable? I want kids in the future and I won’t be able to if my levels aren’t controlled.


• Is this affecting my weight? I can’t seem to get it down and I was always super tiny. I’m small anyway - 5ft so even a little weight looks a lot. 


• I don’t seem to have many side effects at the moment like gallactorra but my levels are ridiculously high. They tested for MacroProlactin but this came back just the same.


• I’ve been on the contraceptive pill for 8 years - I went on it becaus I’d not had any periods. Could this be adding to my Prolactin Levels?


• I am starting a trial drug - Octrecide Injections alongside Cabergoline. This is not licensed for use with Prolactinoma’s but they seem to have run out of ideas. Is this the same for anyone else?



I feel completely lost having been around in circles and only seeing my Consultant once every few months. It seems to take years to get anywhere. 



Feel free to get in touch with me!


LaniePadme
LaniePadme
Faithwonderwings, I'm so sorry for all you've been through! I was wondering about kids too, but my doctor is booked solid 6 months out. Hormonal imbalance really messes with my weight and moods so I can't imagine what your numbers are doing to you. All the neurosurgeons that I saw said they wouldn't operate unless the meds didn't stop the growth. I also have Friend who has the surgery and after a couple years her prolactinoma grew back. I hope you get answers for all your questions.
Fynn_theHuman
Fynn_theHuman
Hey Faithwonderwings, i saw your post and had to signup. I also have levels over 100,000, so you are not alone please don't worry about that! I am in the exact same boat, no surgical options and have had to put look into freezing my sperm going forward as they are concerned my testosterone levels will never be normal. I just wanted to let you know that i understand what you are going through. Best wishes
GApeach23
GApeach23
I am surprised to read that you did not respond to cabergoline. Usually the higher the prolactin, the more the tumor responds to that drug. It seems like you should def be a candidate for the surgery. Where is your doctor? There is a Pituitary Center at the Emory clinic in Atlanta, GA with amazing neurosurgeons and endos. Hope you get some answers!
GApeach23
GApeach23
Also, as far as freezing your eggs... I did do IVF to have my 1st child because I was not ovulating. My ovaries had healthy eggs but my pituitary was not passing the message to trigger ovulation. I also stopped taking birth control and did monthly estrogen patches and progesterone instead to help with pregnancy opportunity. I do not think the hormone issues or medications "hurt" your eggs though- so you should be able to try for a natural pregnancy or wait until you are ready for a full IVF cycle so you could do a fresh transfer instead of freezing your eggs.