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 prolactin levels fall unless she breast feeds her infant.

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  • THINGS YOUR ENDO WON’T TELL YOU, AND MIGHT DENYI haven’t been on this forum in some time. I figured I would return since I am pretty much starting this process all over again.BACKGROUNDEleven years ago, I was diagnosed with a Prolactinoma.  I was only 16, but I was overweight and did not have periods.  I was VERY active. I participated in sports year-round (volleyball, basketball, track,...
  • i really don't know what to say. I mean I recently found out I have this thing I know nothing about. Originally I went to the doctors to inquire about birth control and how to be safe- and it ended with me getting a blood test. Fastforward to a week later I found myself alone getting a MRI, with everyone just giving me smiles and acting as if it's normal. Then two days later I'm meeting with a...
  • I am a 45 woman how have not had her period in 5 years.. The doctors told me I was in my menopause - but when I suddenly started to bleed again... (3 times in that period) I was sent to the hospital becourse they thougth it was cancer. Lucky it was not.I got some blood test and it showed slighty elevated proclactin levels. Since I have fibromyalgi and are getting cymbalta for that - they assumed...
  • Knight_Writer


    I think I get more and more nervous about being with someone physically and emotionally. So much has happened over the past few years emotionally, physically, and emotionally with just myself that I am extremely hesitant adding someone else to the mix. With the last person who truly hurt me with all of my fears, I don't want to open up to someone again. Even when I started to get close to...
  • Knight_Writer


    I find myself having to bite my tongue more than usual lately. I am not sure if it has anything to do with my tumor or medication. Perhaps it is a mixture of that and the environment that I have been in over the past few months. It could also be that I am tired of being pushed around and having to control EVERYTHING I say and do. My anger is attempting to release itself more often and I am...
  • I have a macroadenom, not sure how big. Was operated but that did not entirely solve my raised prolactin issues although the values were significantly reduced. I was then put on Cabergoline which I had stopped a few years ago, my prolactin levels sunk to within normal range initially with 1/2 0.5mg twice a week. For a while I felt great and even lost weight. Then I stopped taking the meds because...
  • Feel absolutely no different, i took my last dostinex pill a month ago and my last hydrocortisone pill 3 months ago. I was told all my levels were normal was slowly lowered till i could discontinue them. In the 10 years i have not seen any of my symptoms decrease with the exception of gynocomastia stopping.This condition has wrecked my life, it has caused me to withdraw from the world, i've lost...
  • Knight_Writer

    It Hurts

    I'm starting to get a BAD migraine today. The sharp pain starts in my forehead and then moves to my temples. If it starts moving behind my eyes again, I may cry. Even with some headache medicine, this is one I am afraid won't be fixed without some STRONG medication. I just want one full day without any pain.
  • Knight_Writer

    My Tumor

    I am so incredibly exhausted with this thing in my head. I discovered my tumor back in Nov 2014 after multiple trips to doctors and hospitals since March 2013. It wasn't until my breasts started lactating that a doctor FINALLY took me seriously and ran tests. I don't even know how long I have truly been dealing with this tumor. Ever since I was a young teenager I had depression and issues with my...
  • Jo2092

    So tired of this!

    So I haven't had my period in over a year.  I've purposefully lost about 50 pounds over this year.  I received an MRI back in June and turns out I have a 10mm x 15mm macroprolactinoma.  I have been taking .5 mg of Cabergoline per week (1/2 a pill twice a week) since mid-June.  Recently saw my endocrinologist and found that my prolactin levels are back in the normal ranges.  I'm 34 and my...
  • AlwasyGeorgeeee

    Suffering from Cabergoline

    Hi guys, 21 year old female, normally physically healthy. Diagnosed with 9mm microprolactinoma December 2015, have been taking carbergoline for 6 months at a dose of 0.5mg twice a week. I am having terrible side effects of manic depression, anxiety, and OCD - on top of these symptoms I have lost over 10% of my body weight, being only 52KG that is a lot of weight, I am tired all the time, pale...
  • ngpatsy

    Feeling rather lost

    My prolactin levels now is 3500, going for my MRI next month end. Doctor told me that I have brain tumor, I am very worried. First thing that come across my mind is whether this is hereditary then worry how much time am i left with. Can anyone share with me I have been on anti-depressant as well, Chlorpromazine, prozac, risperidone, Flaverin but I have stopped for more than 1 year. Im...
  • deleted_user

    Is it just me?

    Hi, I have had this 'thing' in my head for over 20 years and i feel like its ruined my life. I have been on and off meds as they dont agree with me and I get panic attacks after a while of being on them. I feel utterly depressed, i isolate myself from people, which has worsened over the past couple of years and some mornings i dont want to breathe let alone get up out of bed. I am up and down...
  • I was wondering if anyone has had issues with pressure in their head or increased headaches while flying with a prolactinoma? Will be flying soon with my stowaway :) Any tips or advice welcome.
  • popeyesmom

    Alcohol question/cabergoline

    Hi everyone! New here to the forums - Will begin taking cab this weekend, starting slow with 1/2 dosage. Doc said I couldn't drink the night I take pill and the day after. I understand the day after, but why they day of? And, what would happen if I did drink the day after? From what I read here it's not a matter of decreasing the effectiveness of the drug, it's due to increasing the side...