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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  • ahill8807

    my ordeal

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    I was diagnosed with a prolactinoma tumore about four months ago. I was put on meds that would basically shrink the tumor but doctor says i cant concieve while on this medicine. I am 28yrs old and just wish things would have been different for me. Ive been healthy all my life so getting this news has been the hardest for me . in regards the doctor says i have to stay on it for life. My next MRI...
  • ngpatsy

    Feeling rather lost

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    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 currently...
  • I am a 19 year old female who suffers from borderline personality disorder. I was first given depakote but was discontinued because it didnt work. I had gained 20 pounds on depakote. I am now taking invega and since then I have gained 30 pounds total. I think that I missed a period a couple months back. my breast have also enlarged and become sore and tender. I think my prolactin levels are high...
  • hi everyonei am a male dignosed with macroprolactinemia .. but i am not sure becaue i teseted my self in eygpt and the mri mechine was old .. they even didnt told me what the size of the tumer is .. i am now taking cabergoline 0.5 mg two times a week and hcg .. fsh .. nebido " testosterone undecanoate " should i repeat the test .. and right now i am suffring from cabergoline .. i am always tired...
  • 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,...
  • Hi everyone,I can't believe I've just found this group after years of dealing with a prolactinoma. Hurrah- people who understand!!So - let me just jump in and ask a question. I've been on Cabergoline- succesfully and almost side-effect free- for 5 years. I do still get some fluctuation in my prolactin levels, but generally (after initially being on too high a dosage that made me pass out!) they...
  • I am new to this support group, but I am hoping to find some comfort in talking to other people with this condition. I was always a heavier girl growing up, despite being involved in sports my entire life. After years of dieting as a teen, questions started to arise when I did not have a period by 17. I was taken to a doctor and they found I had a prolactinoma. I was put on Cabergoline and...
  • jas07100

    Prolactinoma Symptoms

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    I am newly diagnosed with a macroprolactinoma. I haven't begun treatment (my first endocrine appt is Tues). What I have found to be the most frustrating part about this process so far is that I am having sooo many symptoms that have been raising my concern for a number of months leading up to my diagnosis. BUT when I research symptoms of prolactinoma I get a short generic list that seems to...
  • 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...
  • Hi there. 28 yr old female recently diagnosed with 3mm prolactinoma with 30 prolactin level and many symptoms. I am really wondering of anyone else has ever or is currently on the drug cymbalta? It gave me so many side effects including what presented like central hypothyroidism (which deals with tsh levels, which is one of the hormones secreted by the pituitary gland....) and a couple years...
  • 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 and...
  • I have recently been diagnosed with a pituitary adenoma. My endocrinologist prescribed me Cabergoline which I was initially okay with. I've been reading people's reviews on the medication, and most say this medication fatigues them and they are tired all the time. I don't know if it's from the pituitary adenoma, or something completely different, but I already feel fatigued most of the time. The...
  • Okay so I've forgotten how long I've been on Cabergoline now but it's a few months. My Prolactin levels came back at 20,000 before treatment and have reduced a lot but I'm still on 0.5mg twice a week.Anyway, had anyone had weird side effects when they drink with this drug? I'm 22 and before I could go out and drink with everyone else, remember most of the night and know my limits. But now, I...
  • I am a 28 year old female and over the last few months I have been feeling like I am going through puberty again. my breast size has increased at least 5 cup sizes since January. I am thinking about asking my doctor to put me on birth control to level out my other hormones. My prolactin level is stubborn and will not go below 30. I am currently taking 1/4 of a 2.5mg bromocriptine tablet since...
  • Hi I am a 37 year old female that just got diagnosed with hyperprolactinemia. My first level was done in the afternoon and was 74 ng/ml second level was drawn one week later on fasting labs and got 91 ng/ml. I have had no menstrual cycle for 6 months now. Prior to that have had an irregular menstrual cycle since 2014. Before 2014 it came every 28-32 days. I also have a high white blood cell...