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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  • 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...
  • 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...
  • 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...
  • Hi there! I don't really know where to start as I am all so new to this. I am a 23 year old female. My menstrual cycle had very been normal my entire life, up until the last 6 months. It has been so unpredictable, lasting anywhere from 35-60 days. The first time, my boyfriend and I thought we were pregnant! Along with the irregular cycles, I would get so severe of headaches that I felt like I...
  • I just got a result of 27.8 back on a Prolactin test (I'm in the US, so that's US units).My endocrinologist is having me re-test for prolactin level, and is also doing a macroprolactin assay-- we're waiting to get the results of this second round of testing back.I'm a 36 year old woman, and suspect that these prolactin levels may be behind a bunch of unexplained symptoms I've had for about 4...
  • ac123

    Continuous Problems

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    I was diagnosed with a Prolactinoma at age 17, now I am 23 years old and it continues to be a head ache.At age 17 doctors discovered the problem due to amenorrhea for several months, so they tested my prolactin levels. I believe the initial prolactin levels were in the 350s. Began seeing a specialist and taking cabergoline. I started gaining side-effects to the medication, but it was decreasing...
  • Hi all, Has Anyone else been on Cabergoline and had good results for the initial few months but later on the Prolactin numbers started getting high again? Thats how it is for me. Initially it went down from 70 to 20 with just 0.25 mg once a week and now i take double the dose but it is still back to 60. I have a .5 mm tumor. Doc has checked macroprolactin and will increase my dose but am feeling...
  • Hi, My boyfriend has a pituitary tumor and elevated prolactin levels, which have been medicated with cabergoline for the past few years. Recently he has been having increased dizziness and occasional vision loss. His MRI showed that his tumor has gotten larger and his prolactin levels are very high (sorry I don't have tumor measurements or level numbers). He went to a neurologist who...
  • deleted_user

    Chronic migraines

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    Hi, I'm new here. I was diagnosed with an 8mm tumor a couple of weeks ago. My prolactin is only 61-82 (two recent tests - years ago when my discharge started the prolactin level tested as normal!) so it's not even 100% clear that it's a prolactinoma, but since I lactate, I guess we're going with yes. I'm a woman in my late 30s who has never been pregnant, though I did successfully breastfeed a...
  • hey everyone im 31 years old male and about 6 years ago was diagnosed with a large pit tumour and was put on cabergoline and hydrocortisone to deal with the tumour and out of whack hormones.for aslong as i can remember i've never been able to get a proper erection and the odd time i do it lasts a minute at most and then can't get it back.i also have no feeling during sex just feels numb to touch...
  • popeyesmom

    going off Cabergoline

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    I'm just starting the cabergoline this weekend and in 5 weeks I'm going on a cruise. I usually wear a scopolamine patch on the cruise to combat seasickness.My question is - can i go off the cab for the duration of my vacation? Is there a weaning process? Plus, I don't really want to be unable to drink alcohol while on the cruise :) Thanks