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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  • Razzi7

    Other causes

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    Just received my results and I have a small nodule on my pituitary gland but my Dr said it is so small he feels that is not causing my elevated prolactin levels. So it's a wait and see if still elevated in two months and if so will redo the MRI. What would be some other causes of an elevated level? Any help would be greatly appreciated. I just want to get a handle on this.
  • mmarch

    sudden onset of side effects

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    I am 38, and was diagnosed with a prolactinoma about 5 years ago. I was on bromocriptine for about 3 years, which I did not tollerate well at all. About 2 years ago I switched to cabergoline, and after the initial adjustment period, I have been (mostly) side-effect free. I take 0.25mg twice a week, and after my last dose I felt VERY dizzy, nauseous, headache and generally awful. This experience...
  • Razzi7

    Possible prolactinoma

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    I just had my MRI today and should find out my results in the next few days. A little background, I've been on risperidone for three years and my menstrual cycle has been absent and then regular and then absent. Just recently they've been regular just not the same time every month but do get it. I don't lactate either. I suffer from depression and anxiety and had episodes of severe depression and...
  • deleted_user

    Weight gain?

    Has any one suffered from weight gain? I have always been a size 3 & 5 woman. I am now a size 10. This really freaks me out. I even eat less than I use to. Does anyone else suffer from this?I get really bad headaches almost every day. I am sluggish all the time.
  • greenbirds96

    antipsychotic weight gain. high prolactin levels?

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    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...
  • srenaya

    New test new results

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    hello all, I am new here and this is my fist post. I have always been small framed andworked out regularly. In 2015 I was diagnosed with depression and bipolar disorder. I was placed on Invega (pill and shot form) and this is when my journey begins. In the 1st month of taking the pills,June-July of 2015, I gained 20 pounds. I did not reealize it until I had packed it on. It wasnt until a few...
  • petallica

    Disagreeing doctors

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    Hi everyone, new to the group! Realised there wasn't really anywhere to talk about these kind of things so I'm glad I found you all here!I was diagnosed 2 years ago with prolactinoma at age 30 female, taking cabergoline twice a week since. Since I've been diagnosed, I've moved countries. I was initially diagnosed in Canada, with a great doctor who told me to have 6 monthly MRIs, eye tests with...
  • Riderfan3169

    Hello recently diagnosed

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    Hey all. Thanks for letting me join. 37 y/o male here diagnosed today with prolactinoma. Started having issues about 5 years ago tired weight gain no libido, erectile dysfunction. Went to Dr. Told me to lose weight and I would be fine. You d a new Dr after 2 years of busting my hump at the gym and with dieticians with no luck. New dr. Test my testosterone and it was in the crapper. So started on...
  • Prolacmac

    Clicking Sound?

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    Hi everyone,46 y.o male. Just joined the group. Big prolactinoma now shrinking thanks to Cabergoline. Before I started Cabergoline about a year ago my proalctin level was 4700. Now down to about 130. Has anyone ever been that high and got it down over time to the desired 4-15 range? Also, looking back to before I knew I had the tumor, I remember often hearing/feeling a soft clicking sound in my...
  • Mackandmilly

    High prolactin

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    Hi thanks for letting me join.21 yo diagnosed with a pituarity tumour. I have recently started taking caberoligne once a week about 4 months ago and I'm still so tired all time. Does anyone have any idea of how to shake feeling so tired and maybe losing some weight????
  • DK370

    How do you manage your prolactinoma? Mood swings?

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    About me: 26 yo M diagnosed 10 months ago with a golf ball sized prolactinoma with a PRL around 2,000. My initial symptoms were frequent headaches, partial vision loss and low energy/libido (Test was around 100).Today I thankfully have 20/20 vision again, much less frequent headaches, and definitely feel more energetic. The size is about 60% of what it used to be.  PRL is around 40 but Test is...
  • Eyc

    Weight loss after surgery -microprolactinoma

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    Hi everyone I am curious to know who has lost weight after having the tumor surgically removed. I have gained a lot of weight with this condition and will be having surgery in a few months as I can not tolerate any medication. What has your experience being like after surgery? 
  • cg1974

    Weight gain

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    hello. Wondering if anyone can help as feel like I'm going crazy. Diagnosed with a microademona about 18 months ago. I have elevated prolactin, no periods, no sex drive and have gained 2 stones in weight. I literally look in the mirror and don't recognise myself. I feel like I am losing my mind. My endo prescribed cabergoline but I have scared myself to death reading the side effects and dare not...
  • fendertelemusik

    natural way to lower prolactin ?

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    I had been taken off meds as my levels were normal... so stopped cabergoline and hydrocortisone.... but felt something wasnt right when my nipple began to become sensitive and was always tired catching colds and sleeping a lot... with weight gain... any idea how to lower this naturally without going back on cabergonline
  • Bobcat1965

    Insomnia

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    Hello, I have a high prolactin level approximately 100. I am a female and I was diagnosed in my 20's and I am now 52. I have never taken anything to correct it I have just lived with it. I have hypertention diagnosed about 2 years ago and take metoprolol and lisnopril for that condition. I have insomnia and have suffered with it for years and it is getting worse. I am considering taking melatonin...