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.
  • Eyc

    Fatigue after surgery

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    Hi everyone, I  had transsphenoidal surgery 18 days ago to remove my prolactinoma.  Everything has gone well and my prolactin is now within the normal range. All otherwise hormones are normal too. I am very weak and fatigued. I am noticing small progress but get tired easily and can not do anything around the house. I only last 4 to 5 hours awake before I need to sleep again.  I can walk...
  • Ddub

    No Energy...

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    Hey this this is my first post. Im 26 male and got diagnosed with a pituitary tumour about 3 months ago. I am on Dostinex and I am taking 0.5mg x2 a week. since the once a week was not doing anything. I have VERY low level of testosterone and high levels of prolactin. I am constantly tired and depressed. Is anyone taking anti depresents while being on Dostinex? Or related drug? 
  • 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...
  • sbar801

    Prolactinoma experience

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    I was diagnosed with a prolactinoma 15 months ago and I can't stress enough that if you feel like something is not right, go get tested. I spent 8 years being told I probably had a 'slight hormonal imbalance' and was put on the pill. After years of depending on the pill I was having so many symptoms that I decided to go off of it and that's when things went into overdrive. I didn't get a period...
  • 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...
  • 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?