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Prolactinoma

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katienellie
katienellie

I was originally diagnosed last May with Prolactinoma that stemmed from not getting my period for over 6 months with off and on again headaches.  My prolactin level at that time was 200ng.  Everything was somewhat getting better until a month ago.  My headaches/migraines are nonstop and so severe I went to the ER and had another MRI done which noted my adenoma has increased by 3mm now to 9.5mm.  The only thing touching my headaches are tramadol which is addictive but at least gives me some relief.  Throughout all of this my endocrinologist has responded with asking me to just stopping by cabergoline for a few weeks if I get a response at all.  I’m getting scheduled for an MRA and a vision screen test.  My neurologist wants me to see my endocrinologist to advise me on whether I need surgery to remove it or to change my medicine.  I feel like there is no light at the end of the tunnel here.  Any recommendations?

0 likes, 3 replies

3 Replies

  • Francie123
    Francie123 katienellie

    Posted

    I too have a prolactinoma. I had surgery last February to remove it but there is a small bit left so I am back on cabergoline twice a week, .5mg or half a pill. I was taking 1 pill a day before surgery and my prolactin levels were over 400 at the begining, my latest bloodwork a few months ago showed 80 so it is down but not normal yet. I feel like you like what else do I do to help this? I will pray that you get answers you want and need. You may also want to see a neurosurgeon he was the one who did my surgery..they go right up your nose now so there is no open brain surgery required. It does hurt for a few weeks horribly though.
    • katienellie
      katienellie Francie123

      Posted

      How big was your adenoma when they removed it?  And do you feel better?  I’m taking 2 1/2 pills .5mg now.  I feel horrible everyday.  Mostly I keep it to myself cuz nobody really understands.  Hoping to get some answers tomorrow.  I hope you feel better!!!  How long ago was your surgery?  Was it worth it?
  • lina88061
    lina88061 katienellie

    Posted

    Im so sorry to about your headaches, its so diffcult deal with. Are you currently on birth control? I had notice while on birth control it significantly increased my headaches waaay more. Also if you don't mind me asking , did your Dr ever offer to switch to bromocriptine ? Cabergoline was super harsh on me and made me have way more headaches and side effects. Of course everyone is different , but perhaps you could see if the Dr has other options, as far as meds.

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