Prolactinoma?

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I have a prolactinoma, but even with medication it hasn't gone away... Iwas diagnosed with a prolactinoma (I think a macroadenoma, so a large one) last year because I wasn't getting periods. I got an MRI and lots of blood tests and got given a prescription for Cabergoline. It's really good (not much side effects) but sadly it hasn't worked, I've been taking them since the start of January this year. The doctor recently put me on double dose (4 tablets a week!!) and I've been doing that for about 3 weeks. A while back results showed that my prolactin levels did go up, but not to the levels they wanted. I know it's not a quick process but I'm getting a bit worried, what if nothing works? I feel like I've been on it for a long time. Would I ever have to get surgery to get it out, or radiation? I'm quite scared of those things so I'm a bit worried. Anyone got any experience or advice?

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  • Posted

    Hi Fluffy scout,

    I have a prolactinoma too, mine was about 12mm. I started on quinagolide and my doc upped the dose as well, it controlled my prolactin levels ok but initially there was no change with the tumour on MRI. I had another MRI twelves months later and it is no longer visible! So try not to worry to much different people need different doses, and you could always try a different drug. Are your prolactin levels coming down?

    Chutney xx

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  • Posted

    Hi

    Well I would think , usually surgery

    Is the first treatment they would opt for

    It is usually the best solution

    There is a natural medicine that may be very safe to use

    (Not in combination with pharmaceuticals)

    That help to reduce the size of prolactinomas

    It is called Melatonin

    Which makes you sleepy

    I've read a few research articles that it may help

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    • Posted

      Hi Courtney,

      With prolactinoma surgery is not the first line treatment option. They can respond well to medication and shrink/be cured, and in some cases you can then come off medication altogether.

      So in my case I am very glad to have stuck with medication and so far not had surgery

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  • Posted

    If medicine doesn't work, you should start searching for a surgeon with experience with transsphenoidal pituitary tumor excisions. I won't lie, the surgery is a scary thing, but when normal treatment fails you'll get the best results by getting it removed as soon as possible. Look for the a highly experienced surgeon, even if they are out of network. If you do have to go out of network, ask the in network Neuro surgeon for a referral.

    The most important thing here is the experience of the surgeon, which will greatly improve the outcome and recovery. There are very few pituitary tumors that get as large as mine was, I wish I had gotten the surgery sooner. I was so concerned with the cost that I almost lost my vision due to the mass.

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