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High prolactin but no tumour

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annemarie75
annemarie75

Hi,

I had an MRI that didn't find a tumor , yet there is no other explanation for my high prolactin.

The endo didn't really think I needed treatment because I wasn't experiencing any side effects.

However, I managed to persuade her to give me a trial of cabergoline.

I've been taking 0.5mcg for 7 weeks now and my prolactin has decreased from 2000 to 1000. So the medication is working. I've lost a stone in weight and I feel calmer, less stressed, and my night sweats have stopped. My periods are regular again. I thought it was perimenopause as I am 47.

I' m just wondering since the medication is decreasing the prolactin, does that mean that I do have a benign brain tumor or would the medication reduce it anyway?

I got the feeling my endo thought it was connected to stress/childhood truama, etc and not anything medical.

Thanks in advance.

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1 Reply

  • MikePST
    MikePST annemarie75

    Posted

    Hi Annemarie,

    Hopefully you already have the answers to your issues but I will reply just in case. I am male and had raised prolactin at 1000mIU/L. Cabergoline 0.5mg/wk reduced this to 250 within 3 weeks and stopped the regular 'clamming up and crying'.

    3 MRIs last year - The first one "showed" a 6mm microadenoma, the second one reported "normal appearance of pituitary", and the third report said there could be an adenoma or then again it might just be nothing!

    My experience with MRIs is that microadenomas may not be easily identified even by MRI, and MRI images vary greatly in quality depending on the machine and the Radiographer. As small adenomas produce less PRL that larger ones it is possible you have a small one that is not easily identified.

    Unless your endo has already explained the cause of your high prolactin I would ask for another MRI at 9-12 mths.

    Interestingly, my second Endo told me to stop Cabergoline as she said it is only needed for Prolactinomas and she said at my level of 1000 it unlikely to be a caused by a Prolactinoma (I have a thickened Pituitary Stalk which can also raise PRL). After ceasing Cabergoline I started to feel bad again with increased anxiety, depression, difficulty exercising and crying again! I persevered for 3 weeks thinking it might be due to withdrawal symptoms, but finally put myself back on 0.3mg/wk (1/4 pill every 3 days). This brought PRL back down to 200 and things improved.

    Are you still taking Cabergoline ? Have you found the underlying cause?

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