Possible link, High Prolactin and polycythaemia vera

I would just like to ask you all if anyone amongst the community has a history of hyperprolactinaemia. When I was 28 years old I was diagnosed with a benign pituitary tumour which caused my prolactin level to run out of control to ten times the normal perameters. At that time I was told it was a rare condition and I was just unlucky. De ja vu!

I was treated for more than twenty years with bromocriptine which controlled the condition and in that time my sister acquired the same problem and received the same treatment.

I have recently read that prolactin production is high up on the pathway which includes JAK2 function and I can't help but think there has to be a connection with my two "unlucky" acquisitions of high prolactin and polycythaemia vera. Has anyone else had a similar experience?

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  • Hi there

    I also was diagnosed with a high prolactin level whilst trying to get pregnant in my early 20's and also was treated with bromocriptine. I have PV and am JAK2 positive - I have never really connected the two!!!!

  • Hello Violet

    This is my third attempt to reply to you. Apparently there has been a problem this morning. I think my post has become shorter and shorter every time I have re-composed it. Well, here's hoping this time. I just wanted to say that, as both times, when I had the over-proliferation of prolactin and subsequently the over-proliferation of re blood cells I was told the conditions were very rare, we seem to have been particularly unlucky. However, if there are not many others in the community it has happened to then I suppose it will just be put down to coincidence. The strange thing is that I can trace my PV symptoms back to when I STOPPED taking the bromocriptine. I have already been told there is probably NO link although I don't know how they can know this. It was only when I was reading a somewhat academic paper online that I saw that indeed there feasibly COULD be a connection.

    Best wishes to you.

  • I only took the bromocriptine for two short periods of time and that was such a long time ago - maybe we are just a bit unlucky.

    West wishes to you.

  • Hello CrazyDaisy, I have passed your query to Prof Harrison and she has said that there is no known link. I hope this helps. Best wishes. Maz

  • Thank you for taking the trouble to do this. I know there is no known link but just wished to see if anyone else had had the same experience. As I said, if not many others have had the same experience it could just be a very unlucky coincidence for me. With thanks and kind regards.

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