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Does anyone else suffer from these things?

Posted , 3 users are following.

dan84
dan84

Hi all, Im Dan aged 30 and have prv with the jak2 gene.

I also have low testosterone and a zero sperm count.

Been waiting over a month for some test results to try to find out why this is as at the moment the doctors dont know why.

So was just wondering if it could be linked to the prv somehow,

Does anyone else with prv suffer with this too?

Ta.

0 likes, 3 replies

3 Replies

  • harrishill1
    harrishill1 dan84

    Posted

    Hi dan, iamsu re  you want to hear from men your age with prv. Although I am a woman, I find it interesting that you would have low testosterone. If I were you, I'd definitely ask my Hematologist about it. They may have other patients with the same problem. My own hematologist sometimes asks me about symptoms, wondering if I have the same ones as another patient. He could be very helpful with this problem.

    Harrishill

    • dan84
      dan84 harrishill1

      Posted

      Hello, 

      Thank you for your advise smile 

      I will ask and see what they.

      Thanks

  • lisa44844
    lisa44844 dan84

    Posted

    Hi Dan

    My husband was diagnosed a couple of years ago with PV and began standard phlebotomy treatment to manage it, sending his iron stores plummeting.  He has experienced great fatigue and symptoms like depression.  Recently, on a trip to see our family doctrine, it was suggested that he might be experiencing those symptoms because of low testosterone levels; he is now waiting for bloodwork results to be returned.  

    I was surprised to see that for individuals boosting their testosterone, it is common practice to monitor them for development of PV.  This leads me to wonder whether in individuals who already have PV, the low testosterone isn't a mechanism triggered by the body in an attempt to modulate the PV.   Have you ever discussed this possibility with your hematologist?  My husband is seeing his next week; I think it would be a good question to ask.  I'll get back to you with a response.  

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