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  3. Polycythaemia Rubra Vera

How high?

Posted , 4 users are following.

julia15874
julia15874

Hi all, firstly I hope I find everyone in good health? it's been about ten days since my last post, I've no answers yet weather secondry or primary but my question is how high would they allow your heamoglobin and heamocrit to get if you were diagnosed with secondry with no unknown course? Before giving u a venesection? I don't know my diagnosis yet but my last blood test showed a significant increase and my symptoms some days are getting worse so just wondered when I do get any diagnosis if they will venesection me or not with secondry, I can't bear to think he would just leave me without treating me. X

0 likes, 7 replies

7 Replies

  • keith28441
    keith28441 julia15874

    Posted

    Hi Julia

    I am not too bad thanks although I came out of hospital yesterday having spent 4 days recovering from gallbladder surgery. In answer to your question, I think it depends very much on your Haematologist. From my own experience, I can tell you that mine had me on a venesection programme from day 1 whilst undergoing tests and awaiting results. In fact, following my first consultation with him, I came straight out of his consultancy room straight into the treatment centre. At the time, my Haematocrit was 0.60, Haemoglobin at 20.3 and red blood cell count at 6.71.

    Hope this helps

    Kind regards

    Keith

  • ellen68007
    ellen68007 julia15874

    Posted

    HI Julia, I was the same as Keith to where I had vanesections while waiting for a firm diagnosis.
  • clem19079
    clem19079 julia15874

    Posted

    For me its borderline, though i generally know without testing that i need blood off.
    • julia15874
      julia15874 clem19079

      Posted

      I feel like I need something doing and in a way I don't want Polycythemia Vera but I don't want to be left with my symptoms and sent away if it's secondry I fit the WHO criteria levels and my blood for heamoglobin, heamocrit and red blood cells are way above for a lady for a diagnosis of Polycythemia, plus my platelets are getting higher too, but primary or secondry diagnosis I don't know yet till my latest tests come back. Jx

    • clem19079
      clem19079 julia15874

      Posted

      Secondary or primary, doesnt matter, treatment the same. You list your symptoms bring yhem to your doc or consultant or both and they will treat them acordingly. I have a list of symptoms. For the most part the meds i on treats them. Before i was diagnosed, the symptoms i had i thoght everyone on earth got them at some point. Asside from that i also thought some of my symptons was down to everything except a discease i didnt know existed.
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