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Results at last!!

Posted , 3 users are following.

julia15874
julia15874

Hi all as you know I went to see a new heamotologist yesterday, I took all my blood results, jak2, JAK exon 12 and epo results, he looked at them all in fine detail, asked if I smoked or ever smoked, I said no. He said it is without doubt in his mind I do not have polycythemia Vera, he could give me a BMB to confirm but it's invasive and it would be pointless because it would only confirm what he thinks, the epo is normal at 8, negative mutation and the fact my heamocrit has risen and dropped, with PV it just keeps rising and does not fluctuate so it's not PV, He did however after looking closely said he would in his opinion diagnose me with erthrocytosis, now he said there's familiar erthrocytosis that's another mutation of the epo or p50 gene but in his opinion he thinks I have got it due to menopause, so in other words secondary polycythemia, he's told me to concentrate on getting my medication either herbal or prescription for my menopause and once I'm through it my bloods should settle down within normal range, he's said my bloods hopefully won't rise above 49 heamocrit for a long period of time and if they do I'll have a venesection but because of the fluctuation between mine at the moment been between 47/54 it was 48 yesterday and never really sticking at one level and going up then down all the time he won't give me a venesection as I'm obviously bringing my heamocrit down naturally in some way which is again another non PV symptom so it's best left alone without phlebotomies or a venesection at the moment, he also doesn't want to deplete my iron when I am menopausal as it will not be helpful to me. Also if my bloods remain high after menopause he then will diagnose me confidently with familiar erthrocytosis, that's when a treatment plan will take place, again if my heamotocrit is stable and higher that 48 but it's a watch and see for now, I've to have my blood tested every three months to make sure they don't rise any more, So at last I have a label hopefully a correct one, and It's not PV thank fully and I thank each and every one of you for your help and support during this process and wish you all good health for now and in the future. Julia xx

0 likes, 4 replies

4 Replies

  • peter98873
    peter98873 julia15874

    Posted

    Well Julia.  You must be delighted with your new prognosis.  Seems like your new haematologist has taken the time to study your symptoms and come up with what is hopefully, the right answer for you.  Not having PV is excellent news.  Hope this continues and that you enjoy good health and a more enjoyable outlook.  My best wishes for your future.
    • julia15874
      julia15874 peter98873

      Posted

      Thank you Peter, I wish u health and happiness too, take care x
  • ellen68007
    ellen68007 julia15874

    Posted

    HI Julia! I am so happy for you. Your Doctor sounds like he knows what he is doing! I as well after a year of testing was diagnosed with secondary Poltcythemia. Mine was COPD but now my respirologist specialist has it under control. The worst part of this is all the testing to rule out. Once we get a diagnoses we now know what we are dealing with. I wish you all the good wished possible. Keep in touch.

    Ellen 🇨🇦

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