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EPO question

Posted , 4 users are following.

julia15874
julia15874

Do all you on here that are primary Polycythemia, do u all have a low EPO or do some of you have a normal EPO? Just asking x

0 likes, 4 replies

4 Replies

  • keith28441
    keith28441 julia15874

    Posted

    Hi Julia

    My levels are low but as mentioned in an earlier posting to you, very occasionally, normal levels of EPO have been found in some patients with primary PRV. This is rare though.

    Kind regards

    Keith

    • julia15874
      julia15874 keith28441

      Posted

      That's what I thought mine is 8 so it's really normal I think, my Heamotologist did say the same, he said we can't rule out primary yet because they can't find a secondary reason, thank you Kieth xx

    • julia15874
      julia15874

      Posted

      Although I'm still convinced I'm secondary, especially if the exon 12 is negitive, 18 days is tomorrow, so I'll keep my fingers and toes crossed that it's negitive xx

  • joycem
    joycem julia15874

    Posted

    Sorry, I can't help, EPO levels have never been mentioned to me.

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