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EPO results

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julia15874
julia15874

Hi all, I hope everybody is well and doing okay? my EPO results are normal, they are 8 so they are good. However I am rather miffed to say the least, I told my Heamotologist that I've not felt well been really dizzy and my hands are painful and basically getting a lot of bone pain, he said non of those symptoms are Polcythemia symptoms and then told me to see my GP, then he said my heamocrit and heamoglobin and red blood cells arnt that high! Only boarder line it's it's probably my new level! A lot of people have higher than normal levels and they are fine, my heamocrit is 0.52 my heamoglobin is 17.4 and red blood cells are 5.66, I'm sure these are high and within the WHO criteria for a diagnosis of Polycythemia, it's just secondary or primary that's an issue, then he told me I could be still primary and he would like to give me a red cell mass test, if the exon 12 comes back negitive, I really don't know what to think? I not well, he says it's my new level probably and then says I still could be primary 😬, I'm totally confused! My husband says when my next tests are back we need another opinion because he thinks I should of had a venesection with my levels, can anybody give me advice on this I think I'm going crazy! Is there any body I could phone a number of advice on this in the UK? Xx

0 likes, 8 replies

8 Replies

  • harrishill1
    harrishill1 julia15874

    Posted

    Hi Julia. I don't know if your level is high or not. You shd ask your GP if he knows.

    ?He will know if it is too high or not. Usually the hematologist will test to see if you have the jak2 gene mutation. If you do, then the PV is primary. He can test your bllood to find out. After you are properly diagnosed, he may do a phlebotomy only if necessary. Hope this helps you understand it.

    harrishill

  • clem19079
    clem19079 julia15874

    Posted

    1ask 4 a socond opinion. Asside from that , heamatology treats your condition not your symptoms. You take these to your family doctor, some doctors are not great when it comes to giving assurance ( especially male doctors). When i am borderline i have blood taken off , sometimes i request it happens. In the meantime you could go to a blood bank and donate though wait unyil near the end of the venesection to point out your suspicions( if you do have pv or prv you cannot donate. Devious i know but until you get an answer and also if you find out it makes a difference, then thst might tell you something.
  • randal_373
    randal_373 julia15874

    Posted

    Hi Julia..........I agree with your Husband, Id go for a 2nd opinion. Im in the US but Normal range for women for  hematocrit is  38 to 46 and  hemoglobin is 11.7 - 14.9 but these value's can vary slightly from lab to lab. for Men  hematocrit  is 42 to 54 and  hemoglobin is 12.4 to 18. I just had a Venesection on 09/30/16, My  hematocrit was 49.7 and my  hemoglobin was 16.4 but my Oncologist wants blood pulled from me when my  hematocrit is over 45 my Red Blood Cells was 6.07 which is high. I hope i havent confused you, but as your Husband said, Id go for a 2nd opinion. Id Try an find another Doctor that specialized in Polycythemia if I could................Hope you get to feeling better 

    • julia15874
      julia15874 randal_373

      Posted

      Hi everyone, thanks so much for your kind responses, as you can tell I'm rather frustrated, I am going back to see the GP this week I'm going firstly to get my full blood counts from the hospital, as my doctor can't work in the dark, I'm going to ask him how he feels about my red blood count, knowing my history, I'm also going to ask him to run tests on my iron levels too if he can, I think I've too much, also looking at my full blood count it will give me an idea what my platelets are doing because they have been rising in early June they were just under 400 so I'm interested to know what those are doing now, the thing is my platelets Over this journey have never had a drop there's been a slight increase even when my red blood cells have dropped a little my platelets keep rising, I know it's no problem until there over but my Heamotologist was thinking once over ET not PV, thank you again I'll keep you in the loop? Xx

    • clem19079
      clem19079 julia15874

      Posted

      Your gp can take a blood sample himself and send it off and find out for himself. He can look at your eyes nails and ither things as well as a blood sample to see jf your liw in uron. Be warned that if you do have this discease , low iron is something you will have to live with.
  • ellen68007
    ellen68007 julia15874

    Posted

    Julia I will respond on my computer" keep getting kicked out on my ipad

  • julia15874
    julia15874

    Posted

    Hi all got my blood results printed off as I'm going to have a chat with my GP on Friday, the thing what's strange is my heamoglobin, heamotocrit and red blood cells are high, my platelets and white are fine but myRDW is low does that mean I could be anemic? As I don't want to be stupid and ask my GP for a test if it means something else, I've had no phlebotomies to perhaps this is my secondary reason (hopeful thoughts)

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