Worried about polycythemia

Posted , 5 users are following.

Hello everyone. I'm glad to know this forum. I'm 42 years old male.I think i could have P.V. My blood test results was Hemoglobin 17.9 g/dl, Hematocrit 53%, platelets 170 (rank 150-450), WBC 5.25 (rank 4-11) and EPO 5.4 mU/ml. Last month the results were similar: Hemoglobin 18.3 and hematocrit 51.2. I have some symptoms: twitching muscles all over body(maybe due to anxiety), low blood pressure and tinnitus(i hate it). I'm worried because my EPO level is low (what is normal in P.V.).

Thanks to all of you.  

0 likes, 8 replies

8 Replies

  • Posted

    Hi Vincent, I have an epo of 8, well last time it was tested it can change my heamoglobin and heamocrit and red blood cells have been high for two years, you can have a normal epo with PV, but usually it's low like below 3 for a minor diagnosis. Have you had a JAK2 test? Or a JAK exon 12? I was worried to death too and we've all been there on here, I've no diagnosis yetmyself however with me been jak2 - and JAK exon12 - a normal epo it's less likely it's like 5% chance something really low That I have PV, I've relaxed more and my blood has gone down a little, still above what it should be but I'm not too concerned. I noticed your platelets and white cells are within normal range too, that's good news too, with PV in a lot of cases your platelets and red cells rise, that's one thing that worries me because my platelets are rising and now over the 400 mark, but still nothing to be alarmed. There's lots of people here to support you over your journey of a diagnosis and some are far more knowledgeable because they have lived Many years with PV. Are you seeing a specialist?

    • Posted

      Yes, i'm seeing a hematologist.I'm waiting for the JAK2. I'll have the result next month. Waiting is the hardest part. I also was made an arterial blood gas and spirometry. I don't know anything at the moment. 

      I've had high red blood cells for four years. But, last two months, it's been getting worse a little.

    • Posted

      No, he didn't. I got these results from my family doctor. I'm seeing the hematologist next month.In my blood test,EPO rank is 3.7-31.5. So I suppose that 5.4 is a low level. I read that low EPO is a  P.V. symptom.

    • Posted

      Your EPO level is within the normal range; most PV patients, although not all, are subnormal, below the lowest range, so in your case, below 3.7... But as many express on here, I'm not a Dr, I've just tried to do my homework. The study I mentioned was interesting, as an EPO of 5.4 was rather normal for some in the study. Some had hire numbers, some right in the middle.  

  • Posted

    Hi Vincente  I just looked @ your numbers.  Your RBC & platelets are well within normal range.  Your hematocrit is high normal range is 37-47.  Your hemoglobin is a little high.  Normal 12-16.  You're really not presenting classic Pv numbers.  But I'm not a dr and suggest you see an oncologist or hematologist for further testing.  Maybe a test to see if you have the jak2 mutation and get on anti-anxiety meds.  Good luck.  Zap

  • Posted

    Hi Vicente

    First, your Hb and Hct are not that bad, your other counts look good, including your EPO, which is above normal. Your Hb range will be between 12-18, some settings use 17.5 as the high end, some even 17.0, but I think that might depend on where you actually live. I have had similar numbers as yourself. Most PV patients have a sub normal EPO, although sometimes it can be within the normal range. I doubt your low blood pressure would be a symptom/sign, as its usually the other way around, high. I've mentioned a recent study on here before, that looked at the EPO levels of normal healthy adults, and the numbers varied, but an EPO of 5.4 mU/ml was within the range. In fact, two thirds of the healthy subjects had an EPO that ranged between 3.3 and 10 I believe, with females tending to have higher EPO's than men. Most patients with PV have a mutation of the jak2 v617f (95-97%, with some studies as high as 98%), the remainder have a mutation in the ja2 exon 12, around 3%. Thus, vertually all PV patients have a mutation in the jak2 gene. The first test they'd do would be the jak2 v617f, as it is by far the most common of the two. Hope that helps...  

  • Posted

    Hi Vicente,

    If you do not have any sickness, you may be in the early stage of developing PV. but need to get the test result of  JAK2 ...Richard Law

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.