1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

Okay, I am now officially bewildered....!

Posted , 6 users are following.

kevin81762
kevin81762

Okay, I am now offically confused. After my blood work (CBC) a week ago today, which indicated an Hb of 18.5 and and a Hct of 53 (which was done in the am) I was able to see my Dr Internist. I had a ton of blood work done 3 days later (done mid-afternoon), in which my EPO was checked, urate, Jak2 exon 12 (which will take a little while), CBC, etc.... and....... everything was normal..! Not only normal, but significantly normal as opposed to 3 days earlier. My Hb was 17.1, my Hct was 47.5, my RBC, was 5.60. My EPO (which had not been checked before) was within the normal range, everything was fine. Now I am a firm believer in the power of prayer, but wow, what a difference! I will say that I picked up my H2O habbit, and was certainly drinking more water than I am normally accustomed too within those 3 days. Am I that dehydrated in the morning that my results would be that high? I am bewildered to say the least....    

0 likes, 11 replies

11 Replies

  • frances20411
    frances20411 kevin81762

    Posted

    Maybe a month ago, I wrote in the belief of prayer and drinking plenty of water..I hope that my message inspired you.  My HCT (in America) was once 55 and now

    I am 40 to 43...mostly because of what is mentioned above...but I also STOP

    EATTING RED MEAT and NO vegggies high in iron.  I do not take Iron pills

    as recommend by my onocologist.  Good luck!!

  • miranda98
    miranda98 kevin81762

    Posted

    Hi Kevin,

    I am curious as to just how much water you were drinking for the most recent round of tests. Is it possible that you over-hydrated to the point of diluting your blood?

    It seems unlikely to me that you would have been so dehydrated in the morning to produce such results, however, if you are in the early stages of secondary polycythemia, then the variance you described, along with the levels, seems plausible to me anyway.

    Can I ask what brought you in for the first tests- were you feeling poorly to begin with, or was this a random catch on a doctor's part? And by comparison, how are you feeling now?

    For me, I hover at high normal to slightly above normal in most levels, and when I am slightly above I feel like total garbage, out of breath, hot, dizzy and itching like mad.

    • kevin81762
      kevin81762 miranda98

      Posted

      Hi Miranda...

      I am trying to aim for 8 to 12 cups a water a day, as that is what health Canada and may other health advicates advise in the first place... Diluted my blood that much? I highly doubt it... I could see it dropping a little bit, but certainly not that much. Well, I've never really been out of breath; Itching yes, but not fatigued or out of breath. As far as primary PV goes, my understanding is that at a genetic level, the stem cells (for making blood) are always on. So I am not sure why I would see fluctuations if it was that, it least not to that degree. I feel fine.. and I have always been one to be hot... Also, as mentioned in previous posts, my Hb and Hct have always been on the higher side of normal, along with my identical twin's.

      Do you have secondary polycythemia, or primary Miranda?  

    • kevin81762
      kevin81762 miranda98

      Posted

      I will also add that from everything i have read, an Hb level is typically higher in the morning than later in the day... My results were also checked twice as per the Dr Internist's request and confirmed... I have been checked for the main Jak 2 v617f mutation and it was negative and I am praying that this next one (Jak 2 exon 12) will be negative as well. 

    • miranda98
      miranda98 kevin81762

      Posted

      I agree, that doesn't seem like enough water to make a difference. I have yet to receive an official dx regarding secondary or primary- my jak2 was negative, EPO and one other test they ran that slips my mind now, were inconclusive in that they provided conflicting results. I'm supposed to retest in a few months and see if things change. Whatever I have is likely in the early stages, and I am apparently just very susceptible to fluctuations in my hemoglobin as it was my feeling poorly that caused them to start bloodwork in the first place.

      I still dont know alot about PV, so I am afraid I cant be of any more help as far as telling you what is going on. Glad that your most recent results were less worrisome at least, and hope they stay that way!

    • kevin81762
      kevin81762 miranda98

      Posted

      Huh.... I believe mine was 6.8, which from what I gather, is about the avarage for an adult male... I know the normal values vary though, with 4.4 U/L being the low cut off, while others see 3.3 U/L as the low cut off.
    • glenda2491
      glenda2491 kevin81762

      Posted

      What is the difference between the two Jaks?exon 12 and 2v6171? They said I test positive for the Jak 2 V617F?
    • kevin81762
      kevin81762 glenda2491

      Posted

      Hi Glenda...

      From what I gather, most test positive for the Jak2 v617f mutation, that is, 96%- to 97% of patients, leaving a small but worthy percentage of those who will likely test positive for another mutation, mainly the jak2 exon 12. That is what I asked to be tested for to try and rule PV out. And I am praying it does... 

  • julia15874
    julia15874 kevin81762

    Posted

    Hi Kevin just a question about your bloods, today I looked closely at my red blood counts since sept 2014, they were just above the normal range then today they are much higher, gradually risen over two years however looking closely my white blood cells, they have remained the same around 7.0, but what's really strange is my platelets they have over this two year period jumped from 245 to now 385 so really close to the 400 mark now, which 400 for women is the top for platelets I'm wondering if you have had any such rise too in your platelets as mine Infact have risen more than my red blood cells in two years? Jx

Back to top

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.