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Polycymeria Vera

Posted , 4 users are following.

Suzyq1958
Suzyq1958

should I be concerned I have raised red blood cells 5.12 and have had a previous TIA with a family history of strokes.

My GP referred me in January to our local hospital Haematology Department but delays caused by the secretary resulted in my file being sent to the wrong department. We are now six weeks downthe line and I am back to square one as he is on holiday for two weeks.  Delay now is six weeks!  I am wanting to book a holiday and need to know if I am OK to fly. Help!

0 likes, 11 replies

11 Replies

  • Orseblue
    Orseblue Suzyq1958

    Posted

    I suggest you go back to the GP and tell him/ her what happened.

    Even with a hematologist it seem to take time and monitoring of a number of bloodtests before they say to much.

    My PV was discovered back in May 2015 due to a clot in my portal vein going into the liver and positive to JAK2. My treatments

    did not start straight away, venesection (take out blood) was

    done a few months later. Saying that I was put on Warfarin straight away.

    Tell you GP you are planning to go on a flight soon.

    Hope all goes well for you.

  • Suzyq1958
    Suzyq1958

    Posted

    Thank you Orseblue for your response.

    i had a telephone call with my GP today who is referring me to another hospital where I should get an appointment within two weeks. Hopefully the process will be speedier.

  • harrishill1
    harrishill1 Suzyq1958

    Posted

    Hi suzyQ. I agree that you shd see your Gp and tell him how long the wait is. High red cells sounds like Polycythemia Vera. I have it, and it means the Hematologist may decide to draw some of your blood if the red count is too high. That lowers it temporarily. We can live a nornrmal life span with this. That is, if you even have this disease.  After a couple months my hematologist put me on meds. But I usually feel well, and am tested on a monthly basis to make sure my blood is. Good luck..
  • Suzyq1958
    Suzyq1958

    Posted

    Thank you Harrishill1.

    hopefully I will get some answers soon.  I am also having a pins and needles type sensations in my hands and feet which is really weird.  I am Vitamin D deficient so didn't know if it was connected to that.

    just  wondered if anyone else experienced this?

  • PO32_6AP
    PO32_6AP Suzyq1958

    Posted

    5.12 sorry what do u mean blood count hematocric ?
  • Suzyq1958
    Suzyq1958

    Posted

    My haemoglobin level is 152 the normal range is (120 - 150)

    the red blood count is 5.13 the normal range is (3.8 - 4.8)

    my lymphocytes (Abs) are 3.3 the normal range is (1.0 - 3.0)

    my ferritin level 157.9 the normal range is (13 - 150)

    my creatinine level is 97 the normal range is (45 - 84)

    my lactate dehydrogenase level is 239 the normal level is (310 - 620)

    these were the abnormal readings on my latest blood tests.  I am not sure if this is connected in any way to the raised red blood cell levels.

    • ellen68007
      ellen68007 Suzyq1958

      Posted

      Hi Suzi! I was reading your levels. For curiosity I got out my final report and diagnoses from the Hemotologist. I have a report in front of me to which there are some that you have mentioned 

      Hemoglobin level is 163

      Creatinine level 81

      White blood cell count 6.4

      Platelet count 252

      Hematocrit 0.49

      Neutrophils 4.6

      LD 198

      Protein 70

      Erythropoietin 7.1

      Hope this is a comparable for you. My hemoglobin is higher than yours. The Hemotologist said it was high but she did not seem to concerned. I do t have a clue. Just saw your levels so thought I would share according to my report here in Canada. Any comments on this would be interesting! 

    • Suzyq1958
      Suzyq1958 ellen68007

      Posted

      I'm still waiting for my hospital appointment to come through but have decided to pay privately for the JAK2 test.  The results take ten days to come through but at least I will know one way or the other whether I'm positive for the gene.

      i will keep you posted with my progress. 

      I think my GP would have continued to monitor my levels at the surgery if it wasn't for my family history of strokes and my past TIA.

      thank you for getting in touch!

    • ellen68007
      ellen68007 Suzyq1958

      Posted

      Thank you for keeping me posted. That was my very last test. It was done February. 12th I got the results two weeks later. I had to have the bone marrow aspiration test done twice. First here in my home town to which not enough sample was taken for the Hemotologist to complete her testing. The Doctor in my hometown said my blood disorder was a mystery. The resident Doctor that works with the Hemotologist said "this is a puzzle". Just so many tests. The waiting and wondering was the worst. At the end of it all the bone marrow test came back negative. That is what I was diagnosed with the secondary Polycythemia. Will be thinking of you. 
  • harrishill1
    harrishill1 Suzyq1958

    Posted

    Hi suzyq. Most of us who have Polycythemia Vera have reddened skin, as though we have a red tan, before being diagnosed. We also have itching, and pins and needles especially after a hot shower. Once I was on the meds, my redish tan went away. Another symptom I had before being diagnosed was that my eyes got blood red. My GP at the time thought it was allergies. He was wrong. The only blood test results I really look at is the red and white count. I am low in vitamin D, but that is because the meds makes it low. I don't worry about it. I take regular vitamins, but try not to eat too much protein, cause I have gout. Anyway, hope you see the hematologist before too much longer. Have a good day, harrishill1. 
  • Suzyq1958
    Suzyq1958

    Posted

    I haven't got a reddish tan but I have had itching on both legs from the knees down.  The bedcovers seems to make this worse too.  I'm using E45 cream but didn't realise this could be related to the blood.

    at least I'm on the fast track system now so should be seen quickly.

    thanks to everyone for your advice and support.

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