Polycythemia vera

Hello. I'm here on behalf of my husband .

He had a heart attack and 2 stents put in at that time. Year Oct 2008

His haemoglobin level on admission was 20.2 . Range 130.00-170

As a result referred to consultant who diagnosed polycythemia Vera, all scans extra don at that time were normal, so it was decided PV with no underlying cause.

He had about 6? Venesection and was discharged to care of GP

Just lately I see him looking very red faced and sleeping at any opportunity .

He encouraged him to see GP who did bloods . GP has done nothing but could you please give opinion on his blood test done a month or so ago.

Haemoglobin 177. Range 130.00-170

Hemocrit . 0.54. Range . O.40-052

Because of what I perceive as a decline should we return to GP and be firmer about

Referral to the experts

Thanks you for reading and hopefully helping me to assist my husband

Gill

9 Replies

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  • Hi Gill, obviously we are all different in our disease and in our treatment. I have a PV and always get new or worsening symptoms checked out by the medics. My hematocrit has to be kept less than .45 but I'm not sure if that applies to everyone.

    As I say if his symptoms are worse, you are worried and not happy with his counts, then seek medical advice sooner rather than later. Write down all your questions and insist on answers. PV is quite a rare condition so GPs have sometimes very little experience treating it.

    Have a look at the MPN Voice website where you can get trustworthy information and if necessary, Maz our editor, is very helpful in getting info from Professor Harrison at Guys who is an expert in the field of PV and other blood conditions.

    Kindest regards Aime xx😺😺

  • Thanks you Aime for getting back . I think I will encourage my husband to return to the doctor x

  • Hi Gill,

    Sorry to hear your husband is feeling worse lately. as Aime says our conditions are rare and many GPs never see them. I would encourage your husband to go back and ask for referral to a specialist haematologist who will be aware of the treatment options on offer and blood levels which would be of concern. I also have PV and have had heart problems in the past, my consultant keeps my haematocrit below .45.

    best wishes, Fee

  • I have PV, my consultant likes my haematocrit below .45 too! I would recommend going to an MPN specialist, it sounds like they are not keeping an eye on him at all.

  • Get him back to the specialist as soon as, these levels are high and the redness and fatigue warning signs, I have the same signs when my bloods are too high and he needs attention to address this, hope he is okay soon!

  • Hi Gill,

    I have had PRV for 6 years now I go to Haematology out patient every 12 weeks. I'm all ways told my Hemacrit level should be .45 anything above .46 I have a venisection. I would have thought your husband should be monitored by your nearest hospital Haematology department as I am. Go back to your doctor and asked to be revered back to Haematology especially if his level is .52.

    Hope all goes well.

    John

  • Thank you so much for this advice I am so grateful . Chris has booked to see GP so hope he gets attention soon

    Im on health unlocked Thyroid uk and it is just the best advice

    Thanks again . Wont say what I think of GP s 😐😐 Gill xx

  • may i ask a basic question? you say "PV with no underlying cause": us lot on this website DO have an underlying cause, a genetic mutation called an MPN which shows up on a blood test or a bone marrow biopsy. treatment for this can be radically different compared with that for people who have "secondary" PV without the mutation.

    if your man has an MPN then imho he should be seen regularly at the local hospital, if not then his GP should be able to manage his condition.

    good luck

  • Ok so he needs to talk to GP. I remember he had lots of blood yest at the time after his heart attack. He had venesections then. Maybe its different for him ??

    Thanks for that info

    X

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