Rising haematocrit levels

Hi I haven't been in touch for a while. I am jack 2 positive ET diagnosed 7 years ago. I take 500 hydrea daily and plavix. My haematocrit level has been rising and is now at .49. Does anyone know if there are any diet changes I could make to reduce this a bit? I read something about spinach and broccoli but not sure. Would love any ideas. Thanks. Margo

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  • Hello Margo,My hematocrite often rises to over 50, I am P V .so then my Hydrea is increased,eventually it comes down ,tho just now has been high for weeks.Monthly blood test due tomorrow,have not considered diet,drink lots of water every day.My medics do not seem to worry too much as every thing else is good,be interesting to see what others say.Best wishes to you.

  • Hi

    As Inca has said drinking LOTS of water helps keep your blood thin.

    I am sure your consultant will be keeping an eye on it, us with PV and ET often have overlapping symptoms.

    All the best

    Paul

  • Hi Margo, it could be that you have PV now. I was initially diagnosed with ET, but following rising hematocrit numbers, further tests revealed it was PV. I started treatment with Pegasys interferon and all counts are now controlled, with no need for phlebotomies. Since you are taking Hydrea, maybe you need to change the dose? Alternatively, it could be that you were simply dehydrated when you took your bloods. It significantly affects the HCT readings. So it is important to drink plenty of water before your blood tests. Diet does not make a difference to me, I did not have an iron rich diet before diagnosis. Good luck! Susana X

  • Hi thank you for this advice. You may well be right about the P V. I will drink lots of water next time and see what happens. Glad your counts are good Margo

  • Hi Margo

    You may well now have PV however, your haematocrit level will change due to the Jak2 mutation and hydration wont effect this, the viscosity of the blood is sometimes effected when you get dehydrated so to keep hydrated will make you feel better in general.

    My haematocrit levels rise over a period of 3 to 4 months as a matter of course even though I am on Hydrox but in general a phlebotomy of a unit of blood normally gets me back on track for 4 to 6 months before we go through the process again. I've had PV for 12 years now and you learn how to cope with all the changes, keep smiling.

    Mick

  • Morning Margo. I have PV and am JAK2 positive, however unlike many folks on here I am not on any medication, save for warfarin to deal with the portal vein thrombosis that my PV cause before diagnosis. My target hematocrit level is just 0.4 and I am visiting the hospital every week or two to have venesection to address it. I must admit it has never really been clear to me why different people have different hematocrit targets; why 0.4 is the absolute maximum for me when others' consultants seem happy to let them have levels at 0.5 and above. I'm sure there are good reasons for it all but it is not obvious to me.

    The only dietary advice I have been given is to avoid foods with very high iron content, and also strong concentrations of vitamin K. I was told that the frequent venesections are really to push you into being slightly anaemic; starving your body of the iron needed to create new red cells. Not sure if that was specific advice just for me (with the complicating factor of the thrombosis) or just general advice for managing hematocrit levels for PV folk.

    Certainly the advice about drinking lot sense of water is consistent with what I've been told, and especially important on venesection days too as it helps the blood flow more freely.

    Cheers,

    Paul.

  • Hi,

    Regarding eating foods high in iron, please do not be afraid to enjoy the odd steak or whatever you enjoy. It would take eating high in iron foods regularly over a sustained period of time to affect your iron levels significantly.

    The only way to increase your iron levels significantly over a short period of time is iron supplements.

    Paul

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