MPN Voice
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High Hemaglobin

Hi buddies, well, good news my E.T is almost under control. Saw my consultant today and platelets now 540 ive been taking 1gram hydroxy daily. She wants me to take 3 tabs at weekend and 2 mon-fri. Only worry is my Hemaglobin is still high at 15.1 I have no idea what my hematocrit is currently at but has prev been high too. She said if Hemaglobin still high then she will take off 1 pint of blood. My question is can you have E.T and P.V ? I've had a bone marrow months ago to help diagnose E.T so would ghis not show P.V or would they need to actually be looking for that separately?

Thanks and hope you are all doing as well as can be.

Best wishes lainy 🤗

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Hi Lainy, also ET jak2+.

My haemagloben at the time of my diagnosis was 16.1 and 15.7 three months prior to that, so both relatively high readings.

Also, haematocrit was 47.6 at diagnosis and 45.4 three months prior. Hydroxycarbamide treatment has brought these levels down. Haemagloben is around 14.5 average and haematocrit around 42.

I know ET and PV can share many overlapping features. I've also read that being Jak2+ can give higher haemagloben/haematocrit levels in ET.

I do sometimes query my ET diagnosis and wonder could I have been in early stage PV. My RBC count has always been within range though.

Mary x

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Thanks Mary, can I ask how much hydroxy you take? I'm surprised it has not brought anything else in my blood down WCC or RCC. It's great to know that "being Jak2+ can give higher haemagloben/haematocrit" I will defo make sure and ask what my hematocrit is next time or phone my ONS tomorrow and ask what it is currently at. Hope you are well.

Best wishes lainy 🤗

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I only take one tablet daily Monday to Friday and weekends free. Initially, I was taking one tablet seven days a week. When my counts fell to a desirable level the dose was adjusted.

My platelets at diagnosis however were only around 500, they're now around 350. Your platelets were obviously more at diagnosis, so maybe it'll just take a little bit longer for your counts to level out.

If I can remember where I read the information about ET jak2+ associated with higher haemagloben levels I'll post the link.

Mary x

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Thats great yout platelets at 350. My platelets were 1450 then started hydroxy once daily. Next check went to 940 so was put on x2 daily and today's 540. Not looking forward to taking three at weekends 🤢🤢 just to get the H.B under control too. Hope I don't need regular phlebotomy. X

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Fingers crossed for you Lainy. Keep us updated.

Mary x

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Will do Mary, I'm treating myself to one tiny little gin & tonic. Thanks again for advice x

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Hiya,

I was told intermediate types of MPN comparatively common and manifest through blood counts rather than differences in BMB

good luck

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Hi Lainy, good to hear that your counts are good, and yes, you can have ET and PV, so best to discuss this with your consultant. Maz

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I will do, thanks max. X

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