Hi I’m 58 and was diagnosed with Essential thrombocythemia ('ET') 3 years ago and Polycythaemia vera ('PV') four months ago. At that time my hematocrit was 0.53 and its now 0.61 after two venesections six weeks apart. I’m moving now to venesections every two weeks apart. I didn’t expect my hematocrit to go up after a venesection yet alone to rebound so aggressively beyond the baseline level. Has anybody else had a similar experience and has the hematocrit trended downwards after such an initial rebound spike? On daily aspirin only.
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Hello there @Bosco, welcome to the forum. I’m really sorry to read of your diagnoses with Essential thrombocythemia ('ET') and then Polycythaemia vera ('PV'), what a double-whammy over a relatively short amount of time.
I imagine you’ve read around Essential thrombocythemia ('ET') since diagnosis with that in 2023 but I’ll put the Blood Cancer UK information about it here for reference: Essential thrombocythaemia | Blood Cancer UK
In 2023 I was diagnosed with Polycythaemia vera ('PV') so can appreciate your concerns about haematocrit. Here’s the great BCUK information about Polycythaemia vera ('PV'): Polycythaemia vera (PV) | Blood Cancer UK. Although I’m not a doctor, I get the impression (as I’m sure you do too) that treatment for those of us living with Polycythaemia vera ('PV') tries to bring our haematocrit down to below 45 %, so I get your concerns after your recent venesections.
After my diagnosis I had frequent venesections, I think fortnightly at first as my blood was so thick, and then monthly. My haematologist tells me that sometimes our blood will just thicken from time to time from food we’ve eaten, infections, reactions to treatment. My haematocrit rises notably when I’m ill with an infection, so could that be the case for you?
Something else I noted after my diagnosis was what I ate really could affect my blood, for example the amount of iron in my diet. I was taking a multivitamin before and after diagnosis that included iron, so I changed to one without and my haematocrit began lowering.
So I’d say from what I’ve been told by specialists that it’s not always a worrying sign when our haematocrit levels rise, although it’s still a risk to bear in mind. It is worth asking your own specialist as they know your unique blood test results and any patterns in them. It might be that your haematologist will adapt treatment if your haematocrit doesn’t decrease with the aspirin and venesections. I take daily hydroxyurea capsules as well as aspirin and they brought my haematocrit down to its normal range so well that I no longer need blood removed!
Have you had a chance to look around the forum? There are many of us living with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') so you’re certainly not alone with that. Just use the search box at the top to find others using terms like Polycythaemia vera ('PV') or Myeloproliferative neoplasms ('MPN').
If you’d like to speak with the lovely expert Blood Cancer UK specialist nurses about anything medical or further resources then they can be called free on 0808 2080 888.
Anyway, hope that’s helpful @Bosco. Do please let us know how you get on, fellow Polycythaemia vera ('PV') survivor.
Thank you Duncan, nice to make your acquaintance and thank you for your detailed reply with the helpful link. I am just back from my latest venesection today and I’m down to 0.55 which I’m delighted about. I did take on a few gallons of water beforehand so I guessed that helped! I will take a good look around the forum as you suggest. Thanks again.
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Oh you’re most welcome @Bosco, excellent news and a great result! I love it when mine drops from the last result. I had my complete blood test last week actually and my haematocrit came down a bit too. Now make sure to celebrate these small successes, I like to go for fancy coffee (and sometimes a doughnut).
Please don’t hesitate to ask what you need here, you’ll find we’ve had great discussions about all sorts relating to Polycythaemia vera ('PV') and Myeloproliferative neoplasms ('MPN') generally. There’s a lovely bunch of people around the forum who live well with Myeloproliferative neoplasms ('MPN') so I’d say you’ve found a great place @Bosco.
Oh and yes, I try to drink a lot before venesections too—I call it my pre-phlebotomy hydration quest! Gets me in and out of hospital faster, I find 