Hi, I have a question for anybody who’s gone or going through Polycythemia Vera diagnosis.
For the last two years my Haematocrit has been above normal range but not all the time. In the last 2 years I’ve had 8 blood tests and 5 of those showed elevated Haematocrit (highest was 0.54).
Is it common for this to happen with Polycythemia where you can have 2 normal blood tests in a row followed by 3 abnormal then 2 normal etc? Or are they constantly high?
Hi @PeasNGravy and thanks for the question and I actually think your exact question is best answered by your nurse or medical team as they know your whole medical history.
However as a general answer from someone with another blood cancer who has regular blood tests I do find that the results do fluctuate depending on the testing labs, time of day etc.
Please do let us know how you get on and look after yourself
Hello there @PeasNGravy, fellow Polycythaemia vera (PV) survivor, happy new year!
I’ve noticed the exact same thing with my own haematocrit levels each month since diagnosis in 2023. My pattern seems to be 2-3 months where my haematocrit is below 45 % and then a month where it’s just over, and thus I’ll have phlebotomy. Then another few months of lower haematocrit, and repeat.
My haematologist said this slight flux is pretty normal. The treatment is intended to keep platelet levels lower, but not low enough to cause anaemia, and so occasionally we’ll just have slightly thicker blood from excess blood cells due to Polycythaemia vera (PV) doing its thing. I’ve cut down on iron in my diet and am active and healthy and yet my haematocrit percentage still drifts month to month.
For folks without Myeloproliferative neoplasms (MPN) I’m sure you know a ‘normal’ haematocrit level can be up to 50 % but we just need to be a bit more careful due to the clotting risks of thicker blood with Polycythaemia vera (PV). If my haematocrit stays around 50 % or less than I don’t worry too much.
But yes, like dear @Erica says, always ask your specialist. Your own diagnosis and treatments will be based around your specifics, like what medicines you take and clotting risk due to age and so on.
Really glad to read I’m not the only one with the drifting haematocrit level @PeasNGravy! May I ask how you’re getting on with Polycythaemia vera (PV) generally?
Thanks very much for your responses, it is as I suspected. A Private GP was very concerned about my blood test results and wanted me referring to Haematology but my NHS GP did another blood test which showed normal Haematocrit so didn’t refer me (despite for the previous 4 months I had 3 blood tests showing high Haematocrit).
I’ve recently collapsed at home and lost consciousness. The GP thought I might have had a stroke but is now thinking it could be cardiac related. I asked for a blood test (thinking my blood was too thick) but this was rejected as I’d had bloods done 2 months previous.
I haven’t been diagnosed with Polycythaemia vera (PV) but with how poorly I am with persistent dizziness, hyper-thirst and pruritus I am getting concerned.
Thanks again.
Hello @PeasNGravy, apologies for assuming you were diagnosed with Polycythaemia vera (PV). I’m glad you haven’t been!
Although I’m not a doctor, I’d say that if you’ve had higher haematocrit levels in most recent months then that’s something that needs checking more thoroughly by a blood specialist. If your GP is not a specialist in haematology and isn’t supporting you in getting to the bottom of those nasty symptoms then I’d be tempted to contact PALS to ask for a referral to haematology: What is PALS (Patient Advice and Liaison Service)? - NHS
Perhaps ask to be tested for any gene mutations, for example JAK2 which is commonly found in folks with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET).
Do please let us know how you get on @PeasNGravy.