Hello there.
I was recently diagnosed with Polycythaemia vera ('PV') and have started venesections. I’ve only had two and already my haematocrit is down to 0.42 from 0.54 and haemoglobin 137 from 172 so seems to be going well and I’m being checked again in a couple of weeks.
My ferritin was 9 before I started treatment and my understanding is ferritin is low in Polycythaemia vera ('PV') as it gets used up to overproduce blood cells. I’m assuming venesection will have reduced my ferritin further but I was wondering does ferritin stabilise with haematocrit or will it just keep getting lower even if my blood counts are stable?
I am a bit tired too but hard to know if that’s from low ferritin or Polycythaemia vera ('PV') I guess.
The only other treatment I’m on is aspirin as I’m low risk cos I’m 44 and no history of thrombosis.
Many thanks
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Hello @Barry1, that’s great news about those venesections bringing down your haematocrit so well. I love hearing when it’s working for others. From my understanding, 0.42 would be normal for someone even without Polycythaemia vera ('PV'), so that would reassure me about venesections helping.
You know, your question about ferritin made me realise I haven’t had mine tested for 2 years! Going to get onto that, thank you for raising it. For reference, mine was 21 ng/mL at diagnosis and 5 ng/mL a year later.
Venesections lower all blood cell numbers I was told by my haematologist, including the ferritin in the bone marrow and around the body. Ugh body horror moment there! For other forum members living with Polycythaemia vera ('PV') like @Rammie18 (hope you don’t mind me tagging you, good sir!) when they’ve felt fatigue build up they can ask to be checked for low iron/anaemia, and if low have received iron infusions. This does seem to vary though depending on where your treatment is, and perhaps how assertive you are in your request!
I’ll draw attention to this great query of yours to the @BloodCancerUK_Nurses (hope you don’t mind folks!) as I bet they can explain it best. And I’ll now check when I can get my own ferritin tested, thanks again @Barry1!
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Thanks for your reply @Duncan and glad to be of service in reminding you about your ferritin!
It all makes sense what you said and good to know some correction of iron may be possible but guess is very case by case.
I imagine this is also the case with how long haematocrit stays where it should be too. All very early days for me at the moment!
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You know, there always seems to be something new to learn about Polycythaemia vera ('PV')! It’s weirder to think that it can become a little routine. Learning about it helps me feel less anxious I think.
There does seem to always be a treatment for any eventuality with Polycythaemia vera ('PV'), so try not to worry. I got the impression that there’s more variation in blood cell numbers to begin with as our bodies get used to treatment, and again if medicine starts or dosages change. Like a little retuning.
Yes, my haematologist aims to stablise the haematocrit level at or below 45 % with as few phlebotomies as needed; “free you from phlebotomy!” he often merrily says, I think it might be a slightly grim catchphrase of his!
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