Hi, this is my first post on this site. I was diagnosed with polycythemia vera in 2024. After an initial intensive treatment program which, brought my levels back under control. I’ve had no treatment for a few months. However this year my HCT levels went up but 2 weeks later they dropped without any treatment. My main symptom is feeling lethargic. This week I’ve had no energy and most things are taking extra effort.
Do other people go and get their blood levels checked before they are due? My next blood’s are needed until the end of February, before I see a consultant. It would be nice to hear people’s thoughts. Thanks
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Hi @Jonesi welcome to our forum, I am so glad that you have found us.
You ask if other people get their blood tests done before they are due.
All I can say is my NHS GP surgery or hospital would not authorise my blood tests too early.
Mine are usually, depending on the blood tests, authorised for about 7-10 days before a clinicians appointment.
My blood test results can fluctuate for various reasons too.
Your symptoms and your blood test results sound good questions for your next consultants appointment.
If you have a specialist nurse you could also contact them about your symptoms and concerns.
I was diagnosed 21yrs ago and have had regular blood tests at 3- 6 mth intervals since then.
I hope others will share their experiences.
Please do let us know how you get on and really look after yourself.
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Hi Jonesi, sorry to hear you are feeling so tired. I too was diagnosed with Polycythaemia vera (PV) in 2024. Up until now I have had blood tests monthly, I was tested last week and becase my results were positive my next test and appointment is in April.
If I have an issue I can contact the hospital and bring my appointment forward. I have done this before. However, I am in Spain so how feasible that is in England I dont know.
Regarding being tired there are so many variables it could be anything, if you are concerned you should check it out.
I seem to go through spells when I am more tired than I feel I
should be, when this happens I try to sleep for an hour or so in the afternoon. I find this helpful. After a few days I generally start to feel more energised. Best wishes and good luck.
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Hi @Jonesi - I was diagnosed 2 years ago and am now stable. I have my bloods checked at 6-weekly intervals. I had an appointment at Guy’s last week and my HCT was 0.456. Coincidentally, I had a review with my local team a couple of days after and my HCT was 0.42. I asked about the disparity and the consultant said it really can vary daily. Factors to consider are hydration levels, stress of travelling and anxiety.
In answer to your question about fatigue, I find it can also vary. Thursday, I could barely put one foot in front of the other and wanted to curl up. As I was walking home from work, I didn’t need the attention! Yet, another day I feel invincible. It’s finding what works for you and if you can factor in some rest during the day, then do it.
Best wishes.
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Hello there @Jonesi, welcome to the forum. I see you’ve had great responses from others living with Polycythaemia vera (PV) and dear @Erica shows that her blood test results have fluctuated a lot too over her long healthy survival.
Here’s the great Blood Cancer UK information about Polycythaemia vera (PV) in case you haven’t read it: What is polycythaemia vera (PV)? | Blood Cancer UK
I live with Polycythaemia vera (PV) like you and have monthly complete blood counts. Like @Pedro I’m outside the UK, but I’ve read that other forum members in the UK diagnosed with Myeloproliferative neoplasms (MPN) tend to have blood tests more regularly after diagnosis, typically monthly with Myeloproliferative neoplasms (MPN) as our blood cell numbers can proliferate so fast with these types of blood cancer.
Frequency of blood testing also seems to relate to how high-risk we are of clotting. If we’ve had a clotting event like a heart attack or stroke or are older than 60 then we tend to be automatically classed as high-risk and need more frequent testing and more elements of treatment.
As I’m considered at high risk of clotting due to surviving a heart attack I’m glad to have monthly blood testing. My haematocrit is usually slightly different, and when it’s occasionally above 45 % I have phlebotomy. The only pattern I’ve noticed in myself for when my haematocrit rises enough to need phlebotomy tends to be if I’ve eaten too much iron-rich food in the week prior to testing. So long as my haematocrit is below 50 % I don’t worry as this is in the normal range for folks without Myeloproliferative neoplasms (MPN).
As for your lethargy I’m sorry to read how it’s affected you. Cancer-related fatigue is so common it has its own acronym of CRF, so you’re not alone with experiencing it. Mine was so bad after I started taking daily hydroxyurea that I wondered if I’d ever be as active as I used to be. Thankfully mine faded over a few months to a predictable, more tolerable level.
I’d say when fatigue kicks in to simply rest from what you were doing and to resume it later. It’s just not worth pushing through or fighting against fatigue as it’s our body’s way of letting us know we need to slow down. I mean, we’re living and moving around with a blood cancer overproducing blood cells whilst tolerating treatments including chemotherapy—no wonder our bodies get fatigued! Resting and resuming usually helps me achieve what I was doing but without hitting a wall of exhaustion that can wipe me out for days.
Here’s the Blood Cancer UK information about fatigue should you like to read: Fatigue | Blood Cancer UK
Do let us know how you get on @Jonesi as you can see there are many of us around the forum living with Polycythaemia vera (PV).
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