Why did GP put polycythaemia vera when nobody else has mentioned this?

Worried you might have a blood cancer?
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Hi all!

Im 44 year old guy and was told that i have a blood clot in my leg last week after they missed it in January when I went to A&E dur to pain in leg, redness and swelling. They phoned me last week to say i needed a scan and bloods, which the scan showed dvt in my thigh area and have been referred due to elevated Haemoglobin levels in bloods in first A&E visit and last week and looking back at my last bloods on NHS app, it says they were high then and this was in 2024, they were i think 174 and my haemotocrit was 0.53 but nothing was said or flagged then.

Ive been referred to a Haematologist but when I went to the GP yesterday, who didnt spend a long time on my notes he has put in my health conditions on nhs app, polycythaemia vera he also then put this on my sick note (my work said take two weeks off to get things sorted but just get a note).

Whats confusing is this is not stated anywhere in my discharge letter and even on the referral he put through which is why i made the appointment, he hasnt mentioned that. Nobody has mentioned this specific condition.

In my discharge to GP it states Hemodynamically stable, in view of polycythemia noted in bloods for o/p haematology review for further work up. I cannot access blood results for either visit to A&E.

I have sleep apnea and my machine has not been working properly for last two years mainly because it was 7 years old ive got a new one now but thats been mentioned but im just really confused and worried of the mention of primary polycythemia. The surgery have asked the doctor that i saw to phone me as that was the doctor who made the notes, but wont be until tomorrow.

Any advice or guidance would be hugely appreciated!

Thank you!

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Hello there @Wicn, welcome to the forum. I’m so sorry to read of that DVT and needing to go into hospital to begin with, I imagine it’s been a very stressful and confusing time. I’m glad the clot has been treated, that’s one less thing to worry about.

We forum members can’t offer medical advice, but as someone of a similar age diagnosed with Polycythaemia vera ('PV') I recognise much of what you’ve shared. My diagnosis in 2023 sort of arrived unannounced after I’d been tested for a gene mutation and I received an automated test result which showed I have Polycythaemia vera ('PV'). I then went on to have further testing, including a bone marrow biopsy and aspiration, spleen ultrasound, and later sleep testing for apnoea.

It sounds like your doctors have noted what they think is your diagnosis in your medical notes and you’ve been able to learn this before all diagnostic testing has been completed. Not ideal, as it leaves you in this worrying in between space.

I’d say, purely from charting my own blood test results and haematocrit levels with my haematologist since diagnosis, try not to worry about yours being 0.53 as this is only slightly raised above its normal range. The lower the haematocrit, the thinner the blood, and less likely to clot. Clotting is my main risk with Polycythaemia vera ('PV').

In the meantime, while you await further testing, coming to Blood Cancer UK is wise as there’s a lot of outdated and inaccurate information at the end of a quick google. I tend to stick to official sites like this, researched by experts, as opposed to social media or search engine results. MPNVoice is another great site.

I would directly share information here about Polycythaemia vera ('PV'), but first please hold out hope that another cause is behind your clotting. A new forum member recently joined as he was sure he had Polycythaemia vera ('PV') but testing showed he did not. There is also a condition called polycythaemia, sometimes erythrocytosis, which is raised red blood cell numbers without the gene mutation associated with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'), and thus not considered a cancer like Polycythaemia vera ('PV').

Speaking from lived experience, if it does end up being Polycythaemia vera ('PV') that you’re diagnosed with then there is a lot of support and medical advice waiting for you. I’ve been told I can live a normal life into old age with some simple adaptations. The forum has many members who live well with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and Essential thrombocythemia ('ET'). You would not be alone with that diagnosis.

If you’d like to call the lovely specialist Blood Cancer UK nurses to pass any medical or support queries by them, their number is 0808 2080 888.

But for now, try to keep yourself occupied before you see a haematologist. There’s a lot of waiting for and in between tests and their results, so I’d say it’s time for some healthy distractions.

Please let us know how the testing goes and make sure to take all your queries to your haematology appointment. Do consider giving the BCUK nurses a call. Thinking of you @Wicn.

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Hi Duncan, thanks ever so much for your reply it really is appreciated as im a bit up in the air. Just took me by surprise as it had not been mentioned by anyone or even in my discharge papers. When i looked at the raised level in general my sleep apnea could have caused it but the problem is i could spend days and days up to a diagnosis thinking about every possible scenario i need to have an initial consultation first and then i guess tests so i guess it could be sometime before i know, right? I do hugely appreciate the advice and yes Google does just seem to direct to worst case in anything put in regarding symptoms.

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You’re most welcome @Wicn, I’m just really sorry you’re going through this at all.

From what I’ve read around the forum, it can take quite some time for an overall diagnosis due to the various tests needing to be sent to specialist labs and so on, and can be dependent on how close we live to the labs, so trying to tolerate the waiting might be your main focus for now.

I’m not surprised all this took you by surprise, for me it felt life-changing. It also reassuringly made sense of some odd health stuff I’d had over the years, including a heart attack caused by a clot when I was even younger and healthier. Sound familiar?!

If you’re an active person, or not actually, just getting outside and burning off some nervous energy can help. I went on some furious hikes and watched many old favourite films to take my mind off the waiting, to some success. I’m sure you’ll know what activities might distract you. Sharing with loved ones helped too, even though I didn’t have the language to describe what was going on. A problem shared and all that. Please don’t be shy about sharing stuff here about the emotional aspects of all this, I find it helps me to get it off my chest around others who really understand.

My haematologist reminds me that I can live into normal old age with Polycythaemia vera ('PV') and am more likely to pass away with it than from it. Hard as it is to believe, for me life can seem pretty ordinary whilst also having Polycythaemia vera ('PV'). Of course, and I can’t emphasise this enough, please hold out hope that your diagnosis ends up being less worrying than it currently seems.

Please keep us posted @Wicn, I’ll keep an eye out for how you get on.

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