Question? I have started phlebotomy’s and but have not tested positive for jak 2 and bone biopsy has erthrocytosis. My doctor believed that in future we will have better testing to confirm polycythemia vera. Doctor believed I may have polycythemia vera. I have increased hemacrit and hemoglobin and rbc headaches Tiredness bloating after eating Any information?
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Hello there @FalseyKa, welcome to the forum. I’m glad you found it as you clearly have some questions you’re seeking answers to.
I’m really sorry to read of those symptoms you’re experiencing. Not being a doctor I had to check what primary erythrocytosis is and this NHS information might be interesting: Erythrocytosis - NHS
So primary erythrocytosis is more commonly known as Polycythaemia vera (PV). In 2023 I was diagnosed with the JAK2 gene mutation which led to having a bone marrow biopsy and aspiration that diagnosed me with Polycythaemia vera (PV). Blood tests showed elevated levels of red and white blood cells and raised haematocrit.
The tests I had are available already for Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN), perhaps you could seek these via a referral to a haematologist if possible? What did the doctor who diagnosed you with primary erythrocytosis offer as advice or treatment? Could they refer you to a haematologist?
Here’s the Blood Cancer UK information about Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
And here’s the BCUK information about Myeloproliferative neoplasms (MPN) which Polycythaemia vera (PV) is a type of: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Depending on where you’re based, treatments for Polycythaemia vera (PV) tend to be a cytoreductive medicine like hydroxyurea, occasional phlebotomy to help bring down the amount of blood, and often daily aspirin to help thin the blood.
Hope that helps a little @FalseyKa, do please let us know how you get on.
Hi @FalseyKa I have just responded to your other post and my response is the same, in fact you have reinforced my response, yes, we are unique beings with complex medical histories.
Yes, definitely write down all your fears, questions and practicalities for your doctor and ask about your symptoms and what they can do.
Please do let us know how you get on and look after and be kind to yourself
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Hi. Thank you for responding. The hematologist had me go for sleep apnea tests, heart scans, Jax 2 bone marrow, erythropoietin test, cbc. And ultrasound I was diagnosed in jan24. He did not tell me diagnosis I just saw it on the hospital paperwork when I go for the phlebotomys. All tests were negative But my RBc, hemoglobin, hemocrit are higher then normal
He is kinda stumped My hemacrit goes from 46-51, hemoglobin 15.8-16.. and RBC 5.44-5.89. He initially had me on 8 week phlebotomys then it went to normal and I could skip one then jumped up out of blue ( I had a cough for about a month/ asthma so I think maybe it jumped due to that, unsure
He seemed stumped. Paper work says primary erythrocytosis. ( I guess meaning acquired). I’m 64 years now. When I go in and he’ll say well you could have polycythemia vera even though jak 2 negative. Says in future may be more tests that can help
When I look on internet I seem to have all the signs of polycystovera I’m worry because my great aunt had a leukemia in 1985 and I’m thinking since polycythemia Vera seems storage and elusive, that is possibly how hers started. No other family history. At one point hematologists said maybe this is your new norm. I take an spirit a day at this point
My numbers after having the respiratory thing, went up to exactly where I was 1.5 years ago. I’m thinking he may go back to 8 week from the 12 week but I’m really unsure if it’s really working
I know I’m a post it says 95-98 %of polycythemia vera is jak 2 positive. But what about us that are not? Has anyone seen any other tests that can verify
I’m just scared that out of blue things could go way worse. This blood thing has no rhyme or reason
I’m about 25/30 overweight. I thought ( maybe crazy) but if I lost weight this would go away
I wish there would be another exact test to help
My Rbc, hemocrit and hemoglobin up so I don’t know diagnosis. Hematologist said was a balancing act to keep me slightly on anemic side, but I feel not good then
Frustrated since rare disorder no clear guidance.
I would have thought by now medicine would know or have found better treatments
Sorry down, but feel like in so of limbo
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Hi @FalseyKa I can hear your concern which is natural.
If you have expressed all your fears perhaps you might consider a referral for a second opinion or specialist.
However I am hearing on here that sometimes specialists will not accept referrals till a later stage.
Really be kind to yourself
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Hello there @FalseyKa, definitely sounds like you’ve been tested thoroughly! I was tested for sleep apnoea too, and enlarged spleen (apparently our spleens can start overproducing blood with these types of diagnoses). But what good are all these tests if you aren’t sure what it is you’re living with?! It is, after all, you that has to live with the uncertainty and the illness itself. I’m sorry for your uncertainties, I imagine it’s very anxiety-provoking.
Like dear @Erica says, perhaps it’s time for a second opinion? After diagnosis my first haematologist showed a lack of care for me, was very dismissive of the symptoms his treatment caused, and when he got some facts wrong about the treatment he’d prescribed I knew I wouldn’t be able to trust his judgement again and so I asked to be referred to a different specialist.
I’m so glad I stuck my neck out as now I have a caring, attentive haematologist who shares that he’s also pleased with how treatment is going for me. Caring doctors are the best doctors, I’d say. Interestingly my treatments and side effects settled down with my new haematologist, so he’s doing something right!
Hope I’m not making assumptions based on your spellings, but if you’re in the US there’s a great organisation called LLS.org who offer much the same support as Blood Cancer UK. LLS has specialists ready to offer advice and a buddy system and all sorts like writing groups and conferences. Have a look if they’re closer to home as local support can be invaluable.
As for weight gain/loss, these are symptoms that a caring doctor would want to address. However, I’ve never heard that losing weight would make blood cancer go away—these are genetic disruptions right at the source of blood cell production in our bones. Being healthy is more important than a specific weight, from what I’ve learnt.
Although, like you say, most of us with an Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) will have the JAK2 gene mutation, there are apparently dozens of mutations that might be related to these blood cancers developing. Another mutation in JAK2-negative Myeloproliferative neoplasms (MPN) is CALR. Perhaps your doctor could share what findings they have access to? They are your test results, after all.
As you say your doctor seems stumped maybe it’s time to look for one you trust the judgement of? It’s totally within our rights as patients to ask for second opinions.
Let us know how you get on, and don’t be shy about asking for the sort of care you need to live well.