Polycythemia Vera

Female, 33 Years Old

No Jak2 mutation, but other concerning mutations in genes associated with hematological malignancies. What do we think?

Hematocrit: 49%
Hemoglobin: 15.8 g/dL
Red Blood Cells: 5.6 Million/uL
Platelets: 572 Thousands/uL
White Blood Cells: 19.86 Thousands/uL

Thanks!

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Hi @mmikl633 a great big welcome to our forum.
You seem to have got your medical speak far more than I have.
Yours is a medical question that really needs to be taken up with your nurse, if you have one, or medical team
We are complex beings and or medical teams know you and your whole medical history.
Please do let us know how you get on and I look forward to hearing more about you.
I find it helps me to write down all my fears, questions and practicalities before an appointment.
Really look after yourself

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Hi @mmikl633 and welcome to the forum.
Definitely a question for your medical team. When will they have more information?

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Hello there @mmikl633, welcome to the forum. I’m sorry you needed to find us here but hopefully your doctors will be able to get to the bottom of your concerns, like dear @Erica and @Nichola75 suggest.

I’m wondering if you’ve been diagnosed with Polycythaemia vera (PV) like you suggest? I’m not a doctor but I tested positive for the JAK2 gene mutation and went on to be diagnosed with Polycythaemia vera (PV). I’d say if you tested negative for the JAK2 gene mutation then that’s great news—the other dozens of gene mutations linked to Polycythaemia vera (PV) are far less common than JAK2. Hopefully further testing won’t find mutations linked to any blood cancers.

As for those blood cell counts, they need checking with your specialists as all sorts of non-cancerous reasons can affect our blood cells. Infections can increase our white blood cell counts, for example, when our immune systems kick in.

I note, from having frequent blood tests, that those results you shared of haematocrit, haemoglobin, and red blood cells are in their normal ranges, while the platelets and white blood cells are only slightly raised above normal. Hopefully that’s some comfort while you await feedback from your doctors.

Always best to check your personal test results with specialists who know your medical history as there’s so much inaccurate nonsense out there according to unreliable Dr Google.

Do let us know how you get on @mmikl633.

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I would always say like others have that it’s really important to consult with your healthcare team for proper guidance. I would spend hours googling blood tests normal ranges and convince myself I could interpret them. Untill I was told I was fine when I thought they were really bad and had convinced myself of the worst news or thought they were perfect when in fact it was the other way and I was really unwell and needed a transfusion.

Remember that normal ranges for blood tests can vary significantly between individuals. Your healthcare team has a comprehensive understanding of your medical history and can accurately interpret your results in the context of your specific situation.

Some things are best left to the experts is my view. The waiting is never easy though.Hope they are all good for you when you hear do let us know.

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