Does anyone have polycythemia, or polycythemia Vera? I have a few questions

[hamsterballs]

Does anyone know about this condition? I have some questions but google is scaring me.

My blood tests say high haemoglobin and high haematrcrit. But normal red blood cell count.

I also have headaches and pins and needles/ tingling.

Is this indicative of PV?

I have blood tests often and sometimes the results are in the normal range. Can it fluctuate If you have this condition?

My mum had this and I am currently being tested too as my haemoglobin is high. I have headaches and also can be quite flushed in my face and neck. I also suffer in the heat a lot and get dizziness.
My mum’s symptoms started off with her being itchy and she had a burning tongue. It was managed for 20 years with medication and frequent blood tests at the haematology and her meds were increased or decreased depending on results. The medication is like an oral chemo and she had some side effects with it. The thing that terrifies me is that sometimes it can progress and my mums progressed to
AML. This can happen with PV but it doesn’t happen to everyone, what I believe is that it’s rare. Once they realised this she was literally terminally ill and passed within 5 weeks. This was due to the treatment for AML being brutal and they knew my mum would not be strong enough for it and also the mutation she had shows that treatment rarely works.

Thank you very much for all this information. Sorry for what your mum went through, and sorry you are also going through the stress of being tested.

I am just wondering if u had untreated Polycythemia, would your haemoglobin always be high with every blood test? Would it progress and get higher? Or fluctuate to normal and back up to high?

Thank you. From what I understand your blood results would remain high at least. They could also increase. The only thing that lowered my mum’s was medication. I may be wrong and don’t have any medical knowledge, just going off the experience with mum.
Mine has been high but has also reduced sometimes too. I think some of it is lifestyle that makes it fluctuate. Are you a smoker? That can cause the raise I was told.
I hope you get this sorted soon and hope it isn’t PV, it is a stressful time waiting on diagnosis. There us a group on facebook that may be able to help more, not sure of the name but if you search for polycythemia you should find it.

Thank you so much. I am not a smoker, and am generally healthy. Although I have haemochromatosis which is a condition that affects the blood. So could be to do with that I suppose.

I wish you the best. Thank you for the Helpful information