Polycythemia

[Gamerboy88]

Hi all 👋

My story is still relatively new and I haven't got much info really. I went to my doctors back in May as I didn't feel quite right with myself and also my bowel movements, the doctor diagnosed me with having IBS but sent me for a blood test to rule out anything serious. The first blood test results came back with having a high red blood cell count, so they sent me for another one which came back the same and then they sent me for another one and my doctor had spoken to the haematology department before ringing me and they said that they think it's polycythemia so they booked me in for another blood test which I had on Friday to test the JAK2 gene mutation.

I also had an ultrasound scan on my abdomen which came back as having a fatty liver. Is this a sign of polycythemia?

This year I have been really really tired, my legs are always painful, my toes hurt, i have been getting headaches most days and I keep getting back ache.

Any help and advice would be much appreciated where this is all new to me.

Many thanks

[ExtraFox]

Hi, sorry to hear you have been feeling so unwell. I was very recently in the place you're in now and can relate to all of the symptoms you're describing, minus the liver issue ( but I am still waiting for a scan to check liver/spleen). I was diagnosed with PV Jak2 in August after a similar back-and-forth experience to yours re blood tests.

It's a horrible feeling being in limbo, lots of questions and worries and no answers (tip - whatever you read on t'internet about PV, take with a pinch of salt, some of it may be out of date). But you've come this far and it sounds like a diagnosis is in the pipeline. Whatever that turns out to be, you've made an excellent decision to join the MPN Voice forum. I have learned a lot and been quite reassured by reading the posts on here.

All the best, I hope you get some answers very soon, and keep us posted!

[EPguy]

Do you have your results for red blood cells (RBC)? HCT, hemoglobin? At high and sustained and levels, PV is a condition they look to. I had moderately high RBCs at Dx but strangely my RBCs, and white blood cells (WBC), normalized before starting treatment. Platelets, (PLT) however did not.

I had loose stools for months till I got my bloods controlled. But I think long covid may also be a or the reason for that since there was a correlation.

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I've not heard about fatty liver associated with MPNs. Other members may have some experience here.

This report provides possible associations to the condition (non-alcoholic version). It seems usually metabolic related. Of course your Dr should have the best guidance.

mayoclinic.org/diseases-con...

-Overweight or obesity

-Insulin resistance, in which your cells don't take up sugar in response to the hormone insulin

-High blood sugar (hyperglycemia), indicating prediabetes or type 2 diabetes

-High levels of fats, particularly triglycerides, in the blood

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There is a liver condition related to PV:

"Splanchnic Vein Thrombosis (SVT) is strongly associated with underlying JAK2 V617F positive myeloproliferative neoplasms (MPN)."

Splanchnic is related to the abdominal organs. In the liver it's hepatic venous system (Budd-Chiari Syndrome (BCS) But it seems you have no Dx of this condition, which is nice to know.

thrombosisjournal.biomedcen...

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It's not uncommon to have enlarged spleen with PV but you did not which is good to know.

My ultra sounds and MRI found various surprises on some organs, but none are MPN related nor concern to Drs.

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Let us know your Jak2 result, PV near always has this mutation so that will be more clear info.

[Gamerboy88 in reply to EPguy]

Thank you for your reply. To your questions I have not got a clue because at the time of the phone call from my doctors I was in absolute shock that i had anything wrong with my blood. I used to have a b12 deficiency but the injections stopped in 2020 when the pandemic hit. That is when my headaches started and i just thought it was my eyes detriating but i found out this year that my eyes were unchanged. That is when the legs started to ache and started getting very tired. I went to the drs for another problem and sent me for the scan on my abdomen and the blood test and that was when they found out about my RBC being high

[hunter5582]

Hello and welcome. Glad you found your way here.

What you are describing is consistent with polycythemia but that is not definitive. Polycythemia can either be primary (Polycythemia Vera) or secondary (due to another condition). You will need to complete the diagnostic process to figure out what is going on.

Hope you get answers soon.