Hello again @Irene_Louise, I’m so glad to read that your platelets have come down so well. That would be a relief for me. My haematologist told me that our platelet counts can go up and down with these Myeloproliferative neoplasms (MPN), especially after starting treatments, but they usually settle down after a few months.
Interesting that you were diagnosed first with Essential thrombocythemia (ET) but that it might be Polycythaemia vera (PV). Apparently my diagnosis was a close call between Essential thrombocythemia (ET) and Polycythaemia vera (PV) as I had high white blood cells and platelets, but the bone marrow biopsy showed a Polycythaemia vera (PV) diagnosis matched better. It might be the case for you too, like you suspect. I’m guessing the ultrasound is to check if your spleen is enlarged, which I’ve been told can be common with Myeloproliferative neoplasms (MPN) too.
Essential thrombocythemia (ET) can progress to Polycythaemia vera (PV) like you say. I attended a conference last year and the Myeloproliferative neoplasms (MPN) specialist said (checking my notes) that Essential thrombocythemia (ET) can transform into Polycythaemia vera (PV) first before transforming again to Myelofibrosis (MF), but that this is pretty rare. I’d hold hope that you had Polycythaemia vera (PV) all along. I get the impression from what I’ve asked of haematologists that Essential thrombocythemia (ET) and Polycythaemia vera (PV) really can be pretty similar on a cellular level, but very personal to each of us in how they present. It’s great that it’s being checked thoroughly with a BMB, I’d say.
I empathise with your anxiety though. Being diagnosed with one of these is stressful enough, but then for the diagnosis to maybe change is a lot. Maybe try to remind yourself that the diagnosis may change but treatments are likely to stay the same. These Myeloproliferative neoplasms (MPN) are a close-knit family of disorders!
For what it’s worth, to treat Polycythaemia vera (PV) I have daily aspirin to thin my blood, daily hydroxyurea to disrupt the overproduction of blood cells, and occasional phlebotomy when my haematocrit gets above 45 %. It took my body about 3 months to get used to the hydroxyurea and for my fatigue to settle down. I’m sorry to read you’re having tummy troubles, it’s pretty common with hydroxyurea I’ve read. Perhaps your specialists could prescribe something to help your tummy, I know anti-nausea medicines are regularly offered.
Hope this helps, even a little @Irene_Louise! Please know you’re not alone with these diagnoses, nor having a diagnosis change. I’ve read of other forum members whose diagnoses changed or have double-diagnoses of Essential thrombocythemia (ET) and Polycythaemia vera (PV). I think functionally our treatments are pretty similar. But these Myeloproliferative neoplasms (MPN) do tend to keep us on our toes!