Secondary Erythrocytosis

[Kwebb]

I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia Vera. I’m seeing the haemotologist in April but I’m confused. Anybody clear this up for me ? Obviously I will ask . I had a blood clot and thrombophlebitis last week and is ongoing. Any advice ?

[cwayman11]

Hi..I was also initially diagnosed with PV but am triple negative (jak2 etc) and so now classified as ET which as I understand it just means no known cause. Your haem should hopefully be able to explain your situation when you see them. Good luck.

[Hidden in reply to cwayman11]

ET does not mean “no known cause”. It means that your bone marrow is producing too many platelets. Polycythaemia vera (PV) is pronounced pol-ee-sigh-thee-me-a vee-rah. Poly means many and cythaemia relates to blood cells. It is also sometimes called erythrocytosis, which means too many red blood cells.

[cwayman11 in reply to Hidden]

Thanks and sorry. Was thinking erythrocytosis not ET.

[piggie50]

Hi,

If you watch the video that Simon 96 posted a day ago, titled MPN101 video. this would help your understanding as the Dr talks about triple neg results and that no one with triple neg has PV. I watched it last night and found it really informative.

Best wishes

Judy

[Mazcd Partner MPNVoice]

Hello, I asked the medical team for you their advice is: write down some questions.. What is my diagnosis? How can I get a clear diagnosis? What is the relationship between this diagnosis and my blood clots. Hope this helps. Best wishes, Maz

[Kwebb in reply to Mazcd]

Thanks. I’ve been today and the haemotologist says that I’ve not had thrombophlebitis at all. The reaction in veins was due to extremely high hemoglobin and hemocrit. All very confusing.