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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Apr 15 2:24pm | Replies (476)
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@cweible19782006

Thanks for your reply. My shortness of breath is a complication from my cardiac microvascular disease which I have read can be a complication of essential thrombocythmia. How high were your platelets when you were first diagnosed if you can remember and did they ever go up and down?

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Replies to "Thanks for your reply. My shortness of breath is a complication from my cardiac microvascular disease..."
bj87 | @bj87 | Mar 9, 2023

As I remember they were in the nine hundreds. I was prescribed hydroxyurea and took it for years seeing the hematologist monthly. No symptoms at all. A year or two ago I became anemic with low red blood count. That’s when it got complicated. Had a bone marrow biopsy and discovered it wasn’t making any red blood cells. The HU kept the platelets down but inhibited red cells. Second opinion and switched to Anagralide but same thing Now I see my hemo every 2 or 3 weeks and get a unit of blood whenever my hematocrit drops to 22 or lower. Lately every 2 or 3 weeks. That takes me up to 24 or 25. I can function quite well at those levels. 27 is as high as it’s ever been. 45 is the low end of the range.
I’m ok with doing it the rest of my life which I expect to be a number of years. A small problem considering I have no pains or other problems.
I hope this helps

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