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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)

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@chadknudson

I was diagnosed with Polycythemia Vera three years ago. I was experiencing symptoms akin to high blood pressure. Historically, I have never had any issues with high blood pressure. I was having occular migraines -- seeing "floaters" moving through my field of vision, something I was familiar with because of migraines but I was having them without getting an actual migraine. My blood pressure was elevated and when I checked it, I found it to be considerably higher than normal. I went to the doctor and they ran a complete panel and when the results came back they referred me to oncology which I thought was really strange but later on it all made sense. My blood pressure was elevated due to my body simply producing too many red blood cells and in addition to the excess red blood cells I also had elevated platelets. After running tests found JAK-2 mutations, the diagnosis was polycythemia vera. My oncologist has set a threshold of 45% for my hematocrit, so when routine blood labs show a hematocrit higher than that I have a plebotomy. I was on a six week schedule for those initially, and then it moved to about every four weeks. After I went on a diet that put me into nutritional ketosis, I noticed that the time between phlebotomies increased. I have been able to go 8 and 12 weeks between them while in nutritional ketosis. I can't say whether or not there is a direct correlation, but that is what I've observed myself. Others may experience different results.

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Replies to "I was diagnosed with Polycythemia Vera three years ago. I was experiencing symptoms akin to high..."

I was on keto better than 1 yr. Lost intended weight pcp extremely happy with labs every visit. Then high HCT was found in labs. Referred to Oncologist
and labs prove Jak2 mutation. Went off keto regained my weight.
Trying to decide if Keto may have anything to do with the cause of the mutation.