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atir
@atir

Posts: 3
Joined: Nov 30, 2018

Polycythemia Vera

Posted by @atir, Fri, Nov 30 8:20am

Have been diagnosed with polycythemia Vera recently, Any feed back

REPLY

Hello @atir, welcome to Connect. I'd like to invite @chadknudson, @mwear, and @juiceinjc to this discussion as they have all mentioned having polycythemia vera here on Connect. @atir, if you don't mind me asking, what sort of feedback are you looking for from other members? Were you recently diagnosed?

@JustinMcClanahan

Hello @atir, welcome to Connect. I'd like to invite @chadknudson, @mwear, and @juiceinjc to this discussion as they have all mentioned having polycythemia vera here on Connect. @atir, if you don't mind me asking, what sort of feedback are you looking for from other members? Were you recently diagnosed?

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I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.

@atir

I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.

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@atir, while we wait for some members to join us, you may find @chadknudson's post on polycythemia vera and nutritional ketosis https://connect.mayoclinic.org/discussion/polycythemia-vera-and-nutritional-ketosis/ interesting as he talks about regular phlebotomies as well.

@atir

I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.

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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.

Because of polycythemia had a heart attack,because of sluggish blood.but after an attack was diognised.I am a vegetarian so Keto diet might not be suitable.Did u have a weight problem?

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