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atir (@atir)

Polycythemia Vera

Blood Cancers & Disorders | Last Active: Aug 6, 2020 | Replies (39)

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@chadknudson

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased — I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high — my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).

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Replies to "I've had PV for three years and do phlebotomies generally about once a month. In discussion..."

Thanks Chad, my threshold is 45 as well. I maintain a very healthy diet as well. I am very fortunate to have a wife that is a RN and yes she stays on my A$$ daily about my intake and exercise. I try to do everything as right as I can but nothing seems to work. There has been a lot of talk with my Drs about starting the Hydroxyurea and I am fine with that. I am just getting a little tired of the wait and see approach as well as all the phlebotomies. I guess I'm also looking for other avenues of therapy. The last thing I want is to throw another clot.