Polycythemia Vera and Nutritional Ketosis

Posted by chadknudson @chadknudson, Mar 26, 2018

I was diagnosed with Polycythemia Vera several years ago and my treatment regiment has been regular phlebotomies (generally about every four weeks.) I needed to drop some weight so I started a diet plan that would put me in nutritional ketosis. I do not know if the two are related, but I was able to go five months without a phlebotomy. It may just be a coincidence, where I might be stabilizing after the first few years, but I just wanted to pass this along in case it sparked any thoughts from others.

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My doc is on board by the way I forgot to mention that since I have started down this road my Doctor had been able to take me off my blood pressure meds! He likes the drop in weight and blood pressure. He is still after me about my smoking. I smoke a pack in two or three days. It's an improvement but I need to drop them all together. And no longer need to use my sleep apnea machine. I forgot about that pain I no longer need. I am the poster child for the Paleo diet. These changes happened slowly so I forget sometimes how much my life has changed.

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Starting this diet has made me aware of what all is put in our food. And what we are told is healthy. It's no wonder any other diet I tried failed. They put sugar on french fries in yogurt and tell you it's good for you. Reading lables has opened my eyes. I am eating things I've been told all my life would make me fat or is unhealthy. I pretty sure I have been lied to all my life. I miss bread but think that was one of the biggest evils along with added sugar. And part of the rules to this diet is if you can not pronounce it you can't eat it. No gmo's either. Hunt or gather except been which includes peanuts miss my peanut butter. But all the benefits it is hard for me to want to change my new life style.

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That was supposed to be beans. Spell check

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I am suspecting I'll be soon officially diagnosed with PV. I'm JAK2 and blood numbers trending up over the past 18 months. Dr ordering another set of labs today. I am already on a ketogenic diet and do intermittent fasting. Occasionally 24 hours but almost always a 16-18 hour fast daily. Originally began doing that to help my brain as I am also APOE4 positive (high risk for Alzheimer's). Any ideas if fasting and autophagy are beneficial to PV?

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@thlas1971

I am suspecting I'll be soon officially diagnosed with PV. I'm JAK2 and blood numbers trending up over the past 18 months. Dr ordering another set of labs today. I am already on a ketogenic diet and do intermittent fasting. Occasionally 24 hours but almost always a 16-18 hour fast daily. Originally began doing that to help my brain as I am also APOE4 positive (high risk for Alzheimer's). Any ideas if fasting and autophagy are beneficial to PV?

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Hello @thlas1971. While we wait for others to share their experience with the ketogenic diet and their PV, would you mind sharing a bit more about your experiences with the diet overall? Has it been helping you in your everyday health? If you fast 16-18 hours a day, do you just eat one meal?

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@juiceinjc

Starting this diet has made me aware of what all is put in our food. And what we are told is healthy. It's no wonder any other diet I tried failed. They put sugar on french fries in yogurt and tell you it's good for you. Reading lables has opened my eyes. I am eating things I've been told all my life would make me fat or is unhealthy. I pretty sure I have been lied to all my life. I miss bread but think that was one of the biggest evils along with added sugar. And part of the rules to this diet is if you can not pronounce it you can't eat it. No gmo's either. Hunt or gather except been which includes peanuts miss my peanut butter. But all the benefits it is hard for me to want to change my new life style.

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Isn't is amazing what they tell us is healthy food....and in reality it is not.

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@eldho

Could you please advise what is the Nutritional Ketosis diet, please share details to follow.

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Research Ketogenic way of eating. Studies have been done at Duke University.

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@eldho

Hi ...
I am Eldho

After checking CBC test in April/2018 my HB level (21.3) is increasing and the advice from doctor i have removed 6 unit blood with in 3 month, now HB is 16.2, i am 36 years old and 64kg (69Kg in April). I need your help and advice, which type of food i can had to control the HB level (available fresh olive & olive oils & most of vegs. & fruits and white rise and all type of Arabic & Chinese food), basically i am Indian & live in Jordan from the last 10 years.

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Those that have found some help with Ketogenic eating, have eliminated any sugar, (included fruit except berries), starch (that would be rice, etc.), any grains, and all processed foods. My husbands has gone from phlebotomies twice a week, to every 8 weeks now.

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I first started eating Keto before I was diagnosed with PV - and it got rid of my diabetes. BUT - I had to walk 4 times a week for 30 mins before that really kicked in.
I am really interested in fasting and how that affects numbers. (Certainly this is easier to do if one is already fat adapted as in Keto - body just shifts from using outside fat sources for energy to those fat sources on board). Anyway, fasting for less than 3 days does not seem to change numbers at all - but more than 3 days brings them back into line every time.
- has anyone else found that fasting helps? If so - fasting for how long
- secondly, how often should one fast to keep numbers in line?

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There seem to be people here that think a keto diet may be helpful, not sure. But, I have been told what not to eat too much of: these include iron rich foods like spinach, beef, etc. I’ve reduced my intake of beef, but I still have a burger once in a while. The more iron I eat, the more phlebotomies I’ll have to have so I try to limit that. When my hematocrit goes above 45, my dr wants me to have a phlebotomy. Good luck everyone.

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