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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@mcvorbs

I agree with you. We must self-manage. It has been interesting to find natural ways to live with the PV. I, too, extremely changed my diet and it is simple to manage. (I am a widow so I can eat what I come up with!) A wonderful surprise over the past four months that each blood work shows lower numbers…..no treatment was necessary. Platelets have been the problem for me. There is lots of info to read about fresh goods that lower platelets. However, the past four months numbers stayed level and in two weeks I am looking forward to another drop in those numbers. Researching food and exercise is also interesting. I do not take any medication. Also, Prayer is powerful and gives me strength and a positive attitude to move forward and enjoy my daily activities and encounters.
Thank you for sharing your dietary information, as I thought I was the only one who cared about that. God bless you all! M

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Thanks! Would you mind sharing your journey to reducing platelets a bit? What fresh goods did you find helpful to lower platelets?

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I agree with you. We must self-manage. It has been interesting to find natural ways to live with the PV. I, too, extremely changed my diet and it is simple to manage. (I am a widow so I can eat what I come up with!) A wonderful surprise over the past four months that each blood work shows lower numbers…..no treatment was necessary. Platelets have been the problem for me. There is lots of info to read about fresh goods that lower platelets. However, the past four months numbers stayed level and in two weeks I am looking forward to another drop in those numbers. Researching food and exercise is also interesting. I do not take any medication. Also, Prayer is powerful and gives me strength and a positive attitude to move forward and enjoy my daily activities and encounters.
Thank you for sharing your dietary information, as I thought I was the only one who cared about that. God bless you all! M

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Recently, I made a series of changes to my lifestyle to avoid monthly venesection. It seems that the hard work paid off! First, I skipped meat, rice, flour totally. However, my diet was not entirely a keto diet, because I ate Banana, dates, mangoes a lot. For breakfast, I ate two boiled egg (without yolk), a muffin (made of almond flour, egg, banana, very little maple syrup) and a banana. For lunch, I ate fish with a veggie fry such as Okra, capsicum, green bean, Aubergine etc. My breakfast was at 7.30 am and I finished my lunch by 3pm. Between breakfast and lunch, I ate lots of fruits (fruit salad) such as Mango, Avocado, Kiwi, Pear, Apple, pickled Artichoke, green Olive etc. I did not eat anything after 3pm, meaning I have been on an intermittent fasting for some time now. At the beginning, it was very tough to be on an intermittent fasting, now my body seems to be adjusted with this plan and I do not feel hungry anymore after 3pm. In addition, I have a cast iron pan which I stopped using and, I tried to eat organic as much as I could.

The idea behind my diet was to become anaemic as my body itself produces a lot of Iron already. Now, I often asked myself as to why rice or bread deteriorate my blood condition? Then I read the label of snacks bought from store carefully and I found that most of them are made of fortified flour. You may know that the fortified flours are processed and additional nutrition such as iron are added to it. Rice, I bought, mostly enriched and enriched rice (again additional nutrition such as iron are added to it). Even when I tried to buy organic flour it is also fortified ! Therefore, I completely stopped eating any food made of rice and flour. Egg yolk also contains a lot of nutrition such as iron which I do not need. As I totally avoided rice and flour, I often felt dizzy and headache and to avoid that I regularly ate Banana, Mango and occationally dates. It means I have taken carbs from whole fruits to fulfil the required intake of carbs in my body. I also, rarely eat Potato, as the potato has no chance to be fortified. In case of choosing fruits and vegetables, I checked their nutrition value as I do not need any iron. For example, I was enjoying plant-based sausage made of Soybean. When checked its nutrition value, I regretted eating sausages made of soybean and stopped eating that.

My monthly venesection has been cancelled twice and there is no planned venesection for me now. I got an appointment at the beginning of May and I will have a blood test before that. My consultant said that whatever I was doing I could continue that. I hope it helps you understand my diet. Please consult it with your doctor before following my diet, thanks.

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Thanks, Colleen! I was diagnosed with PV in August 2019. Being an Asian, I grew up eating a lot of rice and Parata. I mean, my meals were full of carbs. Everything changed when I embarked on a full-time study in 2021 and was too busy to cook fresh foods such as vegetables. I was hardly able to cook rice or curry during this time. Therefore, I relied on ready-to-eat food from grocery stores. However, I had concerns that I was not eating enough vegetables, so I chose ready-to-eat Quiche (made of Spinach, Feta and Pea), Croquettes (made of Butternut Squash and Spinach), grilled chicken and fish, egg, Banana, Lentils+Green bean, cucumber, Spinach bites. These are easy to find at the grocery stores. When my study load reduced, I started cooking and eating a lot of rice, bread, and curry, including red meat(Though it takes longer to cook). My venesection requirement increased. I am still unaware of what happened to that year when I did not require any venesection. Recently, I came across this group and read about the impact of the Keto diet on PV; then, I figured out that I consumed fewer carbs when I did not require a venesection for a year. To be honest, I did not do anything with a Keto plan that time; I just tried picking something healthy, like fish and veg, which I enjoyed eating. Recently, I started consuming fewer carbs, as I did in 2021. I will see what happens now.

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@chitra

I have seen a change in my venesection requirements. Sometimes, between 2021 and 2023, I did not require venesection for about a year, and suddenly I needed venesection quite frequently. Now I figured out that I was on a low-carb diet when I did not require venesection for about a year. Thanks for sharing your experience.

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Welcome, @chitra. How long have you been living with polycythemia vera? Did you find switching to low carbs relatively easy?

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@casevin7

Wow! This is very interesting information. I have been eating more of an Atkins style diet since mid summer. My hematocrit has stabilized a bit, although my next labs are this week so it might be too early to celebrate. But I feel so much better eliminating carbs. My energy level has returned and I actually want to do more than just sit on the couch and watch tv. And the upside is that I am slowly losing weight which is wonderful. Thanks for the posting.

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That is outstanding. As of yesterday, I have been on carnivore for 19 months. My phlebotomies have been reduced to every 6 months. My bloodwork is normal, A1C, normal, hematocrit was in the normal range, cholesterol is up (a good thing as long as you don't have a bunch of sugar in your bloodstream). Total cholesterol is a hair over 300. However, cholesterol protects from strokes, makes vitamin D, CoQ10, testosterone (wonder why men on statins need the little blue pill?), estrogen, and so forth. Among the side effects, you have more energy, and less brain fog, since your brain is made mostly of fat and cholesterol.

It appears, from my research, that this entire fiasco is being caused by big pharma wanting everyone on one or more prescriptions, then selling us other 'scripts to manage the side effects of the first set...Lather, rinse, repeat. And the food industry makes several orders of magnitude profit on processed, carb-laden, sugar loaded foods, especially since sugar is 30x more addictive than cocaine. It is also the reason that Type 2 diabetes is such an epidemic.

Oh, and if you want to take weight loss to the next level, try fasting 1-2 days a week. I have been for the past 3 weeks, and have dropped an additional 10 lbs.

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@storm16

Hi,

I just found this forum, and wanted to tell my story. I was diagnosed with PV in 2015, and have been going through phlebotomies ever since. I started with weeklies, and half the time or more, my blood was so thick that they could not even complete the treatment. Into 2016, treatments stabilized into every 2-4 weeks. I tried various dietary things to make the PV better or reduce the frequency, including ridiculous amounts (4000mg/day) of fish oil, and kimchi (fermented vegetables are very good for you), and I was getting a 4-6 weeks out of it.

May 1, 2022, I started a carnivore diet, minimizing carbs, and basically eating all meat and meat products. It was the recommendation of my GP doctor because I was getting close to becoming pre-diabetic. I was able to lose 45 lbs, get off my BP meds (and my BP is lower than it was on the 2 meds and eating a standard American, carb-heavy diet), stopped taking my statins, and am in much better health. My PV seems to be reduced. I actually had phlebotomy on 4/27/23, and my hematocrit was 51. However, the experience was totally different, because instead of the nurses laboring and trying to force blood out of me, it flowed normally, and they were done in 25 minutes rather than the hour plus phlebotomies used to take.

I think this diet has reduced the effects, if not reversed my PV. I have been searching online for verification of this, however, aside from forums like this, I have only found sites that say things like "for PV, you should eat a low fat, plant-based diet, and any meats you eat should be lean and mostly protein." Which, I'm here to tell you, is not my experience.

Jump to this post

Wow! This is very interesting information. I have been eating more of an Atkins style diet since mid summer. My hematocrit has stabilized a bit, although my next labs are this week so it might be too early to celebrate. But I feel so much better eliminating carbs. My energy level has returned and I actually want to do more than just sit on the couch and watch tv. And the upside is that I am slowly losing weight which is wonderful. Thanks for the posting.

REPLY

I have seen a change in my venesection requirements. Sometimes, between 2021 and 2023, I did not require venesection for about a year, and suddenly I needed venesection quite frequently. Now I figured out that I was on a low-carb diet when I did not require venesection for about a year. Thanks for sharing your experience.

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@sunnygal

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

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Have you seen Tuft's University's "food compass"??? They actually claim that a bowl of cinnamon toast crunch is better for you than an egg cooked in butter. Because they have a foundation that companies can become members of. The higher level you become, the higher your foods appear in the rankings. So platinum members like Pepsico, General Mills, Kelloggs, etc, get their foods up in the ranks. Basically, what is considered "healthy" is determined by these huge companies' profit margin...That and big pharma wanting to sell us pills. Going on keto/carnivore has really opened my eyes to the gaslighting they are doing to us...

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Hi,

I just found this forum, and wanted to tell my story. I was diagnosed with PV in 2015, and have been going through phlebotomies ever since. I started with weeklies, and half the time or more, my blood was so thick that they could not even complete the treatment. Into 2016, treatments stabilized into every 2-4 weeks. I tried various dietary things to make the PV better or reduce the frequency, including ridiculous amounts (4000mg/day) of fish oil, and kimchi (fermented vegetables are very good for you), and I was getting a 4-6 weeks out of it.

May 1, 2022, I started a carnivore diet, minimizing carbs, and basically eating all meat and meat products. It was the recommendation of my GP doctor because I was getting close to becoming pre-diabetic. I was able to lose 45 lbs, get off my BP meds (and my BP is lower than it was on the 2 meds and eating a standard American, carb-heavy diet), stopped taking my statins, and am in much better health. My PV seems to be reduced. I actually had phlebotomy on 4/27/23, and my hematocrit was 51. However, the experience was totally different, because instead of the nurses laboring and trying to force blood out of me, it flowed normally, and they were done in 25 minutes rather than the hour plus phlebotomies used to take.

I think this diet has reduced the effects, if not reversed my PV. I have been searching online for verification of this, however, aside from forums like this, I have only found sites that say things like "for PV, you should eat a low fat, plant-based diet, and any meats you eat should be lean and mostly protein." Which, I'm here to tell you, is not my experience.

REPLY
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