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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@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?

Jump to this post

Don't know..DOES anyone know if drinking large amounts of water will thin the blood. After all 60% of blood is plasma.

REPLY
@jackiecarey

Don't know..DOES anyone know if drinking large amounts of water will thin the blood. After all 60% of blood is plasma.

Jump to this post

I've been told to drink at least 64oz water daily more is even better. I also take 1 325mg aspirin daily with food to thin blood. I take supplements such as vitamin E, garlic, turmeric, they also thin blood and cayenne pepper will help prevent blood clots. Good luck and prayers to you.

REPLY

Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional more more importantly I believe in this old guy called Socrates who said "I don't know anything, question, question question! It's in y nature, too. I noticed that my hemoglobin, hematocrit and platelets were slowly increasing over time..I would mention it to my medical Internist who would say its dehydration several times. Then in December I had a total black out in my right eye. I was able stay calm and timed it, it lasted about a minute before it completely resolved..I knew that is a TIA or mini stoke so I went to the ED..They did everything known to man looking for the root cause..Nothing was found. The neurologist put me on an aspirin...When on got home I went on MY Chart and notice that now my H &H and Platelets were now over normal. I said enough and made an appointment with a hematologist. On my first visit the hematologist walked into the room, sat down and sat you don't have leukemia and then said you have polycythemia vera..I was utterly shocked. The blood work didn't support leukemia and I had never heard of Polycyceia Vera..Even with my background. Apparently PV is so rare many Doctors have never heard of it. It was a surreal day...Shock, fear...They drew my blood then to identify the JK2 gene mutation, it came back positive as expected. I'm in a holding pattern but not for long I suspect..I'm getting a second opinion but not sure why probably not to wish I had later on....The Hematologist is a PV specialist at MDAnderson and I see her in two weeks. I'm 75 and wonder if anyone else has been diagnosed with PV at this age and what their experience
has been? I'm very open and willing to share or support in any way I can.

REPLY

my hematologist said a healthy diet, exercise and drink water. When I see him I'm going to ask about ketosis and the paleo diet..I wonder if you 60 pound weight loss has anything to do with your results.

REPLY
@jackiecarey

Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional more more importantly I believe in this old guy called Socrates who said "I don't know anything, question, question question! It's in y nature, too. I noticed that my hemoglobin, hematocrit and platelets were slowly increasing over time..I would mention it to my medical Internist who would say its dehydration several times. Then in December I had a total black out in my right eye. I was able stay calm and timed it, it lasted about a minute before it completely resolved..I knew that is a TIA or mini stoke so I went to the ED..They did everything known to man looking for the root cause..Nothing was found. The neurologist put me on an aspirin...When on got home I went on MY Chart and notice that now my H &H and Platelets were now over normal. I said enough and made an appointment with a hematologist. On my first visit the hematologist walked into the room, sat down and sat you don't have leukemia and then said you have polycythemia vera..I was utterly shocked. The blood work didn't support leukemia and I had never heard of Polycyceia Vera..Even with my background. Apparently PV is so rare many Doctors have never heard of it. It was a surreal day...Shock, fear...They drew my blood then to identify the JK2 gene mutation, it came back positive as expected. I'm in a holding pattern but not for long I suspect..I'm getting a second opinion but not sure why probably not to wish I had later on....The Hematologist is a PV specialist at MDAnderson and I see her in two weeks. I'm 75 and wonder if anyone else has been diagnosed with PV at this age and what their experience
has been? I'm very open and willing to share or support in any way I can.

Jump to this post

What did you recently learn from your hematologist regarding diet and exercise?

REPLY

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
@sunnygal

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

Jump to this post

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...

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.

REPLY
@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
@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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.