Polycythemia Vera and Nutritional Ketosis

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...

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.

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

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.

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.

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.

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

I am on keto for almost 2years. I don't drink that much water just lots of ice coffee and tea. I don't believe dehydration causes pv, pv is caused by the mutation of bone marrow not lack of water and keto does not draw water from your system it makes your body use the stored fat.

I was diagnosed w Polycythemia Vera in 2020 when routine lab work showed HCT of 61.3. At that time I was also taking HCTZ for BP.
I had a spleen and liver Ultra sound which showed minor enlargement of spleen, normal liver. My blood work showed the Jak 2 mutation. I've never had bone marrow biopsy. I had several Phlebotomy treatments to lower my HCT which worked well. I started reading up and found dehydration can cause Polycythemia alone.
So I requested to change BP meds to go off HCTZ. I was able to stop the Phlebotomy for a few months but my Dr never lets me get much higher than HCT of 43 or 44. So when my HCT has reached those numbers I've had the phlebotomies. Also had a follow up spleen ultrasound showing very minimal increase.
Here is my concern I'd say for 1 year and a half prior to my PV diagnosis I very strictly followed the Keto diet. It worked for me. Went from 150 lbs to 120 lbs.
When I was diagnosed I went off the Keto diet returning to my original weight of 150.
2 months ago unhappy w my current weight and not as horrified as I was about PV I have returned to Keto diet and continuing to read. My latest knowledge I have obtained that I was unaware 1st time on Keto is that keto FORCES water out of you and that's the main weight loss achieved and then eventually fat.
I've also read if I'm understanding this correctly there are people with Jak 2 mutations without MPN.
So my question: If dehydration causes elevated HCT. Could the Keto diet have raised my HCT to 61.3. My last HCT was done in June 41.8. Prior to diet.
Am I crazy🤪?

Have you ever used Google Scholar (https://scholar.google.com/)? It's great for locating the most recent medical research information. Here's the links sorted by 2021 for "ketogenic diet polycythemia vera" (without the quotes).
https://scholar.google.com/scholar?as_ylo=2021&q=ketogenic+diet+polycythemia+vera&hl=en&as_sdt=0,24