Polycythemia Vera and Nutritional Ketosis

@richmpv, welcome to Mayo Clinic Connect. How long have you been living with polycythemia vera? In addition to adjusting your diet, do you find that any other lifestyle adjustments, like moderate exercise, help manage PV and reduce the frequency of phlebotomies?

Look up: Stephen Phinney, MD, PhD – Inflammation, Nutritional Ketosis, and Metabolic Syndrome & Dr. Paul Mason videos.

I wanted to ask how this has been going for you. My father has brain cancer, and he has done the Leto diet and we believe it has saved his life and extended QOL.
I am newly diagnosed with PV, have had it a very long time now but only recently they caught it. I would do anything for the fatigue breathlessness and overall hangover feeling to go away. My bloods were literally .01% away from a phlabotamy at 49.9% in office. I need help today. 🙁

Always check in with your doctor before making any significant changes in your life. My personal experience has been that while I am in full nutritional ketosis, it appears to slow down the blood production process.

When I eat a traditional American diet, I am requiring phlebotomies every 4-6 weeks. When I have stayed in nutritional ketosis for extended periods of time, I have seen the time between phlebotomies extended as far a five months between phlebotomies.

I have experimented with going out of ketosis and seeing how long I could go between phlebotomies and it always settles back into that 4-6 week cycle. Your mileage may vary. If you have Type-1 Diabetes you definitely do not want to do a cryogenic diet. Always consult with your care team and get their opinion on whether this might be a good option for you.

Hi everyone, I was diagnosed with PV in Feb 2020. I started pegasys (initially 45, later 90mcg / week). I still had to get regular phelebotomies --- had maybe 10 of them in 6 months. My HCT kept going above 45 pretty fast. Also raising the Pegasys dose to 90mcg after 4 weeks seemingly had no effect. I started ketogenic diet through the encouragement of my mom, to lose weight. The immediate effect on my blood markers was very surprising. My HCT remained below 45 (42.7 , 42.9) in the last two 3-weeks-apart blood draws. Also my WBC (6.8 to 5.1-5.3) and platelets (550-600 to 490) came down a little bit --- again, for the first time.

Keto worked like magic for me. Also Pegasys could've kicked in after ~4 months, but my bloods were so resistant until I started keto! If anything, the two turned out to be a surprisingly good combination.

I want to mention I eat a fairly healthy ketogenic diet. Lots of veggies. Limited meat (maybe every 2 days), mostly fish. Mediterranean style.

As a bonus content, let me share this paper regarding the effects of ketosis on other cancers. While not a guarantee, it's found to be useful for most cancer types to slow the growth of tumors.
Ketogenic diet in cancer therapy, 2018
10.18632/aging.101382

Hello @starchild, Welcome to Connect, Thank you for sharing such an encouraging story and how Keto has helped you. I see that you wanted to share an article that you found useful. Since new members are not able to post links for a short period of time to prevent advertising and spammers from posting on Connect, please allow me to post the link for you.

Ketogenic diet in cancer therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5842847/

There is another discussion you might find helpful since you mentioned Keto worked magic for you.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Do you mind sharing what you were searching for when you found Connect?

I was searching for "ketogenic diet polycythemia vera". Google gave this conversation as the first Search result.

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

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🤪?

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.