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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@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.

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

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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.

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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.

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@jackiecarey

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

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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.

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

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@lindaw123

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🤪?

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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.

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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🤪?

REPLY
@starchild

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

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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

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@johnbishop

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?

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

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@starchild

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

Jump to this post

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?

REPLY
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