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chadknudson
@chadknudson

Posts: 9
Joined: Mar 26, 2018

Polycythemia Vera and Nutritional Ketosis

Posted by @chadknudson, Mon, Mar 26 7:49am

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.

REPLY

Hello @chadknudson, and welcome to Connect. If you don't mind me asking, did you consult with your provider about changing your diet? I am not an expert, but I have heard mixed reviews about a keto diet. That is great news that you were able to go five months without a phlebotomy, whether it was your diet or your disease stabalizing. While we wait for others to join the conversation, if you are comfortable, how are you feeling with diagnosis overall?

I definitely consulted with my oncologist before embarking on this plan. She felt that it would have a strong positive impact on my general overall health that it was worth trying provided that I agree to regular monitoring of my blood throughout the process.

I certainly don't let it define who I am, rather it's just something that I have. There are many worse things by which one could be afflicted, for sure!

The first phlebotomy was rough, multiple techs poking multiple needles in both of my arms and they just couldn't get any blood to flow. I had to come back in a few days later and had to have it suctioned out with syringes. After that though they were much better.

@chadknudson

I definitely consulted with my oncologist before embarking on this plan. She felt that it would have a strong positive impact on my general overall health that it was worth trying provided that I agree to regular monitoring of my blood throughout the process.

I certainly don't let it define who I am, rather it's just something that I have. There are many worse things by which one could be afflicted, for sure!

The first phlebotomy was rough, multiple techs poking multiple needles in both of my arms and they just couldn't get any blood to flow. I had to come back in a few days later and had to have it suctioned out with syringes. After that though they were much better.

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The phlebotomy does sound rough. I was born with a genetic bleeding disorder called Hemophilia. As a result, I have to give myself injections of clotting factor in my veins three times a week, so I am familiar with needles, veins, and the difficulties that can come with it!

I'd like to invite some members from a conversation that took place some time ago, @bg207, @rgreen1, and @sdahl.

@chadknudson, it is also great to hear that your oncologist is in the loop and on board with your diet change, I'm curious to see what she says about the results you are experiencing!

Hello! I am a 50 year old male and have polycythemia vera. I’m considering trying a ketogenic diet and hoping it helps with my disorder. I’m wondering if you were taking Hydrea to treat your condition? If so, were you able to stop taking it?

@mwear

Hello! I am a 50 year old male and have polycythemia vera. I’m considering trying a ketogenic diet and hoping it helps with my disorder. I’m wondering if you were taking Hydrea to treat your condition? If so, were you able to stop taking it?

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I am not taking Hydrea — at this time I'm just doing regular phlebotomies when my hematocrit reaches a certain target.

Hi …
I am Eldho

After checking CBC test in April/2018 my HB level (21.3) is increasing and the advice from doctor i have removed 6 unit blood with in 3 month, now HB is 16.2, i am 36 years old and 64kg (69Kg in April). I need your help and advice, which type of food i can had to control the HB level (available fresh olive & olive oils & most of vegs. & fruits and white rise and all type of Arabic & Chinese food), basically i am Indian & live in Jordan from the last 10 years.

Could you please advise what is the Nutritional Ketosis diet, please share details to follow.

Awaiting feedback form anybody….Which food i can had to reduce HB level with phlebotomy

I was diagnosed about a year and a half ago with PV. Have had phlebotomy performed every two weeks. I had started on the Paleo diet and have gone into a state of ketosis resulting in a loss of 80 lbs and general inprovments in over all health. Recently my red blood cell count has been low enough to for go the treatment!!! I noticed my numbers are better after I consume a whole pineapple the day before. Only twice but not getting stuck is a great day. I don't know if there is a correlation between the eating of pineapple and my numbers but it sure has me thinking. I will probably be eating pineapple in a fortnight. Was wondering if any body else has experienced any thing like this my numbers usually run in the 60s but my doc has my drained if I am over 55. Today I was at 41 the lowest it has been in a since I started treatment. The Paleo diet is hard to give up so much but I eat all I want. And I eat alot and the weight keeps dropping.

@juiceinjc

I was diagnosed about a year and a half ago with PV. Have had phlebotomy performed every two weeks. I had started on the Paleo diet and have gone into a state of ketosis resulting in a loss of 80 lbs and general inprovments in over all health. Recently my red blood cell count has been low enough to for go the treatment!!! I noticed my numbers are better after I consume a whole pineapple the day before. Only twice but not getting stuck is a great day. I don't know if there is a correlation between the eating of pineapple and my numbers but it sure has me thinking. I will probably be eating pineapple in a fortnight. Was wondering if any body else has experienced any thing like this my numbers usually run in the 60s but my doc has my drained if I am over 55. Today I was at 41 the lowest it has been in a since I started treatment. The Paleo diet is hard to give up so much but I eat all I want. And I eat alot and the weight keeps dropping.

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Thanks for sharing your results with us. I don't know if there is a correlation between nutritional ketosis and slower generation of the red blood cells, but I do find it interesting that more than one of us has experienced this.

@eldho

Could you please advise what is the Nutritional Ketosis diet, please share details to follow.

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You should consult with your doctor before going down this path for sure. In a nutshell, a diet that is very low in sugars and carbohydrates will cause you to go into a state of nutritional ketosis. I strive to consume less than a teaspoon worth of sugar in the morning before my midday meal (4g of carbohydrate is roughly equivalent to a teaspoon of sugar) and then throughout the rest of the day I just try to minimize my carbohydrate and sugar intake. I would strongly encourage you to seek out the advice of a qualified medical professional like a bariatric specialist. Nutritional ketosis diets are not necessarily safe for everyone so definitely consult your doctor first.

My doc is on board by the way I forgot to mention that since I have started down this road my Doctor had been able to take me off my blood pressure meds! He likes the drop in weight and blood pressure. He is still after me about my smoking. I smoke a pack in two or three days. It's an improvement but I need to drop them all together. And no longer need to use my sleep apnea machine. I forgot about that pain I no longer need. I am the poster child for the Paleo diet. These changes happened slowly so I forget sometimes how much my life has changed.

Starting this diet has made me aware of what all is put in our food. And what we are told is healthy. It's no wonder any other diet I tried failed. They put sugar on french fries in yogurt and tell you it's good for you. Reading lables has opened my eyes. I am eating things I've been told all my life would make me fat or is unhealthy. I pretty sure I have been lied to all my life. I miss bread but think that was one of the biggest evils along with added sugar. And part of the rules to this diet is if you can not pronounce it you can't eat it. No gmo's either. Hunt or gather except been which includes peanuts miss my peanut butter. But all the benefits it is hard for me to want to change my new life style.

That was supposed to be beans. Spell check

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