If indeed polycythemia vera then I too have noticed shortness of breath esp walking “up hill” and not even that steep! But I slow down and my breathing adjusts. Sometimes it happens climbing stairs. And yes, I was diagnosed with PV back in May
I too have shortness of breath which is apparently attributable to low hemoglobin (I have Waldenstrom's Macroglobulinemia). I received some relief from increasing the iron in my diet.
As a vegan, that's a little tricky; however, here's a good list of iron-rich plant foods: https://www.healthline.com/nutrition/iron-rich-plant-foods#TOC_TITLE_HDR_5
Hope this is helpful.
I also have PV and shortness of breath but you are right, if you stop for a moment it does adjust. I was told not to have iron rich foods as it feeds the growth of red blood cells.I also am noticing hair loss and Dr says it’s not from the phlebotomy’s. Any suggestions on this. I have had PV since 2019
I also have PV and shortness of breath but you are right, if you stop for a moment it does adjust. I was told not to have iron rich foods as it feeds the growth of red blood cells.I also am noticing hair loss and Dr says it’s not from the phlebotomy’s. Any suggestions on this. I have had PV since 2019
I have found that when I'm in full nutritional ketosis, the time between my phlebotomies can increase from 4-weeks to up to five months! A diet that puts you in nutritional ketosis is very low in carbohydrates and sugar in any form. You should consult with your medical care team before making a significant change to your diet to ensure that it is safe for you to do. This has been my personal experience and your milage may vary, but it does tend to make sense that you deprive the cancer of the food sources that feed it it will slow the blood production down.
I have found that when I'm in full nutritional ketosis, the time between my phlebotomies can increase from 4-weeks to up to five months! A diet that puts you in nutritional ketosis is very low in carbohydrates and sugar in any form. You should consult with your medical care team before making a significant change to your diet to ensure that it is safe for you to do. This has been my personal experience and your milage may vary, but it does tend to make sense that you deprive the cancer of the food sources that feed it it will slow the blood production down.
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Polycythemia vera
If indeed polycythemia vera then I too have noticed shortness of breath esp walking “up hill” and not even that steep! But I slow down and my breathing adjusts. Sometimes it happens climbing stairs. And yes, I was diagnosed with PV back in May
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1 ReactionI too have shortness of breath which is apparently attributable to low hemoglobin (I have Waldenstrom's Macroglobulinemia). I received some relief from increasing the iron in my diet.
As a vegan, that's a little tricky; however, here's a good list of iron-rich plant foods:
https://www.healthline.com/nutrition/iron-rich-plant-foods#TOC_TITLE_HDR_5
Hope this is helpful.
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1 ReactionI also have PV and shortness of breath but you are right, if you stop for a moment it does adjust. I was told not to have iron rich foods as it feeds the growth of red blood cells.I also am noticing hair loss and Dr says it’s not from the phlebotomy’s. Any suggestions on this. I have had PV since 2019
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1 ReactionI have found that when I'm in full nutritional ketosis, the time between my phlebotomies can increase from 4-weeks to up to five months! A diet that puts you in nutritional ketosis is very low in carbohydrates and sugar in any form. You should consult with your medical care team before making a significant change to your diet to ensure that it is safe for you to do. This has been my personal experience and your milage may vary, but it does tend to make sense that you deprive the cancer of the food sources that feed it it will slow the blood production down.
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1 ReactionThanks, Good advice, will bring it up with my Dr
@charliebriggs1godforall, I'm tagging you to make sure that you saw the helpful posts that you received from @chadknudson @inevanmac @jerrlin and @nsh. You may also wish to connect with other PV-ers in these related discussions:
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
- Polycythemia Vera and Nutritional Ketosis https://connect.mayoclinic.org/discussion/polycythemia-vera-and-nutritional-ketosis/
- Polycythemia Vera: Is there anything I can do for fatigue at home? https://connect.mayoclinic.org/discussion/fatigue-2/
Charlie, is PV a recent diagnosis for you? Are you on treatment for PV?
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1 ReactionIt is a recent diagnosis. I'm on treatment but still learning what will be helpful.thanks so much!
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1 ReactionWhat treatment are you taking?
Phlebotomy and low dose aspirin at this point looking into treatment options to lower production of red blood cells