Polycythemia Support Group

Polycythemia is a condition in which there is a net increase in the total circulating erythrocyte (red blood cell) mass of the body. There are several types of polycythemia. Primary polycythemia, often called polycythemia vera (PCV), polycythemia rubra vera (PRV), erythremia, or just PV, occurs when excess erythrocytes are produced as a result of a proliferative...

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Heart, Blood & Circulation
/ Polycythemia Support Group

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Simpsonmsq
Simpsonmsq

Hi all! New to the group..I'm in the early stages..hematologist thinks I have secondary polycythemia...awaiting sleep study and cardio. Any advice?


My Hct/hgb shows 16 and 56


Not sure what all that means but I'm tired all the time!!!!!


Ladylike
Ladylike
I'm New here as of today! .My hematologist refuses to test me to see if I have primary or secondary, but he's guessing secondary. He blames smoking. And will only test me AFTER I succeed in quitting smoking. However I beat the cbc last 2 times. After 9 yrs of phlebotomies & trying all sorts of alternative supplements, no prescription meds, I discovered a few facts to my benefit. Red blood cells are the only cell in the human body that CANNOT use fat as fuel. So I have been killing off my red blood cells by depriving them of their only fuel source: carbs,(sugar/glucose). lol. Now they have no fuel to proliferate!! I am still quitting smoking, and no one can stick to any diet forever, but I succeed most days on a ketogenic diet. You will read on the internet that the brain is the only other part of the body that cannot use fat as fuel, but the brain does indeed even cure itself of dementia & Alzheimer's with coconut oil, per dr. mary Woodward (sp?) who cured her husband with ketones produced from coconut oil. My hemoglobin & hematocrit keep getting lower every time. GOOD Fat thins the blood. Stay away from bad fat. See you tube's videoes of dr ken berry who is helpful. good luck
Aizad
Aizad
Hi New here as well.
Was diagnosed with Polyisthemia secondary by my hematologist. He did performed blood seemer and erythropoietin tests. Erythropoietin test was fine but blood seemer showed that my red blood cells have erthrocytocis but the cells are in good shape. My doctor didn't performed JAK2 test as he thinks there is no need to and blames my smoking. I did quite smoking on 24Nov 2018, the day when I was diagnosed. My hb level was 18.5 , RBCs 6.32 and hct 54.10.
Since then, I have drawn out the blood three times. The numbers do come into range for first 2weeks from donation but then they start to elevate again (hb 17.5 and HCT 51). Red blood cells are in range . Can anyone please advise if this seems secondary to them and for how long I would be required to keep donating / with drawing blood?
Thanks
Aizad
Bouc
Bouc
To Ladylike,
Thank you so very much for the advice to eliminate carbs. I’ll try Keto. I’m.really going down hill and I live on carbs. Not anymore.
I’m in my 28th year. And recently lost medical coverage. I’m 66 years old. Feel 100. Lol. Any other natural health help?
God bless.