The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together with blood issues. I see your appointment is for Dec 21. The same day (night) when I have my overnight oximetry test. If I don’t have sleep apnea then I may be heading in the same direction of Polycythemia Vera too.
I’d like to know what you find out. Let’s compare notes, ok?
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
How does everyone deal with the pain from your hands and feet. My fingers feel like they are burning, throbbing, cold, feel swollen etc. Nothing seems to work.
Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?
How does everyone deal with the pain from your hands and feet. My fingers feel like they are burning, throbbing, cold, feel swollen etc. Nothing seems to work.
When you were on the Keto diet how often did you have to do the phlebotomy? I'm looking to reduce my time from once a month to further out. @chadknudson had success with this. What I have read is you should only be on a low carb diet for about 6 months.
I’m wondering who tried the keto diet and how it worked. I started keto a year and a half ago and then was just diagnosed with JAK2/PV in September. I felt great on keto, but after a year was so burnt out on it and have slowly started incorporating carbs/sugar back into my diet.
When you were on the Keto diet how often did you have to do the phlebotomy? I'm looking to reduce my time from once a month to further out. @chadknudson had success with this. What I have read is you should only be on a low carb diet for about 6 months.
I’m wondering who tried the keto diet and how it worked. I started keto a year and a half ago and then was just diagnosed with JAK2/PV in September. I felt great on keto, but after a year was so burnt out on it and have slowly started incorporating carbs/sugar back into my diet.
I have used nutritional ketosis to help keep my PV in check. On a normal American diet with sugar and carbs, I have to have a phlebotomy once every four weeks or so. When I am in full nutritional ketosis, I can spread the phlebotomies out as much as five months in between each one. Your milage may vary but that has been what I have experienced.
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Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together with blood issues. I see your appointment is for Dec 21. The same day (night) when I have my overnight oximetry test. If I don’t have sleep apnea then I may be heading in the same direction of Polycythemia Vera too.
I’d like to know what you find out. Let’s compare notes, ok?
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1 ReactionThe specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
Do you know if you have sleep apnea?
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1 ReactionMayo Clinic has some information on Polycythemia Vera that might be helpful.
-- Polycythemia vera - Symptoms and Causes:
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
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2 ReactionsI have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?
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Hug
1 ReactionHow does everyone deal with the pain from your hands and feet. My fingers feel like they are burning, throbbing, cold, feel swollen etc. Nothing seems to work.
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1 ReactionI did it before I was diagnosed. I was still on in September when I was diagnosed. I do phlebotomy every two weeks right now.
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1 ReactionWhen you were on the Keto diet how often did you have to do the phlebotomy? I'm looking to reduce my time from once a month to further out. @chadknudson had success with this. What I have read is you should only be on a low carb diet for about 6 months.
I have used nutritional ketosis to help keep my PV in check. On a normal American diet with sugar and carbs, I have to have a phlebotomy once every four weeks or so. When I am in full nutritional ketosis, I can spread the phlebotomies out as much as five months in between each one. Your milage may vary but that has been what I have experienced.
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Like -
Helpful -
Hug
3 Reactions