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Polycythemia: Primary or Secondary?

Blood Cancers & Disorders | Last Active: May 12, 2023 | Replies (29)

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@buckaroobanzai

Well, I am not a medical professional, but it sure does sounds like something peculiar is going on in your bone marrow. Meaning, you have rising RBC, WBC, but also anemia. I don't think I've ever read about a person having both polycythemia AND anemia. Have you?

I met with a different MD this week. My hematocrit tends to run about 54, which is just over the male hematocrit upper limit of 50.3. My physician has ordered phlebotomy anytime I go over 52.

He said not to worry, that in fact athletes 'dope' themselves up to achieve these higher limits without problem. He also said that the sort of polycythemia signs and symptoms I fear don't hit until the hematocrit gets into the 60s. That's when doctors begin to worry. So, basically, he told me not to worry too much.

The female hematocrit upper limit is something like 44.3 on our reference range, which is significantly lower than that for a male. May I ask what you hematocrit level runs pre-phlebotomy? And, at what point do you go for phlebotomy? I am just wondering how high they let you go before phlebotomy.

What I find most interesting about your story is your mention of being "beyond fatigued." Sounds like how I was up until a month or two ago. I was diagnosed with Chronic Fatigue Syndrome (yes, it's a real 'thing' now), which appears to result from inferior cellular respiration. Mitochondria in cells don't make enough energy -> exhaustion.

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Replies to "Well, I am not a medical professional, but it sure does sounds like something peculiar is..."

Hi Buckaroobanzi!

Thanks for responding. No, I have never heard of anyone with polycythemia AND anemia. Interestingly, when I went to get a second opinion, the hematologist immediately said "you can't have polycythemia and anemia, its impossible". Here we are months later and she now agrees with the original diagnosis. At times my iron goes down to 7 -11. It was good on last lab (84). That's about 50% on scale. Iron saturation always low. between 18 - 30.
Both drs told me to never take any iron pills. My hematocrit on this most recent test is at 49.2. It has been a bit over 50 prior. She said she's not going to treat until it gets to 52. It has risen EVERY lab test I've received since mid January. Sometimes a little sometimes more. But always higher than previous test. Hemoglobin fluctuates but ALWAYS high.
I really appreciate your input and or thoughts. I'm not sure what I have or where to go or should I just do nothing. I uploaded picture of last lab.

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