Polycythemia: Primary or Secondary?

Posted by buckaroobanzai @buckaroobanzai, Aug 31 9:44am

Hello all,

High EPO implies secondary polycythemia. Low EPO implies primary polycythemia. But what if, like me, you have very low but technically "normal" EPO?

Am negative for the JAK gene.

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@buckaroobanzai, what classification did your doctor assign to your polycythemia? Primary or secondary?

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This is where it gets confusing. The low end of our lab reference range for EPO is 4. I am a 6. Thus, the EPO test was inconclusive. So, we did a JAK2 test, which came back negative.

My physician assumes this is secondary polycythemia but the water is muddy.

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@buckaroobanzai

This is where it gets confusing. The low end of our lab reference range for EPO is 4. I am a 6. Thus, the EPO test was inconclusive. So, we did a JAK2 test, which came back negative.

My physician assumes this is secondary polycythemia but the water is muddy.

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Hi, having similar issues. My dr. Just called it polycythemia. I have similar EPO but steadily rising RBC and WBC. I also have chronic anemia so my doctor is very hesitant to do phlebotomies. I’m so worried I’m going to have a stroke due to the polycythemia, overweight, and age 57. Previous hematologist gave me phlebotomies THEN iron infusions. That didn’t make sense to me. JAK2 also negative along with many other gene mutation tests. Bone marrow biopsy was negative two years ago but there were some slight abnormalities. Also have high monocytes and neutrophils. I have no idea where to get clarification of what’s going on. I’m beyond fatigued and just recently was diagnosed with cluster headaches! Never had one until about 3 months ago. I’m 57. Had brain MRI. Nothing seen.
I know this is long read but if you have any input on ANY of the things I listed I would appreciate it. I’m on my 3rd hematologist. I’m trying to upload CBC with Differential. Thanks

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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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@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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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.

Shared files

mayo posting 1-cropped (mayo-posting-1-cropped.pdf)

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Yes, my phlebotomy treatment threshold is also hematocrit > 52. Seems to be the standard. My hematocrit usually runs about 57.

My MD sent me an email just this morning. She said she is cautious and not permitting me phlebotomy with a hematocrit under 52 because frequent therapeutic phlebotomy can cause anemia.

Your numbers are in line with upper (but normal) male reference ranges. Here are my numbers with reference ranges listed:

WBC 7.7 K/uL male reference range = 3.7 – 11.1 K/uL
RBC 6.12 M/uL male reference range = 4.10 – 5.70 M/uL
Hgb 17.2 g/dL male reference range = 13.0 – 17.0 g/dL
Hematocrit 51.8 % male reference range = 39.0 – 51.0 %
MCV 85 fL male reference range = 80 – 100 fL
RDW, RBC 14.0 % male reference range = 12.0 – 16.5 %
Platelets 352 K/uL male reference range = 140 – 400 K/uL

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@buckaroobanzai

Yes, my phlebotomy treatment threshold is also hematocrit > 52. Seems to be the standard. My hematocrit usually runs about 57.

My MD sent me an email just this morning. She said she is cautious and not permitting me phlebotomy with a hematocrit under 52 because frequent therapeutic phlebotomy can cause anemia.

Your numbers are in line with upper (but normal) male reference ranges. Here are my numbers with reference ranges listed:

WBC 7.7 K/uL male reference range = 3.7 – 11.1 K/uL
RBC 6.12 M/uL male reference range = 4.10 – 5.70 M/uL
Hgb 17.2 g/dL male reference range = 13.0 – 17.0 g/dL
Hematocrit 51.8 % male reference range = 39.0 – 51.0 %
MCV 85 fL male reference range = 80 – 100 fL
RDW, RBC 14.0 % male reference range = 12.0 – 16.5 %
Platelets 352 K/uL male reference range = 140 – 400 K/uL

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Thank you. I am a female, if that makes a difference.

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Yes, I'm sorry, I did and do recognize you as a female. 🙂

What I meant to imply by the above is that, although your numbers are high according to the female reference range, they are within norms for the male reference range. Which seems to imply to me (a non-medical professional, mind you) that your numbers are not 'scary bad.'

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@buckaroobanzai

Yes, I'm sorry, I did and do recognize you as a female. 🙂

What I meant to imply by the above is that, although your numbers are high according to the female reference range, they are within norms for the male reference range. Which seems to imply to me (a non-medical professional, mind you) that your numbers are not 'scary bad.'

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LOL!! That makes me feel better!!! Are your RBC and WBC in range similar to mine?

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Yes, mine are similar to yours. Actually, mine are a bit higher. My numbers are listed above. The first number listed after each label (RBC, etc.) is my current number.

Curious: Last Wednesday, my hematocrit was 51.9 but TODAY it was 52.9. So I am going up something like 1.1 per week?!

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@buckaroobanzai

Yes, mine are similar to yours. Actually, mine are a bit higher. My numbers are listed above. The first number listed after each label (RBC, etc.) is my current number.

Curious: Last Wednesday, my hematocrit was 51.9 but TODAY it was 52.9. So I am going up something like 1.1 per week?!

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Mine fluctuates frequently, but never below 47.? Mine doesn’t increase by that much in a week I don’t think. Maybe over two weeks it will fluctuate that much. Yours is a full point. Seems like a lot for only a week.
My hemoglobin always runs high too. My platelets are almost always normal.
There is something else I want to show you regarding RBCs. I need to find test that’s shows some types of RBC abnormalities. I will look up the names this evening and post them. Have a really good day.

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Mine rises consistently. At my first phlebotomy it was 57. Don't know what it was after phlebotomy, but one month later it was at 52. No anemia.My hemoglobin is always too high. Platelets generally run about 325-350. Years ago, my platelets ran so high that my local blood bank took "double platelets" every two months.

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