u/IndependentPlant3352

CHIP, Polycythemia Vera or Secondary Polycythemia?

Hi everyone,

I (35F) am currently in the care of a hematologist/oncologist who specializes in myeloproliferative neoplasms.

I have had high platelets since 2017 (currently 600). I am JAK2 positive.

My EPO is 4.1 mIU/mL.

My hematocrit is .442 but has been as high as 467 L/L and has not been below .44 in the last couple of years.

My hemoglobin is 147 g/L and the lowest it's been in 7 years is 142.

My ferritin has been between 15-30 even when taking oral elemental iron consistently.

I am not a doctor but I am leaning towards me likely having PV/masked PV but I saw my MPN specialist a little while ago and he could not seem to see past his weight bias. For context, I would be considered obese but I am active and an athlete. I don't drink or smoke and I mostly eat vegan. He asked that I focus on weight loss and then meet again in 9-12 months.

He mentioned that Clonal Hematopoiesis of Indeterminate Potential (CHIP) may be the reason that I am JAK2 positive but my understanding is that it is quite rare in folks my age.

He also mentioned the possibility of sleep apnea given my weight but I have been tested and I do not have sleep apnea. Also, my understanding is that my EPO level would be high and not low if sleep apnea was the cause of my higher counts.

He also wanted to wait 1-2 years for an BMB but I convinced him to do one in six months. I have a follow up with him in a few months.

Any thoughts?

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u/IndependentPlant3352 — 3 days ago