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How Does One Manage Severe Iron Deficiency Given Increasing One's Iron Intake Leads To Higher Hematocrit And More Frequent Phlebotomy?

A myMPNteam Member asked a question 💭
Sacramento, CA

PV. Ferritin level = 8.

December 18, 2023 (edited)
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A myMPNteam Member

Very interesting interpretation, Ben. My iron studies show deficiency in the past six months, and I am concerned more about the low ferritin level of 38 ng (8-388 ref). I have been unable to tolerate iron supplementation on a daily basis, so onc/heme is allowing a trial of every OTHER day for the past month. Otherwise is considering iron infusion. Hematocrits have remained below 42 for over a year, so no phlebotomies. Labs due in a couple of weeks so will be interesting. Symptom burden stable and not much fatigue Not bad for an 87-year-old, I guess.

December 27, 2023
A myMPNteam Member

Wow, Ben. Your ferritin level is at rock bottom, isn’t it (range 8-388). Mine is 38, and heme/onc is concerned about that being low. I’ve been trying iron supplements for the past month and am going to refuse to take it any further when I see him next week. The side GI side effects would cause me to socially isolate myself forever, and I have even begun to have belly aching as a result. SOMETHING has to give! My TIBC is high at 481 (250-450); iron low at 40 (ref 50-170); iron sat low at 8.3 (15-50); RBC normal range; hgb 12.6; hct 41.4. I have been on only aspirin for my PV for the past year, but platelets remain high at 677 since most of last year. Just a little data for background, because although I am iron-deficient, I don’t like the prospect of possibly going into fullblown anemia before long.

January 5, 2024
A myMPNteam Member

I talked to my post transplant doctor about possible MPN drug treatments, he said I should not take any iron supplements, it could cause new problems for me.

January 5, 2024
A myMPNteam Member

After posting this question, I read a medical hypothesis in a journal that implied that the bodies of those with PV keep the ferritin levels low in order to preclude an overproduction of RBC. Perhaps our bodies are 'smarter' than we are? Meaning, perhaps low ferritin and iron levels are preferable to a high RBC count?

December 27, 2023
A myMPNteam Member

Per some professionals: The body uses iron deficiency as a mechanism to preclude the over-production of RBC. Meaning, those of us with PV that involves the over-production of RBC are 'doomed' to suffer from iron deficiency.

December 20, 2023

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