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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
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
A myMPNteam Member

Thanks, Ben. It's something I'll definitely bring up with my doctor the next time we meet. Take care.

March 6
A myMPNteam Member

Now, that sounds like a pretty good rationale, Ben. I will keep your plan in my arsenal for consideration. Thanks for sharing.

January 5

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