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A myMPNteam Member asked a question 💭
Johannesburg, ZA
December 22, 2022
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Answer Summary

Members shared varied experiences regarding iron deficiency in polycythemia vera, with most confirming they have low iron levels that their... Read more

Members shared varied experiences regarding iron deficiency in polycythemia vera, with most confirming they have low iron levels that their doctors intentionally keep suppressed to reduce red blood cell production and the need for frequent phlebotomies. Several members explained that the body may use iron deficiency as a natural mechanism to slow blood production, and that even when PV patients increase iron intake, the body absorbs only what it needs to maintain lower levels. A recurring theme was the delicate balance between managing iron deficiency symptoms and avoiding treatments that could worsen the condition, with members noting concerns about how low iron and ferritin can safely go while still supporting the body's essential functions.

A myMPNteam Member

I have been iron deficient since I was diagnosed in 2020. Also, my bone marrow showed that my iron stores were depleted. I have been taking iron supplements but not much, because it causes you to make more red blood cells which leads to more phlebotomies! It’s a viscous cycle.

December 25, 2022
A myMPNteam Member

hi , low iron lvl in pv patients is normal 'created' to slow down blood production
if this low iron lvl is 'cured' by medication blood production will increase
a professor at university hospital told me 'you will like sport drinks because they contain lots of iron , first you will feel well , later you will come to me to give blood'

January 5, 2024
A myMPNteam Member

I understand keeping PV patients slightly iron deficient, but how low of an iron and ferritin level are safe? Iron is needed in many chemical reactions in the body.

December 25, 2023
A myMPNteam Member

Yes, iron is necessary, but research suggests that, even when someone with PV increases their iron intake, the body will absorb only so much in order to keep our iron levels low.

One's iron level shows the amount of iron in the body. One's ferritin level indicates the number of iron 'storage containers' available to accept and store iron. In other words, if your iron is low but your ferritin is normal, you can consume more iron and store it away, but if both your iron AND ferritin levels are low, you can consume a lot of iron but have no 'room' to store that iron. In the latter case, consuming a lot of iron does no good. The latter state is the one many to most PV patients find themselves.

December 26, 2023 (edited)
A myMPNteam Member

Recently, I read that researchers believe the body of a PV sufferer uses iron deficiency as a mechanism, a tool, to decrease the production of RBC. So, theoretically, all PV patients are iron deficient.

December 24, 2023

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