Anyone with PV and LOW Iron levels?

No, low iron issues but I’ve been taking prescribed Folic Acid since I started HU. Once my hematocrit level more or less remained at 42 or below (my “sweet” spot, the PA suggested I stop the Folic Acid. I told her everything seemed to be working just fine and I was not willing to make any changes if there was no harm in continuing with it, She agreed. Maybe ask your caregiver about Folic Acid?
And, I think you are a cautionary tale about taking supplements. I always research and then still ask the doctor. I wanted to take a collagen supplement for my hair and when I asked she told me it would change lab values!

The previous oncologist said it was fine to take turmeric. I read that there were studies saying it may help PV patients lower their red cells and they were researching that. It wound up almost eliminating my need for Ibuprofen. Really took away aches and pains but I never had low iron and am only taking that, Hydroxyurea and baby aspirin. I’ll def ask about folic acid! Thanks for the comment 🙂

I have experienced low iron as well. I had an iron infusion about a year ago. I had basically no iron left
and the side effects are terrible. Now I take iron pills 3x a week. It is a balancing act. Good luck.

Do you have PV?How was your hemoglobin? I was told previously I can’t take iron b/c it’ll raise my labs and need more phlebotomies? Still awaiting my call back.

I have PV. My haemoglobin is always on the way up! However the iron depletion was so severe that I had an infusion. Not recommended for PV. I monitor my iron and PV together and commenced pills when my iron depletion again became severe. The side effects of iron depletion are just as bad as PV. Together fatigue becomes a really terrible problem. But iron depletion caused my whole body to go dry. hair loss and my scalp to be a total mess!
So try not to get to that point. I have phlebotomies as needed, sometimes 4weeks apart, or
a little longer. Good luck

Folic Acid is not good for us with PV, it was necessary when I was pregnant but had to stop when I saw my blood was too thick, not sure why but maybe it causes the blood to condense? As to Iron supplements, I take an iron pill 3 times a week and it seems to give me an energy boost but do not mix iron with zinc, they counter each other so I take the zinc, (good for fighting infections) also 3 times a week but different days and times than the iron. Sunday I don't take either.