Low iron levels.

[JeanieRN]

Hi my ferritin level is 11. I looked it up but I still don’t fully understand why iron levels remain low with PCV? Any input is appreciated. I am also experiencing hair loss which can be due to low iron levels. Anyone else experiencing this?

[Paul_1971]

Hi,

Are you receiving any treatment?

Venesection can lead to low iron levels, which despite its negative effects on energy levels etc can help control the excess red cell production, iron is food required in order to produce red cells, less iron = less effective red cell production.

Do you have an enlarged spleen at all as some with PV do?

Paul

[JeanieRN in reply to Paul_1971]

Hi Paul, thank you for your response! The only treatment I have had is Pegasys for about 2 months and I just stated Besremi a few weeks ago. No enlarged spleen. I am hoping I can start on an iron supplement if my Hct stays at 40. I see my MPN specialist this Thursday.

[Orangeboykitty]

Ferritin levels tend to be low with PV because your body uses iron to make those excess red blood cells. My hematologist told me to stay away from iron supplements. You can, however, eat foods that contain iron, like red meat and the dark meat of turkey. An iron pill is like eating 10 steaks, so unless you intend to eat 10 steaks, some red meat won't hurt you. On Besremi your iron levels will rise, but slowly. I'm also on Besremi and find that it's a very good drug but works slowly. Hang in there! Your ferritin levels may never be quite normal but that's the nature of PV.

[mark382]

I have PV and venesections. My Ferritin level is usually about 3.

[beetle]

What a shame we can’t help each other on this one. My ferritin level was over 11,000! It is now 7000+ but it has been as low as 3000+. Mine is from regular transfusions. I’m afraid I can’t give you any advice regarding your present predicament. I hope you manage to get it sortedBest wishes, Jan x

[hunter5582]

Lower levels of iron can be associated with PV. The KISS version is that your body is using all of the available iron to make RBCs.

Polycythemia vera (PV) is characterized by erythropoiesis and JAK2-activating mutations, with increased risks of morbidity and mortality. Most patients with PV are iron deficient, and treatment often includes hematocrit control with phlebotomy, which may exacerbate iron deficiency-associated complications.

pubmed.ncbi.nlm.nih.gov/281....

A bit more about iron metabolism with PV.

nature.com/articles/s41375-...

Hope this helps explain it.

[JeanieRN in reply to hunter5582]

Thank you for this helpful information! I appreciate it!

[lizzziep]

I have ET, I am always anaemic, when the levels get too low I am prescribed Ferrous sulfate. I’m taking 3 a day at the moment, it usually brings my iron levels up in a few weeks, eventually they always go down again. I’ve had various investigations but they can’t find a reason why! My next haematology appointment is on the 11th, hopefully the tablets will have worked by then.

[Cakeface in reply to lizzziep]

It's definitely not recommend for people with PV though 😬

[Skyehope]

Hi JeanieRN. I have PV and my ferritin levels usually sit between 3 and 5. This seems to happen naturally and sometimes I feel it but sometimes I don't. Often my folate levels are rather low too aswell and I think I feel effects more when both of them are on the low side. There is definitely a balance between symptoms of low iron and taking supplements but your haem will be the best judge. If you're feeling symptomatic from low levels then let them know.

I do experience hair loss from the low levels at times but I tell myself it's better that than having too many cells knocking about (and I'm very previous about my hair so it took some adjustment!). Its really just thinner than it used to be.

Hope yours gets better ☺️

[EPguy]

Interesting note in one of the reports Hunter provided:

<<The dissociation of anemia from iron deficiency is particularly striking in PV,>>

I think this has been discussed on the forum, but worth keeping in mind that iron issues are complicated with PV. Anemia and iron levels are not the same thing, esp in PV.

I had both Ferritin and Iron tested early on; just realizing today they are separate things.