Exhausted iron storage?

[littleluigi]

exhausted iron storage, what does it mean? What causes it? Sign of pre-mf?

[Wyebird]

Without seeing your blood test results I wouldn’t be able to say but last year I was contacted to say my ferritin was low. It should have been above 12 and mine was 6. Before the call I actually confided in a friend to say I felt really ill. I was put in and still am iron tablets. I have ET. Hope this helps

[littleluigi in reply to Wyebird]

Hello I have high platelet just above limit also Hct, HB, RBC, just above or under the upper limit

[Wyebird in reply to littleluigi]

Have you been diagnosed ?

[mark382 in reply to Wyebird]

I'm never told my blood figures and I never ask. However the nurse doing my benediction asked if I knew my figures. She then told me my Ferritin level was 4. That was before 2 venesections. I know it is low as I have PV. At the moment I feel good. Take care all.

[Wyebird in reply to mark382]

I have ET - I’m the opposite I study every number and google. I’ve Slowly come to conclusion doesn’t matter what supplements I take apart from chai seeds and magnesium I still can’t influence my blood.

[Mamab83 in reply to Wyebird]

I am the same! I google every single number and worry lol.. my ferritin and iron are always low and I have ET... my bone marrow biopsy showed no iron stores so I’m assuming it’s pretty common with ET

[hunter5582]

If you have PV, dysregulation of iron metabolism is part of the disease. A certain level of induced iron deficiency is a goal in treatment to control the erythrocytosis.

Here is an explanation of what your iron panel numbers mean.

•Serum iron. This test measures the amount of iron in your blood.

•Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.

•Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.

•Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.

•Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.

webmd.com/a-to-z-guides/iro...

Hope that helps.

[ChelseaF]

Are you talking about iron staining in your marrow, or blood levels? My first biopsy showed no iron storage but my serum levels were normal. I have often wondered what it means myself but afraid I don’t have the answers.

[littleluigi in reply to ChelseaF]

Iron staining in my marrow, the blood levels are within normal ranges

[hunter5582 in reply to ChelseaF]

The KISS explanation is that with PV, your body goes into overdrive and uses all available iron to make red blood cells. Therefor, it uses up most of the iron rather than store it. People with PV are almost always iron deficient because of this. Keeping your iron levels depleted is the purpose of phlebotomies as it controls the erythrocytosis. However, it can increase thrombocytosis if that is part of your MPN presentation. PV treatment involves a balancing act regarding iron - you need to be iron deficient, but not too iron deficient. Too iron deficient is a problem too. Note: iron deficiency and anemia are not the same thing.

Here is a recent article regarding iron and PV

nature.com/articles/s41375-...

[Wyebird in reply to ChelseaF]

It’s so complicated . That’s why I admire the Haematologists. They are constantly juggling numerous plates in the air in order to give us the best q of life. As usual, Hunter has given us some good info.

[Smile61]

My bone marrow biopsy showed 0 iron but blood levels are normal. I still don't understand this myself and Hematologist/Oncologist did not explain either. I am wondering if that's what makes us so tired. I read an article where the iron levels in blood were not accurate for ET patients and further testing needs to be done. I was put on liquid iron for months and blood levels never moved and my fatigue remained the same.

[Pte82 in reply to Smile61]

Smile61, is yout liquid iron liposomal? If not, liposomal iron may offer a higher level of absorption and retention.

[Wyebird in reply to Smile61]

What is your hg level? I can only have one iron tablet a day as too much pushes up my ferritin level.

[Smile61]

Yes.