Ferritin test

[dishcell]

On diagnosis with PV I was told never take iron supplements as it drives the disease. I have read posts where people were prescribed iron supplements. I wanted to know what would have prompted these prescriptions and what form it was given. I have symptoms which I think could be caused by low ferritin.

[hunter5582]

The answer to your question is somewhat complex. It has to do with the deregulation of iron metabolism that is an inherent function of PV. Nearly everyone with PV is iron deficient without anemia. KISS explanation is that your body is using up all the available iron to make too many red blood cells. The goal of phlebotomy/venesection is to ensure that you are iron deficient enough to reduce erythrocytosis. The only time someone with PV would take iron supplements would be if you got so iron deficient that you were having significant issues/risks (can happen due to over-aggressive treatment). However, more iron = more red blood cells. Your body will want to use all the available iron to make red blood cells rather than store it as ferritin.

If you are looking at iron panel tests, here is what the 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...

A bit more sophisticated info about iron metabolism and PV

nature.com/articles/s41375-...

Hope that helps.

[dishcell in reply to hunter5582]

Thank you that is very informative thank you for the link.

[bluteco in reply to hunter5582]

Can you help me with my blood test, I’m having panic attacks with what I’m reading on the Internet, all my levels are high..

white blood count is 9.60

red blood count is 5.38

Hemoglobin 15.0

Hermatocrit 46.1

Ferritin 201

[hunter5582 in reply to bluteco]

Please bear in mind that I am just another MPN patient and not a medical professional, but will answer the best I can. Lab values and "normal range" can vary by lab. These numbers are from my lab reference ranges.

Normal Range

WBC 3.98 - 10.01

RBC 3.93 - 6.08

HGB 11.2 - 17.50

HCT Male 40.1 - 51.0% Female 34.1 - 44.9

Ferritin 30 – 400 ng/ml (my lab)

Ferritin has significantly different normal ranges at different labs. You will see different "normal ranges" based on this. Male - 18-270ng/ml, Female 18-160ng/ml is also out in the Googleverse as "normal". Be sure you are comparing your results to your correct lab values. Check with your lab to see the correct normal range.

You did not say whether you are diagnosed with PV, but taking a guess you are. Is so, then do not panic. Your RBC looks relatively good. HCT indicates it is time for a therapeutic phlebotomy (aka venesection). This will drop your HCT as well as your Ferritin levels. HCT is used as an approximation to determine when to intervene. The goal is to keep HCT less than 45% for males and 42% for females. Unless you are experiencing a spike in symptoms, do not let lab values panic you. Let them inform you about what you need to do to prevent problems.

Suggest the following steps

1. Consult with your hematologist ASAP.

2. If you are seeing a regular hematologist rather then a MPN-Specialist, find one to consult with ASAP. mpnforum.com/list-hem./ . Most hematologists do not have the MPN KSAs to provide optimal care.

3. Do not panic. Take effective action.

I will close with one of my favorite quotes that I recite often (Frank Herbert, Dune) .

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain."

[bluteco in reply to hunter5582]

Thank you so much! I appreciate you taking time to get back to me

[Aime]

Hi, I was put on iron tablets (low dose) for 14 days when a nurse mistakenly took off blood when my counts were already low. I was so exhausted, I was almost crawling! Not nice. If you have new symptoms of any kind, it’s always best to get them checked. They may be just part of your PV but easy to blame everything on our MPNs. Kindest regards Aime 😻😻

[dishcell in reply to Aime]

Thank you Aime for your reply.

[Innessant]

Don't take Iron tablets for PV unless you have very real reasons . I tried it and became a blood factory...needing almost monthly phlebotomies. It took six months to get over this period. I am fine without any added iron. Diet provides me with enough and I am back to 3-4 phlebotomies a year.All else asymptomatic.

[Chicagopv]

I was on iron tablets for a couple of years because I was anemic. Caused by Jakafi, no doubt.

[dishcell in reply to Chicagopv]

How did the iron tablets affect your PV and how long did you take them for ?

[Chicagopv]

Didn't really have an effect on PV numbers. Took them for about five years, off and on.