FERRITIN

[DannyBoy1]

I finally saw the APS specialist here in Portland. He tooka lot of blood tests. Several were related to iron deficiency. my FERRITIN level is very low. Does anyone know how this relates to APS?

[Tranquility1]

Everyday I'm learning that iron is extremely tricky. Too little and there can be fatigue. To much can be an indication of CAPS (catastrophic APS).

I was put on iron because my ferritin was very low and there are many studies that show low to normal low ferritin plus the symptom of fatigue can have fatigue improved through iron supplements.

I took the daily supplement and it improved my fatigue 20% - yahoo. At the same time, I was getting dizzier every day and after two months my blood pressure was dropping. Two weeks ago it got to the point where I couldn't stand without feeling like I would black out and the doctor temporarily has taken me off iron supplements.

It ends up that every living cell in the body needs iron. That includes cancer cells and infections. The body can do a tricky thing where even if you have enough iron, then it can hoard the iron and just have enough for survival in order to starve an infection (or cancer) of the iron. Therefore, the cancer (or infection) can't grow and might disappear. However, this low blood iron can also cause severe fatigue (even though there is plenty of iron being hoarded in various organs). In addition, if someone whose body is hoarding iron (keeping it from invaders) takes iron supplements, this can then cause the infection or cancer to grow or iron toxicity.

I'm waiting for my blood tests from two weeks ago to come back. It would be nice if whatever had caused me to completely go off balance and black-out when standing up would show up in the blood tests. They are sure taking there time getting them back.

My two cents is, there are great studies on iron improving fatigue in those who are low. But there are also many things that can trigger our body to store iron in other ways and keep it away from invaders. I am glad that your doctor is doing multiple iron tests. This way, you'll find out if your body is hoarding iron to keep it away from something else. If that ends up being the case, then the way to treat it is for the doctors to get rid of the underlying issue (infection, cancer, invader....).

Here is an article on the "Role of iron in the immune response to bacterial infection." So the researchers consider this iron hoarding an immune response. Interesting. ncbi.nlm.nih.gov/pmc/articl...

[DannyBoy1 in reply to Tranquility1]

Thank you for your detailed insights. I was going to add iron supplements but after reading your post, I'll wait. My regular Doc told me that one doesn't need vitamins with today's modern medicine. He's ordinarily a great Doc but he seems to lack current knowledge of nutrition.

[MaryF Administrator in reply to DannyBoy1]

Being low in Iron, or Vit B or D is very common even without the complications and additional burden of autoimmune disease, if your iron is low, you need to insist that it is brought up to the level in line with your national guidelines, make sure they test your B at the same time as this is often off kilter if Iron is low, best of luck, let us know how you get on. MaryF

[Herb]

Testing ferritin is a way of finding out how anaemic you are, it is a routine test done when people are anaemic and being anaemic is one of the symptoms we can get with APS of course it is a symptom of many different conditions.

Did you actually have some kind of major bleed because that can often lead to low ferritin.

[DannyBoy1 in reply to Herb]

This is the first I've heard of a problem. My other blood levels indicate plenty of iron in the system but somehow my internals are holding the iron back from use. It seems premature to add more iron until we know why my body doesn't use what it has now. I get plenty of iron in my multiple vits and we use cast iron cookware. Still waiting on the APS doc to review it with me.