Iron Testing & Inflammation

[Oozz]

Hello -

My RLS doctor, who is amazing, was not comfortable giving me IV iron because my levels were higher than he is used to dealing with. So, I sought out a hematologist and explained my situation to him. My hope was to get IV iron. So, for the past several months he has been monitoring my iron and a bunch of other markers.

His approach to determine iron levels is much different than my neurologist, in that my hematologist is looking for trends over time and mediating the numbers with various inflammation markers. My most recent ferritin was 200, (down from 280) and % saturation is 28% (down from
47%). In addition, the levels of inflammation have increased over that time and my hemoglobin has decreased. He estimates my real ferritin to be in the low 100’s and is starting me on IV iron.

I don’t know if he’s right and maybe i’m just fishing for the right doctor who would give me the IV iron, but i thought this would be informative for others out there. I haven’t head of many doctors taking this approach. Has anyone else consulted a hematologist for iron testing?

[stjohnh]

I get my Injectafer IV iron prescribed by a hematologist, but that is primarily because the large clinic I go to only allows hematologists to prescribe IV Iron. Many others have found that they can only get the iron prescribed by a hematologist. If the doc is willing to give you IV Iron with a ferritin of over 100 (actual measurement, not "adjusted") I would stick with that one, sounds like you got a winner.

[Oozz]

I get my Injectafer IV iron prescribed by a hematologist, but that is primarily because the large clinic I go to only allows hematologists to prescribe IV Iron. Many others have found that they can only get the iron prescribed by a hematologist. If the doc is willing to give you IV Iron with a ferritin of over 100 (actual measurement, not "adjusted") I would stick with that one, sounds like you got a winner.

Yes, but is it common practice for your hematologist to look at inflammation numbers? Is my doctor a quack or being reckless?

Also, he is not worried at all about iron overload, he says, worst case scenario, he can just take blood out and that quickly fixed the issue.

[stjohnh]

It is actually quite difficult to get too much iron in your body, but if you do, it is bad. My hematologist doesn't check inflammatory markers (tests for inflammation), and indeed, he has continued to give me Injectafer (IV iron), even though my ferritin has been in the 400 range (although it was below 100 before my first infusion). This fits with my reading of the literature, basically, most people with a ferritin much over 100 are in that state because of some inflammatory state, not because of more than normal amount of iron in the blood. The people with significantly increased body iron (enough to cause problems) ordinarily have ferritin over 1000, all the time.

Your hematologist is likely like mine, young enough so the worries about too much iron seem overblown and the rest of your clinical picture does NOT suggest too much iron, in spite of a ferritin greater than "normal."

What would really help, and research is progressing along this line, is a better test for the amount of iron in your body.

Iron overload ordinarily falls into three groups: 1: hemochromatosis: a genetic disease in which iron accumulates and damages many of the body organs. 2. Accidental overdose, usually children who accidentally ingest a bunch of iron pills (the most common form of oral iron comes in tablets about the size of an M&M, and are usually maroon colored). 3. Conditions requiring lots of transfusions (which have lots of iron in them) such as bone marrow failure.