Give Me More Iron

[Oozz]

Why don’t they give additional iron to non-responders? There doesn’t seem to be any scientific rationale as to why a second dose of iron isn’t given, or a third. Based on my understanding, it’s due to safety concerns which are incomplete and outdated. We really don’t understand the boundaries of those safety concerns.

The way iron metabolism works is not just about absolute levels but the length of time at those levels. It is very plausible that levels need to be high for a long time in order to get to the brain. A second or third dose could work.

[Rustsmith]

I can only speak from my own experience. I used oral iron to increase my ferritin from 42 to over 650, which is where it stayed for well over a year. My neurologist's position was to keep taking it so long as I didn't develop any signs of jaundice. Even at 650 for that long, it didn't help my RLS. I finally stopped taking it because it wasn't helping and I asked my GP to run genetics test to determine whether it was that high due to hemachromatosis. The test came back negative so I resumed taking it again and my ferritin was back up to 450 earlier this year and my hematocrit had stayed over the upper end of the max recommended value. I decided that the best way to lower both to "safer" values was to donate blood. I donated a few weeks ago and haven't had a blood test since then.

The concern is that excessive iron can cause damage to some organs, including the liver, in those who are susceptible. Apparently there is no way to determine susceptibility until it is too late, so they take the better safe than sorry approach.

[Oozz]

Thank you rustsmith. After further research, I’m finding that this is actually not the case and my initial thesis was very much incorrect. Although some people could respond to iron for longer, it’s probably very small subset of people.

There is a lot wrong in the RLS brain. It may even be that the parts of the brain that need iron are dysfunctionining to the point where they could not even take up the iron.

Unfortunately, there are many break points.