Restless Legs Syndrome (RLS) Discussion Board

During the RLS Patient Symposium yesterday, a comment was made that the experts have come up with a revision to the consensus document for treating RLS. It isn't available yet, but will be published soon on the Mayo Clinic site. They didn't say much about the changes other than that they left the recommended ferritin level at 100. Apparently this was highly contentious with some members (Earley) wanting to increase it to 150 and others were steadfast that it should remain at 100, so it remains there.

Changing to ferritin of 150 would make LOTS more patients eligible. We REALLY need better tests of our body's iron status. A brain iron test would be wonderful. There are way too many problems other than excessive iron that cause the ferritin to increase.

I keep waiting for Hopkins to publish some sort of procedure about how they use ultrasound to measure brain iron. My guess is that like their procedure for using an MRI, it is research grade equipment. But that sort of equipment has to be available in a number of teaching hospitals around the country.

I never hear why hematologist are so leery of more iron. My MD says it is organ failure related but no details.

The issue with the hematologists is one of insufficient knowledge about RLS. They are used to treating patients who are anemic and we do not fit into that category and are therefore outside of their comfort range. This also means that they are not used to working with the forms of IV iron that have shown the greatest benefit for RLS. During the patient seminar last Saturday, Dr Earley explained that the preferred forms of IV iron for RLS are the ones that have a long half life. He said that the short half life forms tend to get gobbled up to form red blood cells and that this iron will eventually become ferritin, but that it takes about 120 days. More of the longer half life forms tend to end up as ferritin, so it tends to end up in the brain more quickly (even though it still takes a few weeks).

As your doctor mentioned, they also have a fear of causing organ damage by raising ferritin levels too high and thereby creating a condition similar to hemachromatosis. Some of them are also concerned about the potential for allergic reactions since they don't have experience with the longer half life forms of iron used for treating RLS.

But fortunately, that is starting to change. One of the leading hematologists has bought into treating RLS and is now a very vocal spokesman for us. But, as we know with neurologists, educating the rank and file physicians within a specialty can take years, even when there are consensus documents in the literature.

If I recall the conversation correctly, there were a number of optimistic remarks regarding IV iron. Dr. Earley indicated that he’s a short way away from giving infusions at ferritin of 200 as long as TIBC is below 45%. Another doctor indicated they are comfortable going even higher than that. It seemed like there was quite wide agreement from everyone’s experience that the risk of hemochromatosis is lowZ

It is currently possible to conduct a genetic test for hemachromatosis (my doctor had me do one since my ferritin was over 400 for several years). So I would think that that old excuse should be going away.

But there was also a rather pointed and cryptic remark targeted at one of the doctors (I don't remember which) that indicated that he was the holdout that would not budge from 100. Before I retired, I chaired a committee that owned a consensus document in my technical specialty. In that role, you very quickly learn that in order to get a consensus, you have to accept things that the majority does not like, but has to be included to satisfy what can be a very vocal minority. I had to include something in "my" document that I knew was obviously incorrect, but had to be done in order to silence a very vocal critic. I then revised the document 2 yrs later and removed the part that was offensive to most of us because the critic had moved on to another position.