Restless Legs Syndrome (RLS) Discussion Board

I have rls for years
Tried to stay off medication. Did get my blood ferritin levels up. Different magnesium, GABA,foot massager checked my veins and did over knee stockings etc. a lot nights got 1or 2 hours sleep. My sleep doctor got me on gabapentin. I m not to happy about it. I listen to a podcast from Matt walker where he talks about ferritin in the brain that’s the problem not in the blood. My blood ferritin is around 80. I asked my neurologist (I have a chant) and he really didn’t give an answer. Told me go to the sleep doctor who doesn’t know about brain ferritin.
I have big hopes that is the answer to rls

The RLS experts generally agree with what Matt Walker said in his podcast. Research at both Johns Hopkins and the NIH indicate that low brain iron is responsible for both the movement side and the insomnia sides of RLS. I have heard Dr Earley of Hopkins state that blood ferritin is a poor indicator of the level of iron in the brain, but that it is the only current measure that they have. I understand that research is underway to develop an ultrasonic tool that will accurately measure iron levels in the appropriate segment of the brain, but that is not something that we will probably see available for a while yet.

For some, increasing ferritin in the blood helps improve their RLS. This is why iron therapy (oral iron or infusions) are now the first line treatment. Unfortunately, about 30% of us do not benefit from increased blood ferritin. Other research is being done that indicates that those of us who have high serum ferritin and still have severe RLS may have a problem with transport of iron across the blood-brain barrier, possibly due to genetic issues with the protein that is responsible for metal ion transport across the barrier.

My blood ferritin is around 80.

80 is pretty low. People with WED/RLS are advised to try to get it up to 100

There is a link seen between iron deficiency and RLS in the latest medical literature. Whether there is a cause/effect relationship is anyone's guess. Maybe people with iron deficiency and concurrent RLS is just the result of lack of sleep resulting in poor diet. Just not known. My RLS is pretty much under control for several years with strategic stretches, but it is interesting that my blood counts are a borderline low and have been for years, and my red cells are slightly smaller than normal (MCV). I think it is just a genetic variability and is seen in many older people (I'm 76), but with the latest information showing a possible link between iron deficiency and RLS, it makes me wonder. Maybe I will get a serum ferritin level, but my primary doc thinks what I have is just a genetic variant in blood count or is normal for my age, and he is a very good internist. We'll see. I do think that anyone with RLS and proven iron deficiency should definitely take iron supplements.

Although it is still technically theory, Dr Sergei Ferre at the National Institute of Health was able to demonstrate a connection between low levels of iron in the substantia nigra portion of the brain and a down regulation of the adenosine receptors. The adenosine receptors were also shown to be hetromers with dopamine and glutamate receptors in the same region. This would explain why RLS involves both a dopamine driven need to move and a glutamate driven form of insomnia that doesn't respond to the sleep aids used to treat other forms of insomnia. Further, clinical trials that were conducted in Europe with dipyridamole, which is an adenosine reuptake inhibitor, helped treat mild to moderate RLS. Dipyridamole will probably not end up being a new type of RLS med (even though it is already available as a heart med) but it could open up new lines of research for similar meds that would be more effective for RLS.

As for other work, Johns Hopkins had done extensive research into the role of iron in the brain starting with RLS cadaver brains from the brain bank and now looking at innovative ways to measure iron levels in living patients using things such as research grade MRI machines and innovative ultrasonic testing. They have also demonstrated that anyone with ferritin levels below 75 has the potential for benefiting from either oral or IV iron therapy.

Finally, there is work being done looking at the specifics of the iron transport mechanism across the blood brain barrier, which is far more complex than simple ferritin molecule diffusion through the cell wall. Some of this work indicates that there is a genetic component, which could explain I can have a ferritin level over 600 and still have very severe RLS whereas others can have their RLS almost disappear by having their ferritin increase from 40 to 80.

Fascinating. Adenosine reuptake inhibition. A magic bullet ahead? Thanks, Steve.