Restless Legs Syndrome (RLS) Discussion Board

fuz_mind wrote:...
I "suggested" to my neuro to email one of the authors and he did!

He emailed Dr Richard Allen who reverted very quickly apparently - in a nutshell, in whatever email correspondence they had, my neuro is now convinced that he should have given me 1000 mg (he clarified the guidelines..

Thanks for the update, it was important to get that clarified.

Folks, I'm very very interested in this discussion about ferritin levels. I'm confused though about the talk of iron "infusions" vs simply taking iron oral supplements. Why are folks having to do these infusions? For background, 2 1/2 years ago I had symptoms of RLS, had severe insomnia for about 2 weeks. Doctors tried gabapentin, pramipexole and another I cant remember, nothing worked. I rediscovered marijuana and bingo! Problem solved if I smoked at night before bed. I didnt even need to do it regularly. Just a few times and my symptoms went away. I then used marijuana very infrequently, maybe once every few weeks. Recently my symptoms have come back though. I looked back at blood tests that were done 2.5 years ago and it shows ferritin level at 42 which supposed is in the "normal" range (30-400) although I guess it's still pretty low? My iron level was 95, normal range shows 59-158. I guess my question is do we know that low ferritin is DEFINITELY the cause of this? Will taking iron supplements, pills, raise my ferritin levels?

steve7 wrote:Folks, I'm very very interested in this discussion about ferritin levels. I'm confused though about the talk of iron "infusions" vs simply taking iron oral supplements. Why are folks having to do these infusions? ...

Ferritin is a test that is used by doctors to determine the iron status of the blood. You might think that the BLOOD iron status indicates the amount of iron in the body, but it doesn't. Unfortunately, the ferritin is the only commonly used iron test.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. Oral iron usually doesn't increase the iron levels in the blood to help. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the guidelines:
https://www.sciencedirect.com/science/a ... via%3Dihub

He emailed Dr Richard Allen who reverted very quickly apparently - in a nutshell, in whatever email correspondence they had, my neuro is now convinced that he should have given me 1000 mg (he clarified the guidelines, which is as what stjohn said basically); over and above, all the stuff I have been trying to talk to him about like rate of feritin decline (which he had not taken me seriously previously)

Dr Allen is a gem of a man. He and Dr. Earley have both said they welcome enquiries from other doctors, and would love to get the word out about how to treat WED/RLS with IV iron. So wonderful your doctor took your advice to contact them! Wish mine would