Ferritin level and RLS

Recently I have read that RLS patients can benefit from a much higher ferritin level than "other people"

It has been reported that raising the ferritin level to higher than 300 can remove the symptoms of RLS completely in some patients and significantly in others. This is according to work done by Johns Hopkins in the USA.

I have been on iron biglycinate for years trying to improve my iron and ferritin has crept up from about 85 to about 108. The article said that oral iron would be too slow to be effective in a meaningful time.

I decided that there was nothing much to lose by doing what they do so I have just had an iron infusion which means intra venous iron. These are common for anemic patients but almost unheard of in Australia for RLS patients.

Note that the normal range of ferritin as quoted by one large pathology lab is 30 to 500. Hence 300 is not pushing any iron overload limits.

I had to visit 5 GPs before I found one to really support my request for an iron infusion. She was good and contacted several specialists until she found one who was not opposed to an iron infusion as treatment for RLS. I visited the specialist and within a week I had the infusion. Because I was not anemic I had to use a private hospital so I had to pay the health insurance excess of AUD500. I have read of someone in Queensland, Australia who had it done free on his insurance so it might depend on your insurance cover, your doctor or the state you live in.

I am now waiting to see what happens. I understand that I might have to wait 12 weeks to see success or declare it a failure.

I would suggest that anyone with RLS investigates this possible treatment. Whether it works for me or not is not significant to anyone else It works for some people. I have been told that it offers total relief to about 50% of patients but there are better and worse numbers floating around.

A couple of the GPs referred to high risks in the infusion.They couldn't be specific but they variously told me that the risk was infection at the point of penetration and "other things" that I couldn't get them to specify. The specialist told me it was no higher for me that for an anemic patient. There is a very low possibility of anaphylactic shock and that is why it is recommended that you get the treatment done in a hospital or medical facility where they are prepared to handle that low chance event. The hospital told me they do about 20 - 30 infusions per day and there are many other places doing the same thing.

One specialist said "You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.Make sure your doctor understands this point." (Note Injectafer is called something similar but different outside the US)

I would strongly suggest that its worth talking to your GP about this and asking her to ring around specialists to get an opinion and find somewhere to get the treatment done. Your GP might want to read the following report.

“Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report”

Richard P. Allen , Daniel L. Picchietti , Michael Auerbach , Yong Won Cho , James R. Connor , Christopher J. Earley , Diego Garcia-Borreguero , Suresh Kotagal , Mauro Manconi , William Ondo , Jan Ulfberg and John W. Winkelman

Sleep Medicine, 2018-01-01, Volume 41, Pages 27-44, Copyright © 2018 The Authors

The text of this is at:

Good Luck

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