Ferritin

[Memmy]

My ferritin level is 110 but I still have a squirmy leg. Should I get my level higher or for me its nothing to dp with iron?

[Hidden]

I don't really know Memmy. I have read that low iron stores is only a factor in RLS in about 22% of sufferers. I've also read about people with very high ferritin levels who still have RLS.

Perhaps, it just doesn't work for you.

Sorry I can't say, you must be disappointed.

[Memmy in reply to Hidden]

Im not disappointed as I really dont think much can be done. Until someone finds a cure we have to suffer. Im disappointed however with lyrica. Im up to 300mg a night but unless I take a tramadol it doesnt work at all. Im considering going back onto mirapexin as it gives me complete relief and than when I augment I'll go through the whole torment again of coming off it

[Graham3196]

As far as I know there is no test to see if your RLS will be relieved by increasing your ferritin level. The only way appears to be is to increase it and then see if it works.

According to Johns Hopkins research and supported by Dr Buchfuhrer, the first line of attack is to raise your ferritin level to about 350 and see what happens. They mentioned a fraction of about 80% getting some benefit. Raising it to 300 can only be done practically by an iron infusion.

The problem seems to be who pays for the iron infusion. If your ferritin level is above about 50 ( or 30 in some places) then you are not anemic. An iron transfusion is usually only paid by your health insurance or by government health services if you are anemic. Not if you have RLS. In my case in Australia this cost me about AUD500 I considered this money well spent but it is a lot of money. You always need expert guidance with iron to make sure there are no other medical conditions that preclude an iron infusion.

If you can;t get an iron infusion then you may as well try to raise your ferritin as much as possible with oral supplements but it will be much slower and might not reach a high level. The preferred oral supplement is iron biglycinate and its reported in this forum that the best way to take it is to crunch up a vitamin C tablet in your mouth and then add the iron tablet and swallow the lot together. It is said that the maximum rate of increase in ferritin is achieved if you take the iron every second night.

I don't think there is any reason why you shouldn't take magnesium in parallel with the iron. I originally found that magnesium made my RLS worse but magnesium biglycinate doesn't do that. I take it for cramp and it hasn't done any good for my RLS. That doesn't mean it won't help you.

Good Luck

[Memmy in reply to Graham3196]

Thanks. I'll try and raise it

[Hidden in reply to Graham3196]

Have you tried Heme Iron? I have heard that it works with copper regulation.

[marsha2306]

My ferritin was 70 and my doc (the specialist at Hopkins) ordered an iron infusion. It raised my ferritin to 650 but RLS really never improved. Also, magnesium made it worse.

[Memmy in reply to marsha2306]

Thank you. Sorry to hear that your rls hasnt improved.

[Restless1967]

I had an iron infusion when my iron was 52, even through they said I was not anaemic and it cured my RLS. My levels went up to in the 300s. The hospital told me that it would have been impossible for me to get my iron levels up to this sort of level with tablets. It has worked for me and I think it is worth trying as it could work for you. I noticed an improvement in my general feeling of well being the next day. Before that I used to wake up in the morning after a disturbed night and had a feeling that i was really ill. I still was not sleeping well but then had to wean myself of Ropinirole ( Requip). This was a really horrible experience but after about 6 weeks I felt much better. It made me realise that the medication had actually been making my symptoms worse ( Augmentation)

Good luck

[Memmy]

Thanks. Im also beginning to feel that maybe the medication is causing more problems. Hope you still feel well

[Icansawmyfeetoff]

Mine came in at 135 so not my iron......