I saw a new GP today and mentioned that at some stage I would like to try an alternative to Tramadol for treating my RLS. He was refreshingly knowledgable about RLS and suggested something, which I can’t remember now, and told me how RLS was a neurological movement disorder from the same family as Parkinson’s etc etc. I asked if it would be helpful to have my serum ferritin levels checked, and he looked at my notes and said that I had had this checked (as part of a previous blood test obviously) and it was 48. He described this as low to normal, ie not worryingly low or anything. However, I’m sure I’ve read on here that we need our levels to be way higher than that. Am I right? He didn’t seem to know anything about the importance of high serum ferritin levels for RLS sufferers.
Can anyone advise on what our levels should be?
Thanks.
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MumofSam
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The John’s Hopkins doctors and Dr Buchfuhrer say it should be over 100.
I’m not sure how accurate it is to say rls is in the same family as Parkinson’s. It responds to the meds used to treat Parkinson’s (the dopamine agonists) but that is not quite the same thing.
Also, one of the characteristics of most (though not all) rls sufferers is that iron gradually leaches out of the body so your level could well have fallen since the last test. My level falls reliably unless I continually take oral iron.
wow I didn't know that (about it leeching out)!! I'm going to have my Iron checked again because i just realised I didn't questions my Doc years ago when he said my Iron levels were in the normal range...
There is a video about this somewhere online by either Dr Buchfuhrer or Dr Earley I think. Sorry to be so vague. You could probably track it down by googling iron and rls. It is definitely worth getting iron levels up - it really does benefit most rls sufferers.
I too read this on here about your iron levels should be higher, so had mine checked it was lower so I have been put on iron tablets & is now just over 100, but what does this actually mean? Does it make any difference really? Does it mean you should be able to come off Your meds now? Otherwise what use is it being higher? Does anyone know?
My understanding is that in most people raising serum ferritin results in improved symptoms - so yes you should be able to reduce your medications. I understand that there is a small number who don’t respond to raised iron levels.
I feel my symptoms have improved a lot since I got my iron up. Mine was originally about 22 and now it hovers between about 65 and 80. I can’t get it any higher with oral supplements (except once and it turned out that was a spike caused by a virus).
I am not a doctor. I get most of my information from the following sources: webinars organized by the Rls foundation; reading and looking at the webinars on the Johns Hopkins Hospital website; the responses of Dr Buchfurer to me personally and on his website rlshelp.org; occasionally, other websites; and of course reading and assimilating the experiences of others on this forum and elsewhere (there are accounts of people being able to stop meds altogether after iron infusions) as well as my own experiences.
If you don’t notice a difference in your symptoms with raised iron levels it could be that you fall within the small minority for whom iron is not the answer or that you are in augmentation.
Ha - my Ferritin level was 49 with raging RLS. Searching, searching, searching on the internet - because I knew nothing and my docs knew even less - 49 is normal! Just one sentence from Johns Hopkins saved me from DA or other drugs "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy on average improved RLS symptom after 3 months." I used Ferrous Bisglycinate daily, then weekly, now not at all. RLS symptoms alleviated but raging insomnia remains. Also from Johns Hopkins - hopkinsmedicine.org/news/me...
I ended up getting addicted to tramadol and this medication seemed also to have an adverse effect on my RLS. It took a long time to reduce the does with all the symptoms associated with drug withdrawal. I take one with 2 paracetamol in the morning and at night.
I’ve been taking Tramadol for over 3 years - probably nearer 4. I was taking it originally for sciatica, and realised it controlled my RLS. I had major surgery on my back, and subsequently tried stopping Tramadol but my RLS symptoms went through the roof. I needed it for pain and RLS then! I’ve never really been out of pain since with one thing and another, the most recent being my right foot, and I’ve recently had tarsometatarsal bone fusion surgery on it. So need Tramadol, but at some stage when I don’t need it for pain relief I’d like to try something different, as I never used to take anything.
Don’t beat yourself up if it’s working for you. It is not easy to find effective remedies for rls (as the number of people on this site testifies). As long as you are vigilant not to increase the dose indiscriminately and watch out for signs of augmentation. Maybe tramadol is the correct treatment for you for now. Why meet trouble half way?
Keep your iron levels high (pref higher than 48) - try iron bisglycinate aka gentle iron - available in holland and barrett. There is a link between low iron levels and augmentation. If you get your levels up you might find symptoms improve spontaneously and you can reduce the tramadol.
I was like you, I got terrible augmentation from Tramadol.It was only coming on here that I found out Tramadol can do that. Told my GP and he changed my medication straight away.
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