Hello, I am currently waiting patiently (!) for my follow up appointment after my sleep study with my neurologist. I have been drug free from Ropinirole since July 2016 and am currently managing my RLS (just about) with iron, magnesium and the occasional Tramadol.
My question is when I should be taking the supplements (Ferrous Sulphate and Calcium Citrate) to gain maximum effect? I have just read 5 articles and they all recommend different things. Some recommend taking them together, some apart, some in the evening. Does anyone have a definitive answer?? There is so much information out there it is difficult to know which is best.
Thanks
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Pam34
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I get mine on Amazon, (Gentle Iron), but it can be got on the high street at the likes of Holland and Barrett.
There can be info overload but if I were you I'd search through this site as there is some absolutely fantastic information on it. In fact I'd go as far to say don't bother with google for RLS look through this site - UTFSE
Thanks Raffs and I do, I check on this site every day and use it to try and educate my doctor! I follow you and several others and tend to defer to what you say, but even on here there is a lot of speculation and hearsay.
I've just read the link you sent me on betternutrition.com and even this contradicts what the livestrong.com website said.
Better nutrition - High intakes of other minerals, particularly calcium, magnesium, and zinc can interfere with iron absorption, so when treating iron deficiency, try to take iron without these minerals. In contrast, vitamin C enhances iron absorption.
You see my confusion!
PS - My ferritin level was 70 in September having increased from 29. I'm due another test in March. How do I know when to stop the iron supplements and then how do I maintain the level? I know too much iron an be dangerous but I feel it is helping somewhat so I don't want it to slip down the scale again. I've been drug free for 6mths and I feel the iron has helped but recently the RLS has cranked itself up again. I'm waiting for my follow up appt with the neurologist after my sleep study but after my experience with Ropinirole I can't say I relish whatever comes next but neither am I naive enough to assume i can carry on drug free for ever.
You can't go by the blood levels of Iron as the problem lies in our inability to store Iron in our brains so we then can't utilise the dopamine, (people with RLS were found to have high levels of dopamine on autopsy!).
Congratulations on being drug free, (or fair f**ks as they say around here ), I want to go that way but it doesn't seem likely, mind you that wont stop me trying.
There is someone on here, their name escapes me but they seem very knowledgeable on Iron, (Madlegs1 comes to mind also), much more so than me, the search engine will lead you to them.
Thanks Raffs. Crikey I've just checked that list and immediately have them all!!!
It is good to be drug free, my experience with Ropinirole was enough to put me off off any drugs for some time but I am realistic enough to assume that I may not be able to manage like this forever. I think I just felt so much better being free of Ropinirole and then the iron also alleviated a lot of the RLS, but I think things are now catching up with me and I rarely sleep for longer than an hour or two at a time, then I'm up but can usually return to bed within half an hour. But I'm not pacing the floor for hours and I don't have any pain which is a huge bonus.
See what comes next when I get my follow up appt with the neurologist - Dr Buchfuhrer recommended Pregabalin but I have my reservations when I read reviews on it. But I suppose you can read a bad review on anything and that's the one that sticks in your mind.
I have had good results with iron (Albion - ferrous bisglycinate chelate) taken on empty stomach w/Vit C, mid morning. Combining with probiotic LP299V (increases iron absorbtion). Article here cambridge.org/core/journals...
Ferritin levels of about 100 seem to be the magic number with Saturation Levels over 25% to decrease RLS symptoms.
Thanks for this, I'll read when I finish work. Be interesting to see what my ferritin level is when I next get it checked. At the moment the ferrous sulphate I take is 200mg strength and I take 2 a day. Presumably when my ferritin has reached the desired level (100) I can then take bisglyinate to maintain it - 1 a day at 20mg. Is that how it works?
My ferritin level was over 100 the last time i had it tested which was just a few months ago. i didnt take any iron pills for it to reach that level and i still had/have RLS. Shows how different we all are when iron is the subject.
I am so intrigued by the iron connection. From Johns Hopkins RLS page "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." That said - it's obvious from you and others that "It is possible…that there can exist an iron deficiency in the tissues in spite of normal serum iron." I have been taking the Probiotic LP299v which as lots of studies linking it to increased absorption of iron. Maybe even micro doses (5mg-10mg) of the ferrous bisglycinate chelate could help RLS sufferers with a more readily available iron to get into the brain - even with normal Ferritin levels. And, pray tell why was I or anyone else deficient in Iron in the first place?
I dont really know why my ferritin level read as 108 some times an infection can alter the numbers. I have Primary RLS, and its seems that people with Secondary RLS can benefit from taking iron to elevate their ferritin levels. BUT, it doesnt work for everyone. I question on whether Primary RLS can also benefit from taking iron, as websites always say Secondary RLS. Now if only we did know why you or anyone else needs to keep a ferritin level higher than "normal" people. Something to ask an expert and thats not me.
Fascinating stuff! Here's a couple of articles. This one - consider Ferritin Levels and also Ferritin Saturation levels. Sat. Levels <20% are indicative of RLS (mine was 23% - close enough). ncbi.nlm.nih.gov/pmc/articl...
Wow, so much to digest. Like I said before, we know so much about RLS, not only the brain iron deficiency and diminished dopamine transport system but all the many drugs and conditions that aggravate RLS. Not to scare people but I predict that in the near future researchers will find that not only do the DAs temporarily down-regulate our receptors and make RLS worse but so too do the opiates and even gabapentin. On another forum (not even for RLS) a woman posted how she developed RLS for the first time in her life after about a month on Neurontin. Someone responded that she, and her mother, both developed RLS after they stopped Neurontin for the first time in their lives. She stated that after about two months the RLS vanished for both her and her mother. On the bright side human clinical trials are about to begin for a unique transdermal iron patch (there's actually a non-prescription one available) for anemia. A patch would be great for people with RLS who might have a problem absorbing iron from GI tract or those who find that the iron pill poops out on them after about 3 to 4 hours. The patch would deliver iron slowly over 8 hours.
hi I have just received a letter from my appointment with a neurologist he says in the letter.(by the way my GP will receive the same letter) that my ferritin levels are very low 92mcg/l well I no for a fact that your ferritin levels have to be above 50 preferably over 70,so in my mind the neuro hasn't a clue what he's talking about, I also told him that I was allergic to opiates(makes me itch terribly) so what has he told my GP to prescribe to me OPIATES in a different form. says a lot for a neurologist, if you want any info the best place is to look on this site, the people on this site no more about RLS than any medical profession.
Connie, as long as your doctor gives you permission, and since they insist you are deficient, you might want to give one iron pill (ferrous bisglycinate) a try. Only at night and only on an empty stomach, away from all other medications and supplements. Much luck.
Several of us on here have found the form of iron bisglycinate to be good. It is easily absorbed and non-constipating, both features of which are important. I use Solgar Gentle Iron, 25 mg. Not expensive and widely available brand. Take it at night - if you take it during the day it will not still be in your system at night time when you need it.
I also take calcium/magnesium at night. (I use a brand called Bone Up.) But I will say that tho calcium/magnesium are good and necessary, my RLS did not get so much better until I took the iron regularly. For me, it made all the difference. I also do not take any drugs.
Hi lauraflora, I have read that calcium inhibits iron uptake so I take my calcium/magnesium/zinc supplement earlier in the day & take the Gentle Iron and a probiotic containing L. planerum with orange juice (for the vit C) at bed time. I rub magnesium oil onto my legs at bed time.
I am still new to experimenting to find an effective regime for myself.
Hi Oolong, the legs have been improving although I haven't used teh magnesium oil for a day or two.
For 2 nights now alongside the 20mg Solgar Gentle Iron I have taken Solgar Probi 20 Billion L plantarum LP299v instead of the 10 billion probiotic mix, Probio7*, that I was on before & am having some nausea. I'm going to switch back to the Probio7 tonight to see if the nausea disappears. If not then the iron may be the culprit.
*Bought this one in Holland & Barrett solely because it contains L plantarum
Hi Oolong, A reduction in the legs to very mild: I got to sleep & stayed asleep!! Although this was after taking 2 Co-codamol tablets just to prevent the mild feelings from escalating (particularly if I couldn't get to sleep quickly). I didn't take the Gentle Iron & LP last night & the nausea has disappeared. I may continue not taking until I can feel the legs coming back.
You know, Pam, sometimes I do take the calcium earlier in the day. I will have to pay attention and see how that affects things. Sometimes I feel the RLS a little more, and other nights I do not feel it at all. I wonder if that coincides with what you say about the calcium and iron issue?
Hi and thanks for all your replies. I actually saw the neurologist on Sunday - surprise cancellation (8am!!) He had the results of my sleep study that I had done in November - no surprises there - it just confirmed RLS and poor sleep patterns as a result!
I found him very supportive, we decided on no further drug treatment at present but to maintain the iron and the good sleep hygiene. I currently take the Ferrous Sulphate 200mg twice a day and he suggested once my levels were over 80 (79 at last test) then I could stop that and try a supplement (maybe the Solgar gentle iron that you suggest) and have regular tests to see my levels are being maintained. I also take calcium in the morning and magnesium at night with my iron tablets. He pooh poohed the magnesium but I'm continuing it - not sure if it helps but can't rule it out.
I feel so much better than I did last year, I think the iron has helped, but I also think that the Ropinirole had worked against me for so long that I hadn't realised how bad it was until I stopped. And the withdrawal was not something I want to repeat - symptoms lasted some months after my last tablet, I have never felt so low and full of despair. So anything after that would be an improvement. I'm not naive enough to think that this is the cure, I still get RLS every night but it is more manageable. I never sleep for longer than 2-3 hours (sometimes only 1) but I find that usually a quick walk round (and sometimes food unfortunately) and I can get back into bed and go to sleep. Before I could be pacing the house for hours.
This may last or it may get worse. If that is the case then he has suggested I return to my GP and try Pregabalin. In the meantime if I can manage without drugs I will but I know I am lucky if that is the case. Drugs are the only option for many of us. Why or why can't they discover a drug that does the job and has NO side effects?!!!
I see the neurologist again in 8 mths, in the meantime I am fanatical about my sleeping habits, my diet and any other small thing I think may help.......
Ps _ I still have a supply of Tramadol for emergency - I'm thinking of flights, long car journeys etc......
Pam, you can't see but I am standing up and applauding. I just wanted to let you know that doctors are getting away from the twice a day dosing with iron to raise iron levels. It's all about ABSORPTION. With that very first iron pill of the day your body/liver releases a substance called hepcidin that stops much of that second iron pill from being absorbed. Within a little over 24 hours the hepcidin. You certainly can continue with your current regimen but many people find complete relief by taking one nightly tablet of ferrous bisglycinate and it too will raise your iron levels. Should be taken on an empty stomach away from other supplements.
Hi Like you I am suffering RLS but also its in my arms shoulders hands, 3 hrs ago I couldnt type. I am afraid I didnt suffer from these symptoms until I started taking Tramadol, I was on a large dose 8 a day and sometimes I took two in the night, when that happened a little light went on and I realised Tramadol was controlling me, after a bug infact two at once, I couldnt keep the tablets down, I went into the RLS BODY was crazy, shivers sweats jumping up and down on the bed, burning in my feet and hands cramps. The hospital got me on a drip because I hadnt eaten for 9 days had a dreadful cough, and sickness. then with in two days I started calming down and all symptoms eased. When I left hospital, I started to notice some symptoms coming back, so I rang my Doctor, and she said there wasnt anything they could do for me, if I came off Tramadol's, so I have been battling with the side effects, I felt suicidal, no sleep for weeks, I am off most of them just two a night now, but I decided to have a glass of alcohol and the first night in weeks I slept for a broken 8 hrs, at 11 at night, instead of being worn out and no sleep if a small sleep at 9 in the morning. so although I know alcohol is not a replacement, at the moment I need it to sleep. Please dont use Tramadol, in my case they build up in your system over time, you can get itchy and the symptoms I have. I dont recommend Tramadol to anyone after the time I have had. If it causes irritable L S surely if you have it, its not a good drug to be on long term. I have irritable everything, and will never take it again. Hope you get good help. Chris Richards.
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