I'm so happy about this and it has made such a difference to my sleep and wellbeing.
I have the wonderful, supportive people on here to thank, and especially SueJohnson. Because I received such a good amount of information last year, I was able to check some of the important vitamins and minerals.
Each day I take;
Vitamin D 25ug.
Magnesium; 375mg.
And a vitamin B complex which includes;
B6; 1.4mg.
B12; 0.5ug.
I also take 100mcg Levothyroxine, and since my RLS started, I've added 2mcg of T3.
An hour before bed I take;
Iron Bisglycinate; 5mg with a vitamin C chewable tablet.
I'm aware this may not be the solution for ever, however for the time being it seems to be working. If I forget to take the iron, vit C and T3 before bed, I begin to feel the RLS twitchings beginning, so get up and take them... always, this settles my legs in about 30 minutes to an hour.
So thank you!
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SummerDark
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Thank you Sue. And thank you so much for the thorough amount of information, which I see you tirelessly giving to so many of us who are suffering from this awful condition.
As Sue said, we’re thrilled for you. It seems as though the only new things you added were the iron and T3. The great thing about the iron, as you now know, is even if you forget to take it, you can always get out of bed and do so. Within an hour your RLS will be gone. I hate to even suggest this, but one night you should try NOT taking the iron at night and just the T3. Then vice versa. Neither substance is a life-saving medication, otherwise I would never even suggest. AND, you can always take either or if the RLS acts up. Then come back on here and tell us about your results.
Welcome to the Ironman Club. You’re our 34th member.
Thank you. It has crossed my mind to try just one or the other, but the memory of those awful nights is still too fresh! I will consider it again in the autumn!
NO RUSH!!! Just enjoy your new found freedom. I started the Ironman Club 10 years ago as I and several others started getting “that night” relief from the iron. I will make you a honorary member as are the following:
These posts are very interesting. If it's the long term answer for me I'll be very happy. And thank you. I've never been an honorary anything before! 😁
This is very interesting but how does this work when you are on gabapentin?
I have to take my iron supplement in the day as I take 1200mg gabapentin in split doses from 6pm - 10pm. And as far as I’m aware, you shouldn’t take iron within 4 hours of taking gabapentin.
Am I wasting my money taking iron in the day? Does anyone have a solution for how I can take it at night?
I still wake around midnight with my RLS however, it is usually only mild and easily relieved with a little walk around the house.
Replace the iron with your last dose and maybe up the previous dose to the max? 400 at 7pm, 600 at 9pm then 56mg of iron at 10 or 10:30? The jury is out about Gabapentin and iron at same time. So I think 60 to 90 minutes will be enough of a spread for ONE night. It should work that very first night. You should not wake up at midnight with RLS. If not that first night then go back to your old routine.
I wasn’t sure. I’m still not sure, because I see somewhat scientific articles going either way. The best one said “why risk it.” It implied that you want to get the most out of the medicine. On any given night, if you can’t, then you can’t. In a perfect world, I would shoot for at least an hour in-between.
Hello, my RLS is a lot better than it was 6mths ago but I still get the sensation in my legs that at any moment it will start again. It also wakes me up several time a night. Can I take an iron supplement even though my ferritin levels are okay?
I'm really well. I completed a summer of 5k races, albeit slowly! I've lost almost a stone in weight this summer, from moving more, and am noticeably stronger and fitter, which I'm very happy about.
I've tentatively tried to find out if I still get the RLS when I don't take either the tiny bit of T3 or the small amount of iron. Both seem to be equally important.
When I used to regularly get RLS, lying in bed at night I could always tell when it was coming on. I began to recognise this feeling. It's not exactly RLS, but an unpleasant dull sort of ache which is soon followed by RLS.
Very occasionally, this pre-RLS feeling comes on, but never actually develops into RLS. If I've taken my iron and T3 there are other ways to control this pre-RLS feelings so I can get off to sleep. Looking at the list posted by Sue, I have found getting up and stretching, or massage, or having a drink of water and walking about a bit, even masturbation can help improve the pre-RLS feeling.
All in all, I'm still managing this condition quite well. If I go on to get RLS again, I'll try increasing the iron, as the amount I'm taking is tiny, so there's lots of room for adding more. I can also increase the T3, if I get my blood levels tested privately first to make sure that I'm still within range.
I also have the route of prescribed medication to try if need be, and knowing that there's so much help available in this group is a godsend.
Hi Desert. I'm even more convinced that my RLS is linked to iron. I had surgery recently and the RLS returned as I was in recovery. I had awful bruising from the surgery and there would have been some blood loss. I decided to take a full 14mg of Iron Bisglycinate per day with vitamin C in the evening and it eradicated the RLS.
Of course it did. And, OMG, only 14mg!!! I am so jealous. The lowest effective dose is the way to go. Less is more. Same is true, to some extent, with ferritin. If ferritin gets too high (ie with an iron infusion) then the iron trick is less likely to work. Hope you are recovering well from surgery 💫
All going well with recovery thank you. Some family members have hemochromatosis, so I take the minimum iron, just in case, even though I've not been told my iron levels are too high.
Can you take the codamol max strength? Calcium May help as well. I’ve used calcium citrate and potassium together and it seemed to help with RLS. Even calcium alone may help. Even a few hours of rest will allow you to get on with your day
Also, what is the name of your antidepressant? SSRIs have such a strong blocking effect on the dopamine receptors it’s hard to overcome. With iron alone.
Hi Keith. You may get more help and suggestions if you start a separate thread, describing what's going on, what you've tried and what you're taking. Your answers will be limited here as your problem is hidden within my thread.
I hope you find something which works for you. RLS is such a debilitating condition.
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