Hi. Following my last post (in December) I just wanted to let people know that I seem to have reached a point where the iron I have been taking for a year now is having effect on my RLS!!. My serum ferritin test in Dec had improved from 22 (in March 2024) to 78 but at that point I hadn't noticed any improvement in my RLS, however I am now definitely much improved. I haven't had a bad bout for several weeks now and the occasions I have had it, it has been manageable. I've even been able to stay in bed most nights and last week I was able to sit through an evening theatre show with no problem! I'm trying not to count my chickens but I'm really keeping my fingers crossed that if I continue with my current regime I can keep the RLS ay bay or at least within manageable levels. My insomnia is still not great, but at least when I'm awake I'm not uncomfortable in the same way and I'm now in a position to try other ways of tackling this. Thank you to Sue, Jools and the others on here who got me started on the iron and a note to others to be patient if you are trying the iron approach...it's taken me the best part of a year to notice any different. My next question is should I just carry on taking iron or is there a danger of too much?
RLS Improvement: Hi. Following my last... - Restless Legs Syn...
RLS Improvement
Good news.
As far as your ferritin levels go: Oxford University Hospital's Clinical Haematology department views normal serum ferritin levels as up to 200 for women (300 for men). And above this level they are unconcerned (up to 1000) as long as (1) transferrin saturation (TSAT) is under 50%, (2) the reason for the elevation is known - e.g. because of an iron infusion or an infection/inflammation - and the level is expected to fall, and (3) there are further tests every 3-6 months to monitor.
If serum ferritin levels reach 1000+ without explanation and/or TSAT exceeds 50% you would be urgently referred for tests for haemochromatosis etc
Thanks, Chris. Sounds like I have no need to worry yet !
How much iron do you take and what brand??
I do not take iron as my ferritin levels have always been sufficiently high.
"A common oral iron regimen is 325 mg of ferrous sulfate (65 mg elemental iron) in combination with 100 to 200 mg of vitamin C with each dose to enhance absorption once daily or once every second day. More frequent administration of iron may reduce absorption" from the Mayo Algorithm
Many people find that they have side effects on ferrous sulphate such as nausea, constipation or diarrhoea. Personally I would recommend 75 mg ferrous bisglycinate (known as Gentle Iron) instead: this is available over the counter without prescription, brands such as Solgar are good but there are many.
Carry on.Professor Toby Richards spoke at our 2024 AGM about Iron.
He said it's almost impossible to overdose on oral iron.
Levels up to 1000ųg are fine.
So keep taking the iron pills.
That's great! So pleased for you. My ferritin is around 600.
Oooh!Has it always been that high or is it as a result of taking iron?
Before my RLS was a problem it was not that high and I was taking iron but it then became high and I was told to stop taking iron and it has remained high. I haven't taken iron now for several years.
And is your RLS still bad?
No. I take gabapentin which completely controls it.
I’m so happy to hear this ! I’m busy weaning off Pramipexole and will tomorrow up Gabapentin to 300 mg. Thanks to you guys I have hope ! 🙏
Continue with iron and have a yearly check up of your levels. Great news.
Great news, thanks for coming back to us.
I suffered RLS nearly 35 years. No vitamins, minerals and medicines helped me. The last five years became unbearable. Something was to be done. I reduced total amount of calories by half. And started consuming food two times daily. Breakfast 07 h and dinner (the last meal) 15h. Soon RLS symptoms began to decrease. After two months was no sign of this cruel syndrome Now, ten months later I can say that I got rid of RLS. I continue to have my meals two times daily, and it will be to the end of my life.
Wonderful news!🤞🏼
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