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 ! 🙏
How much Gabapentin do you take Sue? And is it taken at bedtime?
I take 1800 mg. 600 mg at 5:15, 600 mg at 7:15 and 600 mg at 9:15 and go to bed at 10:15.
Sue, have you heard about that Gabapentoids could cause dementia?
Very very rare - 1.5%
Thanks, perhaps but still concerning.
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.
Are you Vegetarian? What do you have for meals ?
No. I am not vegetarian. When I had RLS I imposed some restrictions and bans on differend foods. But it didn't make sense. No effect. I realised that my problem is not the quality of the food but the quantity. When I had some food in my stomach at bedtime it made me nervous and pushed RLS. Especially slow absorbed food like porc meat, oily cheeses, raw nuts and seeds. Also foods rich of fibres worsen RLS because create gases. And irritate my nervous sistem. To avoid all that I was forced to move my dinner to earlier hours. No later than 3 pm. So little by little the RLS began to fade. My body still resisted and I felt a lot discomfort. Already I knew there is no way back, and went on. May be after two or three weeks I felt significant relief. Ten months later I accustomed to this regime to such degree that now I eat nearly everything, drink wine, coca cola, coffee. Anyhow I don't eat very fat meat, all fried products, sugary foods, muffins, donuts, chocolates, chips. And before and now I make physical exercises, more or less. RLS totally disappeared.
Yes, thank you, OMG, we on here know that it’s not so much what we eat, but when we eat it. Eating is such a social event that I bow down to your ability to stick with it. Severe calorie restriction is well known to up-regulate d2 receptors. And man, do we ever need up-regulating. Doctors should know about this. Maybe they do, but also know patient compliance would be low. Ever see Hitchhikers Guide to the Galaxy? And how it took a supercomputer about a 1000 years to come up with the answer to life, happiness and everything. The answer is…..wait for it………………………………..42.
Severe calorie restriction between sun up and sun down = 42, in terms of RLS. It is THE answer, so I think. Will it work completely for someone on SSRIs? Probably not. Will it work completely for someone coming off a 5+ year stint of high DA use? Probably not. Maybe eventually. Or someone with Chronic Kidney Disease or MS. Probably not. But these exceptions do not take away from its validity.
This is a very confusing article but it shows that calorie restriction can up-regulate receptors and is ESPECIALLY important to the aging brain. Or the aging mouse brain. Our lousy receptors get even more lousy as we age, so your protocol is quite important to know and possibly undertake.
Listen, what. Severe calory restrictions aren't necessarily always. May be optimal restrictions. When you go to bed you must be calm and satiated. Each hunger provoke RLS. If you feel hunger, try to satisfied it somehow. But with something very small. Banana is excellent tool. One potato or one slice bread. Don't drink any juices.
How are you ever satiated at bedtime when you eat dinner at 3pm? Unless bedtime is 8pm. Which is probably pretty much the time prehistoric man fell asleep.
This too. healthunlocked.com/rlsuk/po...
My advice is directed mostly for people over fifty , which metabolism is slow, and digesting is dificult. Just stop eating too much. Free yourself from fucking exesive food. Leave your body to relax completely between 10pm and7 am and then occurs miracle. Also, do some exercises, do it consistently. To increase health improvement.
Wonderful news!🤞🏼
Can you share what your regimen is? What kind of iron, what dosage, when and with Vit C or something else?
I take 1 of these iron tablets with a vit C tablet and a probiotic. 2hrs after eating and an hour before...which is usually about 9.30pm. Sometimes, I take them about 2am if Im wakeful and eating regime hasn't left enough time to have them before bed..
Daridexorant / quvuviq and RLS
Glutathione for RLS
Iron, estrogen & RLS
total knee replacement triggering RLS
Accupuncture and RLS
