Hi, I am confused about how much iron to try to help RLS.
I have had it on and off all my life but now in mid sixties it is severe most nights. I started taking amitryptilene 50mg for RLS about five years ago but it seems to offer little relief and, since the condition has worsened in that time, I am slowly coming off it (interestingly, the RLS has not been as fierce over the last few weeks of reducing the dose but this may be coincidence?) . I am due to talk to my GP afterwards about considering Gabapentin or Pregabalin. (She had indicated we would be discussing ropinorole but after reading here I shall be asking to change that conversation!). However, in the meantime I have found this forum and realise the possibility that iron supplements may be worth a try? I note from my records that in 2021 I had a serum ferritin level of 46 but have never had a TSAT test, I will discuss with my doctor?
If I was to try taking an iron supplement combined with vit C now, I am just not clear from the various posts about how much to try and any specific type of iron supplement? Any advice would be appreciated.
I am so grateful to have found this forum and learnt so much from it already in a short space of time, thank you to all concerned.
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Welcome to the forum. You will find lots of help, support and understanding here.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Take two 325 mg of ferrous sulfate tablets , or 75 mg to 100 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day since your ferritin is on the low side at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months. Be sure when you take your next test to stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
TSAT should be between 20% and 45%. Being below 20% means you need iron and it is not common to be above 45% so don't worry about it. Another name for it is transferrin saturation so you may want to look for that. Otherwise on your next test ask for a full panel iron test.
Amitriptilene makes RLS worse which is why you feel better coming off it.
Hi again Sue and I’m shopping online for iron bisglycinate 75-100mg and only seeing single pills of max 35mg - sorry if his is a stupid question 🙄 but do I just double up on the supplements to make up the required dose? Thanks again,
A blood test has advised a ferritin level of just 19. The doctor was totally unhelpful as this is still within NHS guidelines (taking no account of RLS!). So predictably I am now about to try and sort myself and purchase three months supply of iron supplements, but would appreciate just one further bit of advice please? I note you generally suggest taking magnesium at a different time to iron but a lot of the iron supplements I have found seem to contain magnesium stearate as an anti caking agent. Would this be a problem, I am struggling to find one without this? Thank you again
It shouldn't be a problem but wow your doctor is so ignorant. With that low a ferritin he should have prescribed an iron infusion. I can't access NICE since I am in the US but have you checked them out as normal ferritin levels for an adult female in the UK are 24 to 307 according to welzo.com/blogs/iron-ferrit....
Did you find out what your TSAT was?
If you can afford it privately you can get one for around 800 pounds. Or you can ask for a referral to a neurologist who might prescribe an iron infusion. You might make a separate post about this as since this is 6 days old no one will be looking at it as others can advise you.
Otherwise try to find iron bisglycinate tablets that add up to closer to 80 to 85 mg of iron bisglycinate since 2 of the others only adds up to 70. If you can't then take 3 of the 35 mg ones.
Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
eanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute
Read the post by Switalskis. Your GP should expressly discuss your blood results.
Your serum ferritin at 46ųg/L is far too low for RLS. Your GP should know that by looking at NICE & NHS guidelines.
Your GP should also be aware that tricyclical anti depressants like Amitriptyline trigger and worsen RLS. That is also set out on NHS and NICE guidance.
Get off Amitriptyline slowly and educate your GP by referring them to NHS, NICE guidance, RLS-UK website and the Mayo Clinic Algorithm.
You can start iron supplements at night with vit C if your % saturation is below 45%. So call GP to ask.
Get new, up to date full iron panel fasting, morning bloods and ask for an iron infusion if serum ferritin is below 100.
Iron infusions resolve the majority of RLS and you could be med free.There are several places that will arrange free on the NHS. St George's in Tooting, the Royal Cornwall in Truro and Salford hospital. Other areas may prove difficult.
You can travel to Harley Street, London, pay around £800 & get an iron infusion at the Iron Clinic under Prof. Toby Richards. You just send up to date iron blood tests.
It will one day be first line treatment, as soon as you're diagnosed with RLS. Supplements can take over a year to get levels up.
have you seen the Iron Protocol group? It gives clear advice on timings and types. My RLS improved after an iron infusion but it didn’t go away. The Mayo Clinic says ferritin should be over 100 but GP’s think 37 is ok!! Liquid and tablet iron gives me digestive issues but I did learn that if I’m not taking it the right way (with the right other supplements) then it’s a waste. But the neurologist got me on the right track and gave instructions to my GP
Welcome. Amitriptyline triggers RLS.It put mine through the roof.I have a sneaky feeling if you get your serum ferritin level over 100 and come off Amitriptyline your symptoms will disappear.
I just wanted to add. Check your Vitamin D levels. Vitamin D plays an important role in iron absorption and metabolism. Vitamin D can also help with RLS symptoms (google it).
And, if you are low on Vitamin D, might as well through magnesium in there. There is no really good test for Magnesium, but lots of RLS sufferers report improvement.
I went through the infusion route. I now supplement daily with Iron, Vitamin C at night. Vitamin D with a fatty meal and magnesium in the morning with my coffee.
Looks like you have gotten some good advice and are on the right track.
well I’m in for a fasting blood test tomorrow for everything (full blood count) so I can check where I’m up to. So much helpful advice coming my way, very grateful thank you
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