RLS and Iron

[Jauny]

Im 66 and have suffered from RLS since my forties. Over that period it has got gradually worse from occasional bouts to the point where it is present most of the time. Consequently my sleep has deteriorated to the point where I often only get 3 or 4 hours broken sleep at night. I can,however, sleep at any time in the day should I sit down for more than a few minutes! My doctor suggested an iron test but, perhaps incorrectly, I assumed my iron levels were OK as I regularly give blood and my iron levels are tested every time and have been ok. However, from what I've read on here, I'm wondering if I need a more specific test? I'm desperate for something that helps, so any advice would be greatly appreciated. Thank you.

[SueJohnson]

First off you shouldn't give blood. You need all the iron you can get, and giving blood depletes that, Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Jauny in reply to SueJohnson]

Thank-you for all the information! It'll take me time to absorb it all but hopefully something will help me. I'll try and find out how to fill out my profile

[Jauny in reply to SueJohnson]

Hi Sue. I have had the result of my iron test. I think these are the relevant figures but not sure how to interpret them. Perhaps you can help? All are described as normal and on looking at the graphs only the last figure (serum ferritin) is close to the lower border.

Serum iron level: 25umo/L

Transferrin: 2.5 g/L

Saturation 40%

Serum ferritin 22ug/L

[SueJohnson in reply to Jauny]

The most important one is your ferritin which at 22 is very low. Probably from your giving iron. take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 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 (gentle iron) is better. Take it every other day, 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.

[Jauny in reply to SueJohnson]

Thanks so much, Sue. I last gave blood on the 6th of Dec. Do you think that will still be impacting that ferritin level?

[SueJohnson in reply to Jauny]

Yes it still could although not as much.

[Jauny in reply to SueJohnson]

Ps this us the iron I started taking last week after the first blood test. 1 a day. Is it suitable?

Picture of bottle of tablets on the kitchen work surface

[SueJohnson in reply to Jauny]

Yes that is the iron bisglycinate I mentioned. However don't take it every day as it is absorbed better taking it every other day.

[Jauny in reply to SueJohnson]

OK will cut back. Thanks again for your help

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

In addition to raising your ferritin, you may need medicine to control your RLS, Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) 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...

Meanwhile 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender

[Joolsg]

Welcome Jauny,I agree with SueJohnson. Stop donating blood. You need that iron.

GP will tell you bloods are fine/normal, but they won't be.

We need serum iron above 60, serum ferritin above 100, preferably 200.

As your bloods are 'fine' start taking 60mg ferrous bisglycinate last thing at night. Many on here report that this alone helps their RLS.

Let us know the results.

[Jauny in reply to Joolsg]

Thank you so much. I will do that!

[wendersgame]

To say what the others have said, giving blood is definitely not helping. I went back to giving blood a year and a half ago and the night I gave it, my legs started immediately (after a period of being 'good') and it took me 2 months I'd say to get back on track after it. I have given blood once again since, but I left it a full year afterwards before I gave it again. I wanted to test to see what happened and if it was definitely the donation that caused the issue. I didn't have trouble the 2nd time, but I did have bloods done a while after (about 3 months later) and my ferritin was lower than usual, so it confirmed to me that giving blood isn't something I'll do regularly or ever again.

I feel bad for not giving it if I can, as I know it could save someone's life, but I have to be prepared that if I give it, I'll potentially set myself up for a couple of months of bad sleep! I talked to the blood people when I was there but they'd never heard anything about it.

So for the time being anyway I'd definitely stop, because 100% it won't help - your haemoglobin can be good enough to give blood, but your ferritin levels might not be, and then they are depleted further and you're going to be months then on iron tablets trying to get that back up again.

I think I will continue to give blood occasionally (I'm not 100% certain though!) but not more than once a year if I do, and only if I'm feeling like my RLS is under control.

[Jauny in reply to wendersgame]

That's really interesting and probably explains why my RLS has been particularly bad recently...I gave blood 3 weeks ago. Thanks for your help. Do you take the ferritin supplement suggested by Joolsg? How have you got the RLS under control?

[wendersgame]

I have my RLS mostly controlled ny keeping my ferritin up. The highest it has ever been is 78 I think. I was mid 60's at a blood test 2 months ago and I believe that drop was after giving blood in July. For me, adherence to taking iron is my biggest weapon to fight it. I am not completely free of it. I had a couple of episodes last week in fact that came out of nowhere and then I've been fine again for a week. I consistently take Iron now, and find for the most part that's all I need to do. I accept it isn't a quick fix and it doesn't always help, but I'm SO much better than I used to be.

RLS can trigger night terrors for me as my legs can wake me at the wrong time. Interestingly I had an awful night terror last night but didn't end up having to pace the floor. For me, keeping RLS at bay is a big part of keeping night terrors away too .

Here is the Iron I take. I find this great as it is the kindest on my stomach so I can take it daily without all the issues that normally come with Iron, but it's better absorbed so I still get the benefit.

Active Iron 30 capsules

[SueJohnson in reply to wendersgame]

I may have already told you this but it only has 25 mg of elemental iron whereas the normal amount is 65 mg so you might want to try taking 2 of them perhaps at different times if you find it bothers your stomach.

[wendersgame in reply to SueJohnson]

Thanks Sue, it's the Galfer that really bothers my stomach, and I've taken Ferrograd C which wasn't as bad, but it was the pharmacist who recommended I try this one - he did say it had less iron (which worried me at first), but said it had something in the formulation that made the iron that was there, be absorbed better (so even though it was less, he reckoned more was absorbed) . I'm not entirely sure on the science behind it, but I've been good on it - I'll have a look at the packet and see if I can take more than one, and if I can I might try the different times of the day.

[SueJohnson in reply to wendersgame]

Looking at the label showing what it contains that would increase absorbency is ascorbic acid or vitamin C . If you take it already with Vitamin C or some orange juice that wouldn't help any more. It is ferrous sulfate which bothers many people, Ferrous bisglycinate (gentle iron} is what is recommended in that case - 50 mg. If the 2 tablets of Active iron bother you, you might want to try that.

[wendersgame in reply to SueJohnson]

Thanks Sue, yes like you I was confused about the formulation as to what could make it be any better absorbed. It's a bit generic when you try to read up on it - it's a shame it takes so long and blood tests to see how quickly a product works. All I know is that I'm consistent taking it as it doesn't affect me like the others did, and maybe that's all it is - I'm better at taking it (rather than missing days, then forgetting to take it with the other ones) that's making a difference. I did get gentle iron to take for a while, and picked up some in the US when I was there, but it felt similar to what this does. I wish it was an easier process to see what they're doing!

[wendersgame in reply to wendersgame]

Could this be why I stick to it better - the capsule type making it less upsetting on the stomach, as I'm thinking 25mg every day is better than the higher does taken randomly (and in my case many times forgotten!)

active iron information

[wendersgame in reply to wendersgame]

Just a bit more bumf here... it doesn't really say why it would be 2X better absorbed, but alludes to the fact it's where it is absorbed (i.e not in the stomach but further along?). Who knows, I just know I quite like it as a product, but I don't understand to be honest why it should work when it's a much lower iron content!

active iron description

[SueJohnson in reply to wendersgame]

If you like it and stick to it that is what is important. I take back my suggesto\ion to take it at 2 different times. I forgot that hepciden is released when you take it preventing iron from being absorbed for 24 hours.

[wendersgame in reply to SueJohnson]

Yeah it's hard to know what's best - I found the gentle iron good as well, I'd say for me the two are similar, so I'll get what I can when I can (I usually avail of a BOGOF offer on the Active Iron as it's great value when that comes up!). I would love it if either brought my Ferritin above 100, but so far neither have. I asked my GP for the transferrin at my last blood test and he said it was unnecessary, and also my ferritin was in the late 60's and he argued that was perfect. I could see no point arguing as it was definitely falling on deaf ears, so for now... iron tablet it is!

[Jauny]

Thanks a lot. Fingers crossed it works for me!

[wendersgame]

Give it a try, there's nothing lost - just don't expect overnight miracles with the iron tabs. They take a good while to get into your system and raise the ferritin enough to make a difference, but if you start now, in a few months you might be glad you did! Good luck!

[Legquake]

I have experienced the same. It can be exhausting. I take a pill but started taking iron supplements as my blood test revealed I was on the low end and it has helped. Hang in there, you aren’t alone. Have your blood tested and discuss supplements with your doctor.

[SueJohnson in reply to Legquake]

What was your ferritin?

Take you iron 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.

[dklohrey]

Recently had my annual physical with the accompanying blood work. My ferritin levels over the years have usually been around 60. About a year and a half ago I started eating fish three times a week as a means of cutting back on calories, not paying any attention as to how this might affect my iron levels. I was shocked to see my ferritin level reported at 240. Now, this has not affected my rls but it might for some. I then checked on the internet and there it was- fish, a good source for iron and one in which is easily absorbed into the system. Amazed!