Been trying the 60 mg iron bisglycinate for over a week now and the first 2 nights it worked a dream but every other night since has been hell again 😫
Iron not working : Been trying the 6... - Restless Legs Syn...
Iron not working
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Rangers52
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If you are trying DessertOasis method it only works for some.
Yes I am and its not working unfortunately so should I try every other night at the same dose?
As SueJohnson says, the 'every night' ferrous bisglycinate only works for a minority.It might have been placebo effect for the first week.
It works 100x more often than an infusion. Infusions essentially never work. I’ve never ever seen a person get an infusion and throw away their meds, or even lower them. Isn’t it UNBELIEVABLE how well and often the iron at night does work? If the iron ant night isn’t a gift from above, I don’t know what is. Do you not agree?
Nit working yet but im hoping and praying it will eventually
Well I have. Two people here in London that I've met personally.
I know one was anemic. That’s an exception to the rule that infusions don’t work. We on here have a dismal record.
No, because it doesn't work for the majority.
It’s the science behind why it works. That understanding can then open up a whole new world in terms of treatment.
Let us not forget how far this treatment has come. Everyone from Nightdancer (12 years ago) to Manerva (three years ago) telling me it can’t possibly be of any benefit to anyone. Manerva was particularly recalcitrant-claiming it is a biological impossibility. “Pure lunacy”. The same thing the general populous said about a machine that flies or a man on the moon. Yet here we are. That “minority” only that it has helped may very well have had their lives saved by it. I know one person who was this close (-) to starting a DA but for the iron. See below.
I am utterly revolted by the fact that you and Sue downplay it every chance you get. It creeps me out.
healthunlocked.com/rlsuk/po...
Bit dramatic. I certainly do NOT downplay it. I suggest it to people to see if it helps.And I point out that it does NOT work for everyone.
Sorry to contradict you. Every time my RLS gets worse my doc sends me to have my ferritin etc. checked and if the numbers are too low sends me for an infusion. It does help me. Might not help some but it does help others. Takes about 6 weeks to work & show benefit.
Keep up the good work
Yes
Ok im taking it 1-2 hours before bed with orange juice is this correct?
Yes. Take it 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. 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.
Thank you im also slowly coming off paroxetine im down from 20 mg to 15 been doing that for 2 wks now so I'm going to try taking 10 mg and see how it goes
🤞
Bodily serum ferritin has little to nothing to do with RLS, unless you’re anemic. Don’t waste your time trying to further raise your healthy iron stores. Like I said to you two weeks ago, as well as 6 months ago when you first started the iron (?), the SSRI is a wild card. It’s a battle between the iron and SSRI such that on any given night one or the other might prevail. Someone was on here recently who found that 80mg of the ferrous bisglycinate seemed to help. Not sure if that amount would be of benefit to you.
I'm reducing the paroxetine slowly as I'm worried about the side effects so hopefully I will be off it completely by the end of the year
Ranger, I’m not advocating for you to come off completely. My thoughts on the matter have evolved as I’ve seen people able to stay on the SSRI with the iron and a low dose of a weak opiate like codeine or tramadol. I especially don’t like it when I see people come off the SSRI then have some unresolved depression issues.
My next chat with the doctor I will be asking for a lose dose opioid but not sure how that will go.
You need at least 60mg of codeine or 100mg of tramadol. Don’t leave till he prescribes. Let the police drag you out of there.
Isn't 80mg rather high? I don't Want to overdose on iron 😫
Yes and no. I take 56mg at night. If I still have RLS I take another 18mg more of a quick dissolve in your mouth kind of iron for a total of 74mg.
You won't overdose on 80 mg
Why does those studies talk about 60% of people benefiting from an infusion? Anyways I had an infusion 7 weeks ago so am now going to wean myself off my meds and then I will report back
Are you on an SSRI or birth control - even the ring?
No, none of those things. I’ll certainly give the iron bisglycinate before bed a go though if the iron infusion does not work for me
Ranger, I’m seeing an eerie pattern. The ferrous bisglycinate seems to poop out (at different times - sometimes after days, sometimes after weeks) with people taking too high a dose. Try skipping a few days then reintroducing at a lower dose - 28mg?
The iron works more often and better than Gabapentin.
I sense that I might be a step behind in this discussion, but I thought iron supplementation can take months to show results? I am about a month and a half into taking iron every other day (at the dose Sue recommends) and definitely feel better. Not all better for sure, but I'd subjectively say 50% better (for reference, RLS used to wake me up 1-2 times a night and now mostly doesn't wake me up, but if I do wake up (usually because I'm hungry) it can be relatively difficult to fall back asleep because of RLS). Of course, I'm trying other things too, but at this point I believe I've narrowed the reason for my improvement down to either the iron, turmeric (taken at least 12 hours from iron), or maybe eating less sugar (big maybe on that one, because I've only reduced sugar about 25% and didn't really have that much to begin with). I definitely don't and didn't notice a difference from when I took iron early on or a difference between nights when I take it vs nights when I don't. (my ferritin was 80 at start and I'll test it again in about a month and a half).
Just glad you’re better. And you’re right, I don’t think serum ferritin level has anything to do with RLS. It has to do with something called serum iron - this kind of free-floating iron in blood that keeps the dopamine receptors chugging along. When it plummets at night we get RLS. We have little to no brain iron reserves to fall back on as the non-RLS world does. And we have lousy dopamine receptors to begin with which only makes matters worse.
I take it you have probably posted on this within the archives. Any chance you have the link? If not, no worries, I'll do a search and find it. I'm curious to learn more and if there is a blood test for levels (although, I'm guessing not if it's something that plummets depending on the time of day).
hello - I can just say I had an iron infusion six weeks ago on Friday - I was told that if it did help it would take six or seven weeks because this is how long it takes for the brains iron stores to change.
For the last four nights I have had hardly any rls and have been making myself wake up to take my medications which I normally spread throughout the night.
This has been unheard of for a four year period where I have had rls consistently throughout the night - rarely sleeping for more than two hours at a time….( Regardless of what medication I’ve been on).
So whilst it is very early days and things might well revert back to their ‘normal’ state I would suspect that the infusion has helped.
I first had severe rls during my first pregnancy when I was severely anemic so the root cause of my rls would seem to be that event which created some kind of neural pathway in my system. That is why I felt the infusion might logically help. Other people have different root causes for their rls and this might explain why different things work for different people.
Anyway that is my experience so far …
For me the iron at night did not work and upset my stomach quite dramatically the next day -even the very gentle iron - so after a while I stopped taking it.
Seriously bad night last night, I just want to take a knife and cut my legs off 😩
Horrible image but can understand.
Does nothing for me either, still wake at least twice in the night with RLS and I’ve been taking it nightly for 3 weeks now 🤷♀️
I'm just waiting for the doctor to call I'm going to ask for an opioid
I’m on Oxynorm and gabapentin and they worked brilliantly for a couple of months but the Oxymorm isn’t touching me now and my gp will not increase it 😡
I’ve been waiting 2 months for an appointment at neurology and still haven’t got a date!
It's just awful 😖
Are you taking an SSRI or HRT or were you? Is that what drove you to the DA? Iron is likely whistling in the wind until your receptors get closer to baseline. How much iron are you taking? It should be taken away from magnesium which is best by day.
hello rangers52 I’m sorry to hear that you are having such bad nights - I’ve had them too so know what it’s like - since you are coming off of parexitine you could be in withdrawal from that - I think get advice from those that know on here the best way to manage that - you may be coming off too quickly - going down 5mg at a time sounds a lot…..
looking at everyone’s posts it seems that iron does help but it varies between people so I think carry on with it and perhaps look into an infusion - the iron clinic in London is very good so let me know if you want more details
In the meantime I think it’s all about coping - I ve taken up painting and doing large puzzles so that I have something to do at night when I have no sleep at all. Anything that distracts me and stops me from feeling suicidal is a winner - it really is the worst experience with little support - but don’t think you’re alone, there are many of us out there ( unfortunately) .
Hi. Taking more oral iron and also an infusion has had a minimal long term effect on my RLS.
The neurologist I saw re RLS said in her opinion other things were much more effective. I've found Tramadol the only thing to have any real effect. It's potentially addictive etc.. but for me, worth the risk. Neurologist agreed.
I've spoken to my gp and she's going to speak to a neurologist today, she's nit prescribing an opioid until she's spoken with neurologist but it could be a very long wait for me 😫
I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often. As far as the neurologist you could go private.
It's not a sure fire method at all. I'm sure loads of people on here have tried it, myself included, but not reported on the outcome. It definitely doesn't work for me.
If it's not working for you, then it's time for the next thing.
Yes, my GP would not prescribe opiates, very understandably. The NHS wait to see this particular type of neurologist, in Bristol UK, was 6 months. I'm on the waiting list but life became unbearable, day and night. In the end I sought out this type of neurologist privately. So helpful and understanding. Expensive but I have a sort of life again now. Presumably nothing works for everyone. I take 100mgs Tramadol in the evening, and can add in Gabapentin if necessary. Best wishes.
Iron is not a medication therefore it will take quite a long time to make a difference by the time it is bsorbed fully into the cells which are deficient. Low iron is often caused by chronic inflammation which is the underlying cause of RLS. Chronic inflammation can be caused by diet (e.g. refined carbohydrates, refined cooking oils or artificial preservatives) or environmental toxins.
It did not help me, moreover, I don’t tolerate glycine which is what gentle iron is bound to. Healthy people find glycine relaxing, but for me, it’s the opposite. Very often, sedating supplements that raise serotonin have worked for me for two days, then they build up in the system and no longer work as my system will be overwhelmed. May be worth trying different types of iron just in case you’re sensitive to the binding agent. If not, then you may need an opioid.
My gp refused the opioid will give a different iron a try
you might have to see another GP if the iron doesn’t help after a couple of months.
I have a bit of experience taking oral iron for RLS. If you’re taking iron every day, are you also taking Vitamin D? Vitamin D blocks Hepcidin. Hepcidin is the body’s response to iron. Vitamin D blocks Hepcidin and improves iron absorption. Did you test Vitamin D levels? There is a correlation between low iron and low vitamin D.
It helps me. I hope it works for you. Start with 4000 IU and go up from there. Be sure to test.
Good luck
if you read this you will think Vitamin D is a miracle.
ncbi.nlm.nih.gov/pmc/articl...
Vitamin D works on so many pathways. Hepcidin is only one of them. Good luck
Just ordered some calcium,magnesium and vit d tablets
Guilty as charged. I take all of the above.
I never really noticed much with Magnesium. I take it because everyone says to.
Calcium, I really think it has helped. My bones, teeth, nails... I think so.
Vitamin D is what helped me get my ferritin up and keep it up. I used to aim for a ferritin of 200, after a couple years 100 is ok with me.
I am very active and sweat a lot, daily. My wife bought some LMNT electrolytes. It is basically
1/4 Salt
1/8 potassium citrate
1/2 teaspoon Magnesium citrate (CALM)
I now put that in every water bottle, usually two a day. I think it is a miracle. No more cramps. I don't get dizzy when I stand up. I feel less anxious.
I know, it's crazy. I figure I was anemic, it wasn't because I wasn't eating meat, I assure you I am not anorexic. So if I was deficient in iron, maybe the other minerals would help.
So far, I think my RLS is getting a lot better. I am still taking the dipyridamole, almost nightly. It works, but I probably don't need to take it so often.
Sorry if I rambled. I hope you find relief soon.
Don't forget to take magnesium, calcium or zinc, even in a multivitamin at least 2 hours apart from iron since they interfere with the absorption of iron.
BTW, I take Dipyridamole and it totally knocks out RLS for me. It’s mentioned in the above article. Google Dipyridamole Double Blind Study for RLS.
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