Iron

[martino]

I have read that taking an iron bisglycinate tablet can alleviate RLS. Has anyone tried this and did it help?

[Hidden]

Hi Martino, first off, I see you were fairly recently diagnosed with primary RLS at the age of 67. I don't much care for labels such as "primary" but let's assume you have a pre-disposition to RLS. I wonder if anything changed recently with any medications or supplements. Did you start any of the no no drugs around the time of your diagnosis a year ago?  Statins, calcium channel blockers, metformin, antacids, melatonin, sugar substitutes or even increased eating at night.   How's your spine?

In answer to your question and this is my opinion from my experience (and I have a right to state it) iron in the right form at the right time will help everyone with RLS.  I think everyone with RLS should try iron bisglycinate on an empty stomach during an attack or one hour before bed. I take one 25mg tablet during an attack ( which are becoming more frequent with age).   The iron works despite the fact that I am nowhere near anemic and have healthy iron stores of 100.   The form of iron is crucial, it has to be able to cross the blood brain barrier. I believe that the bis-glycinate might be the only form able to do this. I tried the usual ferrous sulfate and it never did the trick. 

Muchas suerte Martino. 

[martino in reply to Hidden]

Thanks for your reply. The answer to the drugs is no but I did fall down stairs a few years back fracturing the back of my rib cage. Ouch!! I know my ferritin level is ok as far as the neuro is concerned but I will give the bid-glycinate a try.

[Hidden in reply to martino]

Well your horrible accident begs the question - did your symptoms of RLS begin shortly thereafter?

[martino in reply to Hidden]

No-it was about 4 years

[SLMCP in reply to Hidden]

Hi there, I have had iron checks many times, and always my levels have come back OK, so for me, alsas, it's not the iron that is the problem....

[Hidden in reply to SLMCP]

Iron is not the answer for everyone, its also not my problem either.

[Hidden in reply to SLMCP]

I know same for me. My male gynecologist is jealous of my red blood count which is 15. Women are usually 12 or 13. And my ferritin is slightly over 100. So clearly my body stores of iron are doing great. But my ( our ) brain is anemic. My brain just can't seem to get and retain enough iron, especially at night, from those healthy stores. No one who tried iron on my advise had low ferritin stores. But they all had anemic brains and they were all helped by supplementing with ferrous bis-bisglycinate at night or during the day as Mr.  X did in my post from 12 days ago. 

[Hidden in reply to Hidden]

I have Primary RLS, and when they find a way to correct my faulty genes, then i wont need to take anything That will not happen in my lifetime.  In the mean time i will take my meds and get the sleep i need at night. 

[Hidden in reply to Hidden]

It's alright, it's alright, whatever gets you thru the night. 

[nightdancer in reply to Hidden]

Yes, you have a right to say it, but in no way can ANYONE state that something (iron, magnesium) will help all people with RLS eventually, or however you put it. I have used the iron you have mentioned many times, and it did nothing for me, as well as many others. I am HAPPY for the people that it does help, but it just is not everyone's issue. And Primary RLS is a real thing, as the genes are, and as is Secondary RLS. These are official names given by RLS researchers and specialists. If Dr. Earley and Dr. Buchfuhrer BOTH say there are such things as Primary RLS (for what the Relaxis pad was developed for) then that is good enough for me. Dr. Earley is doing a very long, big study at Johns Hopkins which will not be done for a year or so. 

[Hidden in reply to nightdancer]

Iron that crosses the blood brain barrier AT the right time will help as many people as insulin does diabetics. Insulin has to be injected and it has to be injected at the right time. The right time isn't when your blood sugar is low. The right time for RLS isn't when u are symptom free such as during the day.  Iron taken in the morning will be bound up by evening when we need it and unavailable to our brains which are anemic, not our bodies.  Insulin is not a cure buy it will stop a diabetic from going into coma. Iron will not cure RLS but it will quiet them for the night. 

Give it up Nightdancer. The iron is old news and people will try it and get relief.  Let's figure out what our brains are lacking such that they can't bind and retain a little iron for night time use. Could it be lactoferrin?  I'm experimenting with lactoferrin right now. Wish me luck 🙏

[Hidden in reply to Hidden]

Hi Martino. I've been taking the ferrous sulfate with vit c 2x/day for about a month now in the hopes of getting my ferritin levels up (76 was mine). I've purchased some iron bisglycinate patches. Might you know if there's such a thing as too much or since they're different its OK? I was just wondering how you transferred over. Thanks for any help!

[martino in reply to Hidden]

Hi jorgesvoice

I think you have possibly attributed another comment to me as I am not sure what you mean when I transferred over. Nightdancer says you can have too much iron. My ferritin level in the only record I have is 38 although I expect to see an updated count soon. Meantime I take daily 1 Ironcare tablet which is in bisglycimate form. The next reading will show whether it is making a difference. Sorry I cannot be more helpful

Martino

[howlinwoolf]

Have you discussed with your PCP getting a blood draw and a metabolic panel? Iron will help if you have a deficiency. If not, it could plausibly hurt. 

That said, have you tried magnesium? There is a strong correlation between taking magnesium supplements and decreased RLS symptoms. Epsom salt baths are a pretty safe way to do this as are other topical applications like gels and oils. Powdered supplements are good, but you should chat with your doc to make sure you're safe.

If you do get a metabolic panel and your iron is low you might want to talk to your doctor about dopamine levels. The two can be related.

I hope that helps. 

 Nikki

[Hidden in reply to howlinwoolf]

There's something up with magnesium and we gotta figure out what. Supposedly the RLS brain has plenty of dopamine so that's not it.   But our dopamine receptors that are supposed to latch onto that dopamine do a really bad job of it. Once acquired that dopamine is transmitted down our central nervous system and quiets our arms and legs. Guess why our dopamine receptors are lousy. That's right...really low BRAIN iron.  Iron panels cannot measure brain iron levels so u just have to take a leap of faith and try a form that crosses the BBB. If u like it you tell your doc if it doesn't help you've spent $10.  But it will help.  Just not a cure. Anyways I'm determined to make the magnesium  work for me. I bought a kind called magnesium threonate that is supposed to be able to cross the blood brain barrier. I'm hoping it will help my plentiful dopamine get absorbed by my dopamine receptors. It worked in rat's brains.  Anyways, as a side note, magnesium taurate is supposed to be great for the heart. 

[howlinwoolf in reply to Hidden]

That's why they prescribe dopamine meds  in some cases. It isn't to increase it, it is so that it binds better. The low ferritin levels, according to what my doctor told me, are informative of dysregulated dopamine and that while iron supplements can help, the problem is in the brain cocktail.

But then there is magnesium. There seems to be a pretty definitive correlation between taking extra mag and having relief of RLS symptoms. I take powdered magain citrate and a spray gel with massage. Oooh.

[SuperMNew in reply to Hidden]

I must have misunderstood you earlier, Bisglyc.  I thought you told me NO MAGNESIUM!!  Hmmmm.  I'll have to re-read our conversation from several weeks ago.  I still wonder about the need to take bis-glycinate on an empty stomach.  I know that ferrous sulfate needs to be taken like that, but bis-glycinate is chelated to an amino acid and is being added to the food supply in third world countries to help alleviate iron-deficient diets.  That would suggest it is absorbed no matter if it's on an empty stomach or with food.  The follow-up studies have proven that is true.

[Hidden in reply to SuperMNew]

In my next life I'm taking biochemistry in college.  Well, the idea of taking iron on an empty stomach forces me to stop eating once I'm done with dinner.  Something good about that. 

I was thinking about you and the fact that the iron gives you about three hours of relief.  Not too shabby.  I think that as you continue to undertake other modifications you may find that the iron carries you through the night???

The magnesium is a whole different ball game.  So many people get relief that it's worth investigating and trying.  Our brains are anemic and you fix anemia with iron so I think that the magnesium works via a different mode.  And even with the iron, maybe the reason our brains have a hard time holding on to what little iron it picks up from the bloodstream is because our brains have a b12 deficiency.  I'm just throwing that out there.  There's probably 100s of possibilities of why our brains are anemic.  Well, I digress, back to the magnesium.  I read ONE article that indicated that magnesium (in the brain) helps all that dopamine we have lingering around up there to bind/attach to our pathetic receptors.  That's good, that's really good.  It almost makes magnesium sound like a natural DA?  Our receptors need all the help they can get.  The best of course is normal levels of brain iron, but I'm giving the magnesium a shot.  I've already tried the magnesium citrate I have in the house and I'm not seeing a whole lot of improvement but I'm counting on the magnesium threonate I ordered from Amazon to do the trick.  Supposedly it's the best of the only two forms of magnesium that are able to cross the blood brain barrier.  Magnesium glycinate is the other form but threonate is supposed to be superior.

Other articles about magnesium that I read earlier stated that it "inhibits the release of dopamine."  I'm hoping what that means is it inhibits it's expulsion or reuptake out of the brain.  I hope it doesn't mean that magnesium inhibits the release of dopamine from our dopamine receptors.  That would make it an antagonist and would worsen RLS before making it better.

I would like to see the RLS world switch out the DAs, opiates and Gaba for iron, potassium and magnesium...and I want that list to grow.  Even if these things are just add on's for some it's worth it.

I've had trouble attaching article here lately where before not.  I will try again.  Don't forget to tell me how you're doing these days.

 

[SuperMNew in reply to Hidden]

I had a rough night last night, and throughout the night never stopped shaking.  I think I've zeroed in on a food allergy as the culprit.  What I am discovering about iron is that more may not be necessarily better.  Since my capsules are 18 mg, I've been taking four at a time, sometimes three times a night.  That would equate to over 200 mgs of iron in 24 hours.  I've noticed nothing as far as a "reaction" to iron except a weird smell.  But 200 mgs of iron would equate to what I am reading as an average iron dosage for most folks that are using iron to control RLS.  Maybe it's even a little low.  That said, I am using with it Mucuna Pruriens (40% capsules) 4 at a time with the iron.  The problem is--it doesn't last but a couple hours at a time, but following your example, I'm dumping the powder out of the gelatin capsules into water to hasten absorption.  And taking it all on an empty stomach seems to indicate that there is no competition for absorption, so all must be absorbed.  Last night I had a late large supper with friends, and something in the mix didn't sit well with me, hence the rough night.  Since all of the bis glycinate iron is used by the body, I will be experimenting with iron dosage, though, to see if half the iron will work the same.  I need to regain my sense of smell.  I'll let you know.

Regarding magnesium:  Until I told you I would leave off the magnesium, I was taking that along with the above combinations, but since I stopped the magnesium I have noticed no difference in the relief I'm getting, with or without magnesium.  In other words, it seems to work the same for me whether I take mag or not.  Interesting.

[Hidden in reply to SuperMNew]

Super, I'm really wondering about the Mucuna.  Though L Dopa is more dangerous and seemingly would have more side effects you are now experiencing one of the symptoms that Parkinson's patients would get while on L-Dopa I believe - shivering, shaking.  Doctors got away from L-Dopa and went more with the DAs for Parkinson patients.  L Dopa seemed like a miracle when Parkinson patients first started taking it but then it quickly lost its effectiveness (as I recall) and had strange side effects.  I think they ended up with dopamine in other parts of the body not necessarily meant to have it.  I would have to do a lot of research.  Look at it this way, when RLS brains were autopsied (at least the brains of people who seemingly had primary RLS) they found that we actually had more dopamine than the average bear and no iron reservoir.  Compare that with Parkinson patients who have abnormally low levels of dopamine and very high levels of iron.  I can understand trying to give Parkinson's patients more dopamine but not RLS.  Would you give iron to Parkinson's patients who already have nearly toxic levels of it. 

This is my guess (based on no facts whatsoever) the Mucuna is down-regulating your receptors which of course are already pretty pathetic, almost like the DAs do and you are getting a type of augmentation.  Yes, your RLS seems worse when you stop the Mucuna, just like the DAs, but I think it might be worth it to stop it for an extended period?

[Hidden in reply to SuperMNew]

Ok I just googled levodopa and RLS, rather than mucuna, because I figured there might be more articles about levodopa.  According to an NIH 2006 study, levodopa causes augmentation in RLS.

That might be why the iron only works for a few hours, as well as the Mucuna! 

[nightdancer in reply to Hidden]

ANY dopamine med can cause augmentation when the dose gets too high, but we have discussed that several times here. It is a daily subject that comes up in ALL RLS groups. And, Levodopa will cause augmentation 90% of the time much faster than Pramipexole/Mirapex or Requip/Ropinerole.

[Hidden in reply to nightdancer]

I never heard of Mucuna and didn't see any scholarly articles on it and only googled levodopa and RLS because Super indicated it increases dopamine. I can't say with certainty that Mucuna causes augmentation 

[SuperMNew in reply to Hidden]

Hmmmm.  Interesting findings.  The L-Dopa I am taking is all natural--not a prescription drug.  I will give it a try and see what happens.  Generally, I don't have augmentation, just the RLS at night.  It never extends to arms or any other part of my body.  Just my legs, and it all starts at night and ends when the sun comes up.  Wild!  I do know that I have some food allergies, and sometimes I eat stuff unknowingly that has gluten (for instance) in it; or like my fav restaurant that puts grains mixed in to make their "meat patties" go further.  That's the kind of stuff I find out the hard way.  Food allergies do make me "shake"--I know that.  But, I appreciate all the hard work and research you are doing on behalf of all of us looking for answers.  I will try the "iron only" approach.  How much do you take?  And does one dose last you all night?  Are you taking prescription meds as well? 

[Hidden in reply to SuperMNew]

No prescription meds for RLS. I take one 25 mg tablet. But there's no drag on my receptors from drugs like DAs and possibly opiates. But going back to my one and only post on this forum it seemed that  Mr. X did rhis own research and concluded he would try a higher dose. As always, it worked for him from the first dose. But his RLS begins in early afternoon. He was able to do away with his 3:30 pm ropinirole and barely had symptoms by the time for his evening ropinirole. So that tells me that even people on the DAs can benefit from the iron. Everyone who wants to try iron has to experiment find the lowest possible dose that works for them and then after a few days call their doctor to discuss. I think people will find that as they cut back on them DAs and opiates they will be able to cut back on iron. The golden rule with iron is only take it during an attack and AWAY from all food supplements and prescription drugs. 

[rsoular in reply to Hidden]

Hi! I'm replying to an old post in which you mentioned the importance of keeping iron doses low. My ferritin is 13.5 and my doc says I can take up to 200/day. I have found that iron right before bed helps me get to and stay asleep. I've been taking 30 before bed and 20 in the morning. from what you know, how should I proceed? Am I trying to get my ferritin levels up in general, or am I just trying to sleep? The iron that I bought is expensive (ProFerrin highly absorbable and low side effects). Thoughts?

[Beamishmom in reply to SuperMNew]

What are you allergic too?

[Beamishmom in reply to SuperMNew]

Which food allergy?

[Redhots7 in reply to Hidden]

Bislyc, I take Magnesium Malate ( after discussing with my doc) for Fibromyalgia . 😘

[Hidden in reply to Redhots7]

Yes, good call with the malate.  That's the form I see recommended for Fibro and CFS.  Be patient, two months to wellness at least.

[Redhots7 in reply to Hidden]

Bisglyc, I decided to try it because of posts on Fibro site.  I am so thankful for finding this website.   I started taking the Magnesium Malate about 3 days ago, your telling me in couple of months, I am going to feel even better than I feel today, I can't tell you how excited I am !!  Don't know how much I should be taking?  My doc said to take 2 - 500mg per day .  The one I bought says a Serving Size is 3 Tablets. The amount of Magnesium Malate PER SERVING SIZE is 425 mg.  I have been taking 3 tablets per day. Kinda 1 with each meal . I would like to know how much others take???? Does anyone take more than one tablet with a meal ?  I can/ will check with Health Store also .  The tablets are Hugh 😜😜😜

[Hidden in reply to Redhots7]

Tell me about it.  I got the magnesium threonate today, it's one inch long.  I had RLS at 11:30pm (drank a diet coke) and took one capsule and watched a two hour movie.  Right now I have no RLS.  It's not a fair test.  My mind is still wrapped up in the movie.  According to the movie, and my own personal belief system, everything has a purpose, even our health conditions.  We can choose to be victims or whatever we want to be.  I see you have chosen to be a warrior.  I will follow you on your journey to wellness and help wherever I can.  Xxxx

[Redhots7 in reply to Hidden]

Bisglyc, for RLS, i buy at Health Food Store (USA), it is a liquid all natural Amish Formula. It is made from certified organic apple cider vinegar, all natural ginger, & garlic juice . You put 1 capful in 2 ounces of water or fruit juice. It smells and taste horrible BUT IT WORKS !!! The name is : STOPS LEG & FOOT CRAMPS IN ABOUT ONE MINUTE .  Yes, that is the name and I have been using for couple of years and works every time !  I don't have RLS every night but when I do , I mix it in my kitchen, drink it and by the time I get back in bed, it is already working.  You can google and order online if you want to try it and yes I know it says cramps. Yes, I have RLS , just not all the time but when I do, only thing I have found that calms my legs and let's me rest !!  My main issues are Fibromyalgia and sciatica.

[Redhots7 in reply to Hidden]

Diet Coke will kill ya !

[nightdancer in reply to Redhots7]

you should be taking whatever your doctor tells you to do. You cannot take too much magnesium, in any form. You CAN take too much iron, so this is why we say get it tested first". 

[Redhots7 in reply to nightdancer]

Nightdancer, I agree with you about doc. In my case, I called and said " I want to take Magnesium Malate, how much should I take "?"  They have not done blood work to check levels on Mag .  The tablets are Hugh and would need to take 6 a day to get close to what PA said. Again, it was my idea to take , thanks for your input!

[Hidden in reply to Redhots7]

Hey Redhots, take a look at your tongue.  It's one of the few things from Eastern Medicine that I find somewhat valid.  They say that shiny spots are a sign of allergies, deep fissures are a sign of long standing mineral deficiencies and a thickish white or yellow coating show imbalance.  When those bumps are very large I think that's inflammation in the body.  Personally I think the coating shows microbe imbalance.  When the candida rears it's ugly head my tongue is coated.  When I'm feeling better the coating is gone.  The tongue shouldn't be bright red either.  Our tongues are supposed to be somewhat smooth, pinky red, with a thin clear film on it.  No western doctor will give any credence to this.   

How does your tongue look?

[Redhots7 in reply to Hidden]

Bisglic, okay looked at tongue, definitely not smooth, definitely not red, no bumps???

[Hidden in reply to Redhots7]

Are there deep cuts?  Is there a thickish white or yellow coating? 

[Redhots7 in reply to Hidden]

No, more like lines or grooves ?? Maybe whitish thin coating .

[Redhots7 in reply to Hidden]

Bislyc,  I just started taking Magnesium Malate after reading several posts on Fibromyalgia ( I have) that it helped.  I bought at Health Food Store ( USA) and they confirmed that was the Magnesium I needed.  First I called my doc , I never add any OTC vitamin or mineral without clearing with them first !!!!  Your doc needs to know all and anything you take 😘

[Hidden in reply to Redhots7]

XO.  How can I run it by my doctor when I'm the know it all?  My dearly beloved allergist who walked on water retired a few years back.  He diagnosed an overgrowth of candida in GI tract and treating it brought me back to baseline with my conditions.  Never even heard of an overgrowth of that and some doctors still do not acknowledge.  The rest of my doctors are there to run tests for me, I do not necessarily value their knowledge or advise.  One day I hope to find another doctor that is forward thinking.  I look at it this way, whenever I take a supplement that is in my kids chewable vitamin, even if it is a fancy more expensive form of the vitamin or mineral, I feel safe.  I know a kid's chewable vitamin shouldn't be the litmus test for safety yet for me it is, especially when I'm taking the substance in about the same dose.  So my kid's chewable has 18mg of iron and I take 25mg of iron during an attack.  Same will be true for the magnesium.  The other litmus test is baby formula and mother's milk.  If it's a vitamin or mineral that is plentiful in either of these substances then I feel good to gooooooooooooo!!!!

[Beamishmom in reply to Hidden]

So any good news concerning the mag. taurate ?

[martino in reply to howlinwoolf]

Thanks Nikki. I am seeing my PCP (my GP) next week and we can discuss this. I've always been slightly anaemic which has often shown up when I have donated blood

[SLMCP in reply to howlinwoolf]

What is a metabolic panel?

[howlinwoolf]

A blood test that looks at your levels of a whole host of things including vitamins, ferearing  (iron) blood constituents like platelets  and more. It gives a pretty full account of basic deficiencies and overages  (such as cholesterol and glucose) and helps point a doc in further directions to study. Or even just vitamins and supplements to suggest.

For instance, my Vit D was painfully low last time  own I have to take vitamin D supplements FOREVER.

[Redhots7]

Martino, i don't know if Iron would help but BEFORE you start taking any Iron tablets you must ask your doc to do blood test to check your Iron levels. You should talk to your doc about taking as it can interfere with other meds you take and can cause other problems .  You should NEVER just add any vitamin or mineral without discussing with doc !  

[martino in reply to Redhots7]

Redhots-thanks. I am seeing my doc in a week or so and the point of the meeting is to discuss meds including supplements. I have already been taking multivitamins including iron and both he and the neuro say that my iron level inc ferritin is ok. What I don't know is what the iron level is. I have read that what may be ok normally may be too low for people with RLS. I know from blood doning sessions in the past that I have bordered on anaemia.I also have Gilbert's syndrome and don't know whether this may have a bearing

[Redhots7 in reply to martino]

Martino, iron can cause constipation and or diaherra, Google side effects . 

[martino in reply to Redhots7]

Thanks-with the meds I have constipation is a problem helped by Fibogel. A bit of diarrhoea wouldn't go amiss but as I also suffer ok IBS it's all a fine balance! Best wishes Martino

[joyce234]

Iron tablet or (broccoli which the DR told me us the best to take as it has the iron my body needs) cause me to become consipated to the extent I'm now having bowel problems