I am in the US and looked at a number of 25 mg of iron bisglycinate products (gentle iron) on Amazon. All listed there percent of daily value (US) at 139%. Most did not list their elemental iron but two did and they listed it as 25 mg.
So my apologies! My previous post which I deleted was wrong.
So to get the equivalent elemental iron as in 325 mg of ferrous sulfate which is the usual amount one would take to raise their ferritin, one should take 65 mg of iron bisglycinate. Since that is not a multiple of 25, I would suggest 50 mg or 75 mg.
Thank you to those that challenged me and made me look closer.
Written by
SueJohnson
To view profiles and participate in discussions please or .
Thank you to YOU Sue for taking the time to do the research on behalf of us all. Personally, I don’t think I would be able to continue fighting this hideous disease without the support of the likes of you and Lottie, as well the many others who so valuably contribute such helpful information.
Notice that the article also points out the fact that there’s an “inverse” relationship between serum ferritin and iron absorption. Meaning the higher your ferritin the less you will absorb from that supplement.
WARNING to all members on here who get immediate relief from iron - you probably don’t want to raise your ferritin too high. You especially don’t want an infusion. This will likely inhibit that miraculous relief you realize from taking iron before bed. 🚷
Elisse, I couldn’t find any articles directly on point, however, Marlayna got her ferritin up to 240 and the iron at night trick still worked for her, so that tells me a good amount of iron was still being absorbed at 240 ferritin. I would be nervous if my ferritin was that high. I can’t take any chances that something might interfere with absorption of my night time iron supplement. Even at 240, her high ferritin did not relieve her RLS. She needed to keep taking that night time dose of iron to keep RLS at bay. The iron supplement raises something called serum iron. RLS is all about serum iron, not really serum ferritin. Read through all comments: healthunlocked.com/rlsuk/po...
Hey there! Just a update. I did stop taking iron a while ago and have been strictly on oxycodone. Just this past Friday I got my iron levels checked as Dr. buchfuhrer wanted to see if I’m a candidate for iron infusion. I will let the group know, if anything relevant turns up.
Marlayna, according to your posts, the iron at night trick worked well for you for over a year. Even once your Ferritin hit 240, you still needed to take iron every night to keep RLS at bay. At some point you started Oxycodone for another condition. You also started HRT. You noticed a worsening in your symptoms and kept upping the Oxy and let the iron fall by the way side. It seems clear that HRT is the culprit behind worsened symptoms. Do you really think an infusion will help when getting your ferritin to 245 with oral iron still didn’t allow you to take a break from the nightly iron???
Yes it did help to take iron, but then there were concerns my levels were was too high. When I stopped taking iron before bed, the symptoms returned. The Oxycodone helps but at 58, I am concerned about my next 20 years on this med. I am hoping to find out today what my iron levels are now after a long time without supplementation. I stopped HRT, and am only taking vaginal estrogen. So much to manage...
Vaginal estrogen does enter the bloodstream I believe. There are other more natural suppositories for dryness. If the iron at night trick worked for you before there’s no reason to believe it won’t again - with your doctors permission. What makes you think an infusion will be more effective than what worked for you in the past so brilliantly??? I also assume you can cut back on the Oxy once you start the night time iron again.
On your warning that really applies only to those who find taking iron at night gives them immediate relief which is not the majority of people. It would be best if you indicated that in your warning so you don't scare off people who don't get that relief and do need an infusion.
More people are helped by iron at night than raising serum ferritin. Old habits die hard don’t they? It’s the dawn of a new age. It’s all about serum iron, not serum ferritin and up-regulating receptors. Two areas you choose to ignore
Is there evidence for the claim that more people are helped by iron at night than raising serum ferritin? Don't get me wrong, I think everyone should try raising serum iron at night first as it's so simple, there are virtually no side effects and when it works it's obviously life changing. In fact I imagine many people who are identified as iron deficient will actually have tried raising ferritin and iron levels via supplements as it's so hard to get an infusion in the UK anyway. Infusions are reported to have a 60% success rate in improving symptoms although that probably covers a number of things from total removal of symptoms to just an improvement. Both are valid courses of action depending on what works for you
First Elisse3 lets address the absorption issue. When supplementing with Iron, serum levels go up and there is less absorption because the body produces hepcidin in response. Hepcidin is the reason the iron absorption goes down. What blocks Hepcidin? Vitamin D blocks hepcidin and thus increases iron absorption. (Take Vitamin D3 with a fatty meal, preferably in the morning.)
Low iron and low vitamin D have been corelated. If you have low iron, it is advisable to check Vitamin D levels. There is a reason why Vitamin D can help RLS, just google it.
It has been harder for me to raise my Vitamin D levels than my ferritin. Once I started supplementing with Vitamin D, I try to keep my ferritin above 100. It's easy. BTW as a big person who is outside a lot, I still take a LOT of Vitamin D.
I supplement everyday not every other day because it was explained to me that I absorb more iron total although less percentage wise than if I take iron every other day. So if it take 325mg a day of iron everyday and absorb say 50 percent. I get 162.5mg of iron, every day. If I take 325mg of iron every other day and and absorb 75%, I get 243.2mg every OTHER day, or only 121 every day.
But if I supplement with Vitamin D, the amount of iron I absorb everyday can go up.
In the beginning, my goal was to keep my ferritin at 200. The reason is I had suffered from a long term deficiency and was trying to increase my iron stores. There was a difference back then. Now I aim for a ferritin of about 100.
Side note: Taurine can ameliorate the effects of excessive ferritin. Sorry, I don't have the study at hand.
Now Munroist is there a reason to supplement with iron at night. I present to you Dr. Earley and the circadian rhythm of iron.
Thanks, that’s interesting. I too supplement with iron bisglycinate at night and I’ve managed to raise my ferritin gradually from 70 µg/L to 140µg/L doing so. My question was more to do with the relative numbers of those getting immediate relief from RLS within hours of taking supplements compared to those who got benefit from infusions.
I wanted to add, I supplemented for a year, in the morning with my coffee. My ferritin rose to 200, it didn't affect my RLS. I stopped supplementing per the nurse. It took 18 months for my ferritin to fall to 30. That week I got an infusion. 8 weeks after the infusion my ferritin was 114. That's when I started supplementation in earnest.
The doctor said I would need to keep my ferritin close to 200 for a couple years before my iron stores got replenished. I think it was noticeable back then. I now try to aim for above 100.
Widebody, if you get immediate relief from the high dose iron then you need to take it every night. Otherwise it is probably best in terms of raising ferritin, among other factors, to do an every other day routine. Hepcidin is also very low in the early morning. So that gives you another option if you don’t get any immediate effect.
Would be curious about what source you have for several things:
1) "When supplementing with Iron, serum levels go up and there is less absorption because the body produces hepcidin in response. Hepcidin is the reason the iron absorption goes down." I know that when you take iron, hepcidin is released which prevents you from absorbing more iron for 24 hours. Is this what you meant?
2)" I absorb more iron total although less percentage wise than if I take iron every other day. So if it take 325mg a day of iron everyday and absorb say 50 percent. I get 162.5mg of iron, every day. If I take 325mg of iron every other day and and absorb 75%, I get 243.2mg every OTHER day, or only 121 every day." I have never heard of this
Iron is an essential nutrient for human health, playing a crucial role in oxygen transport and cellular metabolism. However, too much iron can be toxic, leading to oxidative stress and tissue damage. Therefore, the body has a complex system of regulating iron homeostasis, involving the key players hepcidin and vitamin D.
Hepcidin is a peptide hormone that acts to reduce iron absorption and release from storage. It is produced by hepatocytes (liver cells) and released into the bloodstream, where it binds to ferroportin, the only known iron exporter. This binding prevents ferroportin from exporting iron from cells, resulting in decreased iron absorption and release from storage.
Vitamin D is a fat-soluble vitamin that is essential for a variety of bodily functions, including bone health, immune function, and cell growth. Vitamin D also plays a role in iron metabolism by suppressing hepcidin production. This is thought to be mediated through a number of mechanisms, including direct binding of the vitamin D receptor to the hepcidin promoter and indirect effects on inflammatory signaling pathways.
The relationship between iron metabolism, hepcidin, and vitamin D is complex and bidirectional. For example, iron deficiency can lead to increased hepcidin production, which further reduces iron absorption and release from storage. Conversely, vitamin D deficiency can also lead to increased hepcidin production, even in the presence of normal iron stores.
Here are some scholarly links that discuss the relationship between iron metabolism, hepcidin, and vitamin D:
The Effect of Vitamin D Supplementation on Hepcidin, Iron Status, and Inflammation in Pregnant Women in the United Kingdom: ncbi.nlm.nih.gov/pmc/articl...
Conclusion
Iron metabolism is a complex process that is tightly regulated by hepcidin and vitamin D. Disruptions in this system can lead to a variety of health problems, including iron deficiency anemia, iron overload, and chronic inflammation. Therefore, it is important to maintain adequate levels of iron, hepcidin, and vitamin D to ensure optimal health.
Here is the link again. The video should play in the window below.
I don't really have the time to watch an hour and 8 minute video. But I am still interested in the sources for my questions 1 and 2. Are they answered in the in the video?
Yes, the video is quite amazing. I suggest that you speed it up. Dr. Earley speaks very slowly. I would love to get your opinion. As to question "1) I know that when you take iron, hepcidin is released which prevents you from absorbing more iron for 24 hours. Is this what you meant?" Yes that is exactly what I meant.
Hepcidin is a peptide hormone that plays a key role in iron homeostasis. It is produced by the liver and acts on duodenal enterocytes to inhibit iron absorption. Hepcidin levels are regulated by a number of factors, including iron stores, inflammation, and erythropoiesis.
When iron stores are low, hepcidin levels are suppressed, which allows for increased iron absorption. When iron stores are high, hepcidin levels are increased, which reduces iron absorption.
Supplemental iron can also increase hepcidin levels. This is thought to be a protective mechanism to prevent iron overload.
A number of studies have shown that supplemental iron increases hepcidin levels. For example, a study of 24 iron-depleted young women found that a single dose of 60 mg of iron increased serum hepcidin levels by 24 hours (pubmed.ncbi.nlm.nih/26289639/).
Another study found that iron supplementation in athletes increased hepcidin levels, even in those with low iron stores (ncbi.nlm.nih.gov/pmc/articl....
The increase in hepcidin levels in response to supplemental iron is thought to be caused by the following mechanisms:
Increased transferrin saturation: Transferrin saturation is a measure of the percentage of transferrin molecules that are bound to iron. When transferrin saturation increases, this is a signal to the liver to produce more hepcidin.
Increased erythropoiesis: Erythropoiesis is the process of red blood cell production. When erythropoiesis increases, this also leads to increased hepcidin production.
Inflammation: Inflammation can also increase hepcidin production. However, inflammation is not thought to be a major factor in the hepcidin response to supplemental iron.
The increase in hepcidin levels in response to supplemental iron can reduce iron absorption. However, it is important to note that the magnitude of the reduction in iron absorption is variable. Some people may experience a significant reduction in iron absorption, while others may experience little or no reduction.
The duration of the hepcidin response to supplemental iron is also variable. In some people, hepcidin levels may remain elevated for several days, while in others, they may return to baseline within 24 hours.
As far as question two. that is a direct quote from my Doctor, hence the quotes.
2) " I absorb more iron total although less percentage wise than if I take iron every other day. So if it take 325mg a day of iron everyday and absorb say 50 percent. I get 162.5mg of iron, every day. If I take 325mg of iron every other day and and absorb 75%, I get 243.2mg every OTHER day, or only 121 every day." I have never heard of this.
They talk about iron supplements TWICE a day in section 5.1.1
"Oral iron as ferrous sulfate 325 mg (65 mg elemental iron) twice a day with 100 mg Vitamin C twice a day is possibly effective (level C) for treating RLS for patients with a serum ferritin ≤75 μg/l, but possibly not effective (level C) for the treatment of RLS in adults who have a serum ferritin >75 μg/l."
My understanding is the goal of iron supplementation for those with low iron stores is to get ferritin to supraphysiological levels, to increase iron stores.
As someone who has supplemented for years just to be normal. I think this is where the importance of testing comes into play. One of the reasons I put all my blood tests into an Excel spreadsheet.
In the beginning after the infusion. I was told I would need to keep my ferritin at 200 for several years before I replenished my iron stores. Ferritin was 114, 8 weeks after my infusion.
Taking liquid ferrous sulfate twice a day was causing issues. The doctor prescribed 650mg ferrous sulfate twice a day. My ferritin got to 270, that's when I finally started cutting back.
My most recent test, I was taking 36mg of ferrous bisglycinate once a day and it was NOT enough. Moved to 90mg ferrous bisglycinate, every day. (2 *45mg). I will let you know in about 4 months.
The optimal frequency of ferrous sulfate supplementation depends on a number of factors, including the severity of the iron deficiency, the patient's individual tolerance to ferrous sulfate, and the patient's preferences.
Do you not think that if ferritin had a major, or even moderate role, in RLS that we would then have RLS 24/7/365 when it’s on the low side. Yet we don’t. If someone could provide a cogent explanation as to why raising ferritin will stop RLS I am all ears.
Iron is able to cross the blood brain barrier once it is broken down and enters the bloodstream. Even by us RLSers. Our brains have no problem, whatsoever, sucking up that free-floating iron from our bloodstream. If the RLS brain did have a problem, then we would have RLS 24/7/365. Not just at night. The problem is in the storage of iron by our brains, for a rainy day, or should I say night 😵💫. The non-RLS world is able to store way more iron than we with RLS can. When serum iron is plentiful during the day, we all are mostly ok. When serum iron plummets at night (in all humans), our RLS rises. The non -RLS world, with plenty of stored brain iron, don’t feel so much as a twinge. Plus they have better dopamine transport systems than we do. Lucky them. The point is, by sneaking our brains (and probably other organs) a little extra iron/serum iron at night, we get relief from this bizarre circadian rhythm.
It's a bit more complicated than that, RLS suffers via brain autopsy's show a significant lack of H-ferritin in the substansia Nigra. Iron doesn't plummet at night, ferritin is lowest in the morning.
This is an excellent video by Dr. Christopher Earley. He is a very prolific RLS researcher. I promise you, you will enjoy every minute. I did.
I must say I had the good fortune of listening to Dr Early just 2 weeks ago at the RLS symposium in Maryland USA. Along with several of his colleagues, it was very encouraging . My iron levels have and are within normal range so I never paid much attention to anything said on here about iron. However there was much discussion at the symposium by the doctors about iron infusions!! Then when I went into this site afterwards the first post I see is about iron infusions!! I took it as a sign that I am now going to speak to my doctor about it. Even more crazy? The one doctor that sat with us at dinner believes in infusions big time!! So maybe it could help me and many on this site? If you are also hesitant as I was about getting.
What a great experience it was not only being able to hear the many doctors but to meet and speak them and many other RLS/Night Crawler sufferers!!!
Yes, I am willing to recognize a very short-lived improvement in brain iron stores at levels of 600+. And if people were able to throw out the opiates for a year I would be recommending it left and right. But they’re not.
Hi Elisse, now that you mention it, I’m curious myself. I know you are long suffering. I guess the iron at night trick doesn’t work for you? Do you take any magnesium by day?
I am taking two of the 20mgs iron bisglycinate every other night on a empty stomach and the pills have VitC included no help yet with the RLS but as i have Primary RLS i am just trying it to see if it will make any difference No i don’t take magnesium tried it even the bisglycinate one and it doesn’t agree with my IBS
I am sorry iron doesn't work for you. I am lucky, my RLS is secondary. The only thing I have heard that works for Primary RLS is low dose opioids? Personally I have not tried them.
I want to add my personal note of gratitude to Sue and Jools and everyone who takes time to help us. The docs collect their pay and status but this is where I go for advice and peace of mind. Y'all are heroes.
Thank you Sue !! This information is a huge help since my Neurologist doesnt believe that your Ferritin level has nothing to with RLS. Mine is 63. She just upped my dosage of Pramapexole after telling her it doesnt work for me anymore.
Ouch ! The acceptable maximum dose is .50 mg. You are taking one and a half times the maximum dose. You are augmenting and need to come off it.
To come off pramipexole, reduce by half of a .125 mg tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. It won't be fully effective until you are off it for several weeks. You are already taking a lot of gabapentin. If it is still not effective after your symptoms have settled down after being off pramipexole then increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. Since you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin and if you need more than 1800 mg you should probably switch to pregabalin - ask me how if that occurs) If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and about augmentation and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
I actually got an article regarding Pramipexole augmenting & showed it to my Neuro. She said it was false even though I told her that it doesnt work any longer for me. I already made an appointment to see someone else. Thank you Sue ! Enjoy your day.
I am glad to read you are going to another doctor!! Sue is spot on in her information to you. Truth and fact. That doctor who put you on high dose needs a serious education in RLS!! I’m very serious. How unfair to the next patient who sees her and she does that to?? It disturbs me so much!! It is a subject all the doctors spoke about at symposium I was at a couple weeks ago. Medical professionals need an education in RLS period! As well as pharmaceutical and insurance companies!! Unfortunately the latter will be harder to do since it’s all about the almighty dollar in this country!!!
Sue, I take Healthy Origins Iron Ease 45mg.. It is listed as Ferrochel, Iron Bisglysinate Chelate. I just called the 800 number on the bottle and confirmed 45mg is indeed 45mg of elemental iron. FYI, I am now taking two every night.
Widebody, I see you stopped the Dipyridamole. I can’t tell for sure, but it sounds like the only thing you are doing is the nightly iron. Do you really think it’s your 70ish ferritin that is keeping RLS symptoms at bay?
I think an infusion and at least 7 years of keeping my ferritin high has certainly helped.
I do take Dipyridamole on an as needed basis. I absolutely take it before every long car ride. It's still in the cupboard, I would not hesitate to use it if I have a bad night. It's been a long time since that has happened, but I remember those bad nights well.
I’m an attorney so pardon the following “Your Honor, please direct the witness to answer the question.” Widebody, do you think the iron at night helps you right then and there.
No. I don't feel an immediate effect. I did feel an immediate affect after my infusion.
Overall, I think I can tell when my ferritin gets lower, lack of energy, naps, irritability? That's why I recently tested after a year. 70 is very low for me. I was taking 36mg of iron bisglycinate every day, too low.
So no, there is no direct effect for me, just a trend to getting worse RLS Symptoms as my ferritin falls. In the beginning is was a lot different. I think I could tell an immediate effect after the infusion.
Part of my concern is not just RLS symptoms but anemia itself. My last test showed hemoglobin and hematocrit was borderline anemia. Interesting that would happen when my ferritin was 70. I need my ferritin to be high for my hemoglobin and hematocrit to be normal.
(As an attorney have you thought about going after the pharmaceutical companies for their pushing of Dopamine Agonist Drugs.
Haha, yeah I should. I’m a scientist at heart. Next life I guess. In the interest of science would you be willing to forego the iron for two nights? If your RLS remains quiet then I’ll give up the iron at night thing and push for raising ferritin from now on. And I’ll nominate you for a Nobel Peace Prize.
Wow a Nobel Peace Prize... I could use one of those.
Actually I do give up all iron for a week prior to my testing. The experts say 48 hours. I say a week. I do take iron every night, but there are some nights where it's too late or I have eaten too much (that's an issue). If I don't take iron on an empty stomach, I get issues.
I don't think you should keep quiet about iron at night. I absolutely agree with it. I think in the beginning, it was really important. Now, when I go camping/hiking etc... I generally don't take iron with me.
John's Hopkins used to have a statement on their page. Something along the lines of, It has been known since the 1950's that supplementing with iron 65mg, TWICE a day, for three months, vastly improved RLS symptoms in a majority of RLS sufferers even with normal ferritin levels.
Yes, I could go a whole week with no iron or meds. Except Flowmax, that I have to take. Middle aged male issues.
Mind you I did take all the DA drugs, augmented, got an infusion, did Gabapentin then pregabalin for years. Yes, I am off all meds for RLS and it used to be 24/7. I do take a few supplements, iron, vitamin D and C. Taurine, magnesium, calcium, vitamin k2 and a b complex.
Thank you Sue, its appreciated that you investigated this for us. I'm taking 2 iron bisglycinate tablets at bedtime with vitamin C. I may take 3 every 2nd or 3rd night to help raise my ferritin level.
Purple, if you feel that the iron provides no immediate, that night relief, then you are better off with an every other day schedule to raise ferritin. No point in thinking about it, just go for it. 💁
Well...its nice of you to ask, but so far the Pregabalin plus Trazadone has not been a panacea for sleep. As in I seem to start thrashing around about half hour after taking it all😟. It's only been 3 nights, but last night I was so desperate that I took a half of a Tramadol too. Then I slept 6.5 hours. So i cant figure out 'what the heck'!? Tonight I'd rather try NOT taking the higher dose Pregabalin and see if that's the cause of my agitation. I'm too worn out to rationalize at this point.
Oh GOOD NEWS is that I don't have afternoon augmentation anymore!! Woo-hoo! 🎈🍰🎊 And I don't feel squirmy until bedtime when all these meds are taken. Well I take the Pregabalin an hour before going to bed.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Iron
Iron deficiency 
Iron
Iron + magnesium - bothered
