I have seen numerous claims of “check your ferritin level, if it’s <100 you need to start taking iron.” Unfortunately, it’s just not that simple. That guideline has not been established. I have confirmed this with my RLS physicians. He said ferritin level is only 1 component used along with transferrin saturation to determine a patient’s iron status and no one should start taking iron without consulting a physician due to the potential for other side effects and risks.
Please see these guidelines directly from Mayo’s most recent update “The Management of Restless Legs Syndrome: An Updated Algorithm”
•Determine the patient’s iron status (early morning, fasting iron panel: serum ferritin, iron, total iron-binding capacity, and percentage transferrin saturation).
•If serum ferritin concentration is ≤75 μg/L and transferrin saturation is <45%, administer an oral iron preparation (elemental iron 65 mg) with 100 to 200 mg of vitamin C every 1 or 2 days on an empty stomach. (Note that in the presence of inflammation or malignant disease, serum ferritin concentration may be misleadingly high, and thus transferrin saturation <20% may be a more accurate measure of iron deficiency.)
•Consider intravenous administration of iron if transferrin saturation is <45% and (1) serum ferritin concentration is <100 μg/L and a more rapid response is desired than is possible with oral iron; (2) oral iron cannot be adequately absorbed because of disorders of the gastrointestinal system, bariatric surgery, or chronic inflammatory conditions; (3) oral iron is not tolerated; and (4) restless legs symptoms do not improve despite an adequate (3-month) trial of oral intake of iron.
Also - depending on one’s existing ferritin levels, taking oral iron supplements can have limited or no benefits at all because of how poorly we absorb it via our gastric systems, even ingesting vitamin C at the time of taking oral iron has limited effect.
RLS sucks.
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DataRN
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Thanks DataRN. A helpful reminder to check all levels. There are also reports that taking iron supplements every day/ more than once a day doesn't work as well as taking every other night. It's a complicated area.
Definitely iron is not well absorbed if you take a second dose the same day, but I have learned that the usual recommendation to take it every other day is because you don' t want to take it within 24 hours so it is easier to say every other day to prevent one from say taking it at 9:00 pm one night and 7:00 pm the next night.
Yes, I have monitored, graphed and studied my lab Iron profiles for 2 yrs now. Ideally for me % Saturation needs to be ~ 20-30% although John Hopkins defines an Iron deficient profile as having less than 16% Sat.My Transferrin is ideal at 277 mg/dl , ceruloplasmin ideal at 34. Iron is ideal at 103ug/dl since the iron infusion and % Saturation is now at 34% since iron infusion 1.5 yrs ago.
You're welcome - my point being, even though I have had all of my blood parameters at ideal values for the past 6 months (since iron infusion).. and I changed my diet to FODMAP mostly, and I take no medications other Hersuta occasionally to sleep and calm the legs.. my RL condition was made better by all the changes but not completely eliminated. I still have problems in legs, and sometimes shoulders almost nightly to some degree. Symptoms are worse on a heavy workout gym day or heavy yard work day. That is why I asked is anyone has had the nerve tunnel decompression done. It is possible I might resort to that as a last attempt to eliminate this condition.
Interesting you say that. Less than 2 weeks ago I had a consult with a vein specialist. They saw no vericose veins or anything else that they felt would cause RLS symptoms for me. I would love to not be taking an opioid and Lyrica. Do you have known vein issues?
I have no known vein issues to me; however I had a bad ski accident 3 yrs ago and sustained left leg injury. My RL started about 6 months afterwards. (I had a couple of episodes of RL back 20-30 yrs ago but they went away and I never sought medical attention for it) Since my ski accident I have had two neuromas, one on each foot and the restless years constantly, nightly. At my urging I am to be tested for neuropathy in the legs in September by a neurologist. Once I see the results of that test I'll have better insight into what my next step will be. However, I do understand that my mother had RL once she was about 70 yrs old - not sure if it was induced by her meds or not; her dr. put her on ropinorole and she took it for 14 yrs before she passed with cancer. She did augment and was taking the highest dose possible near the end. Such a conundrum.
My ferritin has dipped down to 51 after having an iron infusion 5 or 7 years ago. The last one brought it up to 650. It has been gradually decreasing. I saw my specialist at Hopkins, Dr. Christopher Easley, yesterday and he is sending in an order for another iron infusion.
There is a problem with this line from the Mayo Clinic Algorithm:
•Consider intravenous administration of iron if transferrin saturation is <45% and (1) serum ferritin concentration is <100 μg/L
Basically the aim is to increase ferritin levels significantly for example to 300-600 level. Therefore it makes no sense to limit infusions to people who are <100 μg/L. If we need to be up at 300 but can only manage 145 through oral supplementation (i.e. me), then as long as other factors such as TSAT are in the safe range an infusion should be considered otherwise there’s no way of getting ferritin higher. I emailed Dr Buchfuhrer a while ago on this and he concurred that the advice is not 100% logical and has arisen partly because the algorithm is a jointly produced by a number of RLS specialists and there are compromises to accommodate some differences in opinion.
That makes a lot of sense. I have questioned this with my doctor - who happens to be one of the authors on that study. My ferritin level has never been over 100. I have only had 1 infusion back when my ferritin was 18. That only raised my ferritin to 100. Other than that, it ranges between 40-80. My doctor has told me “take oral iron if I want to. However, it’s unlikely to do any good.” Again, I realize ferritin is not the only factor. I have a rare appointment with him TOMORROW. Any questions you’d like me to ask about this?
He said he would really need to see all the values in your liver & iron panel and he asked what you are taking for your RLS? As a nurse myself, a ferritin that high makes me also me think of inflammation.
Trouble is, how do you get it into the brain. The point of having infusions is to get a sufficient amount in there as that is likely to be a problem. I can’t get them to give me an infusion here in the UK so having found the ferritin was 52 and I am in what the specialists would perhaps call a risk group, I am now trying to elevate it myself with some liquid iron and a good helping of spirulina. I can tell it’s raising my dopamine levels (spirulina is said to contain both iron and a lot of phenylalanine which is the precursor to l-dopa). But so far, there is no improvement in my sleep. It’s only been a month but I’ll keep going for another two and then have an iron test. Even if it’s a simple ferritin test, at least it says something. I do think iron is a contributing problem in my case but whether or not supplementation really helps, is another matter. I have a connective tissue disorder so maybe there’s an issue with the blood brain barrier, for example.
The RLS brain really only seems to have trouble storing iron, not so much sucking it up from our blood - called serum iron - which is completely different from ferritin. If we had trouble calling iron up from our blood then we would have RLS all day long. Serum iron drops precipitously at night and we get RLS. The non-RLS world has healthy brain iron reserves and they don’t feel so much as a twinge when serum iron drops at night. We do. That’s why I take iron about an hour before bed. Gets rid of the RLS in one hour - for one night.
Iron is the grease and glue that keeps everyone’s dopamine transport system chugging along. Since our brains store so little we rely VERY heavily on that serum iron. I recently read/saw a chart how in order to have the amount of stored brain iron as a non-rls person has when their ferritin is 200 we have to get ours up to 600. I think that’s amazing that we can do that. I used to be against infusions but if that’s truly the case it might be worth it to raise and maintain ferritin between 400 and 600. At a ferritin of 200 we with RLS have the same amount of brain iron as a non-rls person has with ferritin of about 15 - which is very little. We really need to be around 600 to see relief of symptoms it seems.
Thanks for the info. It’s very difficult to find resources that explain this adequately but then I guess research is in its infancy. If I said to my GP I needed to have a ferritin of 600, she’d be horrified as it’s well over the recommended dosage and even considered dangerous. She’s happy to do another iron test in a while to see where it’s at but she wouldn’t recommend it to be over, I don’t know, 200 maybe? I don’t think they’d give me an infusion in this country, UK (Wales). I’m hoping the slow road of taking liquid iron will get me there. I will have to see about taking it at night. I worry it’ll pick me up too much. But yes, apparently it’s better to take it at night for the sake of the absorption. To be fair I personally do seem to absorb vitamins and minerals so that’s probably not where the problem lies as you say. I managed to get some other values tested along with the iron and they were all fine. The one that I’m a bit concerned about is B12 as I have mostly eaten vegetarian since 15 and though I did have sufficient stores, there is a question as to whether some of us with chronic illnesses would gain from having higher levels. I haven’t looked into this idea at all, do you know anything about how B12 behaves in the brain especially in relation to iron and RLS?
I think b12 and iron work synergistically? So yes, take both, but at different times. If you’re like me, the iron will be sedating. You just have to try taking the iron at night a few times to see if it alleviates your RLS immediately. If not, then you can decide when is most convenient for you. Ferrous Bisglycinate is the most bioavailable. If I were to take ferrous sulfate (which I did one time) it would not provide relief. Good luck. Please keep me posted.
Thanks for the tip. I’ve been upping it slowly and have actually been feeling tired in the last couple of days as I started on a higher dose so may well be the iron. I was worried it might push up the dopamine in a way that would pick me up. I can’t use iron bisglycinate as I’m senstivie to glycine which it’s bound to, makes me *almost* hallucinate, haha (though not funny really). But a combination of two liquid ones and the spirulina seems to be helpful. Yes I just read up a bit on B12 and the bottom line is, they don’t know yet but think it could play a role for some people. My value was slightly lower than what experts recommend so I’ll be working on that, too. Thanks 👍
No question- infusion is the key to raising levels because our gastric system limits absorption. Sounds like you are doing what you can to maximize the benefits of oral iron.
For oral iron options, the amount of “elemental” iron is the key because that is the maximum amount that is available for absorption. Labels can be a bit misleading and often confusing. Here’s a picture of what my RLS specialist recommended - note the elemental iron is 150mg, which is rather high. Most iron supplements usually contain closer to 65mg of elemental iron. Of course, I would recommend taking a small dose of Vitamin C concurrently. (with any iron supplement that doesn’t contain it).
Ferrex 150 (available over the counter in US pharmacies and on Amazon)
I have IBS so am trying to find a liquid iron on the UK market, and it’s really difficult since I want to avoid vitamin B’s and sweetener. A problem I’m encountering is that higher doses make my insomnia worse. Clearly my issues are rather complicated. I don’t seem to be able to handle the way it stimulates the dopamine, at least that’s my current theory.
Wow! I’ve been there with IBS. I feel for you! Fortunately for me, minimal diet changes, daily probiotics and adaptogens helped me eliminate nearly all IBS symptoms and all IBS prescription medications. I hope you find some relief! 🤞
Ahhh the Seratame article. I have read that infomercial before. Although I do agree with much of the information contained in that advertisement, it always makes me a tad skeptical when an article ends with “buy this.” Thanks for sharing.
Fair comment. However, the poster does make the point that he doesn't recommend the product as such. He just purchases the ingredients and takes them in his own way.I have tried turmeric in quit large volumes in coffee and cooking , but found no real change in pain.
I don't know enough about the discussion on blood brain barrier and infiltration etc etc. My eyes tend to wander/ glaze over when too much science come before them ! 🙄😝
I have written to the commenter as well because I think it would be super helpful to know exactly what supplement/vitamin/mineral regimen he follows.
I was neuro nurse for years and I am blessed that my RLS doctor happens to be leading and/or involved in much of the research that takes places across the globe. More important, he is passionate about RLS and open minded. He is an advocate for all of us. He is one of the rare people without RLS who seems to actually understand how much this impacts our lives and how poorly educated medical communities are about RLS treatments. I am so glad to have come across this site and people like you who are so willing to share information. ❤️
I have read, and been told about ferritin testing for RLS. Every time I have a blood test I have never been asked to fast beforehand. I asked the nurse who last took my blood, who said that 'they' don't use fasting for iron levels now, as it makes no difference. 'They' I also note, do not accept that RLS sufferers results should be is read in a specific way, and over '100' is required, but no doctor I have seen thinks that that is important. In fact they look confused. I have tried to show them the research available, all to no avail. How can we ever hope to be given an iron infusion against this lack of knowledge.
The fast is not for the ferritin test but for the serum or total iron test. That result varies widely with food intake. Also, since that number is used to calculate per iron saturation, two of the four tests in an iron panel may be compromised.
A morning fast is sufficient. (Info is from Johns Hopkins)
I feel for you. As for the nurse not knowing the importance of fasting and not taking any iron supplements for at least 2 days prior to serum iron levels, well he/she clearly doesn’t know everything. I routinely have copies of white papers with me whenever I visit healthcare providers. I feel like I spend a lot of time trying to educate other healthcare workers.
Very true. Serum iron levels are only a possible indicator of what iron levels are beyond the blood brain barrier. Hence the reason no one can really know iron levels impacting RLS patients until post-mortem.
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Can anyone offer some help regarding my Ferritin levels for my RLS please.
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