Some of you may recall last week that I had been prescribed Ropinirole for my severe restless legs, which was occurring daily, starting in the early evening & also affecting my arms too.
On a side note, there was an issue with my bloods recently (I have several autoimmune conditions for which I have regular bloods done) & despite my GP saying my bloods were all good, I decided to check them for myself & noticed my iron levels were almost non-existent!
Long story short, spoke to another GP at my surgery (who was confused as to why I hadn't been notified & absolutely disgusted that I hadn't) who put me straight on Ferrous Sulphate (210mg 3 times a day). No sooner had I started taking the iron, the RLS has completely stopped. Haven't even started on the Ropinirole yet as it seems the iron has done the trick!
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Sher78
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It's great that you've now found out about your blood results. Not so good you weren't told before.
I wonder when you say ironlevels what you actually mean. If your results were low for everything then this means you have general iron deficiency.
The key result is the ferritin level. It has been shown that 50% of RLS sufferers benefit from having a ferritin level of at least 100.
If it's less than 100 then iron therapy can raise it to 100, which then relieves RLS.
Recommendations state that if ferritin is below 75 then an oral iron supplement may work. However if it's between 76 and 100 an IV infusion would be better. This does initially sound to be the wrong way round, but thete is a teason for it.
It's great that the iron appears to have worked for you and especially in such a short time.
What I would like to reassure you about is that oral iron supplementation can help with RLS.
The reason I say this because if your symptoms should return, this doesn't necessarily mean that the iron isn't working.
I know from reading and personal experience that when we are in pain and then take a painkiller, the pain can fade almost immediately. This is NOT actually due to the painkiller because oral medication takes at least 45 minutes to be absorbed.
Some information about oral iron and ferritin levels. One thing is that oral iron is only going to raise ferritin levels if there is no general iron deficiency. If there is a deficiency then any iron you take will be used to correct the deficiency rather than be stored (as ferritin).
The other thing is that even in the absence of actual deficiency it still takes a while to raise iron stores, i.e. ferritin. Possibly 3 months or more.
Then when ferritin gets to 100, it can benefit your RLS.
Hence unless there is some other factor I'm not aware of, then it seems highly unlikely that your improvement is due to raised ferritin levels.
Some further information which you perhaps need to consider.
It seems logical that the higher the dose of iron you take and the more often you take it, then the more effective it will be. Your doctor seems to think this.
SAdly, it doesn't actually appear to be true. It has been found that taking too much iron can make it LESS effective. It also been found that if it's taken more often than once every two days, then it's not as effective.
Overall, it seems restricting the dose to less than 60mg and only taking that once every 2 days can improve its effectiveness by up to 50%.
In which case possibly the only thing that taking iron as your doctor prescribed is give you bowel problems.
Naturally, I can appreciate you'd want to put more trust in what a doctor says rather than a person such as more.
Trying to get ANYTHING from the GP (even an appointment!)is a completely nightmare here at the moment. I was knocked back for B12 injections a while back because I was 'just' in the acceptable range so getting an iron infusion would be impossible. I haven't taken/stopped taking anything else recently so it does seem as if the iron is helping.
Hi Sher, I’m Sharon and I would like to say that OF COURSE the iron worked the first day and will every day thereafter. It usually does except not so much for people who have down-regulated their dopamine receptors via the DAs like Ropinirole.
You got a minute? Go get a cup of tea and I will share my story with you. I’ve had mild intermittent RLS since childhood. It never even had a name to me. In my early 40s I decided it would be a good idea to take a small amount of melatonin. My very mild RLS went bonkers and I didn’t make the connection. I looked on the internet and read on a blog just like this one to “just take some iron at night, there’s something about that free floating iron that seems to help.” I went to the health food store to buy some non-constipating iron because I have a sensitive stomach. I bought a kind called Gentle Iron which is a brand name for ferrous bisglycinate. I took it before bed that night. Within an hour I went from a whirling dervish devil incarmate to a sleeping beauty. 😑. It worked every night thereafter. Then one night I was out. The HORROR 😱. I went to the drug store and bought ferrous sulfate figuring I would rather be constipated than a zombie. Took a tablet and an hour later went smugly off to bed. The RLS was bad still. I thought WTF??? I waited a little while longer and took a second tablet. At some point I fell asleep, but first thing in the morning I bought more Gentle Iron and it has never failed me.
Then I increased the melatonin and the one capsule didn’t quite cut it. I went back on the internet and definitely came upon this site where I learned RLS is aggravated by melatonin. The day I stopped the melatonin is the day I stopped the iron. My RLS didn’t just go back to baseline it went totally silent for about two years. Then started to creep back, but no matter because I have the iron.
In the meantime, I was horrified by the stories I had read on here. Unlike the first time, I decided I should “pay it forward” as a member, Jools, recently quoted. I was essentially crucified back then. I didn’t care. Members were finding relief with this protocol (then leaving like I did) and I wasn’t going to leave until someone took my place. Well then 2016 happened and from 2017 until 2020 I spent my free time on Twitter sending out disparaging remarks about our Psychopath in Chief.
I’m back, but not for long, because I see the tide changing and 2024 and Twitter are calling me. Please don’t leave. Please come back on here once or twice a week and spread the word. Consider it your obligation. 😈. Ignore that man in the corner behind the curtain. He knows not what he does. The suffering on here and from RLS is unfathomable. I keep getting sucked further down the rabbit hole. I swore I would never go near the subject of DAs and augmentation, but within the last week I found I couldn’t stand the suffering and the iron doesn’t seem to touch these people. Just the way I needed to up the iron when I upped the melatonin these people may need to take 100s of milligrams of ferrous bisglycinate a night and even that amount might be just whistling in the wind.
Speaking of wind/long winded, it’s time for me to end my little story and hit the Stair Master. Looking forward to hearing from you again 😵💫
Yes, please, it will make me happy, and isn't that all that matters?
Just kidding. I consider you a soul sista. I too have the immunological pararade. Allergies to everything, RLS, IBS, IC, EOE and a few other acronyms. I will not compare conditions because I am all too aware of yours and know that you have a much bumpier road than I.
I truly believe you can cross RLS off your list. I know for sure the iron is not a placebo effect for you. You have multiple conditions, almost difficult to keep track, and you were due to start a DA. Your doctor told you your bloodwork was fine but you insisted on checking and saw some parameters were off and pointed it out to a doctor who prescribed iron. You had no reason to know or think that iron would help (or hurt) any of your numerous conditions, including RLS. And you especially had no reason to think it would provide complete relief immediately. So your story is totally different than someone in pain who is told they are being given a painkiller, but in actuality are given a sugar pill, but they still get relief. I bet like me over the years you have tried so many supplements it's mind boggling. My conditions started around the age of 7. By the time I was 40 and trying iron for my recently worsened RLS I expected it would end up in the circular file like 100s of others. To this day, iron is one of two supplements that provide consistent relief. The other is zinc carnosine for heartburn and gastritis. Never let someone suggest or tell you it might be placebo when a treatment is effective. We're too old and too wise.
Bless you! I think it's not necessarily about the conditions we have, it's how we're able to manage them. For example, I don't really look at my lupus as that much of an issue anymore because I have done so much research on it over the years so am able to manage it quite well now & it's been pretty much under control for the last 8 years or so. It's only taken me almost 30 years to get to this stage though. Don't get me wrong, when it DOES play up it does it in spectacular fashion, but I'm at the point now where I only take vitamin D3 & Hydroxychloroquine (specifically for the lupus) and manage with that perfectly well. Obviously pain relief when needed, but I only use OTC meds (oh, and also Maxalt for the migraines) and Oramorph when things are rough so compared to how I was 10 years ago, that is fantastic for me: I'm not having to take meds to combat the side effects of other meds which is always a bonus!
Couldn't find Gentle Iron in a store, so Walgreens Drug Store ordered it for me. Will be here in 2 days. I am so thankful I read about Gentle Iron on this site because all other iron supplements constipate me. I have had trouble with constipation all my life (memories of my mother giving me an enema as early as 7); was put on Miralax prescription stregth. Finally, discovered that oatmeal and brown rice are great sources of fiber to keep me regular! My ferritin level was 80, and my GP said it was fine. After all I have read here, I will start a regimen of Gentle Iron. 300-400 mg magnesium usually keeps the RLS at a minimum, but only after the overnight sleep study did I know I had PLMD. Hopefully, the Gentle Iron will stop that.
Note that iron is mineral, not a medicine. If you take an oral medicine, e.g. a painkiller depending on its rate of absorption you'd expect it to take 1 to 2 hours to work.
Minerals however, such as iron have to be metabolised. This takes time.
As an example, if you were suffering iron deficiency anaemia with a low haemoglobin then taking one dose or even a few doses of iron isn't going to correct the anaemia.
Similarly, the main reason that low iron is associated with RLS is because low levels of iron in the BRAIN causes RLS.
I appreciate that the article in the link is long and fairly complicated, so here's some of the main points.
Low levels of iron in the brain lead to dopamine dysfunction. Hence Brain Iron Deficiency (BID) is a cause of RLS.
Although low levels of iron in the blood and other organs can lead to BID, for people with RLS BID can occur even of there is NO general deficiency. This is because in primary RLS there is a dysfunction in the way iron is transported from the blood into brain fluid across the Blood Brain Barrier, (BBB).
Thus increasing blood levels of iron doesn't mean BID is corrected.
An important factor in taking oral iron particularly is not how much iron you take, but how much you absorb through the walls of the intestines. In turn this is controlled by a hormone called hepcidin. Hepcidin prevents iron being absorbed. Without hepcidin, too much iron could be absorbed and iron overload could occur.
This does for example occur in a condition known as haemochromatosis.
The amount of hepcidin released is dependent on serum ferritin levels. So if ferritin is low then the rate of iron absorption can be up to 20%. However when ferritin levels get above 50, less than 2% will be absorbed.
Hence the recommendation that if ferritin is above 75 then it's probably not worth taking oral iron.
Also note that if there is general iron deficiency then most of the iron absorbed is used to correct that and hardly any is stored as ferritin. That is, if there is general iron deficiency, as indicated by low serum iron and low transferrin saturation, then taking oral iron won't raise ferritin.
Raising ferritin is the aim of therapy for RLS since lower ferritin levels are associated with increasing severity of RLS.
Note that even in the absence of general iron deficiency there is going to ge a significant time lapse between oral iron being absorbed and it being stored as ferritin. There will also be a delay in this having an effect on brain iron levels.
Therefore taking oral iron is not going to raise ferritin levels immediately and it's not going to correct BID immediately, thus it won't relieve RLS symptons immediately.
Other studies show that ferritin needs to be raised to at least 100 to help with RLS. Oral iron can take up to 3 months for that to occur.
Further note that in the previous link I gave it is noted that it was found that taking any dose of iron more than 60mg can trigger the release of hepcidin. This will prevent the absorption of any further iron for up to 24 hours. This suggests taking more than 60mg isn't advisable. Further, there is no point in taking it more than once in a day. Taking it only once every two days increase how much is actually absorbed by up to 50%.
In conclusion, putting all this together, taking large amounts of iron several times a day, or even once every day may actually prevent it being absorbed.
Once it's absorbed there can be a delay before ferritin levels are raised and an even longer delay in raising brain iron levels.
There are two possible ways this process can be speeded up.
One would be to infuse iron directly into brain, this bypasses both the hepcidin problem and the BBB problem. However doing this would probably be fatal!
The other, accepted, way is to have an IV infusion. This bypasses the hepcidin problem.
However, it has been found that even an IV infusion an take 6 weeks or more to have any effect on RLS symptoms.
I'm sorry if this gives you conflicting information, your doctor ptescribes a high dose of iron, 3 times a day, your experience is telling you that the iron works immediately and the information I've given contradicts both of these.
I'm afraid you'll have to make your own judgment about which of these is most likely to be correct.
Me thinks he doth protest too much. Sher, you know any other condition that appears mainly at night? Besides Zombies? The unbound iron in our blood drops precipitously at night. Unlike the non-RLS world we have no brain iron reserves so we rely heavily and nearly exclusively on that serum iron. When it drops so does the vampire in us. Keep giving your brain some extra and highly bioavailable iron at night and you’ll be fine. And I’ll be fine. And some people just need to sit back, relax and enjoy the ride instead of throwing up road blocks. healthunlocked.com/rlsuk/po... Just one of many happy iron customers. Write her, she’s a sweetheart and would love to hear from you.
Thanks for all the info guys but unfortunately my brain fog is completely savage at the moment, so most of that has gone completely over my head (I shall read it all again once things have settled).Right, just to clarify a few things.
I am only taking 2 FS tablets a day (had a lot of bowel surgery when I was younger due to APS & Lupus so have very little bowel & it is extremely delicate so as you can imagine, anything that impacts on the bowels, such as iron, is an absolute nightmare for me. I also have Lichen Sclerosis, which again, if your bowels are playing up, can cause THAT to go into flare with the constant wiping).
The plan is (MY plan) to get my iron to a happy level & talk to my GP and ask if I can stay on one tablet a day.
I'm in the UK (which may make a difference in regards to blood results/meds etc & how they're read).
I have numerous bloods done regularly (I have lupus, Antiphospholipid, Raynauds, Sjogrens, hEDS (only recently diagnosed with that bugger) & Mixed Connective Tissue Disease (which actually may by hEDS and NOT MCTD in hindsight - I have to get this clarified by my rheumy), so my bloods are in relation to all that.
These were all at the lowest end of 'acceptable', which signifies that there is disease activity going on, inflammation, whatever. Others that were only JUST in range, WBC, Haemoglobin Concentrate. The only bloods that were at a 'happy' level were my platelet count & my red blood cell count...oh, and my lymphocyte count.
The blood test that I was looking at for my iron was my Mean Cell Haemoglobin level, which SHOULD be between 28.0 & 33.0 pg (if someone could decipher that in simpler terms!).
As for my iron STORE levels, I'm not sure what I'm looking for for that one.
You are very well informed. Most of this talk about iron and RLS is simply not computing in my MS damaged brain. Ferrous sulphate, ferrous fumarate, Iron glycinate? I was given a Genosight test and told I had the MTHFR mutation and was prescribed 15 mg of methylfolate. I also take methylB12. I have been told I have slow metabolism or poor absorption or something (?) and must have higher dosages of some meds. It's all so confusing to me. I was also advised to take from 4,000-6,000mg Vit C capsules or powder to prevent recurring pneumonia. That helps, unless I overtire myself (which happens if I socialize or even try to clean more than a room a day). I do believe each MS warrior has different metabolism, DNA. assimilation, absorption, cellular level absorption, etc., etc. So, its trial and error for all of us. Thanks to everyone's help!
Sher, I appreciate you may find it all rather complicated.
My personal suggestion is that you carry on taking an oral iron supplement whether this continues to relieve your RLS or not. I hope it does continue. I intended to reassure you that taking iron can be of great help. Don't give up even if it apparently stops working.
The most popular supplement for RLS is "gentle iron", ferrous bisglycinate.
Based on the evidence however the following are recommended
Take it in the evening as circadian changes in iron absorption favour better absorption.
Take it 1 hour before ot two hours after eating, this also improves absorption.
Take a vitamin C or folic acid tablet or drink a glass of orange at the same time, Do NOT take an antacid or magnesium at the same time.
Take it once a day and only every other day.
These are based on evidence not on my personal opinion or experience.
Thanks for that. Am going to pop in to town and pick up some gentle iron when I'm feeling more with it (I have had this 'super cold' for the last couple of weeks so feel more like a corpse than usual 🙄) & some vitamin C. Gonna see if the GP will prescribe me the Gentle Iron as it seems that would be more beneficial than the ferrous sulphate but we'll see. I am certainly gonna make sure I keep an extra close eye on my blood results now though rather than taking the word of the GP. As a side note, I have written a letter of complaint to the practice manager about the whole blood results fiasco so hopefully they may up their game a little.
Gentle iron is available from Holland and Barretts. It's not that expensive.
Your GP will probably refuse to prescribe it. They're not supposed to prescribe over the counter medications only prescribable ones.
Just to prevent any further misunderstanding, you will note I am encouraging you to take iron, I am reasssuring you that taking iron can benefit your RLS.
If you say that you're benefitting from it after taking only a few doses then I'm not disputing your experience. All I am saying is that there is no epxlanation for this and it seems contrary to the evidence. It seems lilkely that there is another explanation for the improvement. There is no100% certainty of anything.
The point I'm also trying to make is IF the iron apparently stops working, then do NOT stop taking it.
The other things that may help are vitamin B12 and vitamin D. These really only work if you have any deficiency, but since they're relatively cheap, you could try them anyway.
Some people swear by magnesium, but there's no real evidence on its effectiveness for RLS.
You'll read in this forum that members make all sorts of claims that this or that is a cure for RLS, various food supplements, amino acids, herbs, electronic devices high tech "thingies" and so on. Mustard, turmeric, even a bar of soap.
One thing is clear in this, that there is VERY strong evidene that iron can help with RLS.
I hope you get a good response to your complaint to your GP.
Just to point out that you can get access to your GP record online. All NHS GPs are supposed to give this acccess. I have been doing it for years. You can get all your GP blood results, and other tests in full as soon as they're available.
I ALWAYS ask for a paper copy of my blood tests. My GP consistently tells me everything is fine, except one time my Vit D level was 60 and he told me to stop taking Vit D. I ignored his advice because my research states MS patients should have level of 50. I also take notice of anything that is a few points low or high, and respond accordingly because I am very sensitive to low or high levels. It also helps me to make comparisons from 1 6 months lab work to the next to see if I am doing something right.!
Iron therapy was dramatic for me also. With raging RLS - I read that blackstrap molasses was a home remedy. It does contain a small amount of iron. So, one particularly hopeless night I tried a few spoonfulls and wonder of wonders it actually cut into the RLS. I then found the Ferrous Bisglycinate Chelate and never looked back. But, that was years ago and I don't supplement with iron anymore. I always wonder why I was deficient and why not now. FYI, I did have many months of sleep disturbances prior to the RLS that I tried to contain with melatonin. I have read recently that melatonin can deplete iron. So, that might be a piece of the puzzle.
I have always suffered badly with insomnia. I tried various medications but nothing ever helped or I didn't appreciate the side effects, so I just ended up being a permanently exhausted pigeon. I still get it now, but I have learned to accept it & kind of embrace it (gives me the perfect opportunity to catch up on some films etc while everybody else is asleep) and to be honest, with all my other health issues, chronic fatigue is pretty much a staple in my life anyway now. If I DO manage to sleep, I can easily sleep the whole day away, but I accept that it's just the way things are for me at the moment. In regards to the Restless legs, I haven't had a single bout of it since starting the iron. I had an instance yesterday afternoon when I THOUGHT it was going to kick in, but it passed. I haven't changed anything else food/medication wise.
I try to stay as 'med free' as possible due to being on warfarin (everything bloody reacts with that bad boy!) so was apprehensive about the ropinirole regardless, before I'd even started researching it, so if I can manage the RLS with iron etc, I'll be a happy bunny.
Sleeplessness is a symptom of RLS apparently. I've had insomnia for years and have learned to manage life sometimes without more than 2 hours sleep even when working.
It's a pity they've never bothered before 🙄 To be honest, our GP surgery is a complete joke at the moment. It's a case of going in and telling the Docs how to do their jobs at the moment because most of them don't seem to have a clue. The amount of times I've been in there for various things and they start consulting Google! It doesn't exactly fill you with confidence 😬
Exactly - particularly RLS. Some GPs actually think their patients are exaggerating the severity of the symptoms. The fact it's not taught at medical school or during GP or neurology training is a disgrace. 1 million people have it in the UK, 100,000 severely. Thankfully, my GP admits she knows nothing and is happy to read all the research I send her. I know many others are not so lucky.
GPs have access to all kinds of authoritative guidelines and "clinical knowledge summaries" and the "British National Formulary" provided by the National Institute for Health and Care Access, they will also have an "Athens" password which gives them free access to a range of journals such as the British Mecial Journal and Lancet to bibliographic databases such as "Medline", Cochrane Database etc all allowing searches for information organised according to "Mesh" headings or other systems. All "evidence based" information.
and they Google!!!!!
Sorry to go into a rant.
It's quite acceptable for members of this forum, I believe, to base what they say on what they've seen on some YouTube video or read in some popular health magazine, alternative medicine website, food supplement advert or what Dr Google says. WE know that this is not evdence and there is a lot of misinformation out there waiting to trap the gullible.
I don't disbelieve you, but the tbought that my GP might make decsisons about my care based on a google search is frightening.
I may get deleted for saying this, but I mean no offense to anybody I'm simply saying what I read another member on this site wrote.
It went along the lines of "Somebody or some organisation must have produced a set of evidence based guidelines for the management of RLS" I confess it's not an exact quote.
On the face of it, it seems a good thing to say, what worried me that it was a GP that wrote it!
I further rant!
Medicine is supposed to be an "evidence based" profession. This means that doctors should make decisions about diagnoses or treatment according to what the "best" evidence says. Best meaning the latest, the most credicle, the most reliable etc.
The best evidence is almost exclusively derived from research studies. I imagine a significant part of medical education is about accessing information, understanding and evaluating that information, then applying it to practice. This all entails a considerable level of skill. The criteria for awarding marks to assignments will include such things as reference to evidence. An assignment will not only require an infomed answer, there must be reference to the sources of the information. OItherwise the student may be accused of plagiarism and failed.
So after 5 years of medical education, a pre-registration year in practice followed by GP training, a GP uses google!
So pleased that this has worked for you. Since I started taking iron and magnesium, my RLS has eased (but not disappeared), though Ferrous sulphate upsets my stomach so I take Holland & Barrett Gentle Iron.
Had my first episode of RL last night since taking the iron, but in all fairness it wasn't too bad and lasted less than 30 minutes (more like my legs felts irritated, rather than them wanting to run the whole night). Iron levels due to be rechecked in a couple of weeks (GP will probably take me off it once it's back in a decent range 🙄) so have bought some Gentle Iron. Also, just to clarify, I am currently taking Ferrous Fumarate, NOT Ferrous Sulphate, as I previously stated.
Hi, I happened across this thread and noted that you have been diagnosed with hEDS. I have this, too. I have found that I don’t tolerate ‘gentle iron’ as it’s bound to glycine, and glycine is an amino acid that forms part of collagen. I don’t tolerate anything to do with glycine. It also seems to have the effect of increasing serotonin and that’s something I really don’t tolerate at all. I can’t use any drugs or supplements that increase serotonin without it making me very sick, depressed and increasing the RLS. Just thought I’d mention this because people can be quite insistant that iron bisglycinate is the answer, while it can actually make some of us worse. The same goes for magnesium bisglycinate. I take liquid iron, currently trying three different brands without additives to see what I tolerate - I have IBS and tolerate them just fine. Next thing is to see if they help over time. Cheers
I personally take ferrous fumarate and find that works brilliantly for me, I tolerate it well, plus it doesn't irritate anything (I have had several major bowel surgeries due to lupus and APS leaving me with a very delicate digestive system and IBD. I haven't noticed any impact on my hEDS either at the moment, nor any of my other comorbidities, but obviously we are all different. I sincerely hope you find something that works for you.
ok, thanks, that’s interesting to hear. I was just looking at ferrous fumarate online as it comes in higher potency than the other products. And wondering whether I would tolerate it. Maybe it’s worth a try! Haven’t found any liquid ones that are all that great though I do tolerate them. It may well be that when I tried the pills it was really the bisglycinate (glycine) bit my tummy didn’t like. Cheers!
It might be interesting to note that Sher has EDS (among other auto-immune diseases) and is on some of the same drugs you are on. If you don’t have EDS, which is very possible, then I think you are a victim of what I call the “medical domino effect.” You went from vibrantly good health in 2008 to an emotional implosion in 2009 which I assume led to the SSRIs, Seroquel and anti-anxiety meds. These meds should have been short term at best. It doesn’t sound like you had clinical depression or even GAD in 2008 which do require long term meds sometimes. I’m gonna guess these meds left you with fatigue and other symptoms for which more meds were prescribed. “Motion is the lotion” so when you’re not moving much and laying in bed you will end up with aches and pains which then leads to opiates and constipation. I wouldn’t be surprised if one of these drugs is triggering your pre-disposition to migraines. So now another med is thrown at you and another label. If you didn’t have CFS, Fibromyalgia, depression, migraines and gastritis in 2008 then I’m gonna assume all these conditions are the fruit of the poisonous tree. The poisonous tree being that first hospitalization and those first drugs.
Just a comment - I lived with a lot of crazy symptoms from childhood to teenage (partial temporary blindness when 17, later dx as MS), mostly kept going with adrenal (now adrenal fatigue), and never took any meds, except Alka Seltzer for stomach problems and Excedrin for headaches and menstrual cramps occasionally, BUT was diagnosed with Chronic Fatigue Syndrome when I was about 50, and 2 years later diagnosed with Fibromyalgia. My point is these diagnoses are not always the result of taking medications. I think a lot of us are born with a predisposition for certain ailments. My daughter was diagnosed with Crohn's Disease at 18, but had stomach problems since a babe in the crib. Research has stated Crohn's can be the result of DNA out of sync. I believe MS is the same. As for doctors, my RT daughter reminds me that it is called "medical PRACTICE" for a reason - a lot of it is practicing on the patients and discovering results.😜😜😆 We must be proactive!
I take ferrous fumarate, ferrous sulphate (which I've been on several times over the years for my constant low iron) has never had an impact on my RL. For some reason, the last time my levels dropped stupidly low I was given fumarate instead of sulphate and literally, I took the three tablets (morning, afternoon and evening) and for the first time in God knows how many years, I actually had no issues with my legs or arms. I honestly thought it was a coincidence at first, but after talking to a few members on here, I realised it wasn't. I take 2 a day now and it still seems to be doing the trick. My iron levels are still crap (they've been below 'satisfactory' for well over a year) so GP is happy for me to stay on the tablets, and I did also mention to another GP that I was worried that I would be taken off them when (if) my iron levels become "acceptable" because of the RL potentially returning and he actually seemed to know a little about the link between iron & RL, so has put on my notes that it is prescribed also to help with that.
Just an update: Iron levels are still shockingly crap (they believe I can't absorb it due to all the bowel surgery I've had and the fact that it is so delicate now) but on the RL front...the ferrous fumarate is working like an absolute dream, despite the fact my levels are so low. I find if I miss my evening dose (still taking one in the morning & one about an hour before bed), I can feel it creeping in. Also, if I end up staying up later (resulting in me taking my evening dose much later) , my legs start getting a little 'twitchy'. Experimenting a little with times and I have found so that I need to take my evening dose no later than 14 hours after my morning dose. This prevents any 'twitchiness' starting. Hope this helps.
Hi Sher, glad to see you are doing well still. It sounds like you’re in the experimenting mood, so would you consider taking both doses before bed? Where was your “bowel” surgery? Ferrous fumarate (which comes from plants) is absorbed in the very top part of the small intestine, right below the stomach. Iron derived from animal sources is absorbed in the stomach. You might be better able to raise your ferritin by using an iron supplement derived from animals. Good luck and as always keep us posted.
Nah, you're alright, I am one of those people who will only tweak things if the need necessitates and one in the morning, one in the evening seems to work well for me so I see no reason to potentially upset the apple cart as it were. It's an idea to keep for future reference though if things change. In regards to raising my iron levels, it's not possible fullstop; I eat a lot of iron rich foods (I have followed a high protein diet for years) and have had issues with my iron levels for easily about 25 years. I think originally it was believed it was due to my blood disorder and the fact that I had severely heavy periods but Hemo is convinced it's due to the surgery, which I'm inclined to believe as they removed most of my colon & ileum 28 years ago. I also noted your reply to agapepilgrim and just to clarify, I suffered from RLS way before I started taking my meds so I believe my RL is an issue in itself, rather than being caused/exasperated by medication. Obviously many meds cause RL as a side effect but I suffered long before I went on any of that. I'm just hoping that this continues to work for me as at least it's one less thing for me to worry about.
Hi Sher, just saw your reply. You are yet more proof that ferritin has little to nothing to do with RLS. If ferritin was the cause (and the answer) then I would expect people with low ferritin to have RLS 24/7 —- because ferritin is low 24/7. I believe the cause (and the answer) to RLS is serum iron levels which drop precipitously at night. But now that you’re adding some iron to your blood at night you are RLS free. 🌈💫🍀⚡️
From what I have read and how I understand it (although I may not quite understand it completely correctly because my brain fog is an absolute bugger), low iron does not equal RLS but those with RLS benefit from ferritin levels being higher, and as you have stated, I believe it is the serum ferritin levels that are important, as I know that my iron levels are still low (trying to find my test results to no avail), but my Serum iron level and my transferritin saturation level are both now in the normal range, which they have never previously been.
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