Iron article

[marsha2306]

Iron

The presence of low iron in key areas of the brain has been implicated in the pathophysiology of RLS. Iron therapy, therefore, may be beneficial for treating RLS. Iron therapy can be either oral or intravenous. In a 12-week, randomized, double-blind trial of oral iron (ferrous sulphate, 325 mg/bid) versus placebo in patients with RLS who had ferritin levels between approximately 15 and 75 ng/mL, the oral iron treatment resulted in a significant improvement in RLS symptoms (P = .01).12 Thus, oral iron may be an important treatment option for patients with low or low-normal iron levels.

A number of studies have investigated intravenous iron for RLS. A recent study13 enrolled patients with moderate-to-severe RLS and low-to-normal iron levels; current RLS treatments were discontinued. The study found that the patients receiving treatment with a newer formulation of intravenous iron, ferric carboxymaltose, experienced significant improvement in RLS scores (P = .04), and 25% required no RLS medications at 24 weeks after the iron treatment. No significant adverse events were reported.

All patients with RLS should have their iron levels assessed using appropriate serum indicators such as ferritin levels, percentage of iron saturation, total iron-binding capacity, and early-morning fasting iron levels. Serum hemoglobin level is an insensitive indicator of iron deficiency. Low hemoglobin levels can indicate anemia, but an individual can be severely iron deficient for months or years before becoming anemic. Serum ferritin levels can be deceptive, too, because they increase with age, decreasing renal function, and inflammation.

Symptom improvement probably will not fully occur until 4 to 6 weeks after the iron infusion is given, so any decisions about the effectiveness of iron treatment or whether to discontinue other RLS treatments should not be made until this point. Clinicians should attempt to determine the serum ferritin level at which a patient’s RLS symptoms are most improved and then monitor the patient’s RLS symptoms over time, re-checking ferritin levels if symptoms worsen. Ferritin levels should be checked about 8 weeks after infusion, and 2 additional readings should be taken at 4-week intervals. In this way, the clinician can get an idea of whether the patient maintains a fairly stable iron status or loses iron rapidly. As long as the patient’s ferritin level is below 300 ng/mL, intravenous iron treatments can be repeated as needed to address symptoms. Based on clinical experience, a rough guide for determining an appropriate dose of intravenous iron is that every 100 mg of infused iron should increase the patient’s serum ferritin level by 10 to 12 ng/mL.

[Madlegs1]

So , why do I have massive RLS with ferritin level of 1185?😈

[Grammieof4 in reply to Madlegs1]

No idea 😱 unless it's all of those factors together... iron binding capacity; iron saturation.

I can try to sneak in that question when I'm there on Tuesday.

[Hidden in reply to Madlegs1]

Check it -

ncbi.nlm.nih.gov/pubmed/215...

ibsdiets.org/fodmap-diet/fo...

[Jeanniebeannie in reply to Hidden]

Still dont believe that at all.

[Joolsg]

This is all really interesting and I shall be asking the neurologist I am seeing on Friday at King's College Hospital London if they will consider iron infusions for severe refractory RLS. My serum ferritin is 109 but I still get RLS every single night.

Tonight, despite 10mg oxycontin and 50mg pregabalin, my legs are still playing up. I am not sure I agree with what your doctor has said about 900mg of gabapentin giving a straight night's sleep and that you will sleep if you maintain good sleep hygiene ( getting up at the same time each morning and only trying to sleep when you are really tired). I am always really tired and despite only trying to sleep when I am really tired, the RLS keeps me awake for hours.

Let us know whether the gabapentin taken at night in one dose gives you uninterrupted sleep and keep us posted on the effectiveness of the infusion in several week's time when it is due to take full effect.

I really hope it works,

Jools

[Hidden in reply to Joolsg]

I think neurologists are just throwing all these nerve meds at it in the hopes that something works without really knowing wtf they're doing..

[Grammieof4 in reply to Hidden]

Sucks for us.

[marsha2306]

Well, it's now 1:00 am and I am still not sleepy enough to fall asleep. I thought I was at midnight, but here I am. It's not the RLS keeping me awake; I have absolutely no idea what is.

[involuntarydancer in reply to marsha2306]

Grammie, many believe that there are two dimensions to rls - one is the squirmy urge-to-move ghastliness that wakes you, keeps you awake and, in its more extreme form, keeps you out of bed; the second (which it sounds like you are experiencing) is an extreme alertness at night which prevents sleep (even if the urge-to-move is under control). I believe it is thought to be caused by an over activity of the glutamate receptors. I find it a major problem. I can lie awake all night.

Some take gabapentin/pregabalin to help induce sleep. For me the only thing that works is cannabis taken as an edible (it lasts much longer in the system that way). It is hard to come by for me as it is illegal and I typically live a fairly conventional life and am not a recreational drug user.

I would love to know of other means of addressing this problem.

[Grammieof4 in reply to involuntarydancer]

I, too, stare at the clock all night 👎😓.

[FLAME43]

thank you for this concise article

[Jeanniebeannie]

Just would like to say people always go on about iron as if its the awnser to rls .i have severe rls at times and had my blood checked .i have the menopause so its not peroiods that make me have low iron levels cause i had it all checked out and tho been on iron every day now for months has not made any difference to my rls .so not the awnser for me anyway.

[Hidden in reply to Jeanniebeannie]

check it -

ncbi.nlm.nih.gov/pubmed/215...

ibsdiets.org/fodmap-diet/fo...

[Hidden]

Jeaniebeanie, you are right on that, iron is not always the answer for everyone.

[Hidden in reply to Hidden]

ncbi.nlm.nih.gov/pubmed/215...

ibsdiets.org/fodmap-diet/fo...

[Grammieof4]

I'm praying that an infusion instead of oral iron will still do the trick for me. He said it takes six weeks to fully know and blood tests every 6-8 weeks and then infusions 2-3 times a year. Gabapentin is working well for me now at least.

[Madlegs1 in reply to Grammieof4]

I'm getting blood taken out to reduce the ferritin!

You're putting iron in!

Hmmmm!😂

Mad!

[Grammieof4 in reply to Madlegs1]

It stinks

[Hidden in reply to Madlegs1]

Hi Madlegs, I also have blood taken out by venesection. In the early days, when I had just been diagnosed with hemachromatosis, the hospital got my ferritin level down to the 20s and kept it there, and I'm fairly sure that's when I started to get RLS badly every night. Now the nurses say they aim for 70 to 100 and I'm mostly around 70. I did get it up to 100 at one time but it didn't cure my RLS.

[picol in reply to Madlegs1]

Madlegs I am interested in your comment.

I have a ferritin level of 686 and have been diagnosed with hematomacrosis, with some other blood tests too.

So far no one has suggested phlebotomy. Peraps it would help me.

I saw a sleep specialist today who knew nothing about rls, said I could have no more than Pregabalin 150 mgs daily and definitely no more than Oxycontin 10 mg, daily.

Who knows what it might do to an 80 year old/ she said. Too risky.

Well she might want me to die of sleeplessness.

Very frustrating.

Wants me to be tested for sleep apnoea (her Specialty) at a cost of $150 Australian

[Madlegs1 in reply to picol]

Hi Picol- the whole area of phlebotomy (phleb) is complicated.

I get good advice and information from the Iron Disorders Institute. They have an email only chat site but answer questions very promptly- allowing for time difference!

I'm a good bit younger than you (70) but Dr Buchfurer is happy with oxycontin for us wrinklies at 20 to 30 per day longterm.

Drs do have concerns with opiates in the elderly for medical reasons- but my reply to that is - at my age I'm entitled to a reasonable quality of life no matter what the consequences.

Whether you need phlebs depends on your symptoms- liver problems , fatigue and so on.

I'm 1200 but absolutely no symptoms- however , I need to rule out excess iron causing damage and am happy to try phlebs if it reduces any risks long term to my health.

All the very best to you for the future.

[picol in reply to Madlegs1]

Thank you Madlegs for so much help. It is hard to know just how to cope with the medical profession really at times.

Just so much lack of knowledge, empathy and willingness to help.

I just need to find something authoratative to print out to take to the GP in the way of guidelines, perhaps from DR Buchfuhrer.

I will try to buy the book mentioned elsewhere on this site which I had never heard of, the Clinical Guide to Restless Legs Syndrome, which would be helpful perhaps.

As for my ferritin levels, I am inclined to leave well enough alone, at my ripe old age.

Best wishes to you Picol

And so many thanks to all who gave me helpful advice,

Such a caring community indeed

[Madlegs1 in reply to picol]

There are good articles in links on these two sites.

rls-uk.org

rlshelp.org

Search " sleep review" on this site- that should pick up one good one.

Otherwise just google " Dr Mark Buchfurer" and his articles will all come up.

Good luck.

[Grammieof4 in reply to Madlegs1]

The article on iron explains it so well. The doctor in the video just after the article is the doctor I see at John Hopkins Hospital.

My ferritin level was 70 so he sent me for the iron infusion on March 10. I am to keep up with the Gabapentin, which has been a lifesaver and have my levels rechecked on May 10. If they are high enough I am to taper down on the Gabapentin and see if the iron worked for me. Crossing my fingers.

[involuntarydancer]

I understand that recent research concerning the genetic predisposition to rls has shown that there is an appreciable minority for whom even very high serum ferritin levels will make no difference. I wish I was better at retaining the science. I believe it is posted as a webinar on the rls.org website. You may have to be a member of the foundation to view it.

[Hidden in reply to involuntarydancer]

Exactly.

[Hidden in reply to Hidden]

Exactly what Elisse?

[Hidden in reply to involuntarydancer]

Who or whatever the source is I couldn't agree with them more. From my experience and others on here it seems to matter less how high one's bodily ferritin level is versus just taking the right form of iron at the right time. By way of example, Bganim had been taking ferrous sulfate x2 a day and it did nothing for her RLS caused by large doses of DAs. Then she switched to ferrous bisglycinate at night and BINGO! Makes sense, no? Imagine a person whose iron stores are at 50 and they have no symptoms of RLS by day but severe RLS every night. That 50 level iron store serves them just fine by day. Sadly that 50 iron does nothing for them by night. So is pushing it up to 75 gonna be the ticket or 92 or 103 or 200 or 300? Or is the way to go just taking a highly bioavailable form of iron? Is it possible that not only will it relieve the RLS when taken but that it also leaves slightly better receptors in it's wake? So for you it didn't provide immediate relief but night after night the bisglycinate crossed your blood brain barrier and shored up your receptors over the long run. I believe this is what happened to Raffs as well. No immediate relief but then as time went by, like wilted flowers after a rain, his receptors perked up and the symptoms of RLS dissipated. Same for DicCarlson. Sadly, doesn't last. Those flowers will wilt again eventually without the rain.

[DicCarlson]

Someday, someone will find the connection. Curious that 20-30% of pregnancies involve RLS and it has a connection to Iron, folate or hormonal changes with a rapid disappearance after delivery. My RLS responded dramatically to Iron supplementation - within days. Insomnia continues and has been heightened by Mg supplements (go figure). But according to Johns Hopkins it is a prevalence of Glutamate over GABA in the brain - leading to excitability. A key hint is no sleepiness during the day even with marginal sleep at night - the Glutamate excitability continues during the day.

[Kaarina Administrator in reply to DicCarlson]

DicCarlson,

Unfortunately not all women who start to suffer with RLS during pregnancy find that it disappears on delivery or any time afterwards.

[marsha2306 in reply to DicCarlson]

If you are not already doing so, try to take the magnesium in the morning instead of nite and see if that helps.

[Vonnie70]

I've had RLS for many years ( my father had it also) my iron levels were tested 5mths ago and found them to be quite low. I was put on iron tablets but to be honest my legs have been awful since, however I've had a week of no symptoms, crap nights but not due to RLS. So connection between both doesn't solve my situation 😕

[Hidden in reply to Vonnie70]

ncbi.nlm.nih.gov/pubmed/215...

ibsdiets.org/fodmap-diet/fo...

[Madlegs1 in reply to Hidden]

Thanks for the link to the fodmap site.

I'll have to be perfectly honest and say I think it's a load of cobblers.

I would be dead in a week by following it.

Firstly , it's aimed at irritable bowel syndrome which I don't have. Or leaky gut.

I do have major issues with food intolerences which I have navigated over a lifetime of food diaries and simple trial and error.

It says not to eat avocados but the oil is ok!!??

It says I can eat peppers and rhubarb- both make me violently sick. Baking powder gives me severe rls.

I do stay away from wheat and lactose.

Anyway- good luck to those of you who are finding it useful and beneficial.

We are a wonderful mutual support group- long may it continue! 😍

[Grammieof4 in reply to Madlegs1]

I have never had any stomach issues at all in my 64 years

[mantel in reply to Madlegs1]

i totally agree

[Hidden in reply to Madlegs1]

Wow, baking powder gives you RLS? What's that all about? Avocados put sores in my mouth - very short lived. Let's face it Madlegs, your RLS went from 1 to 100 within five seconds after your accident. We gotta get you back to baseline.

I've convinced myself that like so many others I have read about you have high FERRITIN levels in the face of very LOW IRON levels. Once that is confirmed (or dispelled) by your doctors I think you will have the answers you seek.

[Joolsg]

I've been on low fodmaps now for weeks and it isn't making any difference. Obviously I'll keep it up for months but I don't think it's the solution for everyone. As we are all completely different genetically, we will all respond differently to meds, supplements and diets. Impressed with your perseverance in spreading the news though.

Jools

[Hidden]

I'm just trying to show that there is strong data supporting the connection between our intestinal health and neurotransmitters.

[Joolsg]

I absolutely agree with you on that. The nervous system is definitely affected by "leaky gut" but unfortunately, diet isn't the answer for some people.

It's brilliant that it works for you and others though.

Jools

[CookiesMummy]

Have RLS and anaemia, take ferrous sulphate every day, RLS is always really bad if I allow myself to get over tired. Also a complete and utter insomniac, usually sleep two hours a night, sometimes none, at absolute best four hours. All the women in my family are the same. Spent years trying different 'cures' nothing has worked. After forty years I've given up trying and just had to accept that that's just how my body works. Would love a miracle cure for RLS, but I won't hold my breath just yet!