Iron info

[fritzb43]

Iron and RLS - and you

There is by now no question that iron therapy helps many if not most RLS patients. This has been proven in numerous studies, dating back to the 1950's. Yet nearly all physicians have never heard of the RLS-Iron connection, let alone how to treat it.

Many patients who have heard of RLS-iron, rightly or wrongly, begin self medication through the use of iron "supplements". These products, found at pharmacies, are primarily for the use of mildly anemic patients. They are not for RLS.

The preferred and standard method of iron therapy for RLS is intravenous IV iron - an IV is started in a vein in the patients arm and one of a number of iron solutions are delivered. This results in a fairly large amount of iron being delivered at once. "Into the vein, straight to the brain" as we say, but that is an oversimplification.

Oral iron supplements usually do not have enough iron to make a difference consistently. Also, ANY type of "supplement" should be monitored by your doctor.

There is a form of oral iron that is used for RLS patients. It is usually administered by a doctor, and is a temporary regimen before IV iron. Ferrous sulfate caplets 325 mg are taken by mouth, 2 to 3 times a day, on an empty stomach with a vitamin C tablet to aid absorption. Again, this is temporary and should be monitored by a doctor. For patients with severely low iron stores, and who benefit from iron therapy, may see fairly rapid symptom relief.

NOTE: Latest advice from the RLS doctors is that the oral iron should be taken every other day.

But (and there's always a 'but') massive doses of oral iron can cause significant gastric upset, in addition to black stools. Black stools are a result of iron that is (mostly) not being absorbed, another disadvantage of oral iron.

Bottom line: here's what I would do (and have done): read everything you can find on RLS and iron. Watch our short Hopkins and Mayo RLS videos on YouTube. Then insist on having your iron tested correctly, the RLS way, called an iron panel - 4 different tests with morning fasting. Check your results against the Hopkins guidelines. (Which we will post soon.) If you are severely low, talk to your doctor. Be assertive. Tell him you'd like to try iron therapy as described here. Hope this helps and the best of luck to all of you.

[amrob123]

More than 50% of GPs (primary care doctors) in Australia are female.

[Shedboy56 in reply to amrob123]

And of what significance is that please, if any?

[amrob123 in reply to Shedboy56]

Read the original post and you may understand.

[SueJohnson in reply to Shedboy56]

Where it said "tell him."

[SueJohnson]

Yes every other day is advised as more is absorbed. Taking it 2 to 3 times a day does not increase the amount of iron absorbed because when you take iron hepcidin is released which prevents one from absorbing any more iron for 24 hours.

The main thing is the amount of elemental iron in iron tablets. The 325 mg of ferrous sulfate contains 65 mg of elemental iron, but for people with really low ferritin, one wants 85 mg. Above that it is a waste,

Iron bisglycinate (gentle iron) whose mg is equal to the elemental iron is best for those who have constipation or stomach issues with ferrous sulfate.

Iron infusions are best for very low ferritin but can be hard to get and expensive if not covered. And most doctors won't prescribe them unless your ferritin is very low like below 50 or 60 if they prescribe them at all.

[LotteM in reply to SueJohnson]

Sue, where did you find to take the higher amounts of elemental iron? The other day I happened to read a paper that actually said that also larger amounts of iron cause hepcidin to linger longer. (Something along those lines, my memory is poor). And relatively low amounts every other day was their advice, a bit like ‘low and slow’. I think I remember they advised 40mg elemental iron.

However, I do think there is never a one size fits all. If your iron (including ferritin) rises steadily with a certain amount and frequency of iron, stick to what works. Otherwise, tinker with it, but always try to evaluate by repeated blood iron panels.

That said, it has been years since I had my iron assessed. I should contact my gp and get one. Preferably every 6 months or so.

PS. Sue, also edit your second phrase. I think you meant it to read 2 to 3 times a day (not ‘days’).

[SueJohnson in reply to LotteM]

Thanks for noticing the edit needed. I have changed it.

The source for 65 mg is the Mayo Algorithm.

The source for 85 mg is hopkinsmedicine.org/neurolo.... However looking at it they have changed it because it does not include a lot of things I had it as a source for.

Yes on causing hepcidin to linger longer but not more than 48 hours. sciencedirect.com/science/a...

Yes less is absorbed as a percentage as the amount of iron is increased but the absolute amount of iron is still increased ashpublications.org/blood/a...

[Eryl]

High iron evels can cause damage so I wouldn't advise intravenous iron suplementation. Many people will be able to increase iron levels to normal by changing their diet. youtu.be/lwcqaUPm6eA?si=Zpu...(Not working as expected?)

[SurvivorD in reply to Eryl]

Thank you Eryl.........diet diet diet........heals heals heals!

[DicCarlson]

I would disagree about the iron supplements. I had raging RLS - even in my arms - zero sleep. Ferritin level was 49 (fine by docs). Not even knowing what RLS was, I eventually found blackstrap molasses as a "home remedy" for RLS. Well, it cut into the severity and I researched more to find Ferrous Bisglycinate Chelate. Within a week the severe RLS was fading and in 3 months I raised the Ferritin to 105.

I am somewhat convinced that gut dysbiosis was a key to low ferritin in the first place, probably caused by a course of cipro and Small Intestinal Bacterial Overgrowth (SIBO).

[Purpleyam in reply to DicCarlson]

Hi DicCarlson, I am quite interested in the gut health - brain health relationship. But would like to ask you what supplement you'd recommend for possible Sibo, or gut disbiosis. I've been on vacation and my digestion is 'yuck' now from eating and drinking. It certainly does affect the RLS severity. I'll be back to clean eating but think I need something more. Thx

[newlife54]

I am based in the UK and it is like pulling teeth getting anything done here. I am still waiting for an appointment to get the Iron Panel done (2 months so far ). Does anyone know if the Iron IV treatment is available in the UK ?

[SueJohnson in reply to newlife54]

It is available but it can be hard to get. Where do you live? I may be able to tell you who will prescribe it for you and again depending on where you live you can get one privately for around £800.

However until you have your full iron panel and get the results, that is putting the cart before the horse.

[newlife54 in reply to SueJohnson]

Thanks Sue believe it or not I am still waiting for this. The only thing that has come through is the neurologist has declined to see me (again) . Not cool !

[SueJohnson in reply to newlife54]

You can get one privately at The Iron Clinic in Manchester for £800.

Unbelievable about your neurologist.

[newlife54 in reply to SueJohnson]

I live in Halifax, West Yorkshire

[Midnightblues in reply to newlife54]

I live in Cornwall and my Consultant Rheumatologist has arranged iron infusion for me tomorrow at Royal Cornwall Hospital (ferritin 27). I don't know if you can ask for an 'out of County' referral but it's worth a try, even if you have to go private. I'll be posting on here if it makes a difference.

At the moment I have severe RLS every evening from about 5pm to 2 or 3am when I go to bed for approximately 3 hours sleep. I occasionally get it during the day if on a car journey of more than 20 minutes, or sitting at a meal, film etc. It has been a long road and I've had zero interest from GPs, you would think they'd take an interest and do a bit of research when presented with a case they know little about but this doesn't happen, it's not 'trending' like ADHD or autism (not to diminish their severity). Also the surgery receptionists are like 'gatekeepers' whose main aim is to ward off patients seeking appointments!

The medication I take is Pregabalin 300mgs around midnight. It doesn't work very well at keeping me in bed and I wonder about taking it earlier for some relief during the evening. I was on a higher dose but weight gain prompted me to drop down as I have severely arthritic knees.

I would keep pressing for the infusion. I was reminded by a retired nursing friend that doctors have a 'duty of care' for patients, a phrase that sometimes jolts them into action. Good luck, it is a long and stony road we have to travel, you're not alone.

[SueJohnson in reply to Midnightblues]

Did you ever message Dotmowatee to get the name of her doctor who will prescribe taginact?

[Midnightblues in reply to SueJohnson]

Thanks Sue, Dotmowatee has been very helpful and I believe she saw neurologist Dr Robin Fackrell in Bath, and I will contact his secretary to see if he will do a zoom chat as I don't find travelling easy since losing my partner. Then it will be a question of persuading my GP!

[newlife54 in reply to Midnightblues]

Thank you my doctors are useless and the neurologist after telling me its anxiety, as refused on 2 occasions to see me again, even after explaining to the doctor, how bad my symptoms are 24/7. Nightmare