After finally finding a doctor who understands RLS, and who of course knew to send me for iron check—my iron ferritin came back at 44.
So thankful.
He wants to do a sleep study- I was hopeful for an iron injection- maybe I can ask for one after the sleep study which I’m pretty certain will be just fine.
I’m on my 3rd week no DAs, seems the really bad emotional days are getting farther between.
Now I’m on to read how you all get your iron up. I’ve always taken an iron supplement, Vit D prescription and B12 shots, so I’m confused how my numbers can be so low. I haven’t been 100% consistent, so will see.
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I love the idea of transdermal iron - did you use the patches every other day and how did you work that with the 40mg pills in terms of dosing? my ferritin is about 13 (it's a wonder I'm still alive LOL) and has been for about the last 10 years and I am desperate to raise it
I took 2x 25mg of ferrous bisglycinate in pill form and one patch from PatchMD together- every other night. The other night I took nothing. I managed to raise ferritin to 200 (from 45) over 18 months- 2 years by this method. It didn’t really make any difference for me- I’m clearly one of the 20% non responders.
Thank you so much for this information - I will give the protocol a try if my test results come back showing ferritin is still low [did my tests today]. What do you mean when you say "it didn't really make any difference for me" - do you mean that you didn't feel any better for getting your level raised?
Yes. Dr Winkleman and Dr Buchfuhrer are two of the world’s top RLS experts and routinely give iron infusions for RLS. The statistics show that 60% have dramatic improvement, 20% moderate improvement and 20% have no change to their RLS. I raised my levels but it had no effect on my severe RLS.
However, 80% do get a result so the odds are in your favour.
Hi Joolsg - that's a shame that after all that effort you didn't get an improvement. I have actually migrated over here from the thyroid forum. Peeps with thyroid problems need to have good ferritin levels for their thyroid hormones to work properly which was why I searched 'iron' on the HU forum and ended up here, so I'm just hoping to successfully raise my ferritin levels and hopefully see an improvement in my thyroid condition. The advice here about how to supplement iron was new to me so thankyou for your help.
The problem with taking an oral iron supplement is that it's absorption is regulated by a hormone called hepcidin. This is to prevent iron overload in the blood. Simply put, if there's enoigh iron in the blood then hepcidin inhibits any more being absorbed.
If you not suffering iron deficiency anaemia then, there's no point in taking a prescription dose of iron daily, most of it won't be absorbed.
As Jools says there have been studies to show that more is absorbed if you take it every other day rather than daily.
In order to promote absorption it's also better to take it on an empty stomach, plus, drink a glass of orange or take vitamin C at the same time. The ascorbic acid helps absorption.
A further measure is to take it in the evening, I believe this is because intestinal activity is slower at night and this gives it more time to get absorbed.
If you take antacids on a regular basis especially proton pump inhibitors or H2 inhibitors, this will prevent the absorption of iron, magnesium and vitamin B12.
If you have B12 injections because of macrocytic anaemia (B12 deficiency) it does suggest that you have an intestinal malabsorption issue.
This might explain why otal iron supplementation isn't working very well.
I do have to take B12 shots, and high dose vit D prescription. My B12 always comes back ok with blood work, but they put me on the B12 shot because of symptoms.
B12 is only really necessary if you have a deficiency. The same with vit D. They will both improve RLS if you have a deficiency, otherwise they won't. They're not usually a treatment for RLS.
If you've np malabsorption, oral B12 is probably sufficient. Do you pay for the shots?
The neurologist ( who was so wrong about so much) put me on the B12 shots for the all over body stinging feelings. He never checked for blood levels for anything. This was when he had me augmenting on the DA, had zero clue how sick he was making me. now that I’m off DAs the stinging has disappeared, at least for now. My vit D has been continually deficient for the past few years...I wonder if my iron ferritin numbers have also been low for years since this was the first time that was checked. Such a puzzle.
I’m hopeful getting my gut health better may help with these deficiencies.
Hi, yes all over stinging sounds like the neuropathy caused by B12 deficiency.
That your blood tests for B12 always come back OK means the shots are working. I think it unlikely you would have been started on them if your blood tests originally were OK.
If you have intestinal problems, then it's highly likely you have nutritional problens due to poor absorption.
B12 particularly requires the presence of a substance called "intrinsic factor" (IF) secreted in the stomach. In the absence of IF B12 may fail to be absorbed and this can lead to generalised neuropathy and "macrocytic" anaemia. (Sometimes called "pernicious").
Iron also can be affected by malabsorption.
If you're taking a proton pump inhibitor antacid ( a prazole), this can cause malabsorption because they also inhibit IF.
Whatever the cause of the malabsorption taking oral supplements would be of little effect
The only thing that worked for me is nicotine replacement tablet. It gives me instant relief without needing anything else. Good luck with finding a cure.
Not much more to say really. I take a little bite of a nicotine replacement tab when RLS starts and it stops. I joined this group just in case it helps others.
This is very interesting to me. I read a article in Scientific American About the neuroprotective effects of nicotine. It seems there’s a correlation between smokers and NOT getting Parkinson’s.
This maybe it, I don’t have time right now to re-read it.
Thanks for reminding me.
For some reason I can’t paste the link, but if you google
Nicotine along with caffeine is listed in some sources as a RLS trigger.
Yet some people find that one or the other helps relieve symptoms after they've started.
There's no apparent reason for this, they're both stimulants, not usually good for RLS.
In addition nicotine is an acetylcholine agonist, which is the opposite of an anticholinergic. Yet some people claim that anticholinetgics also relieve symptoms.
Confusing!
It's interesting that nicotine is neuroprotective. Research is now finding quite a few things that are e.g. celery juice and an anti-inflammatory diet.
The downside of nicotine is that it's highly addictive and has harmful side effects. It is recommenced to help to quit smoking, this is because nicotine, on it's own is less harmful than smoking. In that case however, it's not meant for long term use and it's not harmless.
The main issue is it's effects on the cardiovascular system. So like other substances, it might be good for one thing at the same time os not being so good for others.
In which case maybe it should be restricted to occasional use for RLS, when symptoms "break through". If it were used in sufficient quantity to prevent RLS it might do more harm than good.
As something to be used to prevent RLS on a regular basis, it's not really advisable.
It doesn't say nicotine is "neuroprotective" though. Nor is it clear how this is relevant to RLS.
It does say it's possibly useful for delaying the progression of alzheimers and parkinsons. It doesn't say it prevents these however,
It also admits this is not conclusive and only suggests it as possibly therapeutic for these conditions.
It also implies that it being a stimulant, e.g. speeding up heart rate, is a good thing. That's not necessarily true long term. Increased heart rate and the vasoconstrictive effects of nicotine can raise blood pressure and decrease circulation.
Certainly, nicotine in the large amounts found in tobacco can cause ischaemia, gangrene, the necessity for limb amputation and cerebrovascular dementia.
Luckily the article suggests that nicotine tablets and even moreso patches release nicotine much more slowly than smoking or vaping, and hence may not be addictive. Inhaled nicotine acts within seconds.
This redeems it somewhat.
The article does say that nicotine is on the lesser end of the scale of harmfullness, it doesn't say it's not on the scale.
I am often misunderstood. If anyone should want to try something that could possibly help with their RLS, I have no wish to prevent them.
I just present information as it is and then folk can make up their own mind.
The nicotine, like the caffeine, has some (positive) influence on/through the adenosine. That is my vague recollection of stuff mentioned and discussed in a seminal paper by Ferré et al, 2018 (I think). I'll see if I can track down the exact relationship. Will have to find the energy...
Keep going, my insomnia went away! Took about 6 months to fully get there. My last Ferritin was 273, I plan to stay close to 300 if possible, for a year.
Personally I think Liquid Ferrous Sulfate is easier on the stomach. That is just me though. Any liquid iron I think is easier. Just a pain to travel with, the stuff stains everything it touches, including teeth.
I use a plastic syringe and squirt it past the teeth.
Use the link above and click on "where to buy". It's a patented formula, so all the retailers use the same source, Albion. I bought my from Vitacost - curiously enough - I have probably spent $500 on supplements and cure-alls for RLS - this is the cheapest one, about $5US, and I still have the original bottle 3+ years! No stomach issues, no constipation.
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