Haven't been on the forum for a while but always read the daily posts.
Having seen some research information from the John Hopkins Uni about Brain iron, I mentioned this to my neurologist. He said that I should not even be thinking about that without giving a reason why and totally dismissed it out of hand.
Is it a subject that should be aired more and is there any more evidence that anyone knows of that I could take at my next appt?
Because I do not fit all the criteria for RLS and I cannot toerate any medication, they all make me so very ill, he decided to go for an MRI scan of my head and spine down to my waist. It will be interesting see see if it throws up anything of use. Will keep the forum posted when I get the results which will be some time yet.
I suggest that you try taking both iron supplements about an hour before bed on an empty stomach. Works for me. It did not help when I took the iron in the morning or even the afternoon. Like you my iron level is around 100. Only a rare few seem to get relief this way. Worth a shot.
I took the advise of my doc to supplement with iron somewhat skeptically due to the horrific symptoms lasting for months and not having seen results for several weeks on iron, but I continued on my regimin. You do need to take on an empty stomach so I take it first thing in the morning with some vitamin C powder added to the water because Iron works best with Vitamin C. Don't eat for one hour post your iron/C supplement. I have been RLS free for a number of months now and this is news worth sharing!!! I will post it as an independent post as well so I can put this progress report out there. I have modified my diet quite a bit and avoid nearly all grains, and nearly all dairy among a few other personal triggers. I have been told that stimulants such as sugar and caffeine are a problem so I avoid caffeine totally and have the occasional sugar.
Interesting. I started out taking the iron in the morning and after about a week with no noticeable improvement I switched to nights and it worked that first night. A handful of us lucky ones get immediate relief by taking iron at night...every night. Then there are many more people such as yourself who get relief after taking iron for some time. Both lists seem to be growing with each passing week. All good news for a change.
I have been trying to raise my ferriten level for at least 12 months. It was 85 in 2017, 91 in Feb18 and I was happy to see it was 101 last week. My happiness was somewhat squashed when I thought a bit more so I looked up variability in Ferritien measurements. The info needs a good statistician to interpret but from what I can make out there are three points.
1. There is a lot of variation between analysis methods which apparently translates to between path labs. Hence you should try to get all your iron tests done by the same lab.
2 There is a lot of variation between measurments on the one person. Hence my s ferriten levels might all be the same. There is a trend that is "encouraging" but that might just be an illusion.
3 A ferriten level of 500 is not remarkable.
4 The ferriten level at which RLS symptoms disappear might be at least as high as 350. This is based on a recent report on this forum by two people.
If I keep taking tablets and IF the trend I shown in my results is real then it will take me only 28 years to get to 500. That means that an effective relief of the symptoms might be only 28 years away if I follow medical advice and take my iron tablets. I'll be exactly 100 years old.
On the other hand it appears that I could reach 500 with an iron infusion in a couple of months at the most. I might not need 500 but it seems that 500 is a safe level within the normal range so there doesn't appear to be a downside in going there. Perhaps higher if necessary but lets assume that everybody who can be helped by iron therapy will be "cured" by a ferriten level of at most 500. ( I am lucky because my doctor has agreed to arrange an iron infusion soon, I don't know if this will be covered by my fellow generous taxpayers or by poor little wallet. I will let you know)
Is there any good reason why the first line of attack on RLS should not be to use iron infusion to raise the ferriten level?
There seems to be a problem in getting iron infusion therapy in the UK for some reason. Is this also the case in the USA?
Does anyone know about European countries?
How about Australian RLS patients ask their GP to arrange an iron infusion with the aim of raising their ferriten level to 500? We might suddenly reduce our population of sufferers by 30% or 50% or something useful that can be quoted to encourage other countries to follow our lead. Think of the saving in a lifetime of drugs and misery. I am probably just paranoid but do you think its possible that big pharma doesn't want it to happen and spoil their drug sales? I just can't understand why GPs are so resistant to trying this treatment? Are they afraid of legal action because a big increase in ferriten is not in the basic manual of accepted RLS treatments? Even though the increase is within the limits recognised by the Path labs?
It beats me why the GPs are resistant but it seems that there is enough evidence around to make an attempt to test this possible "cure".
Of course their might be a rush of medical tourists to Australia to our iron infusion clinics, that will sprout like daisys across the country, so someone can make a profit. In our wonderful capitalist system this might be the justification the government needs.
My understanding is that it is one of the first treatments opted for by the Johns Hopkins doctors if serum ferritin is low. Dr Buchfuhrer too habitually gives iv iron if levels are low.
I too wonder why it isn’t done more regularly here and have tended to assume that it is purely due to a lack of knowledge by the medical profession on this side of the pond. I understand that there is a degree of risk with an iron infusion also - I think of toxic shock syndrome. Maybe that puts them off.
I am shocked at the response of the neurologist of crackingtonhaven. It sounds like he didn’t know about iron treatment and opted to make his patient feel bad rather than improve his own knowledge.
I wrote to Doctor Buchfuhrer to ask about S-ferritin levels and other things.
Here is the relevant part of his reply (with his permission to publish it on this forum)
"We have learned a lot about iron absorption and iron therapy for RLS in the past few years.
When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.
Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.
Ferritin tests can be fairly reproducible (and it is likely not a lab problem that causes variation) but must be done fasting without any excessive iron intake for the previous 24 hours. The other issue is that ferritin is an acute phase reactant so it may stay falsely high for as long as a month after inflammation (such as a bad cold). A low ferritin is always an accurate result while a high level could be falsely high."
Ookla, I have read that iron can be better absorbed if taken every second day rather than every day. Your body will not absorb it if there is too much in your system. My levels increased more swiftly once I started taking it every other day. I presume you also know to take it on an empty stomach an hour before eating and to take it with a something acidic such as orange juice unless you are taking iron bisglycinate (gentle iron).
But see also Graham’s post below about the difficulties with measurement etc. Raising serum ferritinlevels using a supplement is not easy.
I am starting to get angry about ferritin!! I know that's ridiculous but you know what I mean. It seems that there might be relief for a significant number of our population but it's not available for some reason. Why not? The GP says no infusion just take your tablets and we know that relief might be available in just 20 years time. This is silly. There appears to be a possible relief available in weeks or perhaps a couple of months by a process that appears to be very safe. The alternative the GPs offer is years on drugs that are definitely not 100% safe and must cost both the user and the tax system a large fortune. Has anyone asked Dr Buchfuher for his opinion on getting a massive iron infusion to bring the ferriten up to the top of the normal range just to see if this particular patient responds to this? Perhaps he does do this in which case the GPs of the world should be told that the preferred treatment procedure for RLS is to start by bringing up the ferriten level to normal.
We understand that it won't work for everyone but 10% would be pretty good and 50% would be wonderful!!
No, you are not. But maybe in this case Dr Earley of Johns Hopkins is the persons to contact. He and his group seem to be the leaders on the iron approach to rls.
It would indeed be very interesting to see reports of what the levels of ferritin ( and other serum indicators for iron) and RLS were before and after iron transfusions. And, how many transfusions and how the RLS had developed before and how it developed over time after the infusions. Good issue for a scientific / clinical results paper, I would think.
Dr. Buchfuhrer kindly emailed me the formula he uses for his patients so he clearly uses iron transfusion as a regular means of treatment. I guess the reasons your average GP doesn’t offer it are: (1) ignorance (the same reason they will recommend increasing dopamine agonists well beyond current upper recommended limits); (2) lack of facilities - my own GP has never administered an over iron transfusion and was not able to source the iron product recommended by Dr. Buchfuhrer.
Iron infusions are done in a hospital not by a GP. I expect Dr B is experienced that's why he can do them. It is done slowly over I think about 3/4 hrs
He seemed to think it would take up to 2 hours. Obviously, it would be optimal to get it in a hospital due to the risks but my GP did consider he could administer a transfusion at his surgery. Unfortunately it came to nothing. His surgery is actually located within a hospital as it happens but I don’t think that was the issue.
Ahh right, your doctor's surgery if located in a hospital then that explains that. If you really wanted to have the iron infusion done, then could your doctor refer you, if discussed. ? I know in the UK they dont seem to like to do them for RLS, risks maybe. I THINK we had a member on here a little while ago that did get one done, or it might have been another group i belong to, he lived in the UK.
My GP did it in his rooms, without any problems at all. It was only 200mg per three-hour session, so very slow and low. I think GPs are underestimated and underutilized. They are more than competent to put up a drip, so are their nurses,
It needs careful monitoring at the beginning, to watch for toxic shock, which is precisely what my GP did. He watched me like a hawk for the first thirty minutes.
I enjoyed it, time out with a cup of tea and with people I know and trust completely. No battery of neon lights and bleeping machines.
Here is an article on iron and RLS that might be interesting. Someone else may have already posted it but it looks worth repeating and its fairly recent.
I haven't studied it because that will take me a week!
Evidence-based and consensus clinical practice guidelines for the iron
treatment of restless legs syndrome/Willis-Ekbom disease in adults
I read in a product info leaflet that iron infusion should be done in a hospital because there is a risk of a bad reaction. You should have a very small infusion and then (if you are not in the emergency ward) have the full treatment about an hour later.
In the doctors rooms are fine if everything goes well BUT Once in a million infusions some one dies during or as a consequence of an iron infusion.
Those odds are pretty good but they dont say if the one per million is a person who was in the doctors rooms with no emergency backup just a few heartbeats away.
Graham, thanks for the link! I’ll have a thorough look later, and I suspect it will end up on my small pile of key RLS paper. Link wasn’t posted before, as far as I know.
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Who knew there is an MRI that will show RLS sufferers have no iron in a the Substantia Nigra part of the brain.
Iron & levothyroxine.
