Hello again
Well yesterday I saw my consultant at Papworth and when I asked about my ferritin levels he said they were ok. He didn’t , despite me asking, actually tell me what they were but he did say that 50 was great for RLS in Britain & 75 in USA. When I said that I thought I should be above 100 he repeated the two measurements again. Is he using a different scale or has he just got it so wrong.?
Hi. I'm in Norway and my neurologist says mine should be 75 or above.
hello jess3648
please research magnesium deficiency and symptoms of magnesium deficiency also benefits of vitamin d3 and k2mk7. magnesium l threonate .
what’s that have to do with this thread?
He is obviously not aware of the latest report on iron and RLS from the IRLSSG (Intern. RLS Study Group). Earlier work didn’t see negative relation of iron and RLS for ferritin values over 75, but the recent report that people with ferritin up to 150+ (don’t remember the exact value) might benefit from iron. Infusions in that recent study - a review of studies, actually.
It’s very worrying that he is not keeping up-to-date. Thank you for replying LotteM.
Most UK neurologists stick to the mantra that if levels are around 75 everything is fine.
Johns Hopkins University in the USA is doing studies on the link between low ferritin & RLS.
I suspect within the next 5 years, Iron infusion will be a standard treatment for a great majority of RLS patients. It won’t help the others whose RLS is genetic or linked to spinal/ brain damage or surgery.
There is still so much to learn and hopefully funding for research will be more readily available. 🤞
The Mayo Clinic says that 'normal' levels of ferritin are 20 to 200 for women, and 20 to 500 for men.
Presumably men are allowed more because they do not menstruate. So you can assume that normal for women is for women of child-bearing age. Go for men's levels.
'Normal' is NOT optimal, not if you have RLS/WED.
Normal levels are really a thumb-suck of lots of patients added together then divided by the number - so it is sort of meaningless. And 20 is very, very far from 500.
So why not ask for an optimal level, which would be in the mid-range, somewhere between 100 and 250.
Those of us who have had IV infusions have had levels going up to 350 to 450 or more. And a number of people on this site have said they felt at their best at around 350.
This quote is from Johns Hopkins -
'A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months. '
hopkinsmedicine.org/neurolo...
So they treat at 75. From Professor Christopher Earley, who is one of the world's great experts.
Thank you Parminter. He agreed to give me a blood test & this time I will ask for a printout of my results so that I can see for myself.
You are entitled to "demand" politely a copy of YOUR blood results. Even in the UK that can't be against the rules or something is it?
The experts at Johns Hopkins and Doctor Buchfuhrer in California suggest that you should go to about 350 provided that there is no other medical reason not to go that high. The only practical way to get that high is to have an iron infusion. So you need the cooperation of your GP or a specialist and you might have to pay for an iron infusion.
It seems difficult to know if an iron infusion will help without doing it and seeing how you go. Be warned that it sometimes requires two or more infusions to make it work ermanently. Doctor Buchfuhrer says an iron infusion should be the first line of attack against RLS.
There is a technique that might make it possible to measure the amount of iron in the brain. (without a painful and risky spinal tap or a rather useless postmortem examination) using a trans-craneal ultrasound. The theory is that a person with RLS might have the problem that even high blood ferritin level does not get enough iron into the brain. I haven't found anyone in Australia who can do this yet but a doctor in Spain can apparently do it and then he uses a special infusion to raise the brain iron level if it's too low. If you want to go to Spain we will all be watching with great interest. If you find anyone else who can do the same measurement and treatment please let us all know.
Ha ha - don’t think I’ll go to Spain. That is very interesting though. I did ask for the results which , quite correctly I’m entitled to, but he said he didn’t have them & that is why he is doing another test. Thank you for replying.
That's a bit strange. In Australia I would expect the doctor to phone the pathology lab and get a reprint of the results before I left his consultation. That's what good path labs do because if there is a problem an immediate response might be essential. You can't tell a patient to come back tomorrow. Some patients have to work to pay their doctors bills. Makes me wonder if he really had the result. But I am a suspicious cynic.
I'm under Papworth too. I have taken papers to my doctor there, with evidence about iron level studies but was told 'you can find papers about anything'. But to be fair, the doctors are constrained by sleep clinic rules about iron levels. And the cut off for iron infusion is 50 I understand.
I have been told that the problem is that iron infusion is recommended by "the authorities" for anemia which is defined in some way that I haven't been able to understand yet, that seems to equate to a ferritin level below 20 or something similar (lots of things I don't know here) BUT an iron infusion is just not even considered for RLS by whoever controls these things.
The Doctor gets an iron studt and ferritin is found to be 50 then the patient is not anemic so the patient cannot be ordered an iron infusion within the system. Hence the GP or specialist can only offer an "off-label" iron infusion. This means that the patient is taking responsibility for using a drug for something for which it has not been approved. Unfortunately this means paying full price for the drug and the infusion. In Australia the whole lot cost me about AUD500 and I have heard of a RLS patient who paid GBP600 to a Harley st specialist. So it should be cheaper in Manchester or Glasgow or somewhere in the UK
Sorry to be a bit vague but so is my understanding.
Incidentally I had the iron infusion at end of November and I am still waiting for a huge relief. I understand that it might take until the end of February so every day I wake with hope and fall asleep with uncertainty. But don't worry about whether it helped me or not. Iron infusions DO help many patients according to those who do them frequently. So it might help you!!!!
Thanks, Graham. They do disguish between anaemia and RLS at Papworth - hence the 50 cut off for RLS. But from all I read - and backed up here - we want to get it way above 50. I haven't investigated the private health route.
He also told me that there were too many sites dealing with RLS more or less implying that I ignore sites like this one
I appreciate the problem the internet makes for doctors. There really are a lot of ratbag sites on every ailment and the poor old GP can't survey everything on every site to decide what to believe. That's why we have specialists. Neurologists who hang up their shingle proclaiming their right to charge $350 for a 10 minute visit have a duty to investigate the articles in their field of expertise. They don't have to read everything but they should be spending some of their working day reading reports from respected institutions on their subject of expertise. It all gets down to money to fund research and the number of experts we can afford. I would have thought that the IRLSRG was good reading for anyone whose income is dependent on helping RLS patients. Its obvious that many are giving advice they learnt in the the 2000's forgetting that the last 20 years of research might have been successful.
There's something wrong with the system of spreading information. Perhaps the internet is so good that it spreads rubbish faster than the truth. Perhaps the experts who make decisions about who gets an iron infusion are too old and lazy to keep up with the latest treatments. Maybe the whole system is still designed for the days when news was spread through a printed copy of the "Lancet"
The case of the Spanish doctor is an example where someone in Europe has a technique that might be a real "cure" for many people but it doesn't seem to have been heard of by the English and Americans. Or at least it hasn't reached the people who we can reach out to for advice.
I think those who have found this site are very lucky because we have experts who care about us. Thanks Team
Couldn’t agree more. This site has been a life saver for me. I thought I was alone with this problem as I had never met anyone with RLS as severe as mine. All my friends treated it as a joke.
that's what my neuro dr said too lol about these sort of sites and should keep off them i told him to join and read what real RLS sufferers say rather than just taking my word for it i suffer 24/7 along with BFS too he won't have that either just saying it's twitches gggrr
My Ferritin level was 49 - raging RLS. Docs said normal! One month with Ferrous Bisglycinate, severe RLS went away. I originally took blackstrap molasses, after reading a home cure for RLS and it cut into the RLS. Then I read the Johns Hopkins website. hopkinsmedicine.org/neurolo...
That's great news. Encouraging to all of us!!
Thank you all very much
You need to know you’re ferritin level. Ask outright and also for a copy of the report do you can study it and research what yours should be . It’s your’re info after all so you have a right to know it.
I will insist on having it - thank you
Mine was 2 got it up to 22 my neuro said that's fine too (in the UK) i explained it should be higher but he won't have it either said i was talking rubbish even when i took him copies i've printed off the net he just turned round and said im not interested in what the American doctors say ggrr wouldn't even read it .
That’s the same sort of brush off that I got
I would be worried about increasing ferritin levels as too much iron is linked to heart disease. I have had RLS (fairly mildly) all my life, and never suffered from anaemia.
I was given iron when I was pregnant but never since. My RLS has got much worse now I am older. Thank you for replying.
Iron supplements and ferritin levels
Serum Ferritin levels
Ferritin level information
Ferritin levels
