Hallo Everyone. I have had PLMD for decades, but in the last 4 months it has become very disruptive and challenging. I am 73 yars old. I have had two iron tests; the first was over a year ago and indicated low ferritin and transferrin saturation levels, but was still called " Normal", and the second (after starting iron supplements) a month ago, which was improved, but still called "normal". Symptoms have been reduced, but are still very disruptive. The GP wants me to stay on the tablets, for up to a year even, but I want to get an Iron Infusion, rather than wait for up to a year, for an outcome that is not certain. I have found that getting an iron infusion is not easy; the NHS will not do it (because it is not for anemia etc), and private clinics will not do it when they see the "Normal" decision on my iron reports. My Transferin saturation was 47 percent, and Serum Ferritin was 72 ugl. I am sure that those of you on this forum that have tried this will know that in fact "normal" ferritin levels should be 100-340ugl. I'd like to know what people think about this and if it is possible to get an infusion. All comments welcome!
Periodic limb movement disorder - Restless Legs Syn...
Periodic limb movement disorder
Yes, serum ferritin of 72 is in the general normal range but below optimum for RLS/PLMD. But was your transferrin saturation (TSAT) really 47% or was this a typo? A TSAT of 50% can indicate iron overload, and 45% is often regarded as the safe upper limit for iron supplementation.
Hallo Chris Columbus. Many thanks for your reply. No one has given me an in-depth interpretation of the results, and I was unaware of the "normal" range for the saturation figure. I am aware, from my own reading, that the serum ferritin should be higher. I do have good communication with my GP, when I can get to speak to her. Unfortunately she does not have any other answers, and would prefer that I carry on taking iron tabs for up to a year (!!) which from my point of view is rather depressing since I do not get to sleep on any night without symptoms, amd most nights are interrupted. I will chat with thr GP about this. Do you have any ideas or insights into causes?
Perhaps the TSAT was raised by not having been advised on preparing for the test, but in that case the ferritin reading may also have been inflated...
Hopefully your doctor will allow another test which might give a clearer indication. But as you've noted, it's not easy to get an infusion on the NHS unless one's diagnosed as anaemic.
I note that someone, probably Manerva, queried a few years ago in response to your first post whether you were taking any triggering medications:
Some of us have also noticed that we have dietary triggers - such as one or more of sugar, sweeteners, caffeine, alcohol, MSG, spices etc, particularly if taken later in the day.
A magnesium - and/or various vitamin, esp B12 - deficiency can also exacerbate symptoms.
The reason they won't do it is more likely because your transferrin saturation is 47% and should be between 20 - 45% . Usually iron tablets aren't prescribed if it is above 45%.
Did you follow the normal instructions when you got your full panel iron tests? Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.
If you didn't follow this, it might have artificially raised your TSAT so I would suggest you have the test again. If your TSAT is then below 45% I can give you some advice on getting an iron infusion.
Hallo SueJohnson. Thanks for your reply. I was thinking about this in the last few days, and I think that it may be the case that the results were affected. I originally went to the GP, when the symptoms were really difficult to cope with. She pulled up an Iron test I'd had as part of a full blood test that I'd had for different reasons in early 2024. The figures were poor; on that basis she put me on iron tabs, every other day. I took them for almost 3 months, and then we agreed to another test to check progress, which was the test that I wrote about. I was not given any insight into how to prepare for the test, I just turned up for it. Bonkers really, since I know from my own research on the internet, that you need to fast, and not take iron tabs for a day before etc. I am going to take this up with my GP. Thanks for the insights!
You don't mention any medications so you might try that route if you aren't taking anything. I've found 300 mg of pregabalin + 600 mg of gabapentin to be fairly effective. My PLM is highly circadian with the worst symptoms from 9:00 pm - say 2:00 am so I take it all at the same time about 2 hours before sleep time. I do have some side effects but it is nothing like having no sleep. Good luck. Also, iron infusions don't help everyone. After trying to raise my ferritin level with the oral route (raised from 12 to about 100 over 3 years) I finally had an iron infusion which raised my ferritin to >300. Sadly it had no impact on my PLM.
Hallo Tanker1. Many Thanks for your reply. I did use Pregabalin for a while a year or two ago. A small dose; 75mg daily. It helped. But then I note that my PLMD has always been rather unpredictable and goes in phases. I used to endure it and do my best. But then late last year it became to be very difficult and damaging. I have not had a good nights sleep since then; its always been affected. Neither can I find any rhyme or reason about it; I have tried most of the suggestions that you get on line, but again there is no discernible improvement. I do think that taking Iron tabs has improved the situation, and I am going to continue trying to get an infusion. I am resisting going back to medication, because over time the pregabalin seemed to make me "flat", or rather depressed. My Dad had Parkinsons disease, and I aware of the other drugs that are used, and that in the longer run they all lose their effect, and side effects develop. I suppose that my depression is arising from the fact that this is an uncureable ailment, and I cannot see any evidence that the medical establishment is any closer to finding the cause or its cure. Do yo have any ideas or insights into what is the cause?
Sorry I have no insight into the cause except that its a sibling (more likely a twin) of RLS. The cause is something is not quite right in our brain chemistry and this is not well understood. Mine also comes and goes for no apparent reason. Mine seems unaffected by caffeine or alcohol which is unusual but not unheard of. My diet is fairly steady as are my blood test results including ferritin which is about 280. Exercise helps and I find more is better but this is not consistent. Perhaps this is because I get more tired and can sleep through the twitches. Pregbalin and gabapentin do seem to effect my memory and mood (your description is close) but for me its way better than getting no sleep. I should note that any side effects I've had, diminished with continued use. As for increasing ferritin I think I read that it helps 60% of those with RLS and I would guess that this is similar for PLM. If iron tablets are helping maybe you are in the lucky 60%. Its to bad you can't get an iron infusion because thats the best and fastest way to get the level up. I took iron tablets for 3 years and could barley get it above 100. I've considered talking to the sleep doc about low dose opioids as an alternative to pregabalin but opioids increase insomnia which is another problem I have and I don't want to add to that issue. Sleep aids can help sleep through the twitching but that comes with different issues.
Since pregabalin worked you might want to try gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. You probably won't need that much. the equivalent dose to 75 mg pregabalin is 450 mg.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason (not sure about pregabalin).
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Hi, Sorry to hear you are having such bad time. I have plmd and have been on oral iron for a long time. I did take pramipexole for it but like most I augmented in it and had the horror of coming off it! Dreadful experience but had a lot of support from the forum. I'm now on a low dose of Oxycodone granted I do still have breakthrough plmd but I am sleeping much better and able to function.I hope you get the help you need! 😊
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