I am wondering if any of you have heard or tried this?
I came across this video on transcranial sonography (Dr. Diego Garcia-Borreguero at the Madrid Sleep Research Institute), as a way to check if there is iron deficiency in the brain, especially in the substantia nigra. This is a method supposedly cheaper and more accessible than an MRI. youtu.be/PMv-IVXihyw?si=6Lv...
I am in Toronto, Canada and cannot find any clinic or hospital offering this service. I am a non-anemic RLS sufferer, so no doctors I spoke to is willing to give me an iron infusion (it is apparently common to have in the blood, but an iron deficiency in the brain) and I have tried oral iron supplementation for more than a year without success. There is a protein in the stomach that blocks absorption of iron once normal serum levels are reached. This is a catch 22; How do you increase brain iron if oral supplementation is not effective and you cannot get an infusion without proof that there is brain iron deficiency?
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Franciscophilus
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Here is a discussion of the conundrum of high serum iron levels yet low brain iron and consequences including RLS. This is complex biochemistry without easy answers. The leading "gate keeper" for the brain is the blood-brain-barrier. There are plenty of afflictions from excess iron in the brain including some dementia.
As a start I would love to know the % occurrence of RLS in high serum ferritin patients vs low serum ferritin.
Hello Sue, I had been taking 30 mg of liposomal iron daily with vitamin c but I did not see much help in that. Also my most recent ferritin level was 153 ug/L. Perhaps I could take iron every other day instead.
I am currently doing rTMS therapy for RLS. I have done 10 sessions and have another 5 to go. So far, no noticeable benefits but I am aware it can take 20 to 30 sessions to show benefits. I will share my experience of TMS when I am done.
30 mg won't help you much. Liposomal iron comes in a 65 mg version which is what you should take. Also take Lactobacillus plantarum 299v as it helps its absorption. And you can also take apo-lactoferrin which also helps its absorption.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
It is liposomal (coated with fat for higher absorption) and sold in 30 mg capsules. They recommend not to take more than one per day so I wonder if it is safe to take more than that (I.e. 65 mg)? Also, there are so many types of iron out there that it’s hard to know which to take and how much, how often etc…
Thank you! By the way, are you a nurse or something? You seem quite knowledgeable!
Here it is in black and white. I hope the regulars on here read it and can explain to me how an infusion will prompt greater production of H-Ferritin in the brain? Another interesting fact about the RLS brain - it’s drowning in serum iron…by day. It’s complete and utter nonsense that the RLS brain has problems picking up iron from the bloodstream. By day, our brains have, on average, 25% more serum iron than controls.
“Results: There were no histopathologic abnormalities unique to the RLS brains. Tyrosine hydroxylase staining in the major dopaminergic regions appeared normal in the RLS brains. Iron staining and H-ferritin staining was markedly decreased in the RLS substantia nigra. Although H-ferritin was minimally detected in the RLS brain, L-ferritin staining was strong. However, the cells staining for L-ferritin in RLS brains were morphologically distinct from those in the control brains. Transferrin receptor staining on neuromelanin-containing cells was decreased in the RLS brains compared to normal, whereas transferrin staining in these cells was increased.”
As you can see on the package it is only 30 mg elemental iron and you need 65 mg. You can take even more than that. For people who have really low ferritin I recommend much more. Ignore their saying not to take more than one per day. It's not going to hurt you. If they don't have a 65 mg version in Canada take 2 of the 30 mg versions.
On Clamire's suggestion if it works to take it every night then it will stop your RLS completely for that night only. Some have found this works for them but most have not.
No I am not a nurse. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
Francis, you have to take the iron about two hours before bed on an empty stomach, otherwise you are probably wasting your time. Body ferritin has little to nothing to do with RLS. It’s all about that free floating serum iron that is plentiful by day, but plummets at night, in all humans. Only non-RLS humans can store some of that iron in their brains for a rainy day, or should I say night. We with RLS produce very little of the iron storage protein (called H Ferritin) in our brains, but we produce normal amounts in our bodies.
So we rely VERY heavily on that serum iron, because we’re in short supply on BRAIN FERRITIN, not body ferritin. Thus, when serum iron drops at night (with a nadir of midnight) we suffer. Many, many, many people on here get relief from their RLS within an hour or two of taking the iron…for one night….so must be repeated every night. I prefer ferrous bisglycinate - 56mg.
Taking iron in the morning will do nothing for your night time RLS. Raising your ferritin above your 153 will do nothing for your RLS. I don’t care if you get an infusion and raise it to 1000, you’re still gonna have RLS. That infusion may even make your RLS worse, albeit temporarily.
If you’re taking an SSRI, calcium channel blocker, Metformin, melatonin, testosterone replacement, PPI or about a dozen other drugs, you may not get 100% relief from the iron at night trick. Or, if you have a spinal injury/compression, it may not work as well. Or MS or chronic kidney disease. Anyways, good luck. Keep me posted.
Do you know the exact protocol for your rTMS? Eg. High frequency/low frequency, area of brain targeted etc. I'm asking because I did 27 sessions of rTMS and unfortunately it made no difference to my RLS/PLMD and the side effects of the therapy (intense fatigue) were debilitating.
There are numerous research papers on the benefits of iron infusions for RLS. But unless you can persuade your doctors to read the research and do the iron infusions- you are stuck.
The above link is one of the latest research articles.
I wrote direct to the haematology department at my local hospital and sent research papers. They were intellectually curious and agreed to the infusion. Sadly it didn't work for me.
Here are more research papers you could use to help persuade your local hospital to give you an infusion.
vikkkk had transcranial sonography last year - I presume in Lithuania - and had an infusion as a result.
Have you had a C$50 virtual consultation with a clinic like e.g. Atheria, to establish whether they'd provide an infusion? They'd review recent (within 3 months) blood work, including ferritin levels, and say in their FAQs "Low levels of Ferritin (below 100) can indicate low iron stores" which sounds hopeful. What are your most recent ferritin level and transferrin saturation percentage?
Cost appears to be C$350 for the infusion and C$530 (without prescription coverage) for the monoferric medication.
Yes, thank you. I had a look at that clinic and it is an option. I just need to find a way to determine if I have brain iron deficiency or not before doing and infusion. Just to be on the safe side.
I don't quite understand why you need to know whether you have brain iron deficiency. You may have it, and an infusion may still not make any difference. Why not just get an iron infusion and see if it does improve your RLS. I have had 5 infusions and they don't make much of a difference (I have low ferritin but not considered anaemia)Given your ferritin is already 137, I'd be inclined to get a half or quarter dose of the iron to be infused.
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