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Restless Legs Syndrome
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Iron in the Brain not in the Blood

Hi, first of all sorry for all my mistakes but english is my second language and theres a huge medical and technical terms so treat me gently...🤗

I’m suffered rls since my 13. I’m 48 now. Just 6 months ago i found a doctor who really are an expert on rls. But I don’t find it in my country. I live in Chile and the doctor works in Spain. So he treat me through Skype.

Believe me. He knows and inverigate about rls more than any doctor in the US or UK.

His name is Diego García-Borreguero. Google it and you will found a lot of papers and studies results. Unfortunately for you the most are in Spanish.

Ok, go to my case. I have very very hi iron and ferritin levels on my blood. About 650. So i need lower levels because it’s dangerous. But i made all the exams and I don’t have any issue in my hart and liver.

But with this hi levels of iron i still have a severe rls symptoms.

So, he made me an exam with doctors here in Chile that can measure the iron levels in the Brain. And the result was that i have almost nothing of iron in my brain.

And this is the point that almost every doctor that treat rls don’t know. Is not the iron in the blood, is the capacity of the brain to absorb the iron in the blood. They even don’t know that exist an exam that measure that.

Si now I’m reducing my ferritine levels to lower than normal to get an special iron infusion with some componet that help to be absorbed by the Brain and check about 3 moths later if the iron levels in the Brain are higher.

So that’s it. Ask your doctor or find a good one who really now about rls and the new discovered treatments. And seriously, it could be everywhere in the world.

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I agree with you.

I had high ferritin- 1400, but still restless legs, but Dr Buchfuhrer said it didnt get through to the brain, as you have pointed out. However, he has not suggested any other course of action.

I would be interested to know the name of your brain iron test, and what iron infusion you will get to make the iron available to the brain.

Thank you for your post. It is a very important bit of information.

Gracias.

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Yes, it definitely bears repetition that it is the iron in the brain that is important. I wonder if that is the reason some people (looking at you, Madlegs) have a high serum ferritin and yet suffer from rls and also that only 50% of people benefit from raising iron levels. Maybe the other 50% has a more effective blood brain barrier.

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Hi, i did not take the iron infusion yet. With my levels of ferritin or iron, I couldn’t put more iron in my body. So now I’m trying to lower the iron levels, and then i could get the iron infusions.

About the iron test I don’t know how to say it in english so I’ll do my best. Maybe i translate it literal. It calls ultrasound transcraneal. Its an ultrasound like the one it’s make to see the babys but in a especific place in the head and is trough the skull and the can see and measure the iron levels in the brain with some especific calculations. I hope i explained my self.

Here is an interview made to my neurologist in the tv news. She work in Chile with the doctors in Spain. The only thing is that all is in spanish so i don’t know if you will Understand. In the page click the video. From the minute 3:40 they talk exactly about the test.

institutoeuropeodelsueno.cl...

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That’s a super explanation. Very accessible. I previously thought that iron in the brain could usually only be measured post mortem. Thank you.

I think Dr. Garcia-Borreguero was involved in the ground breaking research which identified dipyridamole as a possible avenue of treatment. He is a fantastic and out-of-the-box thinker in the rls field. You are certainly fortunate to be treated by him. I hope you manage to reduce your serum ferritin so that you can get the iv iron. It would be fascinating to know how you get on.

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Thankyou for posting. Could you explain how the brain iron test is done please? .The closest I have heard of was a fluid sample from the spinal cord via lumbar puncture .

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Hi, i paste the answer i made before. I hope answer your questions. If it not, write to me.

Hi, i did not take the iron infusion yet. With my levels of ferritin or iron, I couldn’t put more iron in my body. So now I’m trying to lower the iron levels, and then i could get the iron infusions.

About the iron test I don’t know how to say it in english so I’ll do my best. Maybe i translate it literal. It calls ultrasound transcraneal. Its an ultrasound like the one it’s make to see the babys but in a especific place in the head and is trough the skull and the can see and measure the iron levels in the brain with some especific calculations. I hope i explained my self.

Here is an interview made to my neurologist in the tv news. She work in Chile with the doctors in Spain. The only thing is that all is in spanish so i don’t know if you will Understand. In the page click the video. From the minute 3:40 they talk exactly about the test.

institutoeuropeodelsueno.cl...

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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I would also be very interested to know more about the test you had done.

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Hi, read the answer i made in the first post. I think i put the information but if you have more questions please make it to me.

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Oh, I see it now. Thanks!😀

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I made it just 5 minutes ago. 🤣🤣

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Thankyou.

Whenever you get the infusion, we would be grateful for the name of it.

Hoping everything works out for you.

Adios.

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Hi Thank you. This is really significant news. I had an iron infusion in end of November and it raised my ferritin to 343 from about 100. I have been allowing 12 weeks to judge if it helped or not. So far there has been an improvement but its not complete. I had about 10 nights in a row with no RLS at all and I was starting to celebrate but then I had a comparatively bad night so I'm not sure where it's at right now. I think I will price an "iron in brain" test. First I have to find out how to analyze the result. If they tell me 47 or 1234 I wont know if that is good or bad. Perhaps the experts already know that much. All I have to do is find the expert. Holiday in Spain? Probably some smart radiologist can do a transcraneal ultrasound in Australia. Maybe I have to go to a children's hospital?

Cheers

Graham

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Graham, are you still taking your nightly oral iron?

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No I felt that having raised the ferritin to my target I should see what happens. Doctor Buchfuhrer says that if it drops down again there is usually a cause such as an internal blood leak that needs to be found and rectified. I would be surprised if this is happening in my case as I have recently had a test for bowel cancer. I think that is just looking for any stray blood but it might not be relevant. Next ferritin test coming up in February.

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Hi, Graham, from what I've read, many of us with RLS experience a drop in ferritin level after IV infusions, and they often cannot find a specific cause, such as internal bleeding. That has been my own experience. It seems that repeated IV infusions are needed for many of us. I'm now 6 weeks out from my 2nd infusion, and it's not yet clear if that has helped. (The first did help significantly, and I've needed about 30% less meds since then. I'll start testing lower doses soon, and see if this helped more.)

Unfortunately, the research on safety and efficacy of repeat infusions is very limited to date. (I did see one paper that reported positive results on a small number of subjects: several of them had their ferritin levels stabilized after several infusions. But that was not considered solid evidence, just suggestive.)

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Thanks that gives us hope. I will try another infusion if my ferritin level fades away. Its good to hear that your first infusion showed some promise. Good luck with the second.

Graham

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Please let us know if you manage to track such a test down. X

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Certainly will!

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Hi Graham I am also in Australia do if you hear of any would be very interested.

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The doctor in Spain you mention is an absolutely top class researcher. How wonderful to get advice from that source!

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Please look at website science direct magnesium and iron

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Hey thank you. Of course i will do.

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Please research magnesium l threonate it's the only magnesium that crosses the blood brain barrier

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Thanks so much for your post.I am eager to know how you get on when you do have the infusion.x

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Hi, I write another info with an answer to my self for all of you at the end of the post. I hope it helps you or gives you some tips.

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Hi all, I wrote this for all of you that participate in this post because a need more than half an hour to write just 5 lines LOL. I really hope this give you more information to you and trying to answer all your questions or give you a way to look at for yourself. I know all of us are constantly searching on the internet about rls but i think because it’s came from other language and from other doctor in spanish speak, maybe you didn’t see until now. For example RLS in spanish is SPI “Sindrome de Piernas Inquietas” but a lot of information about Garcia-Borreguero work and investigation is in english.

So do this: Google “diego garcía-borreguero rls mri iron brain” and you will get a lot of information about the iron brain test an a lot of other very good and latest information. You will get english and spanish results, but if you choose only english results in google preferences you will get only English results. If you could read spanish you could find a lot more information.

Now if you google “diego garcía-borreguero rls” you could find a lot of more information about rls and the treatment and studies. And not only about this especific doctor because you could find a lot of othesr papers and info of doctors who made researchs with Garcia-Borreguero. If you want a lot more information about this and you could read spanish remeber to change RLS to SPI.

I leave for you a few links of a very quick search in google that can show you a lot and very good information that you cand find. And of course you search whatever you whant about Garcia-Borreguero and rls or spi.

This one is a paper with very complete and interesting info. And if you only want to read about the iron test use search tool in document for “mri”

rls.org/file/_2016-redesign...

Another one.

ses.org.es/docs/RLSWED-Scie...

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Thank you for all your information! You will get an iron IV infusion soon, right? What do your doctors add to the iron infusion to get the iron into the brain better? Thanks.

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Hi - I read with interest your post. How do they measure iron in the brain? Hope you get some relief.

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Hi again - reading your posts and replies was very interesting - does anyone on here know if there are any UK doctors who specialise and have written papers?? I am going to discuss supplements and my current ferritin level of 59 with my doctor on 1st Feb. Not really sure how to approach this as I don`t want to irritate the Doctor with information he may not have seen. He did put this level down as `normal`. Any help out there please?

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Print and bring this paper? sciencedirect.com/science/a...

Maybe also check whether rls-uk.prg already refers to this report/paper on their website.

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Thanks so much.

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Hi, Franklin, you'll see from the paper that Lotte gave you the link for in her reply to you that 59 is too low. Even thought that's in the "normal" range for most people, those of us with RLS need to get our ferritin up to at least 100. And some need to get it even higher, perhaps 300.

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Hi Chilandres - I thought that too - but it is getting the information to professionals who are not familiar with the research to understand isn`t it. The GP nurse I saw was looking at NICE web page - a UK based information place for them. Thank you for your reply.

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