Within the above transcript is the following direct quote from Dr. B. His word is gospel and I hope you all feel the same:
"What the guys at Hopkins did, they gave iron intravenously usually about 2 or 3 or 4 series of infusions of this iron, and they got the levels around 200 we'll lose and behold about 80+% of the patients all of the sudden had their RLS symptoms completely vanish. They could drop all their medication and these were severe patients for the most part. They dropped all their medications; they felt great. Tgey said 'my RLS is cured.' Anyway, very interestingly,. 6 months to maybe 2 years later, these patients started calling back saying, 'my RLS is coming back, what's going on?' So they brought them back to Hopkins and rechecked their serum ferritin a and their CSF ferritin, the ferritins around their brain and low and behold these guys were again low on ferritin. Now typically when we get someone with iron deficiency, anemia or not, and we tank them up full of iron, and typically this will be someone who has like a bleeding ulcer or women with heavy menstrual period or God knows what, who get low on iron, once we tank them up unless they bleed again, they're good for life. So this was very perplexing. And now what we believe is that the REAL defect in restless leg syndrome May in fact be a leeching out of iron faster than normal. We all lose a little iron every day but we get it back in our diet, very, very easily. We feel that restless legs patients are losing it much faster, so the normal diet doesn't come close to replacing it. And at least the guys at Hopkins postulate that the genetic defect may be something to do with iron metabolism and that RLS is only secondary to that. "
Oolong, have you approached your Dr about this, (what part of the world are you in again)?
I wonder how easy it would be to get a Dr to go along with it?
Thanks for sharing.
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Nah, the bisglycinate always works for me. But maybe u should think about it. Because of your condition u might not always be absorbing much of the bisglycinate from your GI tract. The infusions go right into the bloodstream. The older infusion formulas of iron (iron sucrose) didn't have as much success as newer formulas. That's the great thing about oral iron is that your GI tract will break it down to its lowest common denominator (if it can) and whatever does get absorbed into the bloodstream should be able to cross the BBB. But I say give our tired old stomachs a break and use ferrous bisglycinate which is already broken down into amino acids and more readily enters the bloodstream and from there our brains. But if you got a lot of hepcidin floating around your body on any given day due to your condition then the oral iron won't be of much help to you. 😟
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Right am going to have to go and research what your post said lot of info there thanks.
The only problem I would have about the jab is having to go to the Drs. I spent so much time there in such a bad state I think I have PTSD from it !
I am VERY happy that the iron works for you, any time anyone who has RLS can find relief,, it is a positive thing. Everyone has to figure out by trial and error what will work for them.
I am having a problem with taking iron as it gives me the runs but have been in touch with the doc today and asked for the infusions. It wasn't my regular gp so he has arranged for blood test tomorrow to check my levels of iron. I have bought a nutri bullet machine to try and get some drinks from spinach, cabbage, leeks and other veggies with iron in them. If that works or I get the infusions I will let you know. I asked my chemist for bisglycinate iron but he said he hadn't heard of that one but to ask my doc about changing from the ferrous sulphate. He has put me on ferrous fumarate to try until he gets the blood tests results. Thanks to everyone who replied and I wish everyone luck on this site. . At least it gives us some hope of finding something to take away this horrible problem. jonjo.
Hi Jonjo: Are you vegan? Foods contain two types of iron, heme and nonheme. When you want to boost ferritin quickly, the best choice is heme iron found in meat, poultry and fish, ideally red meat, because your body absorbs heme iron two to three times more efficiently than nonheme iron found in veg tables. If you are vegan I found the Vega One All in one shakes have 35% Iron daily intake. I make two shakes a day, but also eat red meat at dinner each night and day time I eat Tuna, Chicken ect.
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Ok Raffs, how about an in-between step. There is an over the counter iron patch called PatchMD Iron Plus. It's ferrous bisglycinate plus vitamins A & C. If you are at all interested I will order first and try it. There is a pharmaceutical iron patch that is undergoing human trials and I would prefer that but it could easily be another year before it is available. I might just order that patch right now. Nothing ventured...
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Done! I ordered them. I just realized that I've never used a patch before. If I survive I will give u my opinion of them. Oh man I'm allergic to everything including life itself. 😩
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LOL I already have one patch on and it can be a bit of a pain compared to the tablet.
I take it the Vit C is to add absorption? Why the Vit A?
So you have allergies too! I found out when I was a kid I was allergic to punches - and would breaak out in blacky/bluey sort of 'rash' where I was hit! Sometimes I would even bleed, say if I got a punch in the mouth there would be blood!!! Amaznig how my body reacts to stimulli! I recon I have that allergy to life - every bloody thing seems to disagree with me, (particularly the wife and kdis )
Hello, everyone. My ferritin level was very low at like a 7. My hemoglobin is fine? My doctor also gae me iron infusions, and ripinirole for the RLS. I got 2 infusions a week apart. When they tested my blood a few weeks later I was only at like a 17. They now have me on oral iron pills and want to check again in 3 months. I also had an endoscopy and colonoscopy to rule out any bleeding. They found nothing. So the next step was to do a small bowel capsue study to see if there might be something going on in my small intestine?? Has anyone else done this? It is the one where you swallow a small capsule that is actually a camera? I am wondering if this is necessary???? I really dont want to do it.
Melissa I think they have the ability to place that capsule camera into your stomach via endoscope? I would love to do the camera capsule just because it is so amazing. I have a friend with a condition call gastric antral vascular eclasia or GAVE for short. She has pinpoint bleeding in her stomach and her only symptom is low iron although before it was discovered she was quite anemic. I believe they can readily see that on endoscope so unlikely you have that. I also had an allergist who was anemic and had bleeding (they found in stool) but from an unknown source in body. Like you he had every test done including camera with no result. Finally he went to the University of Chicago medical center where there was a gastroenterologist who had seen this type of thing before. Not to be gross but she literally pulled the large intestine out via rectum and turned it inside out almost like a pair of nylons and found a cluster of small blood vessels that were leaking. It was an outpatient procedure and when he awoke he asked the doctor when she was going to begin. That was the answer. He was fine after that.
My mom ended up on the hospital w a hemoglobin of 4.9 - every test done - can't figure it out. The GI doc suggested something similar to what your allergist had done, but now we're only dealing w a hemotologist - via Cedar Sinai. May chance you remember the GI's name?
Thank you for responding. I am 44. I just wonder if it is necessary to find the cause of my low ferritin level or if it is okay to just treat with iron? I was thinking if my upper and lower GI were good, what are the chances of there being something in my small intestine?
Ok, at the very least your stool should be checked for occult blood and the check should come from several samples. You're kind of young for those leaky blood vessels in the colon (large and small intestine) which I do not believe can be seen via a colonoscopy or even that camera. My Allergist was severely anemic from this condition and needed transfusions. This is not you apparently. Do you have very heavy periods? Do you have an auto-immune disease or other chronic illness? You can do a wait and see but you must be vigilant in checking your red blood count. There's a certain peace of mind that comes with an accurate diagnosis. I for one would like to know what is contributing to your low iron stores? But if you feel good and want to give supplementing with iron for a while a shot that is up to you.
Unfortunately it's the blind leading the blind here Melissa. At least I am blind when it comes to iron deficiency of unknown origin. Maybe someone else on here has experience with it. Ultimately it's all guess work. Best to find a GREAT GI doc and go to town with questions for him or her.
HI, I have had that done, and it sounds way more scary than it really is. I have gastroparesis, so do not digest food well, half the time it does not stay down. S, have had all the "tummy tests" and colonoscopies. Will not get into detail about things they found, but will say the little camera was the easiest thing to do. They did find infected ulcers, and more. So, not sure what else you have tried besides the infusions and Ropinerole, Melissa. The test they want to run is to see if they can see if there is anywhere you are losing blood, since the infusions did not get your ferritin up in any significant way. How long have you had RLS?
Hello, thanks for replying. I guess I'm leaning towards having the test. I have had RLS for years. Never really mentioned it to my doctor until recently. This is the first time I've had low iron.
I remember reading a long time ago, in nutritionist Adelle Davis, how some people have higher requirements for various nutrients, how it seemed to be a genetic thing among populations and some families. And, did you know that being lactose intolerant is genetic? And also not being able to tolerate caffeine is genetic. Or having 6 fingers is genetic. A lot of this kind of info is coming out with all of the work done with genetics. Of course, there are recognized genetic diseases as well, like Huntington's Disease. So, if RLS for many people is from a genetic glitch with iron usage, it is not so mysterious.
I read a really interesting book last year, "The Human Diaspora - The History of Diversity and Evolution," by Luigi Luca Cavalli-Sforza and his son Francesco. There is even a chapter on genetic illnesses, and on beneficial and neutral mutations, besides non-beneficial mutations. This issue with RLS and problems with iron, tho not mentioned in the book specifically, fits in well with what the author has explained.
Very interesting! I'm twixt and torn between genetics and gut microbiome which is inherited to a certain extent as well. I have high hopes for fecal transplants. Probably too high. I have convinced myself that someday all diseases will be treated/cured with this method. Definitely not dinner conversation. Nonetheless I am thrilled that you continue to be well and continue to post on here. And I appreciate you Laura.
The genetics for RLS comes from having Primary RLS. They found 3 genes which point to RLS. RLS can run in families and the gene is passed down from a parent. I have Primary RLS, i inherited mine from my father, i also have a brother that has RLS. Secondary RLS is having a underlying condition one of them being a low ferritin level.
I also have Primary RLS. I have a son who has it also, tho not as badly as I did. I don't know which parent I got it from, and I have no cousins, no aunts and uncles, so have no family info to go on. Plus, just like other genetic issues, I am sure it can skip a generation as well.
I have found the iron to be so helpful and based on info out there I am sure the problem with the iron/brain barrier is a genetic thing also. ( Tho some could have it more temporarily from just lack of iron.) But also, I understand some people get the secondary RLS from spinal problems as the underlying cause, or at least that makes it worse.
I have a healthy ferritin level so i would not take any more iron.
I always ask members if they know their ferritin level number, it is a important thing to ask, some one MIGHT have a very high ferritin level and not know it ,and taking any more iron could be dangerous. If someone has a low ferritin level then taking iron could help but i know it does not help everyone.
the genes for RLS are a very real thing. discovered and named in 2004 and 2007, and lots of genetic studying on this for years before that. For example, I have severe Primary RLS, as do both my sisters, my mother (mild RLS) my 2 nieces, my oldest niece's kids who are 12 and 9, plus the 12 yr old has PLMD as well as me, my sisters, and my youngest niece. Obviously, there is a genetic component there. My mother's actually started later in life, the kids since they were 2 yrs old or so, me 14 yrs old, my sisters both in their early 20's. And, we all eat different diets, live in different houses. My mother and I live together, and eat the same diet, and so on. RLS genetics means you have Primary RLS, no known cause. Secondary RLS has an underlying issue that causes it, like pregnancy, renal failure, being on a medication or medications that can trigger RLS, for some people some foods, spinal injury, low ferritin for some and so on. So, we really need to be proactive and remember that unlike 20 yrs ago, there is a ton of good information out there, and a ton of bad information. The basic rule is, if it sounds too good to be true, it probably is. Knowledge is power, and the more we know, the better off we are.
And, Oolong, as some of us are curious as to what part of the world you live in - my guess is -the Chicago area (or at least at some time.) This I figured by what you said about your allergist going to the University Of Chicago Medical Center for treatment. Would this be correct (unless you don't want to say...) I live just south of Chicago, myself.
Iron would seem to be a double edged sword, as too much is as bad as too little.
Surprising to most people, iron is essential for the growth of pathogenic microbes and all cancer cells. Not only is iron highly toxic in the tissues when present in excess, it is also the most vital nutrient for promoting nearly all infections as well as all cancers. Many of the most effective antibiotics are actually iron chelators, meaning they effectively starve the invader by taking away much of its necessary fuel, iron.
Similarly, cancer cells never thrive in an iron-poor environment.
Rafts, thank you! That information is really helpful. I don't know if you saw any of my previous posts - Dr. B is referring to the doc that I see at Hopkins. He didn't tell me all of that though. I'm supposed to be getting a call from Dr. Earlyy on Monday. He has not been in his office for 2 weeks.
Again, thanks for that info.
This is very interesting. Thanks for posting. I just called my Dr office to see if they do Infusions, bet I get the run around but completely agree with the Dr. that this could be genetic. My whole family of woman have RLS, we used to call it "Crazy legs" (before it had a name I even had it as a kid. My Iron is always low (less then 50) and I have been in fitness and done meal plans for over a decade, eating high iron, supplementing on an empty stomach with Vit C for absorption, avoid dairy, coffee/tea, never drink alcohol or smoked because they all hinder absorption of Iron..so does Fiber! So getting it from spinach is a major wheel spin. lol. I'm going to follow through and see what happens.
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Shesrestless some of us (not many) get essentially immediate relief from RLS by taking a highly bioavailable form of iron called iron bisglycinate on an empty stomach about an hour before bed. Not a cure, usually needs to be repeated every night or every night you feel the RLS coming on. Another interesting factor I discovered with "my" RLS is that it is exacerbated by a large meal in the evening where I eat to the point of satiation or beyond. It matters not what I eat, just the fact that I eat to the point of complete fullness. I read that a chemical called Leptin is released when we're full and that Leptin decreases the release of dopamine. Such a simple thing to do - not to eat to fullness at the evening meal - yet I do it over and over again. One night last week I had zero RLS and when I thought about it I realized that all I had for dinner was a cup of soup. Part of the problem is that the iron provides such complete relief I know that even if I indulge I can still get relief.
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Hi Eitheror: I hear you. I put the digestive cycle and RLS together years ago as well (Read about the Body Cycles - we have three a day and it's super interesting. I eat from 10 am to 6 pm currently) . As a former fitness model we never ate before bed and I've always stuck to this, not just for abs (hahaha) but because If I do eat at night (after 6 pm) then I do awake feeling my digestion and absolutely sleep way worse those night. I never drink alcohol and am cautious of anything that sedates as they make things worse. I do take IRON in the middle of the night with a vit C but will switch this to about 9pm and see what happens I saw a Dr about the I.V. and she was SOO condescending. She told me to "stretch" and take a Tylenol. Eye Roll! Thanks so much for the reply! Nice to talk to people who are "hacking" their RLS too!
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If you think it's strange that Leptin inhibits the release of dopamine, how about Ghrelin (which is released to cue us to eat) increasing the release of dopamine? And it's not that Ghrelin leads to eating and eating leads to the release of dopamine - the below article shows that just the injection of Ghrelin increases the release of dopamine. Since you're taking on the RLS au natural this is big stuff I would imagine. Might be big stuff for all of us. Not sure.
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lot of info there thanks. 
but completely agree with the Dr. that this could be genetic. My whole family of woman have RLS, we used to call it "Crazy legs" (before it had a name 
Iron Infusion coming up
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