ferratin

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Rustsmith
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Re: ferratin

Postby Rustsmith » Sat Nov 12, 2016 8:34 am

Yes, if anyone knows what they are doing for those of us whose RLS is due to the blood brain barrier I would love to know. Something in my gut tells me there is a CURE out there and I feel like it's simple, perhaps that's just high hopes. Good night!


Take a look at the info in this note, it reports on a webinar on RLS research. You will need to be a Foundation member to view the video once it is posted. But during the Q/A session afterward, Dr Rye spoke about how he believes that the genetics work that is currently being done can eventually lead to a cure. But that doesn't necessarily mean that any of us will live long enough to see it.

http://bb.rls.org/viewtopic.php?f=5&t=9808
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: ferratin

Postby stjohnh » Sat Nov 12, 2016 4:15 pm

Ferritin is a storage protein reflecting the amount of stored iron in the body. That is why some people can take iron supplements and have an improvement in their symptoms before the blood level of ferritin increases much. Taking ferrous sulfate tablets 3 times daily will increase the speed at which the body's iron levels will increase. If you have stomach upset with ferrous sulfate tablets on an empty stomach you can take it with food, it will still increase your iron stores, just more slowly than on an empty stomach.
Blessings,
Holland

legsbestill
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Re: ferratin

Postby legsbestill » Sun Nov 13, 2016 10:34 pm

Thank you for that StJohnh, it is very useful to know how to take it optimally. I struggle with the concept of an 'empty stomach'. Perhaps I eat too much at meal times :-( but tend to feel quite full even 3 hours after eating so defer taking the iron tablet and then, an hour later, although my stomach now feels empty, I am far too hungry to contemplate waiting an hour after taking the tablet before eating again! I take one before I go to bed and one again in the middle of the night when I am up pacing but then I worry that I am taking too much iron without breaking it up with a meal in between tablets ... It is good to know that taking it with food will increase the stores, albeit at a lower rate.

shirleysguy
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Re: ferratin

Postby shirleysguy » Wed Nov 23, 2016 4:34 pm

My ferratin level was 60 in a recent test, but the PA said there was a high hematocrit level that indicated a high level of available iron so iron therapy was not indicated. Does this make sense?

stjohnh
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Re: ferratin

Postby stjohnh » Wed Nov 23, 2016 10:58 pm

shirleysguy wrote:My ferratin level was 60 in a recent test, but the PA said there was a high hematocrit level that indicated a high level of available iron so iron therapy was not indicated. Does this make sense?


No, the PA doesn't understand that the "normal" use of ferritin is to determine if a person has enough iron to make red blood cells (which you do have). But many people with RLS need extra iron above the amount needed to make red blood cells. A high hematocrit does NOT mean you have too much iron. If your hematocrit is above the normal range you have some other problem causing that, maybe just lab error, maybe something else. Take oral iron to get your ferritin up to 100 if possible.
Blessings,
Holland

Noreserve
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Re: ferratin

Postby Noreserve » Fri Dec 30, 2016 8:49 am

Peanut, how are you doing? I have not been on here for a while, but I am thrilled to hear you are doing better. I think you have found the closest thing to a cure that will be found for many years to come. I have read hundreds of articles and have concluded that a brain (not really body) iron deficiency is a major contributing factor to RLS. My body stores of iron are over 100 but based on articles I have read my RLS brain is incapable of storing iron. During the day, supposedly, our free floating unbound blood iron levels are good but at night human's blood iron levels drop. I picture the rest of the world making a withdrawal from their brain iron bank at night but we have a zero balance in that particular account. Anyways, whatever the case maybe, I know that myself and dozens of other have found relief with iron. For me I have to use ferrous bisglycinate, on an empty stomach, during an attack or about an hour before bed. Within an hour the RLS is gone for the night. If I don't have RLS, I don't take the iron. Science has learned so much in recent years about dosing with iron and they are rethinking that three time a day iron supplementation. They realized that with that very first iron pill of the day our bodies release a hormone called hepcidin. That hepcidin prevents the next iron pill from being absorbed from the GI tract. It takes at least 24 hours for that hepcidin to clear. So now scientists are thinking an every other day dose of iron might actually be better - at least for anemia :). I'm sure the same is true for RLS. Plus I truly believe that in order to work for RLS we have to take a form of iron that stands a chance of crossing the blood brain barrier. I think the bisglycinate is one of the forms capable of doing this. But if I take iron in the morning, even if it's the bisglycinate, it will do nothing for my night time RLS.

Noreserve
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Re: ferratin

Postby Noreserve » Fri Dec 30, 2016 9:18 am

Here is a believer from another forum (all names, references deleted to protect the innocent):

"About four weeks ago I read on here a post about gentle iron. After a really bad session of RLS I thought it was worth a try. I also went on a link to an article about the anemic brain. I bought some and waited for my legs to start . Sure enough that night they started, just as a film was getting interesting. I took a iron tablet and about 30 minutes later watched the rest of the film. I have since taken one tablet every night and have not suffered RLS. Just to satisfy any doubt I have since knocked the iron off and RLS returned the next day. So back on the iron now. The other amazing fact is my daughter has dystonia and also tried the iron , after learning about the anemic brain theory . She is so much better and has now come off her prescription drugs. I can't thank this site enough, and thank you to all the people who take the time to share there information."

Noreserve
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Re: ferratin

Postby Noreserve » Fri Dec 30, 2016 9:35 am

Great article on RLS, if you're a biochemist ;)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4559751/

Noreserve
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Re: ferratin

Postby Noreserve » Wed Jan 04, 2017 9:25 am

Well hard as I tried I found no published reports that ferrous bisglycinate is more likely to cross BBB. The trick seems to be getting the iron absorbed into the bloodstream. Once that hurdle is passed it is oxidized and bound to transferrin and is all the same in other words. There are published articles that indicate that serum iron levels drop at night and it's speculated whether this gives rise to RLS. I know that taking a bio available form of iron at night rids me and numerous other people of RLS. Glad I got that off my chest.

stjohnh
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Re: ferratin

Postby stjohnh » Wed Jan 04, 2017 11:51 am

Noreserve wrote:Well hard as I tried I found no published reports that ferrous bisglycinate is more likely to cross BBB. The trick seems to be getting the iron absorbed into the bloodstream. Once that hurdle is passed it is oxidized and bound to transferrin and is all the same in other words. There are published articles that indicate that serum iron levels drop at night and it's speculated whether this gives rise to RLS. I know that taking a bio available form of iron at night rids me and numerous other people of RLS. Glad I got that off my chest.


Hmmm... the article you pointed to in your post above of 12/30 says there are two iron problems in RLS. First is blood brain barrier transport reduction. Second is increased mitochondrial iron accumulation, leaving the rest of the neuronal cytoplasm iron deficient. I don't see that that would make one form of iron better than another, but there is also evidence that some forms of IV iron work better than others as well.
Blessings,
Holland

Noreserve
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Re: ferratin

Postby Noreserve » Wed Jan 04, 2017 6:57 pm

Oh St. John you're good, you understood that article. Not me. You and I need to talk. I have at least a dozen questions for you. I'm at work but stay tuned, ok?

stjohnh
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Re: ferratin

Postby stjohnh » Wed Jan 04, 2017 11:03 pm

Well, there is lots I don't understand either, but I'm happy to discuss any of this with you or anyone else.
Blessings,
Holland

Noreserve
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Re: ferratin

Postby Noreserve » Thu Jan 05, 2017 12:09 am

https://www.google.com/?gws_rd=ssl#neww ... +reservoir

Sink your teeth into this one. I probably read this article a dozen times before I realized what the researchers were saying. They're saying that not only are certain parts of our brain iron deficient such as the substantia nigra and putamen but that there's an "iron reservoir" within the blood brain barrier itself that is woefully low in RLS patients. So am I wrong in believing that not only are the dopamine producing parts of our brain anemic but our entire brain iron reservoir is completely inadequate as well.

Based on these articles and my imagination, this is the RLS world according to me: The serum iron level of human beings tend to drop in the evening. Unlike old theories about static iron levels, our brains need a pretty constant supply of iron to keep humming along and producing and releasing dopamine (among other activities). When evening comes and the non-RLS world goes to sleep and the dopamine transporting parts of their brain are hungry for iron it can go to the brain iron reservoir (located within the BBB), make a withdrawal and the non-RLS world will never feel so much as a twinge of RLS. Now when the RLS world goes to sleep in the evening and our dopamine transport system craves iron our reservoir is dry. Our dopamine transport system comes to a grinding halt and we end up with all out RLS. So that's why the DAs and the iron I sneak my brain at night work so well.

But what about all of those binding proteins like transferrin and ferritin that allow people to store iron in the brain and elsewhere that are also low in RLS patients??? What can we do or take to bolster these proteins? I read that copper is necessary especially for brain iron binding. I also read that lactoferrin is a good iron binder, iron source and some people who supplement with it got relief from RLS. Is it just a matter of mega-dosing with iron to fill up that reservoir? Has any scientist ever imaged the iron in the BBB before and a few weeks after iron infusion? Do you think they should? They should also probably image our D2 receptors before and after infusions. I think the only thing they do is measure our body iron stores which as we know seem to have very little to do with brain iron levels.

stjohnh
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Re: ferratin

Postby stjohnh » Thu Jan 05, 2017 1:02 pm

Noreserve wrote:https://www.google.com/?gws_rd=ssl#newwindow=1&q=penn+state+hershey+restless+legs+syndrome+blood+brain+barrier+iron+reservoir

So am I wrong in believing that not only are the dopamine producing parts of our brain anemic but our entire brain iron reservoir is completely inadequate as well. ...


Well, this article only addresses BBB transport, and says transport is low, and hypothesizes that there is a reservoir function (they didn't investigate this). They didn't address substantia nigra intracytoplasmic iron, which is also low due to overly aggressive mitochondrial iron accumulation. Also, RLS brains have an excess of dopamine, not a deficiency. There is a relative deficiency of dopamine at night when the falling dopamine levels aren't sufficient to adequately stimulate the down-regulated dopamine receptors, leading to RLS night symptoms.
Blessings,
Holland

Noreserve
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Re: ferratin

Postby Noreserve » Thu Jan 05, 2017 8:47 pm

Maybe those dopamine levels fall because of the diurnal fluctuation of iron:

https://pdfs.semanticscholar.org/f06b/a ... c8c8a2.pdf

At any rate, anyone who is taking iron now I would try taking it during an attack or an hour before bed. Mostly doctors do not care when you take iron or even what type. I also would take a slightly larger dose once a day rather than a smaller dose three times a day. If I don't have RLS I don't take the iron. What's the point of getting our iron stores way up there when there's tens of thousands of people who have iron stores of over 100 and still have RLS. The definition of insanity is doing the same thing over and over again and expecting a different result. Try taking a bioavailable form of iron at night and call me in the morning ;)


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