Iron has helped

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barbeegee
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Iron has helped

Postby barbeegee » Sun May 20, 2018 10:45 pm

Slow Fe, an iron supplement that I bought on Amazon has helped. It hasn't cured my RLS, but I have episodes a bit less often and less severe. I've only been taking it for a week but the daytime Restless legs has ceased almost completely. I still have them at night, but they are less severe.

As I continue with the treatment I'll report back.

stjohnh
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Location: Palo Alto, California

Re: Iron has helped

Postby stjohnh » Sun May 20, 2018 11:43 pm

Yay!!
Blessings,
Holland

ViewsAskew
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Re: Iron has helped

Postby ViewsAskew » Tue May 22, 2018 8:08 pm

Great news!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

barbeegee
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Joined: Thu Apr 26, 2018 1:29 am

Re: Iron has helped

Postby barbeegee » Wed May 23, 2018 3:57 pm

It's been two weeks and the RLS is almost nonexistant. It rained all day yesterday so I was forced to stay inside and so sat on my computer all day (I'm a writer) and I got restless legs after extended sitting in the daytime... but last night I slept sounding without any problem. I'm hoping I found the solution.

legsbestill
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Re: Iron has helped

Postby legsbestill » Wed May 23, 2018 9:10 pm

That’s fantastic. It’s great to get your updates.

Stainless
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Re: Iron has helped

Postby Stainless » Fri May 25, 2018 2:52 pm

Best of luck! Hope it is your solution.

I've been taking Easy Iron (Ferris Pyrophosphate) even though I don't have a low level with no perceivable effect. I noticed the Slow Iron you are on has three times the elemental iron as iron sulfate (and probably Pyrophosphate). Does anyone have an opinion about the differences and how much your body can make use of? Especially if I have a normal iron level.

stjohnh
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Re: Iron has helped

Postby stjohnh » Fri May 25, 2018 3:55 pm

For most people with RLS, the problem is not so much inadequate iron intake as inadequate brain iron. The ferritin test, which is the one we usually use for judging iron levels in the blood, very poorly reflects the amount of iron in the brain. The real problem for RLS patients is getting the iron from the blood into the brain. This is a complex biochemical process and not completely understood, almost certainly related to multiple genetic factors. There isn't a simple answer to your question, indeed it's well-known that some people have very high ferritin levels, and still have RLS symptoms. It is also known that not all people respond to intravenous iron infusions, which temporarily cause extremely high iron levels in the blood.

I personally think that all people with RLS should take some form of oral iron everyday, unless their ferritin is already over 300. Even if it helps only a little, is it inexpensive and has essentially no side effects.
Blessings,
Holland

Rustsmith
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Re: Iron has helped

Postby Rustsmith » Fri May 25, 2018 4:03 pm

Slow iron is a mixture of iron sulfate and dicalcium phosphate. In the acid of the stomach, this will produce ferrous phosphate, which is a complexed form of iron. Complexation is a special chemical condition and is important here because the iron needs to remain chemically soluble once it gets into the intestines. Complexation allows the iron to stay in solution without forming free iron. Any free iron will be grabbed by the good bacteria in the intestines (which can cause some discomfort as the start to multiply) and will also react with sulfides produced by these bacteria to form a black, insoluble iron sulfide, which the body cannot adsorb.

Easy iron is ferric pyrophospate, which is another complexed form of iron. It is added to baby cereal and formula to fortify the produce with iron.

Iron sulfate pills need to be taken with orange juice or Vitamin C. The orange juice will form a complex compound, iron citrate, and the Vitamin C will form yet another complex, iron ascorbate.

All four iron complexes (phosphate, pyrophosphate, citrate and ascorbate) are bioavailable to different degrees. Studies of iron pyrophosphate for baby formula found that it was not as available as iron sulfate unless it was added to skim milk. The normal recommendations for Iron sulfate say to take it on an empty stomach. Therefore, how much iron you get from any one of these depends upon a number of other factors (some of which are probably individualized to you).

So, which one to take, they all work but the cost varies. If iron sulfate is too hard on your stomach, then the added cost for one of the other products would probably be worthwhile.

To add to Holland's statement, my ferritin levels were greater than 600 early this year yet my RLS is as bad as ever. I have seen some discussion proposing the idea that one of the genes identified as being associated with RLS may play a role in the design of a protein that is critical to transporting iron across the blood brain barrier. So far this is just an idea that hopefully will receive some research attention in the near future.
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.

barbeegee
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Joined: Thu Apr 26, 2018 1:29 am

Re: Iron has helped

Postby barbeegee » Mon May 28, 2018 1:24 am

The Slow Fe has given me some constipation and some minor RLS if I relax in the daytime, but so far none at night. I dont think this is a cure, but right now I'll take all the help I can get.

Sequoiah66
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Re: Iron has helped

Postby Sequoiah66 » Tue Jul 10, 2018 7:37 pm

by Rustsmith » Fri May 25, 2018 10:03 am
Slow iron is a mixture of iron sulfate and dicalcium phosphate. In the acid of the stomach, this will produce ferrous phosphate, which is a complexed form of iron. ... Easy iron is ferric pyrophospate, which is another complexed form of iron.... Iron sulfate pills need to be taken with orange juice or Vitamin C. The orange juice will form a complex compound, iron citrate, and the Vitamin C will form yet another complex, iron ascorbate. ... So, which one to take, they all work but the cost varies. If iron sulfate is too hard on your stomach, then the added cost for one of the other products would probably be worthwhile.


I've switched from my standard iron supplement (w vit C) to Slow Fe and seem to be getting some increasing degree of relief. No blood tests yet to see of they are helping blood ferritin levels.

However, I am interested in coordinatying an empirical study / reference if folks are interested. If folks tell me what didn't work for them and what seems to work better for them I will build up this info into a chart that can help people figure out what may work / better. Obviously different people are different, but with so many different OTC supplements out there, I would greatly benefit from some form of empirical information about brands, vC/OJ, etc.

So, useful information might include:
What worked / what didn't work, and what worked better than.
Brand and source (iron sulphate, dicalcium phosphate, ferrous phosphate, ferric pyrophosphate, iron citrate, iron ascorbate, ...)
Taken with vC, OJ, ...
Dosage (mg, actual fe mg)
time of day
empty stomach, etc.
other relevant info

I'll check back and occasionally post the results. :P :P

Rustsmith
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Re: Iron has helped

Postby Rustsmith » Tue Jul 10, 2018 7:55 pm

I took iron sulfate (Nature's Bounty 65mg Fe as 325mg FeSO4) and a 400mg Vitamin C tablet mid-morning on an empty stomach. I did that daily for about 4 years. I started with a ferritin level of 42 (I think). Earlier this year I stopped because my ferritin had jumped from about 300 to 650 in six months. Unfortunately, even with a ferritin level of 650, my RLS is about the same as when I first started treatment and I have had a couple of breakthrough nights that were as bad as my symptoms were before diagnosis and treatment.
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.

badnights
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Re: Iron has helped

Postby badnights » Mon Aug 06, 2018 3:05 am

Ferrous sulfate 3x 65mg elemental iron equivalent. Take three pills at once an hour or so before bedtime with 500 mg vitamin C. Repeated experiments both intentional and unintentional over the years have shown me that reducing this dose - even by taking the third pill only on alternate days - results in worsened symptoms. The lag between dose changes and their effects is 2 or 3 weeks. The iron is helping me keep my dose of hydromorph contin down.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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