Restless Legs Syndrome (RLS) Discussion Board

Hi folks
For those that oral iron supplements worked, how long after beginning oral therapy did it take to notice a difference??

I did take oral iron for a while but stopped because of constipation.
However I understand it takes several months to show an increase and may take a lot longer to increase enough to show benefit. Sometimes oral iron cannot be increased sufficiently to show benefit.

When I was first diagnosed, my ferritin was 46. After several months of taking oral iron two or three times a day, it was up to 90 but had no effect on my RLS. I continued taking it once a day for several years and eventually hit 650 and it never helped my RLS.

The Johns Hopkins data shows that only about 65% benefit from increased ferritin levels. For the rest of us, the theory is that there is a genetic issue that limits iron transport from the blood into the brain. For my group, infusions and oral iron don't help.

You might find this website helpful. Caitlyn is releasing a book soon, and also has the whole "Iron Protocol" up in a Facebook group. https://theironprotocol.com/our-story/

My ferritin level was 19 mg/dL when my PCP first measured it several years ago. After taking oral iron, 65 mg, daily it eventually got past 50 mg/dL in several months. It took about a year, but ferritin levels eventually reached 100 mg/dL. I only occasionally get RLS nowadays, and take 0.125 mg pramipexole when I do. I started taking pramipexole about a decade ago and have never augmented and never raised the dosage.

My ferritin was 33 in March of 2022, I began taking 325 mgs of ferrous sulfate with 100 mgs of vitamin C every evening. After one year my ferritin measured 161, and my RLS symptoms have diminished a lot. I still take monthly B 12 injections as I was deficient in 2021. I believe the entire experience is related to the fact that I was diagnosed with atrophic gastritis in 2021 as well.

Gastritis can certainly interfere with iron adsorption and thereby lead to low ferritin levels. It is great that you have been able to increase your ferritin to 161 after a year of oral iron and that it has helped with your RLS. Some doctors might say that you need to reduce the oral iron at this point, but Dr Earley at Hopkins believes that a ferritin level of 300 is the target for some people.

Thanks for the reply Steve, I stopped taking the iron pills as they were causing digestive distress, and heartburn. I still have symptoms, but they are minor compared to what they were.

There is a different iron product that is not iron sulfate that is supposed to be easier on the stomach. Often it goes by a name like "gentle iron". Often these are either iron gluconate or iron glycinate. It is more expensive than iron sulfate and you may need to take more than one pill in order to get the 65mg equivalents of iron. But it might be worth a try since iron sulfate helped other than the stomach distress.

Rustsmith wrote: Mon Dec 05, 2022 5:34 pm When I was first diagnosed, my ferritin was 46. After several months of taking oral iron two or three times a day, it was up to 90 but had no effect on my RLS. I continued taking it once a day for several years and eventually hit 650 and it never helped my RLS.

The Johns Hopkins data shows that only about 65% benefit from increased ferritin levels. For the rest of us, the theory is that there is a genetic issue that limits iron transport from the blood into the brain. For my group, infusions and oral iron don't help.

I'm not a big fan of "genetic", because a lot of times it's used as substitute for "something that we don't have biomarkers yet, but it ruddy well needs a cause so let's say it's genetic".

Iron transport can be impaired due to nutritional or environmental factors. For example, oxalates (which we eat in large quantities in modern nutrition, much more than or hunter-and-gatherer predecessors) blocks iron transport. Iron release time is delayed by a factor between 20 to 500 (https://www.sciencedirect.com/science/a ... 3604003523).

I struggled unsuccessfully with oral iron, until finally received an iron transfusion. Now the iron supplements are to try and keep the healthy iron levels stable, instead of trying to build them from scratch.

I struggled unsuccessfully with oral iron for a year and it just made my days worse. My legs felt better when I quit. I finally got a chance to get an infusion when my ferritin dropped by a factor of 10 and I was pronounced anaemic. After a transfusion my RLS has been worse than the last 60 years.

As a data point of one I have to give some credence to John Hopkins genetic theory. It definitely runs in my maternal line. How far I don't know. I can't imagine how previous generations dealt with it. Laudanum?

I get a blood panel next month and find out if the infusion level held four months. I believe my crash in iron was part of cancer or treatment but I've been fallowing my levels for ten years and they were textbook. And why would it not show up for a year and a half post treatment. More questions...

RLS13 wrote: For those that oral iron supplements worked, how long after beginning oral therapy did it take to notice a difference??

I have consistently found that when I start or stop or lower my oral iron, I notice the impact 3-4 weeks later. But I don't know how long it took to get my ferritin from 20 to over 100 in the first place.

Rsutsmith wrote: There is a different iron product that is not iron sulfate that is supposed to be easier on the stomach. Often it goes by a name like "gentle iron". Often these are either iron gluconate or iron glycinate.

Gluconate is not what you're thinking of, glycinate is. Ferrous gluconate is much like ferrous sulfate in terms of absorption, and both are similar to ferrous fumarate. The main difference is that a single pill of ferrous fumarate contains more iron than one of sulfate, which contains more than a pill of gluconate. For all of these, taking once every two days is recommended to keep absorption as high as possible (https://www.sabm.org/assets/pdfs/2aii-P ... ements.pdf).

Iron glycinate, on the other hand, causes less gastrointestinal distress. It is more easily absorbed because it's bound to an amino acid, which aids its passage thru the small-intestinal wall into the bloodstream. (Also called iron bisglycinate, ferrous bisglycinate chelate, and ferrous glycinate). However, each pill contains less than half the amount of iron as one pill of ferrous sulfate. This may not matter to you if more is getting absorbed.

Another form of iron that causes less gastrointestinal upset is iron protein succinylate. I don't know much about it.