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Oral Iron Therepy
Posted: Mon Dec 05, 2022 4:34 pm
by RLS113
Hi folks
For those that oral iron supplements worked, how long after beginning oral therapy did it take to notice a difference??
Re: Oral Iron Therepy
Posted: Mon Dec 05, 2022 5:02 pm
by Polar Bear
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.
Re: Oral Iron Therepy
Posted: Mon Dec 05, 2022 5:34 pm
by Rustsmith
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.
Re: Oral Iron Therepy
Posted: Wed Dec 07, 2022 4:29 am
by SquirmingSusan
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/
Re: Oral Iron Therepy
Posted: Tue Feb 14, 2023 7:28 am
by TimG
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.
Re: Oral Iron Therepy
Posted: Sun Apr 23, 2023 2:56 pm
by golfer904
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.
Re: Oral Iron Therepy
Posted: Sun Apr 23, 2023 6:12 pm
by Rustsmith
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.
Re: Oral Iron Therepy
Posted: Mon Apr 24, 2023 7:50 pm
by golfer904
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.
Re: Oral Iron Therepy
Posted: Mon Apr 24, 2023 8:25 pm
by Rustsmith
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.
Re: Oral Iron Therepy
Posted: Wed May 31, 2023 12:34 pm
by Frunobulax
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).