Restless Legs Syndrome (RLS) Discussion Board

Has anyone here tried Iron Heme Polypeptide Tablet/Proferrin as an iron supplement. I read some articles which say that it works as well as Intravenous Iron Sucrose. If you have tried it, how did it work? Any problems? Did you have constipation?

I have no experience with this. I read the Wikipedia articles, and it appears to me that these react in the stomach and intestine to form the same iron ions that ferrous sulfate does. If so, then they are likely to cause less stomach upset than Ferrous sulfate, but also unlikely to get your blood ferritin levels above 80-100 (the limit imposed by hepcidin blocking the iron uptake from the intestine to the blood).

rlsgal70 wrote:Has anyone here tried Iron Heme Polypeptide Tablet/Proferrin as an iron supplement. I read some articles which say that it works as well as Intravenous Iron Sucrose.

Do you have a link to the article?

Hmmm..
Tantalizing information in that article. The fact that the patients all had severe chronic kidney disease makes extrapolation to the normal-kidney group that most of us are in difficult. Also the paper said that ferritin in the IV group increased significantly compared to the oral group. Ferritin is a storage protein, and the study used endpoints of hemoglobin increase and transferrin saturation increase, both of which are not terribly relevant to the usual RLS patient with normal hemoglobin.

Regardless of those concerns, it does raise the possibility that some form of oral iron may increase ferritin significantly over 100 in people with normal kidneys.

Why don't you try it and see?

https://juniperpublishers.com/jgwh/pdf/ ... 555822.pdf
This also suggests it is a useful alternative to iv iron. I think I will order some.

Another provocative article. What I found most interesting is that HIP iron utilization was not related to hepcidin levels, increasing the possibility it could increase ferritin above 100.

I currently take 3 tablets of sulfate or fumarate with 60 mg iron in each, or 180 mg elemental iron. (And I notice within a few weeks if I drop down to 2 tablets.) Each heme tablet (Proferrin brand) has 11 mg. That would be over 16 tablets to get an equivalent dose.

Presumably, it is more efficiently absorbed so I wouldn't need as much. Absorption of the salts is only about 10%, which means I'm only absorbing 18 mg of the 180 I consume. But what is the absorption efficiency of the heme iron? One source that says the "usual" dose of Proferrin is one or two tablets (22-24 mg), and the "usual" dose of sulfate is 2 tablets (120 mg). So maybe I can get by with 3 tablets of the heme iron. That's better than 16, which would be prohibitively expensive and probably impossible to swallow after a while. But I really don't want to do those weeks-long experiments to find the right dose - having bad symptoms for any amount of time is unpleasant.

Legs, how will you determine how much to take?

Unlike you, Beth, I have the sort of mundane mind that will accept instructions from the side of a packet. I hadn’t even considered what dose to take and have now ordered (at a fairly hefty price tag - though cheap at the price - how often have I used that justification? - if it helps resolve the legs) one pack of the tablets. Will await its arrival and consider the dose issue then.

lol. Let us know how it goes!

After further investigation it appears that heme iron MAY not have hepcidin dependent restrictions on transport into the blood that non-heme iron (ferrous sulfate and other non-organic iron preparations) has.

Non-heme iron absorption from the intestine into the blood is limited by hepcidin, a hormone generated especially when the ferritin is over 100. Hepcidin blocks export of iron from the intestinal cells into the blood by blocking ferroportin, an export transport channel in the membranes of intestinal cells.

Heme iron is absorbed into the intestinal cells by a different mechanism than non-heme iron. What is NOT known is exactly how heme-iron gets out of the intestinal cell and into the blood. One theory is that the heme iron is broken down inside the intestinal cell and that the iron is exported into the blood by the same mechanism as non-heme iron, i.e. controlled by hepcidin levels. An alternate theory is that heme iron has a different mechanism and is more-or-less exported into the blood by specialized heme transporters. If so, heme-iron has the potential of increasing a persons iron stores even if the ferritin is above 100. Research is ongoing.

In my quest to keep my iron levels as high as possible and hopefully decreasing the frequency that I will need repeat IV Iron (Injectafer) infusions, I have ordered dessicated spleen tablets (lots of heme iron, 2mg/500mg capsule) from amazon and transdermal iron patches. Even better might be eat spleen or liver from the butcher shop, but both are gross as food, LOL. Good evidence they will help is NOT available, but there IS good evidence that ferrous sulfate orally is very unlikely to help keep my ferritin high enough to keep my RLS symptoms at bay, both in the literature and by my personal attempts at increasing ferritin with ferrous sulfate.

I have never seen spleen for sale but have often eaten lambs liver (not pig's, its' too strong).
Fried off with onions it is actually pretty good. As children my brother and I were brought up eating liver probably at least weekly as it was inexpensive, we were probably using pig's liver as it is cheaper.
I would still on occasion cook it but our sons would run a mile.

I started eating liver when I went on the Wahls diet in 2014. You're supposed to have organ meats 3x a week but I don't come anywhere close to that. Still, a handy way to eat it is to cook a whack of bacon and onions, then sear the liver and barely cook it in the bacon grease, then grind it all up in a food processor along with a touch of apple cider vinegar, salt, and other stuff to make it tastier. It becomes liver paté. Yum.

Yes, I'd cook it often with bacon but on a plate with veg.
That's a good idea for the pate.

I like fried chicken livers, but have bad memories of beef liver. My Mom (who had RLS) went through a phase when she made me and my brothers and sisters eat small amounts of raw beef liver daily when we were children. Might actually have been a good idea, but we didn't think so. My grandmother bought spleen from the butcher when I was a kid. She fed it to her Siamese cats. I bet they didn't have RLS. https://youtu.be/JN0OQVs0vR0