Restless legs and iron supplements

[amiller2121]

Hey guys,

As are many of you, I'm looking for the root cause of my restless legs and I think I have it narrowed down to a functional iron deficiency. Recently, I've been working with a naturopath and she's had me taking oral iron supplements. It's a bit of a risk because even though my serum iron is at the very bottom of the range, my supplementary blood markers (TIBC and transferrin) are not high in the range which is something you'd expect to see if you had a straight up lack or iron. After two months of taking oral supplements every other day (alternating between 20mg of elemental heme iron and 80 mg of elemental non-heme iron bi-glycinate), I got my iron re-tested and I was shocked at the result.

As an interesting side note, during the two months, I didn't feel any symptom relief and actually felt worse at times. I assumed that this was because the oral supplements raise ferritin slowly and it simply wasn't high enough for me to feel relief. When I got the results back, I had an idea why. Even though my serum iron had gone up by a small amount, my ferritin had actually DROPPED by 30 (87 -> 57). This blew my mind as I was eating a regular diet (50g-70g of protein a day and according to a nutrition tracker, I was getting my DV of iron) on top of the oral iron supplementation.

On the surface, this is a really negative result but maybe, just maybe, this is giving me a clue. It looks like during the two months, my body was flat out rejecting dietary and supplementary iron - and using my basic internet researching skills, this seems to point to hepcidin.

I think that the iron supplements are causing my body to produce a significant hepcidin excess which then prevents any sort of iron absorption. My current theory is that my slightly impaired kidney function (blood creatinine slightly above range and my eGFR around 65) and is preventing optimal hepcidin clearance through my urine which is consequently impacting my iron absorption. I've read several articles (and posts on this forum) that the IV iron can be an effective alternative to oral as it can bypass the hepcidin gatekeeper.

I've spoken to my naturopath about an iron infusion and she says despite my symptoms, that a 57 ferritin is still considered "normal" by most doctors and as a result, will be reluctant to help me by prescribing the IV. My iron blood markers are far from optimal but nothing is technically out of the medical establishments range. It's a real pickle and I don't know what to do other than stop taking the oral supplements and try eating a ton of red meat (which is not good for people with kidney problems).

I'm so desperate to solve this (I know you all can identify) that I'm thinking about tanking my ferritin on purpose so my doctor will take action with the infusion.

Do you think that's a crazy plan? I just don't know what else could cause my ferritin to go down with regular eating along with oral iron supplements in two months.

Andrew

[Madlegs1]

You could try taking vit B12 oral spray 1200mcg per day. That helped me get iron up.

How have your %sat figures moved?

[amiller2121 in reply to Madlegs1]

I actually took some high potency B12 sublingual tablets earlier this year and i boosted my B12 up over 1000 so I'm really happy with that. I wish iron was that easy. Thanks for the suggestion though.

[Hidden]

That's a difficult one. You're probably right about the absorption. A simple thing you could try is drinking citric acid with every meal e.g. orange juice.

The other thing is there isnt necessarily any correlation between iron ingestion and Brain Iron Deficiency, (BID) which is one known cause of RLS, so as you say, an iron infusion might be necessary.

On the other hand Primary or Idiopathic RLS doesn't necessarily have a root "cause" as such. It has some genetic component and therefore you could say, it's what you are. Nothing you can do to change that!

Madlegs suggestion sounds a good idea.

Sorry to say, eating red meat isn't just bad for your urea levels, it's the number one worst thing you can eat which is contributing to global warming. Especially beef!

Cow fart!

[amiller2121 in reply to Hidden]

Fair point, Manerva. I do still like the taste of meat but I try and keep my protein down to 70 grams or less. It seems that supplementation is the only way to go.

[Hidden]

My Ferritin level is 83. And my Doctor tells me above

75 And above is good. Lower than that you need supplements

[amiller2121 in reply to Hidden]

Good to know.

[DicCarlson]

You may indeed have an absorption problem - switch to a Iron supplement by Patch MD - it will bypass the digestion system. patchmd.com/Iron-Plus-Topic...

[amiller2121 in reply to DicCarlson]

Interesting! I've had not heard of this. I thought my only options were oral or parenteral. Is this a product you've used before?

[LotteM in reply to amiller2121]

I am using these patches as well. In addition to the once every other day gentle iron (although earlier I took the ferrofumerate prescribed my my gp). Raised my ferritin again until just above 100 in about three months. After it had dropped again to lower, but still ‘normal’ levels on ferrofumerate only. And no obvious side effects. But regular checks to see whether you do ‘t give yourself iron overload is still advisable.

Hepcidin indeed reduces iron absorption, but not beyond the ~24h limit. Hence, hepcidin cannot easily account for your reduction in iron levels even though you take iron. And red meat maybe somewhat better than heme iron, but not much. As heme iron is made from meat.

Your situation seems special and in my view certainly needs looking into by a specialist. Which one, that may be hard to decide, as according to ‘normal’ standards re iron you don’t have a problem. Haas you doctor considered that you maybe losing blood internally?

[amiller2121 in reply to LotteM]

Very interesting. One thing that has made me challenge my hepcidin theory is that my hsCRP has been tested several times over the last few months and comes back very low (<.25). In some Pubmed articles I've skimmed through, CRP is used as a 'surrogate' marker for Hepcidin so my hsCRP being so low that doesn't align with my theory of hepcidin blocking my iron absorption.

As far as my doctor goes, she has not been very helpful. She's referred me to a sleep clinic which has has not helped me at all. And because my blood markers technically still within the lab range range, she seems unwilling to take any action. Get this - after my last appointment about my RLS, she told me that I should "massage my legs to make the sensation going away". I really need a new doctor.

[DicCarlson]

I have not used it - but others on here have. I did use oral Ferrous bisglycinate and it eliminated my severe RLS (but not the insomnia).

[amiller2121 in reply to DicCarlson]

Interesting. Related question...is 'iron' biglycinate the same thing as 'ferrous' biglycinate?

[LotteM in reply to amiller2121]

It is.

[DicCarlson in reply to amiller2121]

albionferrochel.com/index.php

[Brica in reply to DicCarlson]

I have had RLS since childhood and I have had a good response with oral iron supplements (Slow FE Iron 3 x day) and Klonopin for sleep 1mgm. and repeat In 3 hrs. I take it sub-lingualinay 3 hrs. before bedtime and then at bedtime. Over the years I have been on most of the meds used to treat RLS; worked for a while, but stopped. My iron level is now 154 and Ferritin 174; have it checked every 4 months when I see my Doctor who treats RLS. Most nights I now sleep 7-8 hrs. Important to find. Doctor who knows how to treat you; the RLS Organiztion can be helpful in locating a Dr. near you. Hope you get relief soon. Brica

[amiller2121 in reply to DicCarlson]

What was your daily dosage?

[DicCarlson in reply to amiller2121]

Mine was 18mg Ferrous Bisglycinate Chelate - taken mid morning between meals.