Restless legs - 5 years and counting - low iron

[amiller2121]

Hello fellow restless legs sufferers,

I'm new here and I just wanted to introduce myself. Here's my situation:

I'm a 40 year old single guy and I've been an RLS sufferer for approximately 5 years. After reading some of your stories, I realize I'm lucky that I haven't suffered from it as long as some people.

I believe the initiator of my condition was physical stress. I was a shiftworker (including working nights) and on top of that, I was intermittent fasting, drinking too much coffee and exercising too much. In the first year or two, I didn't put it together that my sleep was suffering but I eventually realized that I was waking up an hour or so after going to sleep regardless if it was after a day or night shift and just tossing and turning. Over the years, the issue has gotten slowly worse. The only thing that I've found that helps with the symptoms is kratom. I'm not sure how many of you are familiar with this 'supplement' but it works wonders for me. Obviously, I'm not a doctor and I know there is still a lot we don't know about kratom and I am scared that taking it every night is eventually going to lead to something much worse than RLS. But, in the mean time, the sleep is good.

A few interesting points with my situation:

-I believe the root cause is at least partially tied to my iron level. My blood work shows my serum iron is low. Not low enough for my MD to take action, but low. Ironically (see the pun there), I am not anaemic and my ferritin if anything is high. It seems that my body is withholding iron from my bloodstream for some reason but I'm not sure why. I know that low iron is a classic cause for RLS but I can't seem to figure out what's causing it. I don't seem to have any other major conditions (like a bacterial infection) other than constantly having to blow my nose due to excess mucous and my blood creatinine is elevated.

-My cortisol is showing as elevated after taking a 24 saliva cortisol test. Bloodwork shows the presense of thyroid antibodies so there's some sort of auto immune thing going on there.

-A few years ago, while I was on shift, I took an adrenal supplement (burdock root, sumac root, licorice, etc.) that for two nights gave me the best sleep I had in probably 15 years. After those two days, it just stopped working. It didn't even stop working slowly - it just stopped. I've experimented a ton since then and nothing even moves the needle. It seems like there was some sort of X factor those two nights but for the life of me, I can't figure out what it was. Because of these magical two nights, I feel there is some tie-in with my adrenals/thyroid but I'm not sure how that relates to serum iron.

-I have never taken any medication to treat it (Requip, Mirapex, Gabapentin) by choice

My memory has gotten really poor over the last few years which I attribute to my lack of quality sleep. My self esteem is also low and as a result, my dating life is non-existent and I often doubt any woman being interested in me long term with me not being able to sleep through the night without kratom.

Anyway, thanks for taking the time to read all this. It feels good just to talk about it.

Andrew

[Jev1972]

Kratom works for me too. Only issue is low doses keep me up so I have to take large amounts, 6 grams. I worry this is too much. What strain and does do you take? How long before bed do you take it. Also marijuana works wonders.

[amiller2121 in reply to Jev1972]

I need 4-5 grams to do the trick as well. I actually rotate four strains: Maeng Da, Red Bali, White Indo and Benteungie. I usually take it half hour before bed and find it's most effective if my stomach is empty. I'm a cannabis fan too but I find it's not quite as effective.

[Gmc54]

Have you tried taking an iron supplement just before bedtime. That way it is in your bloodstream before you sleep. I take one called gentle iron, together with a vit C supplement about an hour before bed. I also take one Tramadol, and magnesium supplements. It doesn’t take the rls away completely, but at least most nights I get at least 6 hours sleep.

[amiller2121 in reply to Gmc54]

I have tried and it made no difference unfortunately. I assume that's my body has enough iron already (ferritin is at an acceptable level) but my body doesn't want to use it.

[DicCarlson]

Well, just when you think you understand the whole iron-ferritin balance in the body and the contribution to RLS - there's this "Anemia of Chronic Disease". It explains the low serum iron - high ferritin. Long article, hard to digest... irondisorders.org/anemia-of...

[rls_optimist in reply to DicCarlson]

Excellent article, DicCarlson, thanks! This helps to further develop the iron picture that you and I have been struggling to understand. This raises the important point that iron supplements should NOT be taken if Anemia of Chronic Disease (ACD) is suspected. A normal or high ferritin level coupled with a low iron level (or more precisely, iron level / TIBC < 0.2) might indicate presence of ACD.

[amiller2121 in reply to rls_optimist]

A very interesting article. I do think I fit the criteria for ACD. The question is what is causing my inflammation? It's frustrating because my lab tests (other than the ones I ran through my Naturopath that indicated my thyroid antibodies were elevated) don't really give an indication as where my problem is. I consider myself a pretty healthy person (I'm at a good weight and I eat well) but there's obviously something going on there and it's been getting slowly worse over the years.

The article does mention CKD, which I don't technically have but my creatinine has been elevated for even longer than I've had my RLS so maybe there is some relation to my kidneys. I do find it a bit ironic It seems my body is protecting me from something which is a good thing but it's coming at the cost of my sleep.

[rls_optimist]

Hi, amiller, as DiCarlson says, iron may still be an issue for you. What is your actual ferritin number? For RLS folks, it needs to be at least 100. Also (and I confess I have not yet read Carlson's link - it may get into this), hematologists say that ferritin alone is not a sufficient measure of iron. They recommend also looking at a second measure, which is blood iron divided by TIBC (total iron binding capacity). If that number is too low it signals a problem: it needs to be higher than 20. Sinc you say your blood iron is low, I suspect this may be worth investigating. Good luck!

[amiller2121 in reply to rls_optimist]

Here's the relevant biomarkers (I'm in Canada so the units of measure you recognize might be slightly different):

Ferritin: 150

Iron: 10 umol/l (slightly below "normal" range)

Transferrin: 2.44 g/l ("normal" range)

TIBC: 61 umol/L ("normal" range)

HS-CRP: .36 mg/L ("normal" range)

Gamma- Glutamyltransferase: 11 U/L (below "normal" range)

As far as the iron goes, I think it's unusual that 10 is considered normal. I am a big guy (6"1' and 200 lbs) and would expect it to be much higher.

[rls_optimist]

Now that I've read the important article on iron and Anemia of Chronic Disease ACD) that DiCarlson posted, I see that it is CRITICAL to NOT take iron supplements if this is what you have. I strongly recommend reading that article. So if your blood iron level is low but your ferritin is normal or high (maybe 75 or higher), you may have ACD and should not take iron supplements. I'd recommend seeing your doctor to discuss this possibility. As the article makes clear, there is no treatment for ACD other than to address the underlying cause. That would be some underlying condition that's causing chronic inflammation.

[amiller2121 in reply to rls_optimist]

I agree - no supplementary iron. I also agree that my doctor should investigate but the issue is that she's lost because she's not seeing anything on the bloodwork to indicate I'm not healthy (the iron level I mentioned above actually still fits within her range). It's frustrating that conventional medicine is so reliant on bloodwork and not the patients symptoms. Maybe time for a new doctor.