Restless Legs Syndrome (RLS) Discussion Board

Hello.

I've been diagnosed with low iron (ferritin 17) again. I know that low iron exacerbates the EKD, and I've read that people with EKD don't absorb iron as well in their brains.

The first time I was diagnosed with low iron (I think my ferritin was something like 5 then) I went through colonoscopy and a gazillion tests with no reason for it ever determined.

I'm just wondering if EKD alone could be chalked up as the cause that my body doesn't absorb and/or store iron properly?

Mark

From what I understand, one is not the cause of the other, rather they are symptoms of a root disease. Low iron levels can exacerbate EKD but raising iron levels usually will not "cure" a person. People with EKD often have trouble absorbing iron and their iron levels will drop much faster than a non-sufferer so there is definitely something weird going on with iron metabolism but it's sort of a chicken and egg thing. I expect one day that they will find out there is something wrong with XYZ system in our bodies that affects both dopamine production and iron metabolism.

After finding out that my ferritin levels are not very high (25) I have put myself on a high iron diet always taken with vitimin C for better absorption. I alternate between red meats & offal, (variety meats), oily fish, dark turkey or chicken meat plus dark vegetables and lentils. I've been doing this for 2 months. My doctor tells me it takes 3 months for any effect to take place. I have been sleeping a bit better lately but I can't be sure that it's due to the iron diet. I'll keep you in touch with how it goes. Does anyone know of any research into iron-rich diets and RLS?

Christina, I do not know of any studies.

My guess would be that it will take much longer than a few months using that method. It takes 6 -12 months for most of us to increase our ferritin taking 325 mg iron (65 elemental) 3 X a day. That's a lot more iron than you can get in your diet.

I went from 8 to 35 or so in several months - can't remember exactly, but at least 6, maybe a bit more. That was taking ferrous sulfate at least once a day and up to 3 times (when I'd remember), but usually twice. I can't take it with C, though, because I'm allergic to excess C (weird, I know). So, maybe it would have increased a bit faster without.

But, that's just my guess.

Thank you ViewsAskew for your comments. In 1995 I found that ferrous sulphate tablets, prescribed for something else, also magically rid me of my RLS symptoms. My rather incompetent doctor (I changed him afterwards), advised me there was no danger, so I continued to take the iron supplement over a 2 year period without realising the dangers. I developed a hiatus hernia and gastric reflux. It was only when I bought a computer with Internet in 1997 that I found information on the Web that excessive iron is detrimental to the gastric system. I stopped the tablets instantly and have been reluctant to ever start again, though I am convinced that low iron stores and low brain iron are a key factor in Ekbom's Disease. That is why I am trying an iron-rich diet, instead. I'll plod on with it - for months, for years, for ever, if necessary, to see if it has any effect. I'll let you know.

So sorry you went through that.

I don't mean to sound snarky, so hopefully this won't come across this way. And, I'm not you and I respect any decision you make. I couldn't help but think that you don't have to take them for a long period as you did before. You can take them for a month or two and then get a test to see where your ferritin is. If it's good, you can try using your diet alone to keep it there and see what happens.

Of course, just an idea.

My sleep doctor told me to not even bother trying to get iron from my food as I was obviously a poor absorber or my iron wouldn't be so low in the first place.

I get my iron levels tested every three months. Now that it is getting higher I skip a couple doses a week.

ViewsAskew and Chipmunk, thank you so much for your replies. What a great site this is! I think I will take your combined advice and take iron supplements for a while, under the supervision of my doctor and then get my ferritin levels tested fairly frequently, as you suggest, Chipmunk. Have you been able to achieve better sleep through this method? I am really worried that constant poor sleep is beginning to interfere with my immune system, (I'm 64). In the past week I have developed Shingles, which is a classic sign of a weakened body. Great, this Ekbom's Disease, isn't it?

Oh no! I'm so sorry you have shingles.

Supplementing with iron has helped, but mostly in the beginning when I went from crazy low to almost normal. What really seemed to help the most was the prescription vit d. You might see what your levels are. Mine were 22, I think, and that was too low.

Oh, so sorry about the Shingles.

In terms of the RLS/WED, the older research has suggested the following related to increasing iron:

20% have a remission of WED/RLS
40% have a reduction of symptoms
40% have no effect

So, 60% have fewer symptoms because of it. That seems worthwhile to me, but obviously some of this group will need additional help to completely resolve the WED/RLS.

Thank you Ann and Tracey for your replies and for the interesting statistics, Ann. There's definitely a connection between RLS and low iron, isn't there? - even though no-one quite understands what, yet. I have spoken to my doctor and she is going to start me on iron supplements at the end of the week. For now, she thinks I mostly need vitamins to get over the outbreak of Shingles. She’s going to put me on iron for 2 months and then check ferritin levels again – just as you suggested. My Vitamin D2/3 levels weren't too good at the last reading, either - 23.9 mg/l My doctor has given me Vitamin D3 but not D2, as, in another post, I read you found effective, Ann. Many thanks, once again.

The sort of understand the connection...just not completely.

Brain autopsies in people with WED show problems with iron. Cells are actually deformed in the substantia nigra because they don't have enough iron. That affects dopamine transport and uptake.

What they don't know is why - why does the iron deplete so quickly? why can't it cross the blood brain barrier? etc.

My doctor told me that D3 is metabolized into D2 so they are functionally the same thing.

xristina47 wrote:Thank you Ann and Tracey for your replies and for the interesting statistics, Ann. There's definitely a connection between RLS and low iron, isn't there? - even though no-one quite understands what, yet. I have spoken to my doctor and she is going to start me on iron supplements at the end of the week. For now, she thinks I mostly need vitamins to get over the outbreak of Shingles. She’s going to put me on iron for 2 months and then check ferritin levels again – just as you suggested. My Vitamin D2/3 levels weren't too good at the last reading, either - 23.9 mg/l My doctor has given me Vitamin D3 but not D2, as, in another post, I read you found effective, Ann. Many thanks, once again.

If I wrote D2 I was either sleepy or can't type (and both are possible!). I'm pretty sure that D3 is the one that was recommended in my research and I know it is the one that I am taking.

I just went and checked - yup, D3. So, forgive my typo or brain hiccup.

From Medscape:

"There are two types of vitamin D supplements available for over-the-counter purchase (vitamin D2 and vitamin D3). Vitamin D3 is the type that most experts believe should be utilized in clinical practice (Wolpowitz & Gilchrest, 2006). Vitamin D2 is also known as "ergocalciferol," and vitamin D3 is also known as "cholecalciferol." This is important for patients who have purchased a dietary supplement that does not indicate the specific type of vitamin D in the product by number but have listed the scientific name. Most experts now believe that the only form that should be purchased is vitamin D3. Vitamin D2 is also very acceptable, but in the author’s opinion, most individuals should switch to D3. There is a plethora of logical reasons for advocating the use of vitamin D3 over vitamin D2 dietary supplements (Wolpowitz, & Gilchrest, 2006), including:..."

http://www.medscape.com/viewarticle/589256_4

And, from the Vitamin D council:
"Although many doctors are still prescribing vitamin D2, vitamin D3 is the preferred form for treating deficiency and is what is recommended by the majority of the experts as well as the Vitamin D Council. "

Now that my ferritin is finally over 50, I only get symptoms maybe once a week. My new neurologist wants to get it higher, I forget how high he wants it, but the ferrous bisglycinate worked well for me (sulfate upset my stomach too much).