Restless Legs Syndrome (RLS) Discussion Board

I finally had my blood ferritin level checked. My results are:

Ferritin
45 ng/mL

Iron Level
134 ug/dL

Vitamin B12 Level
666 pg/mL


I have yet to revisit my neurologist. I’m wondering what I can expect in terms of iron therapy. It appears that I will qualify.

I've been taking 2mg of ropinerol for over 10 years.

Michael

Welcome to the board Michael.

Normally, the first recommendation will be to see if you can get your ferritin levels up by taking an iron supplement. This works for some, but not for others. Your doctor may recommend taking a 365mg iron sulfate tablet once a day. To get the best benefit from this, it should be taken with a vitamin C to insure proper acidity and it should be taken on an empty stomach. The empty stomach part causes some people problems because the iron can cause an upset stomach. The iron can also lead to constipation for some. There are other forms of iron available, but these are more expensive and are not always as well adsorbed and so might not be as effective.

If you cannot get your iron up with oral supplements, then the next step may be an iron infusion, but you will probably need to try the oral supplements for at least six months before your doctor would consider that step.

Thank you. Hopefully the iron supplement will work and I'll have minimal side effects.

How soon do the iron supplements take effect? In other words, how soon do the iron supplements raise one's blood ferritin, and how soon does the rise in blood ferritin affect (improve) RLS?

It can take a few months for your ferritin levels to increase when using oral supplements. Therefore, if you are going to see any improvement, it is not going to be immediate, but will occur gradually over time. On the other hand, the infusions increase your levels almost immediately.

I recently saw my doctor for my annual checkup. He articulated what many of us here have thought and what some studies seem to be finding - that there is not one level that works for all of us. For some people, 75 is enough and for others, maybe 100. But, others require 150, and yet others, 225.

It's a strange situation - because whatever our serum ferritin is has little relationship to how much iron is actually in our brains. For some of us, the transfer must be easier in some way.

You'd have to measure the ferritin in the CFS, I think, to get a true indication of how much is in the brain. But, I am not really excited to have a lumbar puncture to figure this out! And, I doubt they even know, yet, what it should be.

For now, we just have to try iron - orally then by infusion - to see what happens. The good news is that it does help a lot of us - even though only a small percentage of us find all symptoms are gone, many of us find that the symptoms are reduced.

Regarding how long it takes for oral iron to have an effect on WED symptoms, I have personal experience with rather short as well as longish durations of time. Hopefully this and the other answers will give you an idea of the range of responses your body might have. My initial introduction to iron, as a low daily dose of ferrous gluconate, was ineffective at making my symptoms better (though it may have helped avoid an increase).

I switched to ferrous sulfate and upped the dose to two 325-mg pills daily. Within 2 or 3 weeks of upping the dose, I noticed a decrease in symptoms. Thinking it may have been coincidence, I dropped to one daily pill a few months later. Within one week, the symptoms got worse. I returned to 2 pills daily and within one week the symptoms got better. This I repeated twice more over the years before I accepted that it was real.

Recently, after not dicking with my iron dose for about 3 years, I dropped from two to one pill a day. I had my ferritin tested just before I dropped the dose, but don't have the results yet. I had wanted to test again if my symptoms got worse, before I added any iron back in. When nothing had happend after one and then two weeks, I decided that my body had healed in some respect and I should keep the lower dose of iron.

But after 5 weeks my symptoms got significantly worse over the span of a few days. Because I had come to the wrong conclusion about the iron, I hadn't kept it in mind as a possible cause, so I searched for other possible causes for a couple of weeks before I realized it might be the iron. I held out for another week, wanting that ferritin test to see how far my ferritin drops in that amount of time, but I Had been almost useless at work for 3 weeks, and things had escalated so badly that the torture got me out of bed long before I'd slept enough; kept after me all day long, preventing me from napping and fracturing my mind so that it was impossible to focus on work; and finally at the end of the day refused to leave and let me sleep for longer than 10 or 20 minutes at a time.

I couldn't take it, I don't want to get fired for being ineffectual. So I returned to iron by taking 4 pills that first day and 3 pills the next day (today). AFter the third pill the symptoms dulled. I slept. I took the fourth during one of my wakeups, which were less. Today - the 3-pill day, only the second day of increased iron - I was able to work effectively all day. I am almost normal again. I can tell I will be able to sleep. My daytime symptoms were minimal.

This is a pretty fast response to the iron. It used to take a week for increased iron to improve symptoms, after decreased iron took a week to make them worse. I was ready to have to wait 5 weeks for improvement, since it took 5 weeks to deteriorate! But maybe because I jacked up the dose, the effect was felt the same day.

Caveat: it's actually too soon to be sure the improvement was due to the iron. I normally would wait before posting. But this topic called to me So I will monitor myself and report back if symptoms deteriorate while I'm still on the higher dose of iron.

There was someone on here a few months ago who claimed she felt symptoms drop within hours of taking oral iron, so she used it on an as-needed basis. She was misinformed and unbelievable in many ways, so maybe we have to take the claim with skepticism, but it's intriguing nonetheless, especially in conjunction with my recent experienace.

I do have a SIL who uses iron and swears it helps her immediately. I wonder if that isn't some specific variant. Everyone with ferritin lower than 100, in my opinion, should try it and see what happens.

Everyone with ferritin lower than 100, in my opinion, should try it and see what happens.

I agree.
3 iron again today and still doing well.

If you take thyroid medicine, don't take iron without consulting your GP. It interferes with the thyroid meds and they will have to be adjusted.

I'm wondering if the type of iron is important for symptom reduction? I've never considered this before reading Badnights reporting that Ferrous Sulfate made a difference for her. I have only used Iron Bisglycinate (50 mg elemental iron) and while my ferritin level has risen from 33 to 74 in 10 weeks, my symptoms have not improved. Should I change my type of iron?

Badnights can weigh in on what she meant. I interpreted her to mean that she had more luck with getting her numbers to rise with sulfate, rather than it better helped her symptoms.

Iron doesn't work for everyone, nor does taking it mean that it actually gets to our brains, unfortuantely. Also, you very could need it to be much higher to help. I need mine over 200 to do any good - and can only get it there by infusion.

Why do the doctors tell us not to take more than one pill and there is lots of stuff online that says the same?

Wantok, I've only seen a recommendation of 1 iron pill daily on supplement bottles with lots of warnings that iron is dangerous. I'm new to iron and my naturopath prescribed me 2 25mg Bisglycinate Iron at twice a day. Recently she upped that to 3 pills twice a day. At first I was nervous to take so much iron...is that what you are concerned about?

wantok wrote:Why do the doctors tell us not to take more than one pill and there is lots of stuff online that says the same?

An RLS doc would not say that. He or she would say test your iron and if below 100, would tell you to take 3 tabs of 65 elemental iron per day, with an acid, such as OJ.

But, if a doctor - or the company selling the iron - doesn't always know your ferritin. If you take too much, you can get hemachromatosis, which is a very dangerous and deadly condition. So, they recommend less.