Restless Legs Syndrome (RLS) Discussion Board

Last June, my ferritin was measured at 64, so I started taking oral iron, 2x65 plus C, on empty stomach, in August. Six months later, ferritin is at 191. (Fasting, no oral iron for >48 hrs before test) This sounds like a good improvement, getting me well above the “low zone”.

So, now what? I don’t know if this has made any difference at all in my symptoms. After much trial and error, I have settled in on .25 pramipexole as medication, and numerous other lifestyle tweaks (compression socks, limiting sitting, and increase mental stimulation) in the evening. So now I only have occasional mild symptoms, which I can deal with. I just think that my improvement is due to the meds and the lifestyle changes, with the ferritin being only a minor contributor here. Am I wrong?

Perhaps I was expecting increased ferritin levels to be the magical things that would eliminate symptoms and get me off medication. Was I really wrong here? Or is 191 ferritin just “ok” and not “great”?

Increasing ferritin levels helps many of us with RLS but not everyone. My ferritin started at 42 and I increased it to over 400 after several years of oral iron. But unfortunately, even though my iron has been over 400 for several years, it has not helped my RLS. This puts me in a distinct minority of RLS sufferers, but maybe you are another member of that minority.

On the other hand, glad to hear that your lifestyle changes have reduced your RLS to the point where you can deal with it. I hope that you remain that way for a long, long time.

meiatflask wrote:Last June, my ferritin was measured at 64, so I started taking oral iron,... just think that my improvement is due to the meds and the lifestyle changes, with the ferritin being only a minor contributor here. Am I wrong?

Perhaps I was expecting increased ferritin levels to be the magical things that would eliminate symptoms and get me off medication. Was I really wrong here? Or is 191 ferritin just “ok” and not “great”?

Ferritin is a test that gives an indication of the amount of iron in the BLOOD. RLS is caused by BID (Brain Iron Deficiency). The amount of iron in the blood is not much related to the Brain iron levels, due to the blood-brain barrier. Most RLS patients that improve with oral iron tablets start off with very low ferritin values (20 or so). Most RLS patients with "normal" ferritin levels do not have improved symptoms with oral iron. So in answer to your question, yes it is unlikely that your improvement was due to the iron tablets.

It is very difficult to get more iron into the brain. Only about 1/2 of RLS patients getting IV Iron (which puts MUCH more iron into the blood than iron tablets do) have improved symptoms. The reason for this is unknown, but current thought is that even IV Iron cannot overcome the blood-brain barrier in some people with RLS.

There is no real way of telling how much oral iron has improved your situation. You would have to stop oral iron and go back to your lower levels and only then you would really know.

I would just be happy with the way things are. I take a lot more medication than you do and still have way more trouble.

QyX- I like your “just be happy with the way things are”. I tend to overthink things, the engineer in me. So I will probably just keep taking the 2x65 until things get noticeably better/worse. No reason to rock the boat. Thanks.

I would agree with QyX, you are doing great. Small dose of meds and doing the right things to keep the Monster at bay. I'm taking your iron approach and have been for over a year. I did notice when I got lax in my routine the iron dropped significantly. I have scripts to have more iron testing before my next appointment but going to have blood work or even a doctors appointment will be on hold for a while.

Very nice to see a holistic view to managing RLS in the original post, well done on your success.

I wouldn't get too excited about iron, but worth a try like many things.

People with autism have low brain iron (BID), also high oxalates create low brain iron which include those prone to getting kidney stones, yet we don't see RLS en masse with these groups. People with haemochromatosis (high iron) aren't immune to RLS either.

This 'BID causes RLS' is another cult in RLS. Why do other things help RLS then? Iron levels would be very stable so symptoms should be relatively constant with slow changes, but as we all know symptoms can get worse quickly for sometimes no apparent reason; you can't have a rapid change in iron level to explain this.

Iron helps some, most likely due to impact on nerves and muscles. Lots of papers, mostly for heart health but all is relevant.

"There is evidence that iron plays a critical role in the optimal functioning of skeletal muscle tissue."

https://onlinelibrary.wiley.com/doi/ful ... 2/ejhf.467

XenMan wrote:Very nice to see a holistic view to managing RLS in the original post, well done on your success.

I wouldn't get too excited about iron, but worth a try like many things.

...This 'BID causes RLS' is another cult in RLS....

Well, I think calling "BID causes RLS" a cult is ignoring lots of evidence:

AFAIK all RLS experts (MDs and scientists) agree that BID is at least an important factor.
Autopsy studies of brains of dead RLS patients show low brain iron.
Imaging studies (functional MRI, etc) show low brain iron.
People with very low ferritin have worse RLS than those with normal blood iron.
Many RLS patients get better, some immensely better, with supplemental iron.
Iron deficient lab animals get RLS like symptoms that improve with iron replacement.

Is low brain iron the actual underlying cause of RLS? Well, probably not. There are approximately 20 genes known to be associated with RLS, and almost certainly, abnormal gene function underlies the lack of iron in the brain, perhaps by inadequate transport of iron across the blood-brain barrier.

Is low brain iron due to gene malfunction the whole story? Well, again, probably not. Iron metabolism is complex and ALL living cells, including plants require iron to function. Exactly how low brain iron causes the symptoms of RLS is similarly not known. So, yes, there is much we don't know about the causes of RLS, but calling the "BID causes RLS" a cult is not really accurate, nor helpful to those trying to understand the disease.

To add what Holland said, there is also quite a bit of research on iron deficient mice that ties BID to improper functioning of the adenosine receptors. Work at the NIH that was published at NIH two years ago then tied the problem with adenosine receptors to down regulation of both dopamine and glutamate receptors, which accounts for both the urge to move and the insomnia that are the key symptoms of RLS. This was the first time that iron, dopamine and glutamate had all been tied together. How important all this will turn out to be will depend upon further research as well as the results of a larger scale, double blind clinical trial that I believe is currently underway in Europe.

Is iron the answer, probably not. I have both high ferritin levels and severe RLS. But a very large number of people benefit immensely by increasing their iron levels and some moderate cases go into a sort of remission where the person can stop taking meds. RLS research is still very much in its infancy and a lot needs to be done, but BID appears to be a key piece to the puzzle so much so that there are also research projects that are looking at non-invasive ways to measure brain iron.

I'm not getting into a debate as this is my last post on this, but you state:

'RLS is caused by BID (Brain Iron Deficiency)'

It is a blanket statement that is unproven (as a cause), without a mechanism, excludes other factors and totally defies common sense. We are free to express our views as that; views. I agree low brain iron is seen in people with RLS, and iron helps symptoms for around 55%. These are two observations, and there really is nothing else other than this.

There are lots of 'what aboutisms' as conjecture, gurus as heroes and little regard for any other view. That is a cult. It is the same as pharmaceuticals, dopamine and endless other things for some people. Most people with RLS, and some common sense, will state that 'it could be this, it could be that, but this has worked for me and may not help others'. You don't have this.

If contrasting views are presented, a rational approach is to evaluate them and not just dig in deeper defensively for your position. I presented good reasons, which are ignored, as an alternative perspective. They are facts, but as for RLS they are still just a view for speculation.

A question for the frequent readers of this board, do you remember anyone saying that their RLS improved once they got their ferritin significantly higher than the 100 range (200+)? I've been taking iron for almost 2 years now in the form of either dessicated liver or supplemental iron, and over those 2 years have been able to raise my iron from 80 to 95 (by now it should be over 100 since the last test), and I have noticed absolutely no improvement whatsoever with my PLMD. So I'm now wondering if there's still any hope left for me, if I should keep up the iron.

thesleepless1 wrote: ↑

Mon Aug 24, 2020 5:09 pm

A question for the frequent readers of this board, do you remember anyone saying that their RLS improved once they got their ferritin significantly higher than the 100 range (200+)? I've been taking iron for almost 2 years now in the form of either dessicated liver or supplemental iron, and over those 2 years have been able to raise my iron from 80 to 95 (by now it should be over 100 since the last test), and I have noticed absolutely no improvement whatsoever with my PLMD. So I'm now wondering if there's still any hope left for me, if I should keep up the iron.

I need mine to be at least 200.

Replenishment of low brain iron unfortunately is far more complex than getting iron into the blood. There are six different intravenous iron preparations that are used and all of them increase ferritin tremendously and treat iron deficiency anemia effectively. Unfortunately most don't help much for RLS, injectafer has by far the most evidence available for treating RLS.

The reasons for some preparations working much better than others is unknown, however it is speculated that it has to do with how they interact with the blood-brain barrier and the transport of iron from the blood into the brain. There is not a magic number of blood ferritin that will help RLS patients. It is not simply a matter of getting the blood ferritin level high enough so that the iron seeps into the brain. Remember that there are some people with hemochromatosis that have RLS, even though their blood ferritin is over 1,000 at all times. Those people are known to have low brain iron.

A lack of response to oral iron has no bearing on whether a person will respond to intravenous iron. If your ferritin remains below a hundred you should get the tests done to see if you qualify for intravenous iron as that likely has a much better chance of helping you.

Most people with a ferritin significantly over a hundred have their ferritin increased as a result of chronic inflammation of one type or another. A normally functioning human almost never gets their ferritin over 100 because of the hepcidin control mechanism in the intestine that keeps excessive iron out of the blood.

After starting oral iron a few years ago (my ferratin on last blood test was 341 ug/L) my sleep gradually went from four hours each night to six most nights. This sleep is in three or four segments over 10 hours with walking, stretching, rubbing legs, reading and watching Netflix on my iPad, often while walking in between. Four hours was terrible but six is okay. Naturally I'd like more.
As well as the iron I take two x 60mg codeine tablets and .25mg ropinerole each night.

ViewsAskew wrote: ↑

Mon Aug 24, 2020 8:14 pm

I need mine to be at least 200.

Thanks for the responses, I guess I have a little bit of hope still.