Restless Legs Syndrome (RLS) Discussion Board

I just got my lab results from the specialist I saw last week and my ferritin is 14 which I think is low but it says it's within the normal range of 9 to 243. The specialist has not suggested that I take any supplements to increase my ferritin. Do I need to pursue this matter further? Also, I am a frequent blood donor (like every 56 days) so should I stop giving blood all together? Thanks, as always, for any input!

I dare say Ferritin at 14 is within the 'normal' range tho with 'normal' covering such a broad spectrum I think its still quite low - even for folk without rls - albeit within the range.

However, when it comes to rls sufferers I believe that over 50 is the goal, and higher if possible.

Was the specialist that you saw last week an expert in rls?? i.e. is he aware of the importance of a higher ferritin level???

If it was me, I'd be seeking to pursue the mattter - possibly GP would help.

Have you read any of the books by Dr Buchfuhrer. (available on Amazon) They are full of relevant information which is easily read and understood.
At one appointment I marked appropriate passages in the book with yellow post-its and happily my doc took note of the content.

With regard to the possible effects being a blood donor - I don't know, perhaps another member can advise on this.

We're recommended to cease giving up our blood.

It is also fairly well established - but only among people experienced in treating RLS - that a ferritin level of 50 is the dire minimum for anyone with RLS. You should be taking supplements to raise it, and getting it re-checked every 3 months. Mine is going up very slowly! but apparently if you can get it up there, you'll be able to reduce meds. People who've been able to raise it by taking supplements have had that experience - posted on this forum somewhere. But many of us don't seem to absrob it well or something, and despite supplements it doesn;t rise very fast.

As PB said, get hold of a publication that says this, and say to your doctor "Look what I found, what do you think of this?".

I agree that 14 is pretty low, even if the experts say it's within the normal range. I am getting a second opinion about my RLS with a neurologist in January since the first Dr. I saw was a sleep disorders specialist. I will take some of the facts you mentioned out of the book and see what he says about adding iron supplements to my regimen. I know getting ferritin levels up is not always the answer but it sure would be nice to taper off my meds if upping my ferritin level would alleviate some of the symptoms.

On a positive note; I just switched to Mirapex a week ago and have been ENTIRELY free of symptoms for the last week. It's almost too good to be true but for now, at least, this one drug is working for me. I started with Requip but had to switch as it was making me pretty nauseous. So far, I've had no side effects with Mirapex. I'll keep my fingers crossed that I don't build up a tolerance to it but I know that can easily happen.

As always, thanks for any input!

That's great that the Mirapex is working well for you. Just do be careful to not increase beyond what you need, because you are at high risk for augmentation because of your low ferritin.

Mellym - the research is showing, as Susan noted, that people with ferritin lower than 50 are at a much higher risk of having the Mirapex or Requip cause problems in the form of augmentation. This means the RLS gets worse because of the drug - it starts earlier or is more intense or last longer.

Regardless of what the sleep doc says, you can take iron supplements on your own and I highly encourage you to do so. It will take many months to increase the ferritin, so you don't have to worry about over doing it.

3 tabs a day of 65 mg of elemental iron, which is same as 3 tabs of 325 mg ferrous sulfate. It comes in several forms - if you can tolerate it, take it on an empty stomach with vitamin C or take it with a citrus juice. That will increase it the most quickly.

I have been thinking about going ahead and taking iron supplements before I see the Dr. in Jan. to get his opinion. This is a rather delicate question but how do I handle the constipation that comes with taking that much iron? I have taken one tablet (325 mg) a day in the past to try to get my iron up to give blood and it really did a number on my stomach. I can't imagine what 3 tablets a day will do to me! I do worry about augmentation, though, so it sounds like it's worth a try.

Every morning (because that's the only time of day I can manage to do anything at the same time every day) I force myself to consume 1/4 cup minute oats + 1/4 cup bran (cooking kind, not cereal), mixed with water to make it gooey and nuke for 2 minutes, then mix in some raisins and nuts and either yogurt or milk to make it palatable. And I make sure I drink at least a whole glass of water at the same time. And when things seem like they might be bunging up anyway, I eat a tablespoon of flax seed oil GROSS!! or 2 tbsp of lactulose which is a prescription syrup that does the same thing but isn't quite as revolting.

It's not for everyone, but the point was to make myself eat the bran every day, and that's the way I can force myself to do it.

I am going to be switching to blended smoothies in the morning, which is more complicated but I might be able to handle it. I'll be adding flax seeds to the smoothie because they're really good for you. I don't know if they work like flax seed oil as a laxative, but if they do, I might be able to cut down on or eliminate the bran.

I'm a big fan of Fiber One bars.

I've heard that forms other than ferrous sulfate are less constipating. I'm taking ferrous gluconate I think...don't have the bottle handy.

I started the ferrous sulfate yesterday (.325 x 3) so I guess I'll see how it goes. I will try to eat more fruit and I'm also trying a stool softener (without the laxative) which I would imagine will help but I wonder if I can take it on a long term basis? Guess I will start adding bran to my diet again