Dear fellow sufferers in RLS hell.
My sleep medicine doctor suggested an iron infusion because my TSAT is 28,87% while my ferretin is 145,40ng/ml. I was taking iron supplement for 6 months before the test. I am not very knowledgeable about the difference between TSAT and ferritin. How high are the recommended levels for people with RLS? Which marker is more important for RLS?
Best
S
If the TSAT were below 20% that would be the most important but it is not. Anything between 20% and 45% is OK. Ferritin is the most important since your TSAT is OK. It should be above 100 which yours is. You can always continue to take iron to get it to 200 or 300 if you want. An iron infusion is certainly not needed but if you are still on pramipexole it will more quickly increase your ferritin to that which might help your withdrawal if you are withdrawing but if I remember correctly you went back on it and aren't withdrawing.
I am about 4 weeks off all medications and I suppose I am withdrawing as I don't recognize these symptoms from before. RLS cocktail with something that feels like bubbles in my left foot and cramps. Horrible, but not the worst I have experienced.
Hi! I would definitely recommend IV iron. The ferritin and TSAT are only surrogates to determine how much iron is in our brains. It's a guess. There's no way, short of a spinal tap, to know what's in our brains. I believe RLS symptoms come from lack of brain iron. My doc says he believes eventually IV iron will be recommended for anyone who has RLS symptoms and has ferritin below 300.
I received IV iron Dec 15, 2023, and it was well tolerated. About 8 weeks later, I started the wean off of pramipexole. The wean was hell, but my symptoms are manageable now. I attribute this to the IV iron. Good luck!
Thank you. That gives me hope.
Hi Sigurdur, Could you let us know how you feel if you do go for the IV iron infusion? Like you, my ferritin is fine--133--and my TSAT is above 20% (though it dropped from 29% to 22% last time). I hope it helps you.
So glad to hear you're doing much better now, Debra. Have you had to continue the IV iron? How often is it recommended for you?
Thanks for the info.
My first IV iron treatment was just 10 weeks ago, so I don't know how long it will last. I've read that if symptoms return, it's time to consider another one. Most reports I've read indicate 6 months to a year, but I don't know. So far, my symptoms are managed. They're not entirely gone but unlike before the IV iron, they are manageable.
It can take several weeks or even months for the iron from the IV to reach and replenish your brain. So be patient and have something to take to help until the IV iron works. For some people who have been on dopamine agonists a long time, IV iron doesn't work. Thankfully, I only took the dopamine agonist pramipexole for a year before weaning off of it. I knew it was a bad drug, and I wanted it out of my system. Sadly, I'm still struggling with the side effects of withdrawal from it.
I'm glad that your symptoms are manageable; that's great. I hope you continue to see regular improvement.
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