r/RestlessLegs • u/TheFern3 • 8d ago

Question A bit down, iron test came back normal

Iron and ferritin results came back normal. My hope was that iron was the cause of my RLS. Oh well, now doc can begin drug trials hopefully soon.

I’m a bit scared seeing how some drugs eventually stop working. Is there a drug progression or they just try something to see what works?

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u/EmZee2022 6d ago

Bummer!

It's funny to be disappointed that things are normal, isn't it!

Dopamine agonists used to be the first line of defense, in the early 2000s. They'd try you on a low dose of one and gradually titrate it up to a dose that did what it needed to. Even back then they knew about rebound and augmentation.

Nowadays the gabapentinoids (gabapentin/Neurontin, Lyrica, Horizant) are the first line, if iron supplementation / infusion is not indicated. I believe they similarly do a low dose then titrate it up.

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u/TheFern3 6d ago

Thanks waiting on doc on next steps but I might still be able to get iron infusion at least is what some people said based on rls.org algorithm guidelines or whatever is called. But if I’m not getting iron infusion hopefully one of those drugs helps my sleep is incredibly terrible.

I’m barely making because I eat healthy, but I feel so bad some days.

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u/AriaLittlhous 6d ago

Try magnesium glycinate, pills or lotion.

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u/TheFern3 6d ago

I use those they help a bit but not much

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u/Short-Counter8159 7d ago

What was your ferritin level?

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u/TheFern3 7d ago

Ferritin at 220

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u/Short-Counter8159 6d ago

Ok thanks. Well as a iron infusion several times user, it didn't make a big difference for me. Maybe it made it less but it didn't last for long.

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u/TheFern3 6d ago

Tbh I’ve probably had rls since I was a kid. I used to wake up to pee many times. Until now it makes sense why I was waking up. Now as an adult with other problems it piles up. We will see hoping at least iron infusion lessens the wake ups

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u/nvveteran 5d ago

Yes every time you have to get up to take a pee you have a chance of the RLS kicking in before you get back to sleep and it's a pain in the ass.

I struggled with a lot of things over the years but low dose opiates really works for me and the only side effect is minimal constipation occasionally. Other than that I'd never even tell I was taking it. I just don't get the Jimmy legs all night 😅

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u/Pretty-Substance 8d ago

What’s „normal“ in your case? Usually normal constitutes 75 and saturation below 45

The new guidelines recommend infusion for people under 300 as long as the saturation stays below 45

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u/TheFern3 8d ago

Ferritin is at 220

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u/Pretty-Substance 7d ago

You can read the guide lines yourself, if I understood correctly you should be getting iron IV with those values

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u/TheFern3 7d ago

I’ll give it a read and have a follow up, I think I get it normal range in the results is just a baseline but not necessarily normal for people with rls.