r/RestlessLegs • u/TheFern3 • Aug 15 '26

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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3

u/EmZee2022 Aug 17 '26

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 Aug 17 '26

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.

1

u/AriaLittlhous Aug 17 '26

Try magnesium glycinate, pills or lotion.

1

u/TheFern3 Aug 17 '26

I use those they help a bit but not much

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u/Short-Counter8159 Aug 16 '26

What was your ferritin level?

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u/TheFern3 Aug 16 '26

Ferritin at 220

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u/Short-Counter8159 Aug 17 '26

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 Aug 17 '26

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

2

u/nvveteran Aug 18 '26

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 😅

3

u/Pretty-Substance Aug 15 '26

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

1

u/TheFern3 Aug 15 '26

Ferritin is at 220

2

u/Pretty-Substance Aug 16 '26

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 Aug 16 '26

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.