how low was everyone's serum ferritin level in their iron panels?

[Grandmawithwonkylegs]

I've just had mine done again results (should be in later this week)but last time it was tested was 2years ago and was a meagre 42 ......... feeling worse than last time and already on meds for RLS so absolutely dreading these results lol

[Dsw7]

My last 2 were both 32 despite taking iron supplements, got another full panel test on the 5th Sept, if poor again I will be pushing for an iron infusion.

[Joolsg]

I see you're on Pramipexole, Mirtazapine and high blood pressure tablets.What dose of Pramipexole are you on now?

The Mirtazapine and blood pressure tablets will worsen RLS so you should see your doctor to discuss in detail. Safe anti depressants are trazodone and wellbutrin. High blood pressure might be reduced by other methods if it isn't genetic.

Augmentation ( increase in severity of RLS) can be reduced by ensuring serum ferritin is above 100, preferably 200 and this can be achieved more quickly with an Injectafer infusion. Several UK hospitals will now do this for RLS patients.

My ferritin was around 65 and I managed to increase it slowly over 18 months to 144. I augmented on Ropinirole in 2016 and had an iron infusion in 2019 which raised ferritin to 785 but I'm in the 20% that do not respond to infusions or raising ferritin.

[ChrisColumbus]

My last figure was 172, the lowest figure that I've recorded and the only one under 200: it WAS done unusually early in the day, but I've certainly seen a gradual decline over the last 10 years (I'm now 69).

All best wishes to you, and here's hoping that you find that iron supplementation will help you as it reputedly does the majority.

However as Jools writes a 'high' ferritin figure is not necessarily a palliative for RLS. While iron is most commonly associated with RLS, for many diet and medication (for other conditions) are major factors. My (comparatively) minor symptoms are probably because I've been back on (temporarily - I'm just coming off) a statin, and haven't been careful enough with diet. Usually magnesium rather than iron controls my RLS, but the statin overrides.

[DicCarlson]

49 raging RLS! Supplements - helped with the severe symptoms almost immediately.

[Zedz]

My lowest 14. With iron infusions I keep above 100-120 or symptoms worsen. Took me years to get the infusions until finally referred to a kick ass hematologist.

[Typicallygaslit]

Mine was 52 but that was non fasting. GP was unfazed, told me it’s normal blabla. Been trying to get it up for two months… RLS seemed a bit better for a while, now it’s back to bad.

[Lilcatfeet]

Mine was 25 and it was grim! Taking gentle iron 28 every other night and it’s up to 55 after 2 months. Not there yet but I feel an improvement already. My GP tried to put me on Mirapex, saying it was the drug of choice. I sent her the Mayo,algorithim but doubt she’s read it. Also true of my neurologist. Who has me on Neupro. I’m in Toronto. Anyone know of anyone specializing in RLS?This group is incredibly helpful and supportive.