Iron levels

[Embroiderer]

Could I ask for a reference for the advice on ferritin levels? I've just been looking at the Mayo Clinic algorithm of July 2021 and they suggest that for serum ferritin concentrations equal to or less than 75 μg/L , iron therapy should be started. But I think I've read posts in this forum suggesting a higher baseline should be aimed for. Would be very grateful if someone could give me a reference for this advice.

[ChrisColumbus]

The Mayo algorithm says that if your ferritin is equal to or under 75 you should raise it, but it doesn't really tell you what to raise it to.

Elsewhere, Mayo says that the 'normal range is for men, 24 to 336 micrograms per liter, for women, 11 to 307 micrograms per liter'

mayoclinic.org/tests-proced...

Other labs and bodies give alternative 'normal' figures, with e.g. the Cleveland Clinic stating 'For people assigned female at birth: 14.7 to 205.1 nanograms per milliliter (ng/mL); For people assigned male at birth: 30.3 to 565.7 ng/mL.'

my.clevelandclinic.org/heal...

(I don't know why we can't standardise on either micrograms/litre or nanograms/millilitre... They come to the same thing of course but.. )

The experience of RLS sufferers on here over years is that the lower end of 'normal' is inadequate, and that ferritin levels over 100 reduces symptoms for the majority, with 200 being even better. You'll note that these are well within normal ranges.

[SueJohnson]

If you look at the Mayo article right after it mentions under 75 it says "Consider intravenous administration of iron if transferrin saturation is <45% and (1) serum ferritin concentration is <100 "

[ChrisColumbus in reply to SueJohnson]

I've read somewhere on here, from someone who questioned why the algorithm doesn't clearly specify a target above 100, that Dr B said that because the algorithm had to be agreed by a panel of authors with differing views compromises had to be made. I've not seen proof of this though!

[Munroist in reply to ChrisColumbus]

Hi ChrisColumbus, I think it was my post you are remembering. I asked Dr Buchfuhrer some time ago about the ferritin and TSAT levels required for an iron infusion being recommended and he said:

"The value of 100 for ferritin came from the consensus article on iron therapy for RLS (attached). Some of the experts wanted a much lower level (50-75) while others wanted a much higher level (150-200). Like any consensus article, compromises are made and experts meet in the middle. 

What really happens is that we use the blood levels of iron and ferritin as a surrogate marker for how much iron is in the brain. This does always work very well as blood values may not reflect brain iron/ferritin levels. We would need a brain biopsy (this will never be done of course) to actually determine how much iron is actually in the brain. 

I have patients who do not get enough iron in the brain unless their serum (blood) ferritin levels are greater then 100, 180 and even as high as 230. We can only determine this value by infusing iron then checking serum ferritin levels when patients start complaining about increased RLS symptoms (then seeing that another iron infusion resolves the symptoms). 

Some experts worry about iron overload which accounts for the caution and the lower recommended doses. We often get ferritin levels as high as 400-500 without such issues. It is very difficult to raise iron levels sufficiently to dramatically improve RLS symptoms. 

The other concern is that insurance companies typically will not cover iron infusions with ferritin levels above 50 (some have even lower limits and will only approve an infusion after showing that several months of oral therapy is not helpful). It is easier to get insurance coverage for a repeat infusion once an initial one has been approved for very low ferritin levels."

This pretty much ties in with subsequent comments which indicate that levels in the range 200 - 300 are not considered a problem

[SueJohnson]

It also says " Follow-up ferritin determinations are needed, initially after 3 to 4 months and then every 3 to 6 months until the serum ferritin level is greater than 100 μg/L."

[ChrisColumbus in reply to SueJohnson]

And goes on to say "treatment should recommence if RLS worsens unless serum ferritin concentration is 300 μg/L or higher, the usually accepted safe upper limit."

[ChrisColumbus]

Supporting aiming to get ferritin levels towards 200 if possible, the following 2018 article states:

"if serum ferritin values could be increased to more than 200 μg/l in RLS patients, iron concentrations in the brain might reach levels seen in normal controls"

sciencedirect.com/science/a...

[Embroiderer in reply to ChrisColumbus]

Thank you for that info, will keep taking the tablets!

[Madlegs1]

However-- raising iron levels tends to benefit only about 50#%of sufferers.

So don't mortgage the dog kennel!😝

[Embroiderer in reply to Madlegs1]

I don’t eat meat so seems a good idea especially as my ferritin was at the lower limit of ‘normal’ anyway.

[DicCarlson]

More info on iron tests and results...

bloodtestsresults.com/iron-...

[Kakally]

Maybe checkout this letter to the Journal of Sleep Disorders and Management in 2023?

It discusses ‘The need to discuss an evidence-based limit value for serum ferritin in the use of intravenous iron for Restless Legs Syndrome’

The point is, EVIDENCE BASED and not just consensus of opinion of experts .

Yes only ~60% helped with iron but certainly worth finding out as quickly as possible if we are in that 60% or not. So, if not, you can then largely forget iron and get on with the best other choices available

All the best to you and all of us 🤗

[Embroiderer in reply to Kakally]

Thank you Kakally

[Rwall]

All I can attest to is that my ferritin level is now up to 300 and I finally have some easing of symptoms, and that's with my regimen of meds! However, I noticed a huge difference with this. My doctor would not give the infusion, but with taking Slo-fe tablet every morning for a few months, my ferritin level has miraculously gotten to a level where I can tell a difference.

[Embroiderer in reply to Rwall]

Thank you Rwall

[Graham3196 in reply to Rwall]

I want to scream at doctors to learn more about diseases or recommend a specialist who might know more. Wouldn't your life have been so much better if you met a doctor who gave you an IV and shot your ferritin up to 400 so you felt better in a day or a few weeks!!!! Glad to hear that you have benefited from the tablets anyway. Now for a normal life!

[Rwall in reply to Graham3196]

I agree about wanting to yell at the doctors! I have not heard of anyone getting the infusion here in Georgia, U.S. and I don't think it's even on their radar, because when I asked about it, he looked at me like I had 3 heads! And he was the expert in the area!!!!! It has taken many months to get my levels up, and I still have the twitching, but it's so much better than it was.