Confused about iron infusion and low ferritin.

[Gibbel]

Am I reading it wrong when Dr. Winkelmann recommends infusion if ferritin is 50 – 75 mcg/L but iron tablets if ferritin is below 50 mcg/L or lower?

Gibbel

[ChrisColumbus]

Dr. Winkelman certainly felt in 2020 that oral iron was the more reliable treatment and recommended one tablet of 325 milligrams of ferrous sulfate once per day when the ferritin level is 50 mcg/L or lower, and an infusion when ferritin levels are higher.

health.harvard.edu/diseases...

However, in 2021 he was one of the experts who co-authored the revised Mayo Algorithm which says:

"Intravenous administration of iron should be first-line iron therapy if moderate to severe chronic persistent or refractory RLS is present and either serum ferritin concentration is between 76 μg/L and 100 μg/L or a more rapid response is desired than is possible with oral iron. (Intravenous administration of iron is recommended as first-line iron therapy if serum ferritin concentration is between 76μg/L and 100 μg/L because absorption of oral iron at these higher ferritin levels is likely to be minimal.) Intravenous iron therapy is also recommended if oral iron cannot be adequately absorbed because of disorders of the gastrointestinal system or bariatric surgery, oral iron is not tolerated, and RLS symptoms do not improve despite an adequate (3-month) trial of oral intake of iron. According to a consensus of RLS experts, the base requirement for any use of intravenous iron therapy in RLS is that the serum ferritin concentration should be less than 100 μg/L (and not affected by inflammation) and transferrin saturation less than 45%. All of the intravenous iron formulations that are currently FDA approved for treatment of iron deficiency anemia may be of value in treatment of RLS."

[Gibbel in reply to ChrisColumbus]

Thank you so much !

[Munroist in reply to ChrisColumbus]

There is a problem with this recommendation as I’ve mentioned before in that you can’t get an iron infusion if your ferritin is above 100 µg/L, but it’s well known that ferritin above 200 and even higher is preferable. After an infusion ferritin levels can safely reach 300-500 so it’s non-sensical to have no treatment options if your ferritin is just over 100. At this level oral supplementation starts to become less effective which leaves RLS sufferers with nothing. I emailed Dr Buchfuhrer about this a while ago and he agreed the limit was at best a compromise guideline and didn’t really make sense. As long as your TSAT is under 45% then you should be able to get an iron infusion with levels of ferritin higher than 100 µg/L.

[ChrisColumbus in reply to Munroist]

The Mayo Algorithm says further:

"If there has been an adequate response to an intravenous iron infusion but symptoms recur, repeated infusions can be given in at least 12-week intervals as long as serum ferritin concentration is below 300 μg/L and transferrin saturation is less than 45%."

Does this help?

[Munroist in reply to ChrisColumbus]

That does help, thank you, but seems at odds with the initial statement. It relies on you having had an infusion already to which you have responded positively but you might not be able to get the first infusion if you are over 100! Catch-22

[ChrisColumbus in reply to Munroist]

Indeed, somewhat illogical. And I had to go looking for it (I had a vague memory that I'd read it). But hopefully it gives some ammunition to argue for an infusion when ferritin is over 100 and one hasn't had an earlier infusion.

[ChrisColumbus in reply to Munroist]

Here in the UK in many areas the real problem is that you can't get an infusion at all unless you are diagnosed as anaemic: RLS doesn't count.

[Munroist in reply to ChrisColumbus]

Tell me about it!

[ChrisColumbus in reply to Munroist]

If only we had a National Health Service where the same treatment is available wherever you are...

[Danni54 in reply to Munroist]

Hi. Just to say that my Ferritin level was 35 and my Dr. and hospital refused infusion so I have been on iron Sulphate every other day for month's now and my Ferritin , at last count, was 75 but the medic's in Scotland don't appear to be interested in learning about RLS. I have tried to pass on information but they just get annoyed! What do I know? I'm not a medical person!! However, I have researched it and received more advice from people here than I have from any medical person. People here are more knowledgeable than any medical person that I have met. Thank you for your advice. I really appreciate it.

All the best,

Danni

[SueJohnson]

Actually it is usually recommended to take iron tablets if your ferritin is less than 75 and have an iron infusion if between 75 and 100 since iron isn't as well absorbed above 75.

[Gibbel in reply to SueJohnson]

Thank you so much !

[WideBody]

There are two numbers that are important ferritin is only one. Transferrin Saturation Percentage is considered as important if not more important. If TSP from a morning fasted full iron panel is under 20% then an infusion should be considered regardless of ferritin level. It would take a long time to get iron stores up at that level.

youtu.be/VVlQKOOrRVs?si=WTo...(Not working as expected?)

sciencedirect.com/science/a...

Look at section 8, it has a beautiful flowchart anyone can follow.

It’s important to remember, once supplements have been started, TSP will not be as reliable. TSP gets skewed by supplements.