Restless Legs Syndrome (RLS) Discussion Board

Approximately a year ago (March 2024), I had an Iron Infusion which brought my Ferritin level up to 221 and my saturation was 35.
Fast forward to March 2025. I recently had bloodwork done and noticed that my Ferritin had fallen to 128 and the saturation has remained constant. Is the drop in Ferritin concerning? My reason for asking is that my RLS symptoms seem to had gotten worse over the past few months. What about the saturation, should it be higher?
Thanks in advance.

Your ferritin level dropping this long after your first infusion is not unusual, that is why your doctor asks for periodic checks. An increase in your symptoms with this normal decline is also not unusual. Some people require "regular" repeat infusions to maintain their ferritin above whatever their personal minimum is for maintenance of they symptoms.

As for ferritin vs iron saturation, ferritin is a measure of the amount of iron stored throughout the body, which includes iron in the liver, spleen and bone marrow as well as the blood. Iron saturation is a calculated number (iron binding capacity vs serum iron) that indicates the amount of iron bound to transferrin protein that is floating around in the blood stream. To use a financial analogy, ferritin is your net worth (stocks/bonds, checking, savings, cash) and iron saturation is your readily available cash (checking, savings and cash). When you get an infusion, some of that iron goes into your "stocks and bonds" and this is what helps both maintain your iron saturation levels over time as well as minimize your symptoms. If your ferritin drops too low, you don't have any iron "assets" to draw from so that the transferrin/iron combination as measured by iron saturation can transport iron to make a "deposit" into your brain.

Your ferritin level dropping this long after your first infusion is not unusual, that is why your doctor asks for periodic checks. An increase in your symptoms with this normal decline is also not unusual. Some people require "regular" repeat infusions to maintain their ferritin above whatever their personal minimum is for maintenance of they symptoms.

As for ferritin vs iron saturation, ferritin is a measure of the amount of iron stored throughout the body, which includes iron in the liver, spleen and bone marrow as well as the blood. Iron saturation is a calculated number (iron binding capacity vs serum iron) that indicates the amount of iron bound to transferrin protein that is floating around in the blood stream. To use a financial analogy, ferritin is your net worth (stocks/bonds, checking, savings, cash) and iron saturation is your readily available cash (checking, savings and cash). When you get an infusion, some of that iron goes into your "stocks and bonds" and this is what helps both maintain your iron saturation levels over time as well as minimize your symptoms. If your ferritin drops too low, you don't have any iron "assets" to draw from so that the transferrin/iron combination as measured by iron saturation can transport iron to make a "deposit" into your brain.

I am sure that several of our members who have received multiple iron infusions will be happy to share their experiences. Unfortunately, I do not benefit from infusions, so I haven't had any.

Hi Rustmith for the detail explanation and analogy. It's very helpful. I'll continue to keep an eye on my Ferritin level and if it falls well below 100 then I'll look into another infusion.

Lately (in the past several months), I've noticed a slight headache or intense brain fog at the onset of symptoms and when my Oxycodone starts to wear off in the middle of the night. This is such an odd condition to deal with and it appears that each of us are unique in terms of symptoms and responses to the available treatment options.

Thanks again!!!

Trophyman wrote: Sun Mar 23, 2025 4:31 pm Hi Rustmith for the detail explanation and analogy. It's very helpful. I'll continue to keep an eye on my Ferritin level and if it falls well below 100 then I'll look into another infusion.

Lately (in the past several months), I've noticed a slight headache or intense brain fog at the onset of symptoms and when my Oxycodone starts to wear off in the middle of the night. This is such an odd condition to deal with and it appears that each of us are unique in terms of symptoms and responses to the available treatment options.

Thanks again!!!

Depending on how complicated it is for you to get an infusion, you might want to start now. Your ferritin is already falling, you already have symptoms worsening. It takes a few weeks for the infusion to kick in (at least, for me it did). Perhaps contact whoever recommended or authorized your infusion the first time and see if that person thinks it's time for another. As Steve said, infusions typically have to be done every 6-12 months. iirc, the interval tends to increase with each infusion, until some people don't seem to need them anymore.