Restless Legs Syndrome (RLS) Discussion Board

Started on oral iron (2x65 plus C on empty stomach) six months ago, which increased my ferritin from 64 to 191. They also measured % saturation at 49.

Reading in the foundation medical bulletin “supplemental iron should not be continued if %sat is >45 given the risks of hemochromatosis”.

Should I be worried at 49%?
Should I stop taking oral iron?
Should I reduce from 2x65 to 1x65? Or only take every other day?

What symptoms should I look for as signs of hemochromatosis?

The most outward sign of hemachromatosis is a change of skin color to a bronze or grey color. You can also experience weight loss, lost of body hair, reduced sex drive, lack of energy, abdominal pain, heart flutters, memory fog and overall weakness.

If it is any help, my ferritin level has been as high as 650 and it has been over 400 for several years now. I haven't taken an iron supplement in probably three years and did not make any changes to my diet, yet my ferritin level has not gone down. My doctors are all aware of this high level and are not concerned, yet they also keep an eye to make certain that it doesn't go any higher (and that my skin color remains normal).

Well, if the iron tablets have not improved your RLS, the simplest action is just stop the iron. In terms of organ damage from excessive iron, the first to be detectable is liver disease, and in studies of hemochromatosis, liver disease almost never occurs unless the ferritin is above 1000 for a prolonged period. My ferritin a couple of months after IV Iron was over 700 and not a cause for concern. Ferritin is considered a better test of iron overload than transferrin saturation.

If the iron has clearly improved your RLS, one option is continue the iron and check your ferritin and transferrin saturation every 6 months or so, and if there is a steady increase, then consider cutting back on the iron tablets.

Likely your slightly high saturation is just an anomaly. Have you had more than one transferrin saturation level above 45%?

Also, be sure you are getting the transferrin saturation, NOT the iron saturation commonly reported on an iron panel. They are not the same.

Holland- have only had one test that measured %saturation. The printout says “% saturation” and nothing more. It is listed beneath the “iron binding capacity” (358), and is not next to the ferritin number, so I suspect it is not the “transferrin saturation” that we are looking at. I suspect I am looking at apples and oranges, darn it.

Yup, if a "% saturation" is listed on a page with iron or iron binding capcity or TIBC, then it is the % iron saturation, not the % transferrin saturation.