Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Ferritin and Sat % goals

jbelar
jbelar
I just started treatment yesterday. I am scheduled for monthly phlebotomies. I messaged my doc to see what our treatment goal was and told her I have read, consistenly, to keep ferritin between 25 and 75 ng/ml and sat % below 45%. She came back and said, "The general goals for treatment are to have the TS% be below 50% and the ferritin be below 100. Some of the numbers you have been reading may be with labs with different calibrations."

Any feedback on this? I told replied and said I would like to be at 75 for ferritin and at least 45% for TS%. Does that sound safe?
mike1126
mike1126
i know for men anything under 300 ferritin is considered normal. im not sure if its the same for women. some doctors have told me to keep it under 50 and some around 75. i personally have tried to keep it around 50, ive been deironed and im now trying to find my "maintenance" phase requirements to keep me at 50
mike1126
mike1126
one more little point. i was getting frequent headaches the other month and found out it was because my ferritin was around 20, so i let off on the phlebs to build up some iron and the headache issue went away. so you also have to be cautious of going too low.
FeralFerritin
FeralFerritin
Quote: "Some of the numbers you have been reading may be with labs with different calibrations."

Yes, it seems like there is no proper industry standard for ferritin, you cannot compare one result directly with another. I had two tests when first diagnosed both came in close to 2000, but the hospital that treats me threw them away and used their machine which said 2300.

She is right different labs use different ranges as "normal" it would depend on the range of people they sampled. My hospital labs use the upper "normal" ferritin limit for men of 400, most western countries use 300 or less, but Australia's may be higher since we eat so much red meat, or did they just use a different machine? The range that humans bodies would have been used to over millennia would probably have been much lower had they measured it, these results would then have been considered "normal". Of course they may have been lower than is optimal, given "poor" diets, who knows.

Look at this study in Malaysia, it shows marked differences between different races. Which is best? Should we go by race? Or is it just the different foods they eat which results in different levels?
http://www.ncbi.nlm.nih.gov/pubmed/7403958

Point is they are only a guide and should be used as such. Many people on this board say they need to be below TF 50, but lots don't. Just see how you feel when your TF falls below 100, if you still not 100% then set the bar lower.

I think the upper limit for women's TS of 45% is the more common level, but again it varies. See what level you feel good on.

Also ferritin varies with age, especially for premenopausal women, I think the "normal" max ferritin level for them is normally around 200.