High Ferritin Levels: How can I lower my levels?

High ferratin levels are one indication of hemochromatosis, the other is to look at your iron saturation %, if it is above 50% you probably have two genes, thanks mom and dad. A DNA test is the only way to firmly establish that you have two mutated genes. It is not true that being a blood donor, your blood will be discarded, just tell the blood bank. They were glade to see me coming, would seperare my donation into smaller containers to use for infants needing more iron. I started being a donor in 1975 and donated every other month untill 2015, am now 93 years old. I don't seem to accumulate iron anymore.

I have to go to a hemototlogist for high ferratin. I have blood work done every four months. I do hav hemochromatosis.

No medication but a strict diet is necessary to keep the ferratin low. NO red meat for sure and many other things like no leafy green vegetables. If the ferratin level becomes to high they have to do a phlemobotomy and I hate that because in my case it hurts. So I sticr rigidly to the diet. You really should go to a hemotologist and get the diet.

I donate blood to lower my ferritin level every few months. My hematologist says to do that so my blood can be used, if they took it they toss it. I have been tested 3 times for hemochromatosis, all negative, over 10 years. Though, my doctor thinks they are missing something and I could in fact have a form of hemochromatosis that they don't yet test for. He did mention at the hight of covid that he saw infected people with VERY high ferritin levels, and after they got better their ferritin levels dropped back to normal.

Thanks for the reply.
The doctor is concerned about the levels. She has been on a treatment for over four years and the remain high. The doctor is a hematologist; I think it is first rodeo.

Thanks for the feedback.
My wife also gets blood transfusions to maintain her hemoglobin levels. We have discussed this method with doctor but no joy as he is opposed.

The easiest treatment for high ferritin is donating blood (it helps drain the iron from organs and blood). If she hasn't been tested for hemochromatosis, this genetic test should have been done by her doctor. She could still get blood draws, but it wouldn't be used in donations. Once I donated a few times, my ferritin levels came down and stayed there.

Elevated ferritin over time can result in organ damage. Best to (1) determine why one has elevated ferritin, if due only to covid or to new meds that are metabolized by the liver, hemochromatosis (a genetic test), or other; (2) if due to meds, try to switch to ones that are easier to metabolize; (3) either way, the easiest way to lower ferritin levels is by donating blood. You will need the hemochromatosis test before you can donate; otherwise you can have the blood draw but it will be to lower ferritin by removing red (iron) blood cells. In my case, I switched meds 13 years ago after elevated ferritin, and donated blood a few times and the levels never went back up. https://pmc.ncbi.nlm.nih.gov/articles/PMC10060024/

Hello @earl1959, I moved your post and to this existing discussion that you may find helpful to connect with others along with @kayabbott, like @frank0508 @lamorderd @alive, @togram and several others who have had high ferritin levels and for useful tips.

"High Ferritin Levels: How can I lower my levels?"
- https://connect.mayoclinic.org/discussion/high-ferritin-levels/

@earl1959, when it was discovered that your wife had high levels of ferritin, did her provider have any pointers or concerns with the levels?

My wife has a very high Ferritin level, last measure was 3999 ug /L, this has been going on since 2021 and the start in value of 385 ug/L is a distant memory. Wondering if this is rare and what can be done to fix this?

Have you been tested for hemachromotosis?