High Ferritin Levels: How can I lower my levels?

@persimmons, are you still followed by the transplant team at Mayo Clinic AZ? You may wish to contact them with your concerns.

@JustinMcClanahan I am also glad I found this dialogue on high ferratin. I run at 1,200 to 1,000. Was at 1,600 while in dialysis 3 and 1/2 yrs. I was high ferratin even before dialysis. I received my kidney transplant w Mayo Clinic AZ 7/25/23. My ferratin runs at 1,000. I had my 1st pheb pull of 400 mL (was to be 500 mL but very slow veins/ hard stick) Pheb. pulls w UCSF are to be monthly. With my kidney transplant I didn't like that it dropped my Hemoglobin 2 pts from 14.9 feeling like gold the moment w transplant. I have put pheb pulls on pause bc I don’t like the hemoglobin drop on my kidney transplant. They tested way back and it's not generic. I got a second opinion at least liver dr brought up maybe something is causing the inflammation? MRI showed severe iron overload on speen, and mild on abdm.
Is a pheb pulls monthly the only way to deplete the ferratin? If I didn't have. a kidney transplant I wouldn't be so concerned w hemoglobin dropping 2-3 pts instantly from 14.9.
Is pheb pulls 500 mL for ever. I have low iron saturation and transferrin, Ferritin 1,000.
Not sure if inflammation?
I try to follow low iron and got rid of cast iron skillet. How can one address if inflammation cause. Should I make appt w Mayo AZ liver and hemot dr? Bay Area is stumped why high. Their solution pull pheb which drops hemoglobin on transplant. What are other side affects of high ferratin. UCSF peninsula hemo and Stanford liver dr discuss none of this. CA 10 yr wait for kidney so they don't have much experience w transplants and high ferratin. Sorry for long post. I would like to get to cause high ferratin? inflammation? and who to see.

@islandgreen I do not have Hemochromatosis, but I am in remission for bone marrow cancer. Over the years, I have had chemotherapy and blood transfusions. My ferritin level is now at 800 after dropping from 1200. I have had phlebotomy treatments to get it to 800 and more are scheduled. Because of my bone marrow cancer, we have to keep a close eye on my hemoglobin levels. Every time I have phlebotomy, my hemoglobin drops. My question for anyone who may know, what is an acceptable amount of dietary iron intake on a daily basis. I am losing weight because I am trying to avoid food with iron. My oncologist told me not to eat red meat, shellfish or liver, no iron or Vitamin C supplements, but almost everything has iron in it. Does anyone know of a recommended daily allowance of iron for patients with high ferritins undergoing phlebotomy? Have you ever heard of a specific diet or recipe book? I was also told to drink black tea because it helps block iron absorption. Thanks to anyone with any ideas.

71 yr old obese female.
My ferritin level: 2,580
ALT: 1,065
AST: 703
Likely reason?
A tiny little hormone pill twice a day designed to help me prevent uterine cancer.
I’d rather have a hysterectomy!

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.