← Return to High Ferritin Levels with low iron levels.

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Profile picture for blessedgrandma1 @blessedgrandma1

Hello, I had the very similar in past! I did not have genetic condition.
Oncologist told me he did not see any lymphoma activity and must be inflammation somewhere causing ferritin to be 3500….he sent me to Rhumotologist. They found no autoimmune problem ! It was very confusing for my doctors. Started phlebotomy and now it’s down to 400.
My Oncologist brought in another Hematologist that specialized in this disorder , she also agreed inflammation & ordered the phlebotomy every 2 weeks! “Something causes it” but yet to find clear answer. Oncologist wanted me to get additional genetic testing but I haven’t. I’m in remission for DBCL.
I would search for a Hematologist that specializes in high ferritin, I would think suggest the phlebotomy. All the best!

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Replies to "Hello, I had the very similar in past! I did not have genetic condition. Oncologist told..."

@blessedgrandma1 First, let's remember what we're measuring. Ferratin is stored iron. But when we measure it in the blood we're actually measuring the stored iron in the blood, not total stored iron. Inflammation often gets blamed because one of the things the body does during inflammation is lock down iron. But with such an extreme increase it seems unlikely that your body has suddenly found massive amounts of iron to create new ferratin. I'm not a doctor, just a patient who reads obsessively, so I'm just guessing, but I'd say the best place for that much iron to suddenly appear from is your own cells. If you have a higher than normal number of cells dying off the iron from those cells gets recycled when the cells are broken down. If there aren't enough new cells to take up the iron it will circulate for a while until the liver or new cells process it. The other possibility I would consider is that healthy cells are being altered by cytokines or some other disruptive agent and are releasing their stored iron. I suppose inflammation could be happening too, but I don't think it would drive the spike. If either of these is what's happening it's definitely not hemochromatosis. You aren't taking in too much iron, your body is just redistributing what was already there.