I am 50 yo and was diagnosed with hemochromatosis about a year and a half ago. Had a ferritin level of 550 and the genetic test came back positive. Did weekly phlebotomies for several months until last summer (2009) when my ferritin level was 8. I have not had phlebotomies since that time, and have had my ferritin level checked every 3 months, but it has not moved from a level of 8. I would think that if I had hemochromatosis my levels would have risen somewhat over the past 10-12 months. Are there any dangers from having such a low ferritin level? Thank you.
There is no advantage to having a low ferritin. It tends to make people feel tired; it also makes them more iron avid. We recommend a ferritin of about 50 for management purposes. The reason it may not have gone up could be due to several factors, the most important of which is to make sure that you are not bleeding from somewhere, so you ought to talk about this with your primary care doctor or the doctor who is managing your hemochromatosis.
We actually recommend short-term iron supplementation for patients if they are symptomatic in this situation, but either way, you need to follow up with your regular doctor.
For more information:
Go to the Hemochromatosis health topic.