If you found this blog because you are doing research for your own disease, Hereditary Hemochromatosis, feel free to use the search button or the tag cloud that lists the topics of this blog. I have been doing research for 16 years, and I am not a doctor. I feel that it is important to understand the terms associated with this genetic condition and what to do once you have reached the “maintenance stage”. Sometimes this disease will be referred to as the “iron overload” disease as well as the “Celtic curse”. If you are new to this condition, please feel free to comment on any of the posts and ask any question you might have. I use some terms that might not be familiar to people, so here is a helpful resource. Primarily, the words I use are ferritin, the major iron storage protein in the body and usually someone with HH has their ferritin levels checked before a phlebotomy. A phlebotomy is the process of obtaining blood from a vein. Some of us refer to it as “leeching”, which of course is a joke. When reading, you might come across the word transferrin, which is a plasma protein that transports iron through the blood to the liver, spleen and bone marrow. It is important to know your transferrin saturation; however, not all doctors do this test once you are diagnosed. See this link for more details on how this test works. Most doctors order this test if they suspect your levels are high enough to cause organ damage; however, if your saturation is still high and you are getting phlebotomies, they might decide to increase frequency of phlebotomy, so it is still good to know this result.
Lastly, I will mention that in the beginning, they were doing a CBC and then deciding if I needed a phlebotomy; however, I raised a bit of ummm fuss over that line of reasoning. After many years of this and much research, I schedule my phlebotomies like clockwork now and get one in the summer and one in the winter, 6 months apart and will continue to do so for the rest of my life. Please don’t let a doctor try to tell you that you are “cured”. There is no cure and the iron will continue to build up again. You are your own best health advocate. Use that to your advantage.
Hopefully, this helps you get started on your reading if you are new to this diagnosis. As always, please feel free to share your questions. Lastly, I use condition and disease. It has been called so many names that I lose track, but the bottom line for me is that we understand it.