Hemochromatosis…
Hi friends,
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.
~Aimee
American Hemochromatosis Society
I have both HH and PCT
Hi Suz, how long have you known you have both? If you have any questions, feel free to ask! I have been managing mine for over 15 years now.
My Brother had Hemochromatosis I am not sure if it was hereditary or not how would you know and how would his children go about getting tested? There is not much info that I could find during the time my brother was diagnosed thanks for any info that I may pass on
Hi there, by had, do you mean he is deceased? To get his children tested all you need to do is contact their pediatrician and ask for the blood test for HH and/or a ferritin level check. I was referred to a genetic counselor for my children and they are carriers, but do not “have” it per say. The research that I have on this blog will point you in the right direction. All of the underlined words are linked to the correct research so that anyone can find my sources. Here is a good one for you to check out: http://www.irondisorders.org/hemochromatosis
Thank you for asking as it is very important to follow up with family members about this and I would get yourself checked out as well. Especially your iron levels:)
I too am a sufferer this group provides support from friendly people and good information. If anyone would like to join feel free to copy and paste the link and find us. Thank you for allowing me to post this here as I feel that we all need support when dealing with these illnesses no one else seems to understand
Why is hemochromatosis considered the Celtic Curse? I am led to believe it afflicts mostly Irish??? My dad was 100% Irish and yes he had it. Oddly after years of dealing with relapsing polychondritis and years of prednisone therapy. Towards the end he was having blood transfusions twice or more a week. Noone ever suggested he might pass it on because we assumed it was the prednisone causing it. Interesting enough he donated large amounts of blood twice a year for decades… up until getting ill, of course.