Hemochromatosis: A common disease with many faces 

My step dad developed iron overload as he aged. For other reasons he went on a keto diet for four months, lost 40 pounds, then continued to eat healthy. His iron problem went away.

Diagnosed with HH C282Y in late 90s. I have studied and researched HH for over 20 years... and I learn something new every day. My belief is to strive to be the smartest person in the room (doctors exam room, or phlebotomy center). About to turn 71 and have shifted my diet to a carnivore "adventure" which has helped me lose 50 + pounds, reduce my inflammation, improve my blood pressure and cholesterol. Currently off BP meds, and statins. The adventure continues. All the best Dr. Kim, nice presentation.

That was an excellent and comprehensive explanation. Thank you very much

Thank you. I have hemochromatosis and feel very alone even though it’s supposed to be fairly common. My first symptom was super painful joints. Hands and knees mostly. Then my super smart doctor tested me and I thank her so much for knowing about this...wish she was still my doctor. Oh well, insurance dictates our lives.

Hi Great video. Extremely informative. Thank you

Thank you...You make it easier to understand... Appreciated 😊

nice lecture

Thank you!

Thanks a lot

Very helpful vedio sir🙏

Diagnosed with Hereditary Haemochromatosis 8 years ago after getting food poisoning in Egypt. I think I might have got salmonella then and its still in me. Dr. is doing a blood culture currently. So its nice to see you highlight salmonella as iron loving, I didn't know that. Perhaps I'm finally about to find my problem.

Most clear understood video the seen yet. Thank you, Dr. Heterozygous with both c282y/h63d. Also diagnosed positive with alpha-1. Wondering how alpha-1 and HH correlate with each other?

Ofcourse the serum ferritin level is a major indication parameter but I also wonder if there are already some general indications or standards for various iron concentrations of depositions in different organs (liver, heart, pancreas, bones etc.) because theoretical it is possible that people with a relative late diagnosis (+55 years) of around 1500 ng/ml may have developed some high local iron organ concentrations over all those years.

I am heterozygous for H63D, my entire family on my mother's line has hemochromatosis, so in some way we inherit it dominantly. I was diagnosed at 38 years old, with 1200 ferritin and a saturation of 50%, 90umol/g of iron in the liver.

My brother died of a brain anyerism, his heart had stopped three months prior and he was in a beautiful garden, he said he didn’t want to leave, Christ face was shining like the sun arm extended to him. Mulvihill and Shea ,Moore are family names. My brother is a carrier of HH his son has it. I have all the symptoms. Had extreme tiredness in my 30’s but I regularly give blood. My grandma was Red Cross nurse. All the health problems in our family is in heart ,liver pancreas. I have fibromyalgia,low thyroid. Where can I go for genetic test?Your lecture very helpful.

what is the biomarker of the HH and that is the technology used in the diagnosis ?

I recently found out I am heterozygous H63D with Pro570Ser? I have 125% Iron sat low tibc and normal range of ferritin. Have joint pain muscle pains primarily in my calves and sometimes my thighs. It’s rough. I’m still eating for my first appointment with my hematologist/oncologist.

Hello. I had blood work done, my TIBC is low which indicates too much iron but my ferritin was normal yet my rbc was low. What could that indicate. My two uncles do have hemocromotosis. Thank you.☺️

Is Hemochromatosis common along with ITP or likely to be an outcome?

I wonder if my brother died of haemochromatosis. He was tired all the time. Then eventually he turned yellow and died about six weeks later. He used to drink too much, so I thought it was that. However, I think he had a medical once and they pointed out the danger. I had completely forgotten about that, because it was about twenty years ago. My brother had some weird phobia of doctors. He refused to seek medical help. He did not complain of joint pain and he did not turn bronze coloured, although he developed a strange skin condition. He was covered in red spots. He looked terrible. He had a mini-stroke some years ago. His mother was Irish, although his father wasn't.

I read that constantly high transferrin saturation levels can cause organ damage despite normal ferritin levels. Is this true?

Excellent presentation! I had a question about something you mentioned. I tested positive for hemochromatosis, though I'm not sure what gene combinations I have (I've been referred to a hematologist next month). However, my red blood cells (5.89), hemoglobin (18.3), and hematocrit (54.2) were all high. Are those numbers common with hemochromatosis? Or does this suggest I might also have polycythemia vera? You mentioned both on the slide about donating blood. I'm a 41 year old male.

I was diagnosed 25 yrs ago, at age 35 with hemochromatosis. My mother was diagnosed in her 60’s. I have been on a maintenance phlebotomy plan (but more recently since menopause). In the last 10 yrs, I’ve been suffering with tremendous joint/muscle pain, which was diagnosed as Fibromyalgia. Now I’m wondering if it’s actually hemochromatosis.

Thank you for your information. I carry C282Y variants A/A and H63D C/C, DX 2020 w/Autoimmune hemolytic anemia & cold agglutinins (polyclonal).. 2023 Labs: Ferritin 634; Iron 199; TIBC 219; Iron sat% 91. (Increased Fe/iron labs first noted increase in 2020). Hgb & RBC stable at just below normal levels. How would you know if the high Fe/iron is from Hemochromatosis or the anemia?

Dear doc, My ferritin and CBC are normal but serum Fe is elevated. And I'm not taking any supplements. My Fe should be between 65-175 but it's 239. My ferritin should be between 25-365 and it's 153. Should I be worried? I'm not European by the way. Could it be just too much iron in my diet?

I am homozygous H63D, and I feel much better giving blood six times per year.

Can it cause gastritis? and burning stomach. Because I do have iron overload thanks

i think we had a meeting with you in Amsterdam in 2019 EHA conference.i took a selfie with you

What to do if you are a homozygote for H63D but your iron levels test normal over a couple years, but your bone density is low & you have osteoporosis, plus osteoarthritis in hands, gout in toes, and a foot fracture? Phlebotomy is useless in this case and won’t reverse the arthralgia.

Wondering if women with Hemochromatosis also tend to suffer from Endometriosis ?