Am I going to die because of hereditary hemochromtosis C282Y ?

This was perhaps the first thing that went through my mind when I found out I had this hereditary condition. My blood test results showed my body had stored a lot of excess iron, well above 10x what it should have been.

From what I read, the body storage of excessive iron above a level of 1000 ferritin, increases your risk of a fatal heart attack by as much as much 5 times more likely. Thats a fatal heart attack. Excessive iron stored in your body is very toxic and can increase risk of various cancers and damage to organs, including liver, pancreas, heart.

Most people with hereditary haemochromotosis/hemochromotosis if not treated will have there lifespan reduced by several years. Its not just the fact this will reduce your lifespan, it will also make you feel weak and listless. Causing joint pain and reducing your ability to recover from exertion. There is a reason its called the Celtic curse.

I’m hoping now that I am at maintenance level many of my health problems will get better or at least milder. I’m hoping now my iron storage levels have been reduced from 2880 ferritin to 27 ferritin . Which has taken nearly 18 months of weekly then bi weekly then to every 4 weeks. It’s a long slog getting de-ironed. Can’t thank the NHS nurses that carried out my many, many venesections enough. they are fantastic.

I am hoping I will start to have more energy and less aches and pains. At the moment I definitely feel more energetic and have been doing a fitness routine for nearly 6 weeks now. My aches and pains are also reducing. Hopefully this is where I start recovering from the Celtic curse.

Hereditary Haemochromatosis / Hemochromatosis C282y

Hereditary Haemochromatosis / Hemochromatosis C282y, 23andme DNA health check has potentially saved my life. After having my DNA analysed. I found out I have C282y x 2 copy’s an ancestral genetic mutation that may go back thousands of years. It was a total surprise to find out, then going to see my doctor who I thought might laugh and tell me the test is just a silly thing on the internet, but he didn’t. He took it very seriously and sent me for some blood tests to check my serum ferritin and transferin saturation levels.

Serum ferritin is how much iron is stored in your body, high levels are regarded as between 200 and 1000, my blood test results showed my serum ferritin +2800.

Transferin saturation is the iron levels flowing in your blood. A normal percentage would be around 33%, my blood test results were 98% transferrin saturation.

What is so amazing without doing the DNA test with 23 and me .com I would never had known anything about this.

My doctor made an appointment for me to go see a haematologist at my local hospital. It took 5 months for my first appointment. I spent those months reading as much online about hereditary haemochromotosis/hemochromatosis, a word I couldn’t even initially pronounce.

It has taken nearly two years to get my excessive iron stored in my body removed. It’s been a long journey.