Invisible Illness – Hemochromawhatsis?

My husband has a much more difficult time with his invisible illnesses than I do, mainly because his are less known and definitely more misunderstood.

The one we are mostly dealing with at present is hemochromatosis. The Mayo Clinic defines it as:

Hereditary hemochromatosis (he-moe-kroe-muh-TOE-sis) causes your body to absorb too much iron from the food you eat. Excess iron is stored in your organs, especially your liver, heart and pancreas. Too much iron can lead to life-threatening conditions, such as liver disease, heart problems and diabetes.

The genes that cause hemochromatosis are inherited, but only a minority of people who have the genes ever develop serious problems. Signs and symptoms of hereditary hemochromatosis usually appear in midlife.

Treatment includes regularly removing blood from your body. Because much of the body’s iron is contained in red blood cells, this treatment lowers iron levels.

My hubby’s cousin was the first in the family to be diagnosed with hemochromatosis and his iron levels were incredibly high, in the 800’s. It took weekly sessions of draining blood to bring him back to normal levels of iron in his system.

The most common symptoms include joint and abdominal pain, fatigue, and weakness. One symptom that we have found in Hubby’s family (and especially in his case) is a constant feeling of being cold. His father felt this one as well.

My father-in-law had the treatment and says he has gone from several blankets at night to a sheet over his body… but not his feet! Hubby currently wears up to 10 shirts (6 or 7 in the summer time), and a few pairs of long underwear and even windbreaker pants under his outer pants. He also wears several layers of pajamas and sleeps in a sleeping bag – I, on the other hand also sleep on top of the bed, with no covers at all.

So, after doing a lot of research, and of course comparing Hubby’s overall symptoms with family members, we went to the doctor with this (including a letter stating that it is in the family. The doctor tested Hubby’s iron levels, twice, and both times it came out over 500. However, the medical system in our province will not do genetic testing or treat it as hemochromatosis unless it is near or over 1,000! Which is strange because Hubby’s Dad was around 700 and he was treated.

There are two options. He can go to our naturopath who will do the procedure at around $150 per session or he can donate blood. The second option doesn’t cost and they will accept people with hemochromatosis, however, you are restricted on how often you can donate so the “treatment” takes much longer.

In the meantime, Hubby catches every bug that he comes in contact with, which is a lot considering he drives a bus for the elderly and others who need accessibility. Then, he gives the bugs to me and my fragile immune system. For most of the winter, we just keep passing the bugs and colds back and forth.

Between the symptoms of hemochromatosis and the flu bugs, Hubby often has to take sick days because he just isn’t up to driving. He loves his job; however, he has to consider the safety of his passengers.

This brings us to yesterday. Hubby was off sick 2 1/2 days this week and Friday we saw the doctor. She said that neither his iron levels nor his thyroid explain why he is so cold “so I don’t know why you are wearing so many shirts”.  But she did say that he could try giving blood, so that is where he is now.

I really hope this works because I want my Hubby back – the one who has energy and doesn’t resemble the Michelin Man!

Lydia!