But without standard screening for hemochromatosis we’re only catching an estimated 15 percent of the 1.7 million undiagnosed US population walking around with this time bomb.
Allowing iron to quietly build to toxic levels is the most insidious and lethal aspect of this disorder. People feel fine until it’s too late… right up until they need a new liver, get a cancer diagnosis or experience heart failure, diabetes, cirrhosis, crippling arthritis.
I was that person. A world class athlete, father of four, travel writer, active, non-smoker, non drinker in my prime… and 2-3 years from cirrhosis and shopping for a new liver. Saved by an annual physical, my big mouth and a sharp doctor who followed up rather than telling me my slightly elevated liver tests were nothing to worry about.
Most doctors don’t catch it at all, misdiagnosis for other illnesses or don’t treat people with iron overload until they seek help for the resulting illnesses, not the source that is causing it.
“ … most physicians have never personally diagnosed a case: all see an unrecognized case in their offices every two weeks.” -Vincent J. Felitti, MD, FACP
A nationwide screening program is imperative. The American Medical Association said screening would increase early diagnosis 20 fold, i.e. 20,000 would become 400,000 diagnosed in time.
“ … many are misdiagnosed as some other, more familiar condition which has the same initial appearance.” -David Baer, MD, FACP
The tragedy is that in 2015, the technology is in place, and simple, inexpensive blood tests exist to catch this, the most common, deadly genetic disorder in the world, but so many people suffer chronic illnesses and die without knowing they had a loaded gun to their head, that could have disarmed before it went off. As iron builds-up in the body one in four may develop the following symptoms as it accumulates in the brain and other body tissues:
Brain fog, Fatigue
Low sex drive and erectile dysfunction (iron accumulates in the testicles)
Mood swings, especially anger
Digestive problems as iron builds-up in the gut
Fatigue after meals (insulin resistance)
Congestive heart failure
Often, when symptoms appear, the disorder has progressed. This is why standard screening/ferritin testing and doctor education is so crucial. When symptoms do appear early they often present as common middle age ailments, so are either ignored or misdiagnosed and often treated with medication for arthritis, or with viagra, testosterone therapies.
This can change, and it won’t take millions of dollars of research. The budget for one year of drug research and development for an magic iron overload pill would pay for a national screening program.
National Screening, more info. @ ironitout.org
Please support our funding campaign to fight for national screening: