Fact-Checking A Consumer Reports Article About Iron Overload

Here at ironitout.org we appreciate any and every article published about iron overload because each raises awareness. But with 20 years of investigative journalism in our ranks, we  think it’s helpful to fact check articles and share the results with the public. Here’s the article. The red type is our researched corrections.

 

Hemochromatosis, iron-overload disease, is more common than previously thought By Consumer Reports September 2, 2013

The headline is a step in the right direction for hemochromatosis awareness, but if consumer reports is talking about the statistical data regarding how many people have the mutation in the population, this number has been known for decades and has not changed. No one suddenly discovered a flaw in the calculations.  The headline might be referring to how, after 20 years of working from few and flawed studies, the medical community is waking up. Iron overload is the source of many resulting illnesses. Iron overload is the trigger. For years Doctors were trained that lots of people carry the mutations, nearly 3 million in the USA alone, but few get sick. In reality, few show symptoms (1 in 4) so the disorder is allowed to progress silently. And those who do show early symptoms are misdiagnosed and don’t get the simple, life saving treatment before the damage is done.

 
During your next game of medical trivia, Consumer Reports’ chief medical adviser, Marvin M. Lipman, suggests that you ask this question: “What’s the most common genetic disease of white men?” If all you do is draw blank stares, you can provide these clinical vignettes as clues:

●An apparently healthy 50-year-old man whose father, a nondrinker, died of cirrhosis of the liver.

●A 45-year-old man with severe heart failure whose coronary arteries are clear and heart valves are normal.

●A 57-year-old man with new-onset diabetes and a year-round tan who seldom exposes himself to the sun.

The answer: hemochromatosis. And in case that leaves the people you’ve stumped with only a quizzical look on their faces, you can add, “You know, iron-overload disease.”

Hemochromatosis was for many years thought to be a rare genetic disorder, Lipman notes. But today we know that it results from the inheritance of an abnormal recessive gene from each parent. Studies have found that one in every 150 to 250 white people is affected. It’s less common among blacks and practically nonexistent among Asians. The disease rarely shows up before people are in their 40s or 50s, and men are 24 times as likely to have complications from it as are women.

Symptoms and accompanying damage from the disorder don’t manifest/show up in many people until their 40s -TRUE – but this is different and less relevant that the disease being present since birth. It’s a genetic disorder, with a person from the start.  With national screening we’d know who had it, monitor iron levels regularly to prevent any damage ( which won’t be detected otherwise until it’s too late in most people) with simple, inexpensive, safe treatment.

Men and women acquire the mutation at the same rate. It’s bad science not backed up by data to say that men are 24 times more likely to have complications.To start, the medical community is working with very sparse and incomplete data because so few people are diagnosed of the total number who have it. Of those men who have been connected to the disorder, the only statistically significant  higher complication rate is with liver failure and cirrhosis. Other studies find women with the disorder  present complications with arthritis at a higher rate than men. It’s a myth that iron overload is an older white man’s disease. 

The defective gene causes decreased production of hepcidin, a liver protein that prevents the intestinal absorption of excess dietary iron. Except for menstruating women, we ordinarily need very little iron in our diets to balance out our losses. Were it not for that hepcidin-mounted defense, we all would be at risk for iron overload just from dietary sources. And when too much iron is absorbed, it can infiltrate and eventually destroy almost every major organ in the body.

Serious complications
People who don’t make enough hepcidin have no such protection, yet only about 10 percent will ever develop symptoms, for reasons still not understood. And in those who do, not all organs are involved at the same time or to the same extent.

Again, it’s bad science to say that only 10 percent with hemochromatosis develop symptoms, because the medical community is only diagnosing a small percentage of the total effected population. Most people with HH go through their life without knowing they have it, even while that are suffering a chronic illness triggered by it, or have their life cut short and are in a cemetery with a death certificate that lists cancer, heart failure, diabetes, liver failure as the cause of death, when in fact it was iron overload that put them there.

The liver is most commonly affected, with cirrhosis (scarring) and liver failure the ultimate result. About 6 percent of those with cirrhosis develop liver cancer. A timely liver transplant offers the only chance for survival.

To avoid the fate of his father, the first man described above is getting the standard treatment for hemochromatosis, which involves periodic phlebotomy (bloodletting) to get rid of some of the excess iron.

When the heart is affected, as in the second vignette, the result can be cardiomyopathy (the replacement of the heart muscle with scar tissue), heart block (a disorder that causes a slow heart rate) and other abnormal heart rhythms. The cardiomyopathy is often resistant to treatment, and a heart transplant might be the only solution.

Infiltration of the pancreas with iron can cause secondary diabetes. If iron is also deposited in the skin, causing a brownish coloration as in our third example, the condition is referred to as “bronze diabetes.” The endocrine system, including the pituitary gland, the thyroid and the testicles, suffers as well, with impotence and other deficiencies as the result.

Who needs testing?

The laboratory markers for hemochromatosis can be found in relatively inexpensive blood tests. Elevation of serum ferritin, the protein that stores iron, can be the best indicator of increased iron. If tests show that transferrin, the protein that transports iron through the bloodstream, is saturated with iron, that virtually clinches the diagnosis. Gene testing should also be done before a patient begins periodic phlebotomy for an indefinite period of time.

The test mentioned was on the standard panel of initial blood tests  but was removed in 1996 for a host of  financial and political reasons, none of them medically sound. The number of lives lost by taking the test off the panel can’t be determined.

Despite the frequency of the disease, universal screening is not recommended.

False, The American Medical Association’s own study found that universal screening would increase early diagnosis and treatment rates 20 fold. 

Experts disagree about who will and who won’t develop symptoms, and the large racial disparities in disease prevalence argue against screening everyone. But targeted screening of people with certain risk factors and symptoms makes good sense.

A Kaiser Permanente program that hosted universal screening in San Diego increased diagnosis and treatment at a rate of 1 in 181 patients. In 2015 every doctor in the USA lets a case of iron overload walk out of the office undetected every 12 days. 

Ask your doctor about testing if you have one or more of the following:

●A family history of hemochromatosis.

●A close family member with “nonalcoholic” cirrhosis of the liver, cardiomyopathy or primary liver cancer.

●Unexplained abnormal liver-function tests.

●Cardiomyopathy, heart block or abnormal heart rhythms.
●Adult-onset diabetes mellitus that requires insulin treatment.

●Impotence traceable to an endocrine cause.

Copyright 2013. Consumers Union of United States Inc.

For further guidance, go to www.ConsumerReports.org/Health, where more detailed information, including CR’s ratings of prescription drugs, treatments, hospitals and healthy-living products, is available to subscribers.

 

To read the original article without our commentary:

https://www.washingtonpost.com/national/health-science/hemochromatosis-iron-overload-disease-is-more-common-than-previously-thought/2013/08/30/4c15e7a4-eff2-11e2-a1f9-ea873b7e0424_story.html

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