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Oregon Man Survives Nearly Fatal Misdiagnosis
Tuesday, June 28th, 2011

According to a report on KATU, hemochromatosis (an overload of iron in the blood with a hereditary cause) is the most common genetic disease in America—but it's also widely misdiagnosed.  A local man, Jeff Williams, is fighting to change that after he nearly died from the disease. When he was first admitted to the hospital in 2008 doctors said he had cirrhosis of the liver from being an alcoholic,and was going through alcohol withdrawal.

The doctors were wrong, and their mistake almost cost Jeff Williams his life. 

According to Mr. Williams and his family, he wasn’t a heavy drinker—in fact, had not even had a drink in the weeks leading up to his admittance at the hospital, where he spent six days in a coma. He was also diagnosed with diabetes at the hospital during his ICU stay.  As soon as he got out of the hospital, Williams started doing his own research with a friend who is a doctor in an attempt to determine why he had been diagnosed with cirrhosis and diabetes at the same time, and came across information for hemochromatosis. The symptoms?  Diabetes and cirrhosis. 

Due to his own initiative, Jeff Williams got the blood tests that confirmed toxic levels of iron were damaging his internal organs and causing severe, permanent damage to his liver and pancreas. Mr. Williams could be dead today if he didn't self-diagnose his own hemochromatosis. It is a good reminder that doctors and hospitals can make mistakes.

Read more about his story in The Washington Post.

2 Comments » Comments on this Entry

2 Responses to “Oregon Man Survives Nearly Fatal Misdiagnosis”

  1. Jeff Williams says:

    I am he. Consider this. On Jan. 10, 2008, they actually tested my ferritin in the hospital, found it “markedly elevated at 2098”, and even mentioned that my multiple problems were “suggestive” of hemochromatosis. But avoiding that SINGULAR possible diagnosis, they rationalized that the ferritin levels were indicative of my “cirrhotic state” and “nutritionally depleted state” “rather than the other way around” (implying the HH damaged the liver and the iron overload was causing the high ferritin levels, which they most certainly were).
    Consider this: This report was NEVER released to me. The doctor who authored it NEVER MENTIONED he had written it in SEVERAL subsequent visits, or even when I INDEPENDENTLY SELF-DIAGNOSED some 4 1/2 months later. Not when I called him and demanded he order the labs for this test. Not after they were positive. Not after the genetic test was postive. Not after I demanded and received the lab tests for typical “auto-immune” type 1 (negative, of course!).
    COnsider this: I accidentally happened upon this report at a visit to my nurse practitioner on May 10, 2009. You can imagine my shock. And what are the repercussions of them misdiagnosing me and not telling me? There are two; one being: Had I not self-diagnosed, they would NEVER have tested me for HH again. I would have died. 2: By self-diagnosing, I essentially cut through the time-space continuum by intercepting that possibility.
    Finally, the possibility of legal action based on damages caused by negligence were removed as I self-diagnosed at 4 1/2 months after hospitalization. There is little chance of proving incremental damage from iron overload during that period. Thus, negligent and incompetent and perhaps malicious for concealing the previous ferritin test and disregard of HH as a possible cause? H%$L YES! Were there damages as a result? Probably impossible to prove and not worthy of … er.. ah.. pursuit.
    ’nuff said, as they say…

  2. Thank you for your comment, Mr. Williams, and for sharing your story with us.

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