Jewels Doskicz is a registered nurse, freelance writer, patient advocate, health coach, and long-distance cyclist. Jewels is the moderator of Diabetic Connect’s weekly #DCDE Twitter chat, and she and her daughter both live healthfully with type 1 diabetes.
While 29.1 million people in the United States have a diagnosis of type 2 diabetes according to the CDC, a percentage are misdiagnosed and actually have type 1 or 1.5 diabetes.
In fact, up to 10 percent of those diagnosed with type 2 diabetes as an adult could have type 1 diabetes instead, based on several studies cited by Dr. Jennifer Holst in CBS Pittsburgh.
Irl B. Hirsch, professor of medicine at the University of Washington Medical Center in Seattle, finds that “it’s not on their [physician's] radar because they see so much diabetes and it is by far mostly type 2.”
The Wall Street Journal reports that as more people in the U.S. are diagnosed with diabetes, they’re “getting caught in a potentially dangerous situation” diagnosed with “a substantially different condition.”
What does diabetes "look like"?
Struggling against mainstream thought, an obese 50-year-old can be diagnosed with type 1, 1.5, or type 2 diabetes. In contrast, a thin individual or an elementary-age child can also be diagnosed with type 2 diabetes.
There certainly are preconceived notions surrounding what diabetes "looks like," but unfortunately, diabetes doesn’t always have a poster-perfect presentation. The odds may be in a provider's favor, but without further testing, misdiagnoses can—and are—happening.
Perhaps it’s time to educate ourselves; presumptions are clearly tainting the way diabetes is diagnosed and treated.
Adults diagnosed with type 1 diabetes
With these inherent problems at hand, if an adult shows symptoms of type 1 diabetes, chances are they’re in a dicey spot.
Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York, comments on the matter: "Most of my [adult type 1 patients] have been misdiagnosed as having type 2. Once the right diagnosis is made, the patient feels much, much better, but they are distrustful of doctors…and who could blame them?"
Brian Black, age 52, from Arizona, states he was sent home with a new diagnosis of type 2 diabetes after a three-week hospital stay with a foot infection and high blood sugars in 2010. Over the course of a rocky three years without a proper diagnosis, he struggled with providers labeling him as “non-compliant.” Brian knew he was following his treatment plan, but it wasn’t working and it all made no sense to him. Both persistence and a second opinion led to testing he should have had at diagnosis, and his results pointed to a new one: type 1 diabetes.
Brian states his meticulous record-keeping eventually pointed his provider in the correct direction, and for this, he is forever grateful.
What defines one diagnosis from the other?
As Jerry Palmer, director of endocrinology at VA Puget Sound Health Care System, says in the Wall Street Journal, after a provider finds a blood sugar issue, the diagnosis is usually made “by looking at the patient and assessing family history, weight, and age. Doctors say, ‘It's not a good way to make a diagnosis.’”
Many providers fail to measure anything other than the actual blood sugars and A1c which can fail to recognize the correct disease process. Jerry goes on to say that in order to diagnose type 1 diabetes “doctors need to test for antibodies that indicate the presence of the autoimmune disorder. But few order such tests.”
Don’t be afraid to ask questions
Once the fuzzy cloud of opinion enters the picture, it may skew a provider’s vision along with their diagnosis skills. If you’re on the fence with your diagnosis, start by asking one simple question that will help you gain clarity, and may also change your diagnosis and treatment plan: Have I ever been tested for antibodies and c-peptide levels? This will help you receive the proper diagnosis and make sure you're on the right track with your treatment.
Have you been misdiagnosed? Add your thoughts in the comments below.