For 3½ years, Alissa Kaplan Michaels lived with the belief that she had Type 2 diabetes after a blood test in 2008 showed she had high sugar levels. Like most newly diagnosed diabetics, she didn’t challenge her doctor’s opinion and radically changed her lifestyle – going to a low-carb diet, exercising more, and taking oral drugs.
But her blood sugar kept rising and the meds made her feel sick and tired. She knew something was wrong and switched doctors multiple times, but none could figure out the problem. Then last fall, a medication mistake – she took too much of a drug – prompted an emergency call to a physician covering for her regular doctor.
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During that conversation, the fill-in physician asked her a series of questions – about her health, symptoms, background, and lifestyle. Then came the bombshell: “The doctor said, ‘I don’t think you have Type 2 diabetes. I think you’re Type 1.’”
Sure enough, tests confirmed that the New York public relations specialist had been diagnosed with the wrong form of diabetes. The covering doctor immediately switched her medicines – she dropped her oral meds and now takes insulin. She also started eating carbs again. Alissa, 44, was feeling better within days.
“That day everything changed. I feel like I got my life back,” she says. “No one should have to go through what I went through. It’s unfair and it’s not a way to live.”
Alissa’s experience highlights a dangerous trend in diabetes care: Many adults are being diagnosed with Type 2 diabetes when, in fact, they have Type 1. The misdiagnosis is so widespread that Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York, said: “Most of my (Type 1 patients) have been misdiagnosed as Type 2.”
That medical mix-up can be devastating or even life threatening. Type 1 and Type 2 diabetes are similar, in that people with the condition have difficulty controlling their blood sugar (glucose) levels. Left unchecked, either type can lead to serious health problems, including organ failure, blindness, kidney damage and even death. But treatment of the two diseases is very different.
Type 1 diabetes – called juvenile diabetes because it primarily occurs in children and adolescents – is an autoimmune disease that hinders the body's ability to make insulin. Scientists believe it is caused by genetic and environmental factors (largely unknown). Treatment usually requires daily insulin injections, or use of a pump that keeps levels steady.
Type 2 diabetes – also known as “adult-onset diabetes” because most people acquire it after childhood – is typically caused by obesity, inactivity, poor diet, and other unhealthy behaviors. In Type 2 patients, the body is unable to efficiently use insulin, which allows the body to process blood sugar. Treatment usually involves lifestyle changes and drugs designed to improve insulin absorption and keep blood sugar from spiking quickly after meals.
“The consequence of misdiagnosis is that you might not get put on the right therapy,” notes Sue Kirkman, senior vice president for Medical Affairs & Community Information for the American Diabetes Association. “The best way to tell if you've been diagnosed correctly is whether you a responding well to therapy.”
Sheldon Nassberg, M.D., a Fort Lauderdale endocrinologist, notes most cases of diabetes are Type 2.
“About 90 percent of patients have Type 2 diabetes,” he says. “It’s an epidemic because we are getting more obese, and the key to it is abdominal fat.”
People with Type 2 who lose weight and improve their diet often can manage the disease – sometimes with the help of oral meds, Dr. Nassberg adds. But people with Type 1 must take insulin.
“If you’re Type 1 you need insulin – period. There’s no way around it,” he says. “With Type 2 you lose weight, you lose your resistance to the insulin, and your sugars get better and you get better.”
Tests involving c-peptide tests, glucose resistance, fasting blood sugar, and autoantibodies are among the diagnostic strategies that can confirm which type of diabetes a patient has. But some experts say primary physicians may not perform such tests before concluding a patient has Type 2 diabetes.
Alissa says she is still angry about her misdiagnosis, but she hopes telling her story will help raise awareness.
“If just one doctor reads my story and thinks about it the next time an adult patient is presenting with the symptoms that are Type 1, it will all be worth it,” she says.
The complete version of this article first appeared in Health Radar. To read more, CLICK HERE.
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