Diagnosing Type 1 in Adults
Why type 2 misdiagnoses abound—and what to do about it
When Amanda Speciale of Latham, New York, was diagnosed with type 1 diabetes at age 27, she breathed a sigh of relief. After five frustrating months of climbing blood glucose levels and increasingly higher doses of oral drugs, Speciale had an answer. And it wasn’t type 2 diabetes.
It took convincing her primary care doctor, a referral to an endocrinologist, and an antibody test to get her diagnosis. But it was well worth the fight.
“The [primary care] doctor just kept prescribing higher meds,” she says. “If I didn’t say, ‘You know what? Something is not going right,’ I don’t know if I would be here or be doing as well as I am right now.”
This is a common story among people diagnosed with type 1 diabetes as adults, a time at which getting the right diagnosis is one of the biggest challenges, says Lori Laffel, MD, MPH, chief of the section on Pediatric, Adolescent, and Young Adult Diabetes at the Joslin Diabetes Center and professor of pediatrics at Harvard Medical School. “Overwhelmingly, the most common kind of diabetes is type 2, and most often adults with type 1 have been told by health care providers that they likely have type 2 diabetes,” she says.
It can also be difficult to diagnose type 1 in adults because the tempo of the disease is typically much slower in adults than it is in children. “It’s still the same autoimmune-mediated destruction of the pancreatic beta cells,” Laffel says. “But adults with type 1 diabetes have residual beta cell function much more than do pediatric patients.”
This means that many adults will continue to produce some insulin, and they may need very little or no supplemental insulin for some time. This is characterized as latent autoimmune diabetes in adults (LADA), but this terminology is even a bit murky for clinicians, says Anne Peters, MD, professor of medicine at the University of Southern California and director of the University of Southern California Westside Center for Diabetes. LADA is often used as a catchphrase to indicate that “we don’t quite know what you are, but you are becoming like a type 1 because you’ve got antibodies,” she says.
When the immune system attacks the insulin-secreting beta cells, the body launches an antibody response. These antibodies—proteins that help identify enemies to the immune system, such as viruses and bacteria—are indicators of autoimmune disease.
When a person has high blood glucose, doctors may test for antibodies (“Testing for Type”), but they don’t test the general public because not everyone with these antibodies will go on to develop type 1 diabetes, says Peters.
Ethnicity can be a major barrier to diagnosis of type 1 in adults because type 2 is so prevalent in certain groups of people. If you are Latino or African American, your doctor might assume that you have type 2 diabetes without further testing. “If you’re in the ethnicity that’s supposed to be getting type 2, it’s even harder to pick up type 1 diabetes,” says Peters. “They are often misdiagnosed or not even diagnosed at all.”
Family history can also mislead doctors. While there is a strong familial connection for type 2 diabetes, “only about 5 to 10 percent of patients being diagnosed as type 1 have a positive family history of diabetes,” says Laffel.
Diagnoses happen faster when you know the signs and symptoms of diabetes, particularly unexplained weight loss (with no change in diet and exercise). Other symptoms of diabetes are increased thirst and urination, the onset of yeast infection in women or jock itch in men, blurry vision, and fatigue. But keep in mind: These signs point to both types of diabetes. If you are experiencing any of them, make sure your doctor explores the possibility of type 1, too.
Time of Your Life
While most people are diagnosed with type 1 in the second decade of life, or around puberty, diabetes can occur at any age across the lifespan, says Laffel.
Type 1 in older adults can be hard to diagnose because type 2 diabetes is so prevalent in people over 60. In addition, more people tend to become overweight or obese as they age, a common characteristic of type 2 diabetes.
Despite these trends, Peters says it’s impossible to know just how many adults have type 1 because many people go undiagnosed and nobody is counting those who are currently diagnosed.
Michael Krupar of Silver Spring, Maryland, was diagnosed with type 1 diabetes last year, at age 57. He had gone in for a routine physical, and his doctor noticed slightly elevated blood glucose. The doctor thought the elevation might be due to another medication Krupar was taking and asked him to go off that and come back to test in six months. At the next visit, Krupar’s blood glucose was so high that his doctor urged him to quickly see an endocrinologist, who diagnosed him with type 1.
“This was quite a shock. I was the picture of health. I’ve been a vegetarian for over 30 years, a runner for over 15 years, and I took care of myself,” he says. “The thing that is scary is [that] you don’t know what sets off the autoimmune disease.”
Testing 1, 2, 3
Though there are tests to determine diabetes type (opposite), they’re not routine at all doctor’s offices. So if you are concerned that your diagnosis is incorrect or you would like to know for sure if you have type 1 or type 2 diabetes, request an antibody test. Your physician should at least be willing to have a conversation about it.
“I truly believe in patient empowerment,” says Peters, whose oldest patient with new-onset type 1 was 94. “You can get this at any age. For people interested to find out if they have type 1 or type 2, I think it’s perfectly reasonable to ask their physician to measure an anti-GAD antibody.”
Terri Shepherd of Eaton, Ohio, had to use her empowerment muscle to get tested and diagnosed with type 1 in 2005, when she was 41. A year earlier, she had been diagnosed with type 2, four weeks after her brother passed away from diabetes-related complications. Shepherd had donated her kidney to her brother years earlier and was concerned how diabetes would affect her remaining kidney. “I wanted to preserve all the function that I had,” she says.
She thought she might find answers at a local Joslin Diabetes Center, but her family doctor was reluctant to sign a referral. He felt the specialists there wouldn’t be interested in someone with type 2 but made the referral anyway.
The Joslin endocrinologist had a suspicion Shepherd had type 1 diabetes because of her family history: Not only did her brother have type 1, but she has a nephew with type 1, too.
Shepherd’s endocrinologist ordered an anti-GAD antibody test, and she was diagnosed with type 1.
Sigh of Relief
Often these antibody test results can relieve a burden. “Every single patient I’ve ever had who had been treated for type 2 and finds out they really have adult-onset type 1 [is] happy,” says Peters. “They are not struggling anymore. They know what the answer is, and they can deal with it.”
While this may be true in many cases, it wasn’t only relief that Speciale felt when she got the type 1 diagnosis. “I was relieved that I finally had an answer,” she says. “But I was actually terrified because I [didn’t] know my future.”
The fear of complications associated with diabetes motivates Speciale to keep her blood glucose under control—particularly because she has a husband and two young children to think about.
Since her 2011 diagnosis, Speciale has had some struggles. She lost her health insurance in 2014, which forced her to go off her insulin pump, a tool that had helped her keep her blood glucose on track. She recently got health insurance again and is working to get her A1C back down.
Despite these hardships, she says the single most important thing she’s done is put her foot down with the primary care doctor who insisted she had type 2.
When children are diagnosed with type 1, there is often a built-in support system at diagnosis, including adult family members, an endocrinologist, a diabetes educator, a psychologist, and even summer camp to teach and motivate kids. But adults are often expected to figure out this new life of diabetes management on their own.
This is what happened to Ryan Barclay of Kalamazoo, Michigan, when he was diagnosed with type 1 in February 2014. Already underweight, 27-year-old Barclay had noticed weight loss and blurry vision. He went to his primary care doctor, who did a quick blood glucose test. The result was an extremely high 496 mg/dl.
The doctor diagnosed him with type 1 and sent him to the emergency room. Nobody explained to him how to dose his mealtime insulin based on the carbohydrate grams he planned to eat. He was supposed to speak with a diabetes educator before he could be discharged, but the hospital couldn’t find someone to come in on the weekend. He was sent home without any education. “I would eat eggs and bacon for breakfast and take 12 units of insulin, and then crash and have to drink some orange juice, and I didn’t understand why,” Barclay says.
Two weeks later, he saw his primary care doctor again, who explained the basics of carb counting and adjusting insulin doses. “Once I knew that, I was much better at managing it,” Barclay says.
To keep from falling through the cracks when diagnosed with type 1 as an adult, Peters suggests building your own team of diabetes care professionals. This includes a provider who understands diabetes, particularly an endocrinologist; a dietitian, preferably one who is also a certified diabetes educator; a psychologist or social worker, who can help you with adjusting; and an ophthalmologist to check for eye complications.
It’s especially important for people with type 1 to see a specialist. “I truly believe that all type 1s should have an endocrinologist so they can get the most updated care,” Peters says.
In addition, there are online resources and groups that can help you feel connected to other adults with type 1 diabetes. Whether you go to meet-ups, join a Facebook group, or follow diabetes bloggers, Peters say there is an abundance of helpful information out there. “With adults, it’s not handed to you,” she says. “But it’s there and you just have to create [support] for yourself.”
Don’t be afraid to question your doctor if you feel something isn’t right, says Speciale. “Sometimes you need people to look at things a little differently or you need more extensive testing that a primary care physician can’t do,” she says. “Never be afraid to seek out additional answers.”
Peters agrees that asking questions can help you more quickly and safely manage diabetes. “I have seen so many people not diagnosed appropriately, and they end up with high A1Cs for a longer period of time,” she says. “They really need to be treated appropriately.
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