For Phyllis Kornluth, a former merchandising director for a Fortune 500 company, diagnosis with Type 1 diabetes came at age 59, when she went to see her doctor for flu-like symptoms. At that office visit, her doctor ordered lab tests, discovered that her blood glucose was high, and prescribed oral medicine for Type 2 diabetes. By the end of that week, Kornluth remembers, she felt so awful that she made an appointment to see an endocrinologist, who discovered that her blood glucose was 700 mg/dl, diagnosed her with Type 1 diabetes, and started her on insulin.
Cherise Shockley, diagnosed with diabetes age 23, was also initially put on oral medicine. It was only several weeks later, when she went back to her doctor because her symptoms were not getting better, that she was put on insulin.
As these women discovered, it can take patient advocacy to receive a correct diagnosis and the right treatment.
“When an adult comes into my office who doesn’t fit the general profile for Type 2 diabetes — that is, he or she has no family history and is not overweight, I immediately order tests to check his or her antibodies,” says Dr. Claresa Levetan, an endocrinologist at Chestnut Hill Hospital in Philadelphia, referring to tests for autoantibodies typically found in the blood of people with Type 1 diabetes, indicating that an autoimmune reaction is taking place.
“It is critical that doctors don’t assume that an adult has Type 2 diabetes,” says Levetan. “In some cases, I have had an adult who is overweight and discovered that she does in fact have Type 1. If doctors don’t order antibody tests, patients can ask them to do so.”
Author and certified diabetes educator Gary Scheiner, also based in Philadelphia, agrees with Dr. Levetan’s assessment about the importance of testing for antibodies. “Many Type 1’s go into a ‘honeymoon’ phase [a phase during which their pancreas once again becomes able to secrete insulin] after diagnosis, so it can seem like oral medications are working initially,” he says. “Another important piece of information in getting the right diagnosis is testing for ketones in the urine or blood, because people with Type 2 rarely become ketotic.”
The guidelines for diagnosing Type 1 diabetes in adults put out by the National Guideline Clearinghouse (an initiative of the Agency for Healthcare Research and Quality) also mention that Type 1 diabetes should be suspected if a person has lost a significant amount of weight or if the person does not have features of the metabolic syndrome, such as low high-density lipoprotein (HDL, or “good”) cholesterol, high blood pressure, or a high triglyceride (blood fat) level. (People with Type 2 diabetes very often have features of metabolic syndrome.)
Getting good medical care Beyond diagnosis, adults living with Type 1 diabetes may face another challenge: finding a doctor who has as much knowledge about diabetes as they have. Many adults who have been living with Type 1 diabetes since childhood have become experts over the years, both by learning as much as they can about managing their condition, and by simply carrying out their own self-care year after year. These adults — as well as those diagnosed later in life — seek out physicians who have just as much information and insight as they do, sometimes without success.
For Douglas Deatrick, a 40-year-old who has been living with Type 1 diabetes since age 9, a good endocrinologist can be hard to find, but a good primary-care doctor or internist is even harder. According to Deatrick, “There has not been one [family doctor] who is willing to just take care of the regular stuff, and they all think they can manage my diabetes for me. My first question is ‘What is Symlin?’ When they don’t know it, I just leave.”