Rapid onset Type 1 diabetes in childhood gets the most visibility; it affects about 15,000 children per year in the United States (Footnote 1). Slowly progressive Type 1 diabetes (aka LADA (latent autoimmune diabetes in adults)) is now garnering much more attention, mostly in medical research journals but now more frequently in mainstream publications. Slowly progressive Type 1 diabetes (LADA) represents the vast majority of all new cases of Type 1 diabetes annually; new-onset LADA affects about 145,000 adults per year, or about 10% of new cases of “Type 2” diabetes in the United States (Footnote 2). But what about the adults with acute-onset Type 1 diabetes, who actually outnumber those children with new-onset Type 1 diabetes (Footnote 3)? Tragically we are overlooked, ignored, and still usually misdiagnosed as Type 2 diabetes based on age not etiology.
I experienced acute-onset Type 1 diabetes at age 35, but was misdiagnosed by the hospital’s on-call endocrinologist as having Type 2 diabetes, based on age not phenotype. Fortunately, I only remained misdiagnosed for one week. I recently polled members of TuDiabetes (thanks to all who responded!), and here are some select stories and commentaries about acute-onset Type 1 diabetes, and what the adult with T1D wishes medical practitioners understood:
- At age 30, soon after she retired as professional ballet dancer, Artwoman was misdiagnosed as having Type 2 diabetes and told by her doctor to lose weight (at 5’6” tall, Artwoman weighed less than 100 pounds) and exercise more. Her doctor scolded her when the “lifestyle changes” that he ordered did nothing for her, because in her doctor’s mind the problem was that Artwoman was not following his directives. Artwoman went into diabetic ketoacidosis, lapsed into a coma, and thankfully was found by friends and rushed to the emergency room. Initially in the emergency room the doctors accused her of not following her treatment protocol thereby bringing DKA upon herself, until they called in an endocrinologist who realized she had been misdiagnosed and given incorrect treatment. In the ER, the endocrinologist correctly diagnosed Artwoman as having Type 1 diabetes.
- Parrformance, a competitive bicyclist, was misdiagnosed as having Type 2 diabetes at age 42. Others advised Parrformance to get autoantibody testing, which his doctor initially refused to perform. Finally, when his doctor reluctantly ordered the autoantibody tests and the tests came back positive, his doctor sent him a letter via snail mail saying he “might” have Type 1 diabetes. Parrformance was denied insulin for 12 months.
- 2hobbit1 was hospitalized in DKA at the age of 60, but incorrectly diagnosed as having Type 2 diabetes strictly based on age, not etiology. 2hobbit1 was fit, active, normal weight, and displayed extreme sensitivity to insulin in the ER. Six months prior to hospitalization, 2hobbit1’s fasting blood glucose was 74 mg/dl at a health screening, indicating that her diabetes onset was rapid. 2hobbit1 says, “If I had followed my hospital discharge instructions I would probably be dead” and “Clinicians need to be brought up to date on the incidence of Type 1 diabetes in adults. They need to look at the whole picture. Emergency room doctors especially need to use their brains not just a blindly follow a Standard Operating Procedure (SOP).”
- Sensorium, misdiagnosed at age 22, says, “I hope that more medical professionals realize how misdiagnosing adults with type 2 diabetes instead of type 1 can be dangerous and carries a very significant mental and physical toll on the newly diagnosed diabetic.”
- Sheepdogs said, “I was initially misdiagnosed as a Type 2 diabetic. By the time I was finally correctly diagnosed as having Type 1 diabetes, I had already developed diabetic complications. I want medical professionals to admit if they lack knowledge about diabetes and to be able to refer people to appropriate resources if this is the case. This is not a disease that should be taken lightly. As a result of my mistreatment by the healthcare field, I don’t trust anyone anymore.”
In polling members of TuDiabetes, I was struck by the degree to which the medical community downplays the seriousness of adult-onset Type 1 diabetes. Children with new-onset Type 1 diabetes are given due respect; yet all too often adults are told they don’t even deserve correct diagnosis and treatment. This perception is slowly changing—The Type 1 Diabetes Sourcebook (ADA/JDRF, 2013) recognizes the seriousness of adult-onset Type 1 diabetes and the need for correct diagnosis and appropriate treatment. Dr. Steven Edelman, founder of Taking Control of Your Diabetes (TCOYD), advocates correct diagnosis and treatment, and at the medical education lectures that Dr. Edelman gives around the United States he encourages medical practitioners to look out for LADA patients and order autoantibody testing. Slowly, the tide is turning.
Foonote 1: SEARCH for Diabetes in Youth, research sponsor U.S. Centers for Disease Control and Prevention (CDC).
Footnote 2: This is an estimated number based on 37 years of autoantibody testing that indicates that approximately 10% of people diagnosed with “Type 2” diabetes are autoantibody positive and by definition have Type 1 autoimmune diabetes. Michael J. Haller MD, in Type 1 Diabetes Sourcebook (ADA/JDRF, 2013), says “Importantly, adults with LADA may represent an additional 10% of those adults incorrectly diagnosed with Type 2 diabetes.” The first study that demonstrated that about 10% of people with “Type 2” diabetes are autoantibody positive was published in The Lancet in 1977, now 37 years ago (Irvine WJ, Gray RS, McCallum CJ, Duncan LJP: Clinical and pathogenic significance of pancreatic-islet-cell antibodies in diabetics treated with oral hypoglycaemic agents. Lancet1 :1025–1027,1977). In the United Kingdom Prospective Diabetes Study (UKPDS), about 10% of people diagnosed with “Type 2” diabetes were autoantibody positive and had been misdiagnosed.
Footnote 3: The U.S. Centers for Disease Control and Prevention’s (CDC’s) most current information on the prevalence and incidence of Type 1 diabetes comes from Diabetes in America, Chapter 3, “Prevalence and Incidence of Insulin-Dependent Diabetes” (Diabetes in America, Second Edition, 1995). Although people who use that reference as a source of incidence statistics state that there are about 30,000 new cases of Type 1 diabetes each year and that half of those cases are children; in fact, that source states that children (<20 years of age) account for 13,171 cases and adults (>20 years of age) account for 16,542 cases, for a total of 29,713 new cases of Type 1 diabetes per year, 56% seen in adults. Thus, new cases of acute-onset T1D in adults exceed new cases of acute-onset T1D in children. Additionally, that source states that there is an unknown number of adults identified as having Type 2 diabetes who have slowly progressive Type 1 diabetes.