This week (October 18-24) is LADA Awareness Week. I prefer “Awareness of Adult-Onset Type 1 Diabetes” Week but that is cumbersome. Many adults with new-onset Type 1 diabetes, myself and TuDiabetes founder Manny Hernandez included, were misdiagnosed as having Type 2 diabetes, a fundamentally different disease. I had rapid-onset Type 1 diabetes with DKA (diabetic ketoacidosis) at age 35, and was misdiagnosed, and Manny’s Type 1 diabetes came on more slowly, and he was misdiagnosed. The consequences of misdiagnosis typically are that the person is undertreated, and this can result in needless suffering due to high blood sugars, rapid onset of diabetic complications, and at the most extreme death due to DKA. Adult-onset Type 1 diabetes/LADA represents about 75% of all cases of Type 1 diabetes, yet the myth that Type 1 diabetes is a childhood disease lives on.
In an Australian survey, one third of those with Type 1 diabetes had been initially misdiagnosed as having Type 2 diabetes. Kate Gilbert, Founder and President of The Type 1 Diabetes Network in Australia, says, “Healthcare professionals need to consider Type 1 diabetes when adults present with relevant symptoms rather than dismiss the possibility due to the patient’s age. The myth of juvenile diabetes means adults are being misdiagnosed and put in unnecessary danger. Australia has a forgotten group of Type 1 diabetics, those who are first diagnosed as adults and often receive little support or given support that is geared towards children and don’t necessarily fit their needs.” People with adult-onset Type 1 diabetes who initially were misdiagnosed as having Type 2 diabetes, strictly due to age not etiology, include Manny Hernandez, Amy Tenderich (diabetesmine.com), professional surfer Rob Blase, author June Biermann, actress Elizabeth Perkins, and prima ballerina Zippora Karz.
Doctors have been very slow to recognize the prevalence of adult-onset Type 1 diabetes, and I believe there are several factors involved, most completely unrelated to medical science. Factors include:
(1) Politics: The leading diabetes organization in the United States, the American Diabetes Association (ADA), focuses primarily on Type 2 diabetes, which naturally deserves significant attention. However, ADA focuses on Type 2 at the expense of Type 1 diabetes. ADA describes LADA as “rare” and also puts a lot of emphasis on the rarity of Type 1 diabetes (if people with adult-onset Type 1 diabetes are appropriately included in the statistics for Type 1 diabetes, it is not so rare). A person with Type 1 diabetes who worked for ADA for 12 years wrote to me, “Type 1 diabetes is the same in adults as it is in kids and, because it more commonly occurs in kids, used to be called "juvenile diabetes". In the scheme of things there are relatively few people with adult onset type 1 diabetes. The American Diabetes Association is a very reputable organization and only embraces information and treatments that have been proven by stellar research or have been scrutinized and agreed upon by panels of the country's top diabetes specialists (sometimes including international specialists).”
(2) Lack of Appropriate Diagnostic Criteria: diagnostic criteria for diabetes mellitus is based on fasting plasma glucose without any differentiation between Type 1 diabetes, Type 2 diabetes, MODY (maturity onset diabetes of the young), and other forms of diabetes. The gold standard for identifying if a person with diabetes has Type 1 autoimmune diabetes is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies), yet this is not part of the diagnostic criteria. Doctors will frequently say that the testing is too expensive, yet the out-of-pocket expense is $471, and that cost is a tiny fraction of the expense of DKA treatment or any diabetic complication.
Medical personnel will often react to information about people with adult-onset Type 1 diabetes with bizarre vehemence, irrationally insisting that is simply not possible for anyone to have new-onset Type 1 diabetes over the age of 30 (no matter that Mary Tyler Moore was diagnosed with Type 1 diabetes at age 33 and Dr. Kenneth Moritsugu, former acting U.S. Surgeon General, was diagnosed at age 49). My sister’s medical chart at UCLA Medical Center states that she has an immediate family member with Type 2 diabetes (no one in our family has Type 2 diabetes) because a nurse insisted it was not possible that I acquired Type 1 diabetes at age 35.
Even prominent diabetes researchers will downplay the prevalence of adult-onset Type 1 diabetes and become apoplectic if you suggest that adult-onset Type 1 diabetes is more prevalent than childhood-onset Type 1 diabetes. Dr. Jay Skyler (Diabetes Research Institute) insists that the peak age of diagnosis is 14 for all people with Type 1 diabetes, yet that is statistically impossible if the majority of people are diagnosed over the age of 20.
To try to get to the heart of the matter, I discussed the problem of misdiagnosis with my cousin, who is a family practice doctor. She has practiced medicine primarily in the United States, but on sabbatical has also practiced medicine in remote areas of the Dominican Republic and Nicaragua. My cousin has diagnosed many people with adult-onset Type 1 diabetes, and she immediately orders antibody testing if a patient is thin or normal weight (or even has a few extra pounds) and has been losing weight. My cousin says that doctors these days have such limited time to spend with patients and truly listen. Doctors are barraged with information on Type 2 diabetes, and thus tend to focus in on that. Many patients come in to a doctor’s office and demand certain medications or tests, so when a patient “demands” antibody testing for autoimmune diabetes (GAD, ICA, IA-2) a doctor can balk. In medicine, it takes one generation to change mentality such as “Type 1 diabetes occurs only in children.” My cousin suggested that it is best to gently suggest to the doctor, “have you seen this AAFP (American Academy of Family Physicians) article about Type 1 diabetes in adults? I brought a copy. Do you think I might have adult-onset Type 1 diabetes? I have the following symptoms/characteristics that are described as typical of adult-onset Type 1 diabetes.” Personally, I think it is important to use the term “misdiagnosed” when someone who was diagnosed as having Type 2 diabetes in fact has Type 1 diabetes, since they are two different diseases (different genetics, causes, treatments, and potential cures). However, as my cousin points out this term causes doctors to freak out, so if you are a patient it is probably best to not use the term “misdiagnosis” with your doctor.
In closing, this has been my most challenging blog to write, because I find psychology to be complex and nebulous, and I cannot understand why a correct diagnosis and “First Do No Harm” is not foremost in doctors’ minds. I welcome input, insight, and clarity from TuDiabetes members.
 Latent Autoimmune Diabetes in Adults, or slow-onset Type 1 autoimmune diabetes.
 According to the U.S. Centers for Disease Control (CDC) (Diabetes in America, 1995), of the 30,000 people newly diagnosed with Type 1 diabetes each year, 57% are adults, and the CDC states that those numbers do not include newly diagnosed people with LADA. According to Jeff Unger MD (and many other diabetes researchers) typically 10% of people with “Type 2” diabetes are antibody positive and in fact have Type 1 diabetes (according to the Type 1 diabetes definition of the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus).
 DiaTribe Issue 14.
 Jeff Unger, MD. “Latent Autoimmune Diabetes in Adults.” American Family Physician. April 1 2010 Vol. 81 No. 7.