Letter to the President of the American Academy of Family Physicians (AAFP) on misdiagnosis (T1D misdiagnosed as T2D)

Many of the adults who are misdiagnosed as having Type 2 diabetes, when they actually have Type 1 diabetes, are misdiagnosed by family physicians. Unfortunately, there is little awareness in the medical community of adult-onset Type 1 diabetes, and the American Academy of Family Physicians guidelines Diabetes Mellitus: Screening and Diagnosis (2016) present incorrect information about adult-onset Type 1 diabetes. Below is a letter that I wrote in 2018 to the President of the American Academy of Family Physicians and the authors of Diabetes Mellitus: Screening and Diagnosis.

Dear Dr. Munger:

The vision of the American Academy of Family Physicians (AAFP) is to transform health care to achieve optimal health for everyone.  The mission of AAFP is to improve the health of patients, families, and communities by serving the needs of members with professionalism and creativity.

Those are admirable vision and mission statements, but they are not being applied to people with adult-onset Type 1 diabetes, who are too often incorrectly diagnosed by Family Physicians who are provided incorrect information and inadequate guidelines by AAFP.

First, let’s look at what respected endocrinologists say about the epidemic of adult-onset Type 1 diabetes being misdiagnosed as Type 2 diabetes, which is an altogether different disease:

• Dr. Irl Hirsch, a professor of medicine at the University of Washington and former chairman of the Professional Practice Committee of the American Diabetes Association, has described the misdiagnosis of adult-onset Type 1 diabetes as an “epidemic.” He blames a lack of awareness and insufficient medical training about diabetes as the reason why so many patients fall through the gaps. The problem is particularly frustrating because there is a simple blood test that can check for antibodies associated with Type 1 diabetes, which could easily be used in diagnosing patients.  Dr. Hirsch quickly orders autoantibody tests when he is unsure of the correct diagnosis (Footnote 1). In Dr. Hirsch’s busy clinic, they see approximately one new person per week who is misdiagnosed (diagnosed as Type 2 when the person actually has Type 1).
• Dr. Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York, says "Most of my [adult-onset Type 1 patients] have been misdiagnosed as having Type 2.  Once the right diagnosis is made the patient feels much, much better, but they are distrustful of doctors and who could blame them (Footnote 2)?"
• Dr. Regina Castro, an endocrinologist at the Mayo Clinic, estimates that anywhere between 10 to 30 percent of adults diagnosed with Type 2 diabetes each year may in fact have Type 1 diabetes.  Exactly how many adults with Type 1 diabetes are misdiagnosed each year in the United States is hard to track—in  2015, the year for which data is most recently available, 1.5 million adults were diagnosed with diabetes, which is how, even taking the conservative end of Castro’s estimate, one gets to the possibility that tens of thousands if not hundreds of thousands go misdiagnosed each year.  “It is under-recognized and more prevalent than we think,” says Dr. Castro (Footnote 3).
• Dr. Steve Edelman, the founder and director of Taking Control of Your Diabetes (TCOYD), had this to say about misdiagnosis, “Latent autoimmune diabetes in adults (LADA) is the most misdiagnosed area in diabetes. We [Steve Edelman, Jeremy Pettus, Tricia Santos] are primarily adult endocrinologists and see tons of folks who are misdiagnosed.” (Personal communication)

Probably the most notable person to be misdiagnosed is UK Prime Minister Theresa May.  At the age of 56, Prime Minister May was misdiagnosed as having Type 2 diabetes; about 6 months after the initial misdiagnosis, she was correctly diagnosed as having Type 1 diabetes (Footnote 4).

Next, let’s look at what the AAFP guidelines Diabetes Mellitus: Screening and Diagnosis (2016) say about Type 1 diabetes, and then see how the guidelines stand up against the evidence-based facts.

AAFP 2016: Type 1 diabetes is caused by autoimmune destruction of the islet cells of the pancreas, and onset is typically in childhood.

Fact:  Type 1 diabetes is not a childhood disease.  The incidence of autoimmune diabetes is about equal in almost all age groups; adult-onset Type 1 diabetes is more common than childhood-onset Type 1 diabetes (Footnotes 5 & 6).

AAFP 2016:  Type 1 diabetes patients typically present with an acute onset of symptoms.

Fact:  Onset of Type 1 diabetes can be rapid or slowly progressive, with those with slowly progressive Type 1 diabetes far outnumbering those with rapid onset.  The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus’s definition of Type 1 diabetes clearly encompasses all autoimmune diabetes, regardless of age (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults)”).  From The Type 1 Diabetes Sourcebook (ADA/JDRF 2013), “Adult [Type 1] patients can vary greatly at presentation, from a more acute picture, with DKA and marked hyperglycemia, to a more gradual course such as is often seen in latent autoimmune diabetes in adults (LADA).” 

AAFP 2016:  Some patients with latent autoimmune diabetes in the adult or Type 2 diabetes may have certain autoantibodies present making these tests less specific.

Fact:  By definition, those with LADA are autoantibody positive, and by definition of ADA and WHO, LADA is Type 1 diabetes.  Also by definition of ADA and WHO, "Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur."   In other words, if a person has been diagnosed with Type 2 diabetes but is autoantibody positive, the person has been misdiagnosed and in fact has Type 1a diabetes.  This makes autoantibody testing more specific, not less.

AAFP 2016:  Despite these concerns [AAFP:  that autoantibodies are not specific to Type 1 diabetes], the American Association of Clinical Endocrinologists recommend routine confirmation of Type 1 diabetes using autoantibody testing.

Fact:  As established above, AAFP’s arguments that autoantibody tests are “less specific” are not true.  In fact, autoantibody testing is used to establish the correct diagnosis for people with Type 1 diabetes, and is highly predictive.  Diabetes researcher R. David Leslie MD says, "The best way to identify autoimmune diabetes is to assess diabetes-associated autoantibodies [GAD, IAA, IA-2, ZnT8], which represent the only relevant categorical trait."  An American Diabetes Association position statement affirms, “Consider measurement of pancreatic autoantibodies to confirm the diagnosis of Type 1 diabetes (Footnote 7).”

AAFP 2016:  Additional testing to determine the etiology of diabetes is not recommended.  Additional research is required to determine whether further testing [autoantibody testing] to classify the etiology of diabetes improves patient outcomes.  In the meantime, additional testing is not routinely recommended.

Fact:  There is an epidemic of misdiagnosis (T1D misdiagnosed as T2D), and misdiagnosis can result in the rapid onset of diabetic complications and even death due to diabetic ketoacidosis (DKA).  The Type 1 Diabetes Sourcebook (ADA/JDRF 2013) makes it clear that Type 1 and Type 2 diabetes are fundamentally different diseases (Footnote 8).  Without a doubt, a correct diagnosis would improve patient outcomes.  I challenge you to name even one disease where an incorrect diagnosis improves patient care or outcomes; I don’t believe there is one.    

For a patient with symptoms of diabetes, their first source of care probably is a family practice physician/primary care doctor.  Sadly, many of those doctors rely on the incorrect assumption that an adult with an elevated blood glucose must have Type 2 diabetes; autoantibody testing is a way to get beyond that assumption and actually provide a correct diagnosis.  If a person is positive for any one autoantibody and has a fasting blood glucose above 125 mg/dl, by definition the person has Type 1 autoimmune diabetes.  An article in Diabetes Spectrum, whose authors are associated with a university pharmacy college and who routinely encounter misdiagnosed patients, states, “It is imperative to establish distinct practice guidelines for the diagnosis and treatment of LADA [adult-onset Type 1 diabetes] and for providers to recognize this clinical scenario as one that requires special testing (autoantibody testing) to establish a proper diagnosis and thus improve patient safety and treatment efficacy.  Incorrect diagnosis can delay proper treatment (insulin therapy), exposing patients to potential adverse effects from ineffective Type 2 drugs, slowing progress toward normoglycemia, and ultimately increasing the risk of long-term complications (Footnote 9).”

In an editorial in American Family Physician, Jeff Unger MD states, “Family physicians care for most patients in the United States with Type 2 diabetes and, therefore, should be aware that approximately 10% of these patients have LADA [slowly progressive Type 1 diabetes] (Footnote 10).” Dr. Irl Hirsch states that “in the primary care setting, adult-onset Type 1 diabetes is not on the physician’s radar or in their bandwidth; they see so many Type 2s and have so little time.”  For primary care doctors who believe they have never misdiagnosed a person, I would suggest they consider what often happens in these situations: the frustrated patient seeks a second opinion, finally receives an accurate diagnosis and appropriate care, and never returns to the primary care provider who misdiagnosed them in the first place.  In this situation, the patient loses trust in the healthcare system, and the doctor never knows the original diagnosis was wrong.

The adult presentation of Type 1 diabetes does not present a challenge for the diabetes classification system—it is simply Type 1 diabetes.  The problem is that some in the medical community cannot let go of the myth that “Type 1 diabetes is a childhood disease,” and many in the medical profession have a difficult time coping with the fact that the majority of new-onset Type 1a diabetes is actually seen in adults.  If it were simply accepted that new-onset Type 1 diabetes occurs at all ages and is most commonly seen in adults (Footnote 11), then there undoubtedly would be fewer misdiagnosed cases.  However, we do know that scientific communities can be surprisingly resistant to new ideas or data that do not fit the accepted model, in this case the “juvenile diabetes” model.

Medical doctors already know how to effectively treat Type 1 diabetes in children and teenagers; that excellence in care should also be applied to adults with new-onset Type 1 diabetes.  When a child is diagnosed with Type 1 diabetes, the medical community springs to action on the child’s behalf, because Type 1 diabetes is a serious, life-threatening disease.  Kids who are diagnosed with Type 1 diabetes are shown great compassion, and the disease is acknowledged to be profoundly life-altering; adults deserve that same consideration.  When people with adult-onset Type 1 diabetes are finally correctly diagnosed and correctly treated with exogenous insulin (Footnote 12), they express great relief, and are able to reclaim their lives.

I would encourage the American Academy of Family Physicians to be at the forefront of addressing this epidemic of misdiagnoses—that would truly transform health care and achieve optimal health in alignment with your vision and mission.

Footnote 1: Slate magazine, March 6, 2018.  “Type 1 Diabetes is No Longer Just for Kids.”  Amy Mackinnon, author.

Footnote 2: Wall Street Journal, August 7, 2012.  “Wrong Call:  The Trouble Diagnosing Diabetes.”

Footnote 3: Slate magazine, March 6, 2018.  “Type 1 Diabetes is No Longer Just for Kids.”  Amy Mackinnon, author.

Footnote 4: July 13, 2016 Medscape article “New UK Prime Minister Brings Spotlight to Type 1 Diabetes.” Simon Heller, MD, and Irl B. Hirsch, MD, authors.

Footnote 5: S.R. Merger, R.D. Leslie, and B.O. Boehm.  “The broad clinical phenotype of Type 1 diabetes at presentation.”  Diabetic Medicine 2012.

Footnote 6: Miriam E Tucker, “Half of All Type 1 Diabetes Develops after 30 Years of Age.”  Medscape, September 20, 2016.  [Note that this study found that 50% of people diagnosed with Type 1 diabetes were diagnosed older than 30 years (and the study subjects only went up to 60 years, so greater than 50% are diagnosed over the age of 30)]. The Medscape article is based on data presented September 16, 2016, at the European Association for the Study of Diabetes (EASD) 2016 Annual Meeting by Dr Nicholas JM Thomas, of the Institute of Biomedical and Clinical Science, University of Exeter Medical School, United Kingdom (later published as Frequency and phenotype of type 1 diabetes in the first six decades of life: a cross-sectional, genetically stratified survival analysis from UK Biobank. Lancet Diabetes Endocrinol. 2018 February; 6(2): 122-129).

Footnote 7: “Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association.”  Diabetes Care, June 16, 2014.  Jan L. Chiang, M. Sue Kirkman, Lori M.B. Laffel, and Anne L. Peters.

Footnote 8: “The pathophysiology of the two diseases [T1D and T2D] differ on a basic pathophysiologic level such that T1D is marked by insulinopenia while T2D is characterized by obesity, hyperinsulinemia, insulin resistance, and relative insulinopenia.” Page 104, The Type 1 Diabetes Sourcebook.

Footnote 9: “Recognizing and Appropriately Treating Latent Autoimmune Diabetes in Adults (LADA)” (Diabetes Spectrum 2016 Nov; 29(4):249-252).

Footnote 10: The first medical journal article that described the 10% of Type 2s who are autoantibody positive and in fact have Type 1 diabetes was “Clinical and pathogenic significance of pancreatic-islet-cell antibodies in diabetics treated with oral hypoglycaemic agents.”  The Lancet, Volume 309, No. 8020, p1025-1027, 14 May 1977.  Numerous subsequent studies, including the UKPDS, have confirmed the 10% figure.

Footnote 11: Miriam E Tucker, “Half of All Type 1 Diabetes Develops after 30 Years of Age.”  Medscape, September 20, 2016. 

Footnote 12: The Type 1 Diabetes Sourcebook (ADA/JDRF 2013) states, “For those presenting acutely as well as those presenting more indolently, starting insulin is the mainstay of therapy.”

Interview with Melitta in Accessible Yoga

My friend Nina Zolotow is an editor at the excellent blog Accessible Yoga (accessibleyoga.org). She interviewed me for the blog--here is the full transcript:

Melitta Rorty on Service, Social Activism, and Karma Yoga

After working with Jivana on Discussing the Yoga Path of Service with Jivana Heyman, I thought it would be a good idea to interview a friend of mine, Melitta Rorty, as an example of someone who practices service and karma yoga the way Jivana described it in that interview. Although many yoga practitioners perform service in the form of teaching yoga, there are many other ways you can provide service to your community as your karma yoga practice. In Melitta’s case, both her full-time day job and her after-hours volunteer work and social activism provide opportunities to deepen her karma yoga practice. —Nina 

Nina: Melitta, can you tell us a bit about yourself, including something about your yoga background and your interest in community service and social activism? 

Melitta: I have been practicing yoga regularly for more than 25 years. I did take a yoga class while in college, with an excellent teacher, but it just didn’t “grab” me then. When I sought out a yoga class at age 34, my moment of knowing that this yoga was for me was in that first Savasana—it was a moment of awakening, where I truly let go. More than 25 years later, I avidly practice and love yoga, and I added meditation to the mix. 

I became interested in community service at an early age, although I can’t tell you why. I assisted with Special Olympics at my high school, I was a co-president of a lesbian support group in college, and as a young adult I helped found the Rainbow Community Center of Contra Costa County, a non-profit LGBTQ+ organization which thrives to this day. 

My purpose in life, my true calling, came to me via a devastating medical diagnosis. In 1995, shortly after I had begun yoga classes, I became extremely sick due to the onset of Type 1 diabetes. I was hospitalized near death, in diabetic ketoacidosis. But because I was 35 years old, and Type 1 diabetes previously was wrongly labeled a “childhood disease,” I was misdiagnosed by the endocrinologist on call at the hospital as having Type 2 diabetes, an altogether different disease. I was taken off of the insulin that had saved my life and released from the hospital. I was given a prescription for a medication for Type 2 diabetes, which did nothing for me. I was sent to classes for Type 2 diabetes at the local diabetes center, which weren’t pertinent. 

Because I am a scientist, I studied the information provided to me about diabetes and realized that phenotypically I fit the textbook description of Type 1 diabetes and that I had no risk factors for Type 2 diabetes. So one week after I was hospitalized, I confronted my endocrinologist regarding the “Type 2 diabetes” diagnosis. To his credit, the endocrinologist admitted he made a mistake; I was put on exogenous insulin and given the diagnosis of Type 1 diabetes. Because of the horrible treatment I received when first (mis)diagnosed, I have worked ever since to change the perception that Type 1 diabetes is a childhood disease. It is not—it is far more prevalent in adults than children. Since my diagnosis, I have met numerous others with adult-onset Type 1 diabetes who were also misdiagnosed as having Type 2 diabetes. 

Also, when I was newly diagnosed, I was in extreme despair and believed that my life was ruined. But yoga saved my life then by allowing me some space and freedom from thoughts of my new diagnosis, and yoga continues to save my life today by helping me stay calm and focused despite the daily grind of self-care I must perform. I recommend yoga to anyone who has to live with the stress of chronic illness. 

Nina: What is your main focus these days as far as service?

Melitta: After being diagnosed with Type 1 diabetes, I realized that all the medical information was geared towards newly diagnosed children—there was nothing for adults and no acknowledgement that adults can be diagnosed with Type 1 diabetes, despite the fact that actor Mary Tyler Moore was diagnosed at age 33. I started acquiring whatever information and scientific studies I could find that mentioned adult-onset Type 1 diabetes, and I started writing to organizations such as the American Diabetes Association and the Juvenile Diabetes Research Foundation (now JDRF) to raise awareness of adult-onset Type 1 diabetes and to try to get them to change their materials that said that Type 1 diabetes is a childhood disease (note that ADA and JDRF have since updated and corrected their materials). 

Progress was glacial, and back then I had many medical doctors who became apoplectic when I challenged the conventional wisdom and who lashed out at me. But I persisted, in part because I kept meeting people who like me had been misdiagnosed and suffered terribly as a result. Misdiagnosis is serious, and can result in rapid onset of diabetic complications and even death due to diabetic ketoacidosis. In recent years, I started a blog, in part because I was so often challenged about the facts that I presented. My blog is adultt1diabetes.blogspot.com and my most popular post is "Melitta's Top Ten Tips for the Newly Diagnosed Person with Adult-Onset Type 1 diabetes." 

On Facebook groups and online resources for people with diabetes, I help people get correctly diagnosed by coaching them on how to speak with their doctors and get the autoantibody tests that can differentiate between Type 1 and Type 2 diabetes (Type 1 diabetes is an autoimmune disease and specific autoantibodies are indicative of the immune response.) Of course, I have a post about autoantibody testing! Quite a number of people, after they have gotten a correct diagnosis and treatment, have told me that this literally saved their lives. 

Nina: For many years, you’ve referred to your work in community service and social activism as your “karma yoga.” What does that mean to you? 

Melitta: I think I first read about karma yoga in something that yogic scholar Georg Feurstein wrote, and I said to you, Nina, “that is what I do.” Georg says that karma yoga is the yoga of self-transcending right action, and that its most important principle is to act unselfishly, without attachment, and with integrity. For me, that means I act in service to others, for a greater good, without regard to personal gain or being attached to a particular outcome. My most profound service is advocacy on behalf of people with adult-onset Type 1 diabetes. 

Nina: Is there any wisdom in the Bhagavad Gita that guides you as you follow this yoga path? 

Melitta: The Bhagavad Gita stresses selfless service without regard for the fruits of one’s actions, or the outcome. For me, not being attached to a specific outcome is essential—I follow specific actions, but I never know what the outcome will be. Because so much of what I do is online, my work is all the more challenging. I have coached people to advocate for themselves with their doctor, to request autoantibody testing to determine diabetes type, and many have subsequently been correctly diagnosed and treated with exogenous insulin. Many of those who I have helped have gone on to assist others who are newly diagnosed. Some people who I have coached are not willing to stand up to their doctors—to be their own best advocates within the medical system—and I have had to simply let go in those instances. Those situations are heartbreaking. In two cases I distinctly remember, the people kept insisting that they believed the doctor’s Type 2 diabetes diagnosis, and they both rapidly developed horrific diabetic complications, which are preventable if correctly treated. 

Nina: Is there any other yoga philosophy or practices that you find helpful? 

Melitta: Yoga philosophy has so much to offer us today, including practices that help us find equanimity, contentment, and focus, among many other benefits. Yoga and meditation include practices that help us distill down what is truly important and to be awake in this life. Yoga is a set of technologies, physical and mental, that can bring about self-transformation. Or, as I once said to you, Nina, when you questioned why we do yoga, “We practice yoga because it makes our lives better.” 

The self-care that yoga and meditation provide has been instrumental in my ability to persist in my efforts, despite the obstacles, setbacks, and attacks. As I mentioned, when I first started my diabetes advocacy more than 20 years ago, many medical doctors insulted me, dismissed me because I am merely a patient and not an MD, and declared I was wrong regarding the prevalence of adult-onset Type 1 diabetes and the importance of a correct diagnosis and correct treatment. I often had to retreat back into my practices to find respite. Thankfully, now that the “patient voice” is more valued within medicine, these attacks have lessened. Online, I frequently experience misogyny from men engaging in personal attacks for my voicing my science-based positions. In part, I use so many scientific references to support my posts because of these attacks. I have used Sharon Salzberg’s audio loving kindness meditation, among other practices, to try to regroup after these incidents. 

Nina: It seems me that in your day job, the job you’re doing now to earn a living, you’re also performing karma yoga. Can you tell us a bit about this work and how it is a form of service? 

Melitta: My background is in geology and environmental science, and for my paid work, I manage large, complex environmental cleanups. Yes, cleaning up the environment is so important, but it can also be disruptive to a community because the cleanups are big construction projects. Most often, I am working with members of the community who have questions and concerns, and it is essential that I listen and understand their concerns. That way, they are heard and I can take measures to work with them and alleviate their concerns. Sometimes I encounter members of the public who are angry, and I use yogic practices of centering to stay calm and present and try to work with them, but some still remain angry. Every day, I strive to act with integrity, let go of the outcome, and serve the community. 

This post was conducted and edited by Nina Zolotow, co-editor of the Accessible Yoga blog.