The Problem

It is time that the full scope of Type 1 diabetes is acknowledged, which includes millions of adults who are too frequently misdiagnosed as having Type 2 diabetes, an altogether different disease.

Friday, November 4, 2016

Most New-Onset Type 1 Diabetes Occurs in Adulthood: It is Time to Dispel the Myth that Type 1 Diabetes is a Childhood Disease

The Short But Sweet Summary

The Longer Tale

New-onset Type 1 diabetes in adulthood[4] is far more prevalent than childhood-onset Type 1 diabetes, but the myth that Type 1 diabetes is a childhood disease combined with the rising epidemic of Type 2 diabetes often means that adults with new-onset Type 1 diabetes are incorrectly diagnosed as having Type 2 diabetes, an altogether different disease.  The myth that Type 1 diabetes is a childhood disease is a dangerous myth; for adults, the misconception can lead to misdiagnosis and the potential for rapid onset of diabetic complications and, in the most extreme cases, death due to diabetic ketoacidosis (DKA).

  • In about 100 C.E., Aretaeus of Cappadocia provided the first detailed description of diabetesAretaeus of Cappadocia clearly described what is now called Type 1 diabetes (polyuria, polydipsia, rapid weight loss and swift death), and his descriptions were of adults.  In Principles of Diabetes Mellitus, 2nd Edition (Leonid Poretsky, MD, Editor), the authors in Chapter 1 write:  “A medical condition producing excessive thirst, continuous urination, and severe weight loss has interested medical authors for over three millennia.  Unfortunately, until the early part of the twentieth century the prognosis for a patient with this condition was no better than it was over 3000 years ago.  Since the ancient physicians described almost exclusively cases of what is today known as Type 1 diabetes mellitus [emphasis mine], the outcome was invariably fatal.”
  • In 1934, Dr. Elliott Joslin noted that the incidence of diabetes in lean individuals was relatively constant in each decade of life, but that diabetes in the obese was related to older age.
  • A book published in 1958 (“How to Live with Diabetes” by Henry Dolger, M.D. and Bernard Seeman) states that “[Type 1] diabetes is almost three times more frequent among young adults than among youngsters.”

And as stated in the short but sweet summary above, the CDC documents that the majority of new onset Type 1 diabetes develops in adults; numerous studies since the first published in 1977 provide evidence that ~10% of cases of “Type 2” diabetes are in fact Type 1 diabetes, based on autoantibody testing (GAD, IA-2, IAA, and ZnT8); and researchers using genetic data have shown that the majority of new-onset Type 1 diabetes occurs in adults.

Well-known people who were diagnosed with Type 1 diabetes as adults include actress Mary Tyler Moore (diagnosed at age 33), former acting Surgeon General Dr. Kenneth Moritsugu (age 49), Olympic swimmer (10 Olympic medals) Gary Hall, Jr. (age 24), and United Kingdom Prime Minister Theresa May (56).  UK Prime Minister Theresa May is the first world leader with Type 1 diabetes; she was diagnosed with diabetes when she was 56 years old, however, she was initially misdiagnosed as having Type 2 diabetes.

My personal mission is raise awareness of adult-onset Type 1 diabetes, both rapid onset (which I experienced) and slowly progressive, to make sure no one else is ever misdiagnosed because of a myth.  Type 1 diabetes is diagnosed at all ages, it is not a childhood disease, and it is important that patients receive a correct diagnosis and treatment. The correct treatment for Type 1 diabetes, at whatever age it is diagnosed, is exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, reduce the possibility of diabetic complications, and prevent death from DKA.  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. Yet often it appears that adults are not shown the same respect.  For patients with adult-onset Type 1 diabetes, the person should be correctly diagnosed, treated with exogenous insulin, acknowledged as having a life-threatening disease, and treated with compassion.

[1] 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.  Furthermore, that source states that there is an unknown number of adults identified as having Type 2 diabetes who have slowly progressive Type 1 diabetes.
[2] Irvine WJ, McCallum CJ, Gray RS, Duncan LJP (1977) Clinical and pathogenic significance of pancreatic islet cell antibodies in diabetics treated with oral hypoglycaemic agents. Lancet 1: 1025–1027.
[3] Miriam E Tucker, “Half of All Type 1 Diabetes Develops after 30 Years of Age.”  Medscape, September 20, 2016.
[4] Type 1 diabetes in adults can be acute-onset or slowly progressive.  Slowly progressive Type 1 diabetes is sometimes called latent autoimmune diabetes in adults (LADA).  More recently, diabetes researchers have discouraged the use of the term latent autoimmune diabetes in adults, because LADA is not a latent disease.  All people with immune-mediated destruction of the beta cells of the pancreas have autoimmune diabetes, classified by the Expert Committee on the Diagnosis and Treatment of Diabetes Mellitus as Type 1 diabetes.

Sunday, July 24, 2016

Theresa May: World Leader with Adult-Onset Type 1 Diabetes (Who was Misdiagnosed)

Theresa May became Prime Minister of the United Kingdom in July 2016; she is the first major world leader to have Type 1 diabetes.  Ms. May was 56 years old in November 2012 when she was first diagnosed as having diabetes, but, as so many of us with adult-onset Type 1 diabetes have experienced, she was initially misdiagnosed as having Type 2 diabetes, an altogether different disease.[1]  Ms. May was correctly diagnosed as having Type 1 diabetes around May 2013, when the medication for Type 2 diabetes she was given did not work and she went for further tests that confirmed that she in fact had Type 1 diabetes.  Thus, Ms. May spent about 6 months misdiagnosed and receiving incorrect treatment for the disease that she has.  Ms. May said, “My very first reaction was that it’s impossible because at my age you don’t get it,” reflecting the misconception that only younger people get diagnosed with Type 1 diabetes.

A July 13, 2016 Medscape article on Theresa May “New UK Prime Minister Brings Spotlight to Type 1 Diabetes” sheds light on adult-onset Type 1 diabetes and the problem of misdiagnosis.  Two endocrinologists who specialize in type 1 diabetes, Simon Heller, MD, professor of clinical diabetes at the University of Sheffield, United Kingdom, and Irl B. Hirsch, MD, professor of medicine at the University of Washington, Seattle (Dr. Hirsch has Type 1 diabetes), offered Medscape Medical News their thoughts on Ms. May's type 1 diabetes.  Here are some nuggets from the Medscape article:

  • Ms. May's story provides an important message to clinicians to consider the diagnosis of Type 1 autoimmune diabetes in adults whose clinical pictures do not fit those of classic type 2 diabetes.
  • Ms. May was initially misdiagnosed with type 2 diabetes — a common occurrence in those who develop Type 1 autoimmune diabetes in adulthood.[2]
  • At the time Ms. May was diagnosed, much was said about how unusual her age was at diagnosis of type 1 diabetes. But actually, half of all people with autoimmune diabetes are diagnosed after age 18 years, and initial appearance in people in their 40s, 50s, and even older is not as rare as many medical textbooks claim.  Dr. Hirsch says his oldest new-onset type 1 diabetes patient was 92, and Dr. Heller recently saw a new-onset type 1 diabetes patient in her late 50s with diabetic ketoacidosis (DKA).
  • Unfortunately, like Ms. May, many adults with new-onset autoimmune diabetes are initially misdiagnosed with type 2 diabetes by primary-care clinicians, who simply write a metformin prescription when they see high blood sugar without appreciating other clues such as excessive weight loss without trying, extreme thirst, frequent urination, and a family history of not only type 1 diabetes but other autoimmune conditions including celiac and thyroid disease.  For such patients — or those who aren't heavy to begin with, although obesity doesn't rule out type 1 diabetes — ordering an autoantibody panel [GAD, IA-2, IAA, and ZnT8] will help in making the correct diagnosis, both experts said.
  • C-peptide levels are not a good indicator to distinguish between the diabetes types, Dr. Hirsch said, noting that data from his team suggest that people with older-onset type 1 diabetes may have more residual C-peptide function, which may confound their diagnosis but also make them less vulnerable to hypoglycemia.  "When diagnosed with type 1 later in life, patients may continue to make a little endogenous insulin and that makes diabetes easier to control — they don't have giant swings or a big risk of low blood glucose levels."

 And although many sources, such as this Medscape article, say that half of all cases of Type 1 diabetes are seen in adults, that statistic does not include the large number of people such as Ms. May who are misdiagnosed as having Type 2 diabetes.  In many studies published since the first one in The Lancet in 1977[3], about 10% of people diagnosed with Type 2 diabetes have the autoantibody markers for Type 1 diabetes and have been misdiagnosed. In the United Kingdom Prospective Diabetes Study (UKPDS), about 10% of people diagnosed with “Type 2” diabetes were found to be autoantibody positive and had been misdiagnosed.  Another credible source is “The Type 1 Diabetes Sourcebook” (ADA/JDRF 2013), in which Michael Haller MD states, "Adults with LADA [latent autoimmune diabetes in adults or slowly progressive Type 1 diabetes][4] may represent 10% of those adults incorrectly diagnosed with Type 2 diabetes.  Clinicians treating adults must be aware of the need to screen for LADA, particularly in their patients with relatively low BMI."[5]

I have hope that Ms. May’s initial misdiagnosis, and her age at diagnosis, will help to dispel myths about Type 1 diabetes and perhaps lead to more people with adult-onset Type 1 diabetes receiving the correct diagnosis and treatment.

[1] Sue Kirkman MD, professor of medicine at University of North Carolina and one of four authors of the American Diabetes Association position statement “Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association” (Diabetes Care 2014; 37:2034–2054) says “Type 1 diabetes is a completely different disease than Type 2 and needs to be treated as such.”

[2] The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (ADA/WHO), as published in American Diabetes Association medical journals, says, "Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur."  The Expert Committee’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)).”

[3] Irvine WJ, McCallum CJ, Gray RS, Duncan LJP (1977) Clinical and pathogenic significance of pancreatic islet cell antibodies in diabetics treated with oral hypoglycaemic agents. Lancet 1: 1025–1027.  In the Lancet study, 11% of study subjects were autoantibody positive.  One conclusion of the study, “We believe that ICAb-positive diabetes controlled by oral hypoglycemic agents [O.H.A., medications for Type 2 diabetes] is an earlier stage in the same disease process (type 1 diabetes) that culminates in insulin-dependency.”

[4] Type 1 diabetes in adults can be acute-onset or slowly progressive.  Slowly progressive Type 1 diabetes is sometimes called latent autoimmune diabetes in adults (LADA) or Type 1.5 diabetes.  More recently, diabetes researchers have discouraged the use of the term latent autoimmune diabetes in adults, because LADA is not a latent disease.  From The Type 1 Diabetes Sourcebook, “We consider all patients with evidence of autoimmunity to have Type 1 diabetes.”

[5] The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus states, “Although patients are rarely obese when they present with Type 1 diabetes, the presence of obesity is not incompatible with the diagnosis.”

Sunday, April 24, 2016

A Field Guide to Identifying the Misdiagnosed Person with Type 1 Diabetes

They are adults who come in droves to the diabetes online community, they write about how they are puzzled how they got Type 2 diabetes, when they are young and thin and athletic[1].  Sometimes they are middle-aged and no longer at fighting weight.  Sometimes they are older or elderly.  They have been given Type 2 oral medications to control their blood sugar, but the oral meds are not working despite a very low carbohydrate diet and lots of exercise.  They may mention that they have autoimmune diseases such as Hashimoto’s Disease (hypothyroidism) or celiac disease, and that autoimmune diseases run in their families, and that their grandmother/fill-in-the-blank had Type 1 diabetes.  Their health is deteriorating, but their doctors just insist that they are not correctly following the doctor’s prescribed program.  Before there was a diabetes online community, I met these same people (people with diabetes or PWDs) at other diabetes-related events.  Some of them already had serious complications.  Who are these people and what is going on?

Who are these people?  These people are misdiagnosed Type 1 diabetics.  They have been misdiagnosed as having Type 2 diabetes, when in fact they typically have Type 1 autoimmune diabetes (sometimes called LADA (latent autoimmune diabetes in adults) or Type 1.5).  But because they are adults, and because doctors have bought into the myth of Type 1 being a childhood disease, they have been given a Type 2 diagnosis strictly because of age not etiology.  And it is not just people with slowly progressive Type 1 diabetes who are misdiagnosed:  even adults with rapid-onset Type 1 diabetes presenting in diabetic ketoacidosis (DKA) get misdiagnosed.  Type 1 diabetes and Type 2 diabetes are altogether different diseases, with different genetics, causes, treatments, and potential cures. The high blood sugars that result from trying and failing with pills for Type 2 diabetes, on a person who in fact has Type 1 diabetes, causes agony and suffering, not to mention hastening the complications of diabetes and potentially death due to DKA (diabetic ketoacidosis).  Another very dangerous situation is when the stress of pregnancy is “the straw that broke the camel’s back” and pushes a woman over the edge into overt Type 1 diabetes.  Most medical literature only associates gestational diabetes with Type 2 diabetes, yet fully 10% of women with GDM have the autoimmune markers for Type 1 diabetes.  Misdiagnosis can lead to fetal death.

What is going on?  Against all scientific evidence, many doctors insist on diagnosing an adult as having Type 2 diabetes when simple and relatively inexpensive testing (autoantibody testing (GADA, ICA, IA-2, IAA, ZnT8) at full price less than $1000) could give a definitive diagnosis.  The c-peptide test may be useful but is not definitive.  We are not talking about one incompetent doctor, one bad seed, who is misdiagnosing PWDs, we are talking about many, many doctors throughout the world.

Why do doctors and the medical community cling to the myth of Type 1 diabetes being a childhood disease, despite all evidence to the contrary, and despite the fact that misdiagnosis results in horrific suffering and terrible outcomes for human beings who could thrive if given the correct treatment?  What happened to the Hippocratic Oath (“First do no harm”)?  This is a question for a psychologist to answer, since the doctors are acting in opposition to all scientific and medical evidence.  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.  And here we are not talking about just a few people with adult-onset Type 1 diabetes, we are talking about three times [or more] the number of people with childhood-onset Type 1 diabetes[2].

Organizations such as the American Diabetes Association (ADA) remain part of the problem of the entrenchment of the myth that Type 1 diabetes is a childhood disease.  In the United States, ADA is the "go to" place when people want information on diabetes, including the mainstream media.  A prime example of the way that ADA does a terrible disservice to people with adult-onset Type 1 diabetes is on their website, where ADA states, “Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease.” Yet ADA’s “Diabetes Forecast” magazine had a recent article in which they discussed adult-onset Type 1 diabetes and the problem of misdiagnosis as Type 2 diabetes[3] and “The Type 1 Diabetes Sourcebook” published by ADA and JDRF in 2013 says that adult-onset Type 1 diabetes is more common than childhood-onset Type 1 diabetes, and says that about 10% of people with “Type 2” diabetes are misdiagnosed and have Type 1 diabetes.

If the diabetes online community can figure out what is going on and can help get people correctly diagnosed and correctly treated with insulin therapy, why can’t the medical community?  What is holding doctors back?

[1] Not all people with adult-onset Type 1 diabetes are young adults, Caucasian, thin, and athletic.  Those are just the people that are easier to identify.  Adult-onset Type 1 diabetes affects people of all ages, ethnicities, weights, and athletic abilities.
[2] Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.
[3] “Diagnosing Type 1 in Adults:  Why Type 2 Misdiagnoses Abound, and What You Can Do About It” Diabetes Forecast, September 2015.

Sunday, January 31, 2016

Yoga and Diabetes: Seeking Balance

Note: An abbreviated version of this blog was published by Rachel Zinman on her excellent website Yoga for Diabetes.

I started practicing yoga in 1994, six months before I noticed my first symptoms of diabetes. When I was newly diagnosed with Type 1 diabetes, at the age of 35, I was in extreme despair—I thought my life was ruined. But yoga saved my life then by allowing me some space and freedom from constant thoughts about my disease, and yoga continues to save my life today by helping me stay calm and focused despite the daily grind of self-care that those of us with Type 1 diabetes must do. I recommend yoga to anyone who has to live with the stress of chronic illness.

Yoga is a practice that uses poses, breathing techniques, relaxation, and meditation to balance mind, body, and spirit. In the West, hatha yoga, which involves stretching the body and forming different poses while keeping breathing slow and controlled, is most commonly practiced.  Yoga has much to offer people with diabetes, and probably its greatest benefit is stress reduction.  Diabetes is exacerbated by stress, and yoga is a useful tool to reduce stress.  It can both set the stage for better overall health and also reduce the stress associated with the myriad of details necessary for our daily diabetes care.  High levels of the stress hormones adrenaline and cortisol raise blood glucose levels, and thus reducing stress is integral to good blood glucose control.  Yoga cannot cure diabetes, but the many benefits of yoga (stress reduction, increased sense of well-being, discipline, and focus) can help make the disease more manageable and have beneficial impacts on blood glucose control and on our lives.

For me, exercise, yoga, and meditation are my “magic pills.”  If only it were so easy as to pop a pill!  To give you an idea of my routine, I attend a weekly class with a wonderful, experienced teacher.  I also have a morning home yoga and meditation practice.  My simple back care yoga routine plus meditation gets my day off to a good start.  Yoga has an immediate physical and practical impact on my health but it also affords me an emotional benefit over time.  Below are some of my tips for practicing yoga with diabetes:

Asanas:  As with any physical activity, one must listen to and respect what your body tells you in the moment.  It can be risky to practice some poses, for example crow pose (bakasana), when you have low blood sugar or even close to low blood sugar.  Also, if you have diabetic complications such as retinopathy, many inverted poses are contraindicated.  This is where a good yoga instructor (or doctor or your own research) is worth his/her weight in gold.  Come to class early and don’t be afraid to talk with the teacher and ask questions.

Insulin pumps and continuous glucose monitors (CGMs):  I almost always turn my insulin pump down for yoga class.  I am a “blood sugar burner,” meaning physical activity drops my blood sugar significantly, and I need to be careful to avoid hypoglycemia.  I always have rapid-acting glucose handy.  For a particularly vigorous yoga class, I turn my pump down by 80% at least one hour prior to class and for the duration.  For my regular yoga class, I turn my pump down by 50% one hour prior to class and for the duration.  I place my CGM on a block or some other raised space so that no one steps on it.

Meditation:  Many people say that they can’t meditate because they can’t keep their minds still.  Thoughts end up swinging through their mind like monkeys swinging from branch to branch in the jungle.  But virtually everyone will have “monkey mind!”  The point is to meditate, to be mindful, and to be in the present moment.  I practice a very simple style of meditation, breath meditation or Insight Meditation; meditation teacher Sharon Salzberg is my guide and resource.  There are countless tools to help you with your meditation practice.  Just find a quiet space, and give it a try.  Even a moment of quieting your mind can bring you a sense of peace.

Magic Pixie Dust:  Sadly, within the yoga and meditation communities there can exist “magical thinking” that is harmful to those of us with Type 1 diabetes, or any other serious disease.  Yoga cannot cure us; yoga cannot get us off of exogenous insulin.  A yoga teacher once yelled at me in the middle of class and said “Why do you have to wear that [my insulin pump], why can’t you take it off for class, how can you do inverted poses with your insulin pump on?”  This kind of ignorance and lack of compassion can push people away from yoga when it could be a beneficial part of their healthy lifestyle.  Because of that incident, I now do more to inform yoga teachers about my Type 1 diabetes and the medical devices I use to manage it (insulin pump and continuous glucose monitor).  Before a recent yoga and meditation retreat, I let the teachers know I have Type 1 diabetes, and let them know that my devices are on vibrate mode, but still make some noise.  I received the most compassionate response.  Yoga should foster compassion within us and for others; teachers who truly care for their students demonstrate compassion and not judgment.

If you are new to yoga, the best way to start a yoga practice is to find a competent teacher with whom you feel comfortable, and whose style speaks to you.  Many yoga studios now offer Yoga Basics classes or an introductory yoga series of classes.  These “yoga training wheels” classes can be especially beneficial for those who have no experience with yoga, because even beginning classes can be too advanced for those just starting out.

About Type 1 diabetes:  Type 1 diabetes is an autoimmune disease in which an immune-mediated process destroys the beta cells of the pancreas (the insulin-producing cells are destroyed).  People with Type 1 diabetes depend on exogenous insulin for survival, and there is no cure.  Although Type 1 diabetes used to be called “juvenile diabetes,” it is now recognized that people of all ages acquire Type 1 diabetes, including the elderly.  More than 85% of people with Type 1 diabetes are adults.

Yoga and Meditation Resources:  There are so many excellent resources, but here are a few of my favorites:
  • Yoga for Healthy Aging Blog (; by my forever friend and yoga buddy, Nina Zolotow).
  • Moving Toward Balance:  8 Weeks of Yoga. Rodney Yee and Nina Zolotow.  Rodale, 2004.
  • The Yoga Tradition:  Its History, Literature, Philosophy, and Practice. Georg Feuerstein.  Hohm Press, 2001.  [This is a weighty book, if you want to delve deeper into the history and philosophy of yoga]
  • Real Happiness: The Power of Meditation.  Sharon Salzberg.  Workman Publishing, New York, 2011.
  • Yoga as Medicine: The Yogic Prescription for Health and Healing.  Timothy McCall MD. Bantam Dell, 2007.
  • Full Catastrophe Living:  Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness.  Jon Kabat-Zinn.  Bantam, 2013.
  • Excellent yoga classes, including classes taught by Tias Little, are available at YogaGlo (