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.

Saturday, April 14, 2018

Reporting on Carb DM SF Bay Area Type 1 Diabetes Summit

I was fortunate to once again be able to attend Carb DM's SF Bay Area Type 1 Diabetes Summit, held on March 25, 2018.  Carb DM does a remarkable job in getting the best speakers on Type 1 diabetes; this year was no exception.

The talk that I found most interesting was the keynote speaker, Yiduo Wu PhD from the U.S. Food and Drug Administration (FDA).  Dr. Wu heads the FDA's Diabetes Device Branch, where he has been instrumental in getting diabetes devices to the market faster, while taking a patient-centered approach.  With his team, Dr. Wu approved the first automated insulin delivery system, the Medtronic 670G.  I think even Medtronic was surprised by how quickly it was approved!  Notably, the FDA was able to approved a patient request in just one day--patients in the 670G clinical trials petitioned to be able to remain on the device, and one day later their request was approved.  That is a patient-centered focus.  Later, I was in the lunch line with Dr. Wu, and was able to personally thank him for his work and encouraged him to keep it up.  Two days after Dr. Wu presented to us, the FDA approved the Dexcom G6.  Wow!

Another speaker, Dr. David Maahs of Stanford, spoke about the progress being made with automated insulin delivery devices (AKA the artificial pancreas).  I ran into Dr. Maahs as I was headed for another program, and had a brief conversation where I thanked him for his work, and told him that when I was diagnosed I never imagined I would see this kind of progress in my lifetime.  Dr. Maahs said, "We are in the golden age of Type 1 diabetes."

I attended breakout sessions on exercise for adults with Type 1, and a session on diabetes apps by MySugr's Kyle Rose.  Exercise has always been my biggest challenge, where I have the most problem with lows.  The exercise panelists represented a broad range of exercise types, and their tips were useful.

A big help for me always is the vendor fair.  I bought the perfect Dexcom G5 receiver case from Too Sweet Boutique--I like to clip my receiver to my pant loop when exercising and now have the perfect case.  I also spent a lot of time talking with the Dexcom rep, as I have just moved to the G5 and wanted information; I also spent a lot of time talking with the Tandem T:slim rep, as I have an Animas pump and will need to move to a new system soon.

Kudos to the founder and executive director of CarbDM, Tamar Sofer-Geri (mom to a T1 child) and her team for this excellent conference!  Next year's Summit will be held on Sunday, April 14, 2019.

Thursday, March 8, 2018

Letter to Kevin Hagan, CEO, American Diabetes Association

I wrote this letter to Mr. Hagan in 2016.  I never received a reply, and the ADA’s website has not been updated to reflect current knowledge of Type 1 diabetes, especially adult-onset Type 1 diabetes.

The American Diabetes Association (ADA) fights against the deadly consequences of diabetes and fights for those affected by diabetes.  It also strives to provide objective and credible information related to both Type 1 and Type 2 diabetes.  Currently the ADA is providing contradictory information around the prevalence of new-onset Type 1 diabetes in adults.  As ADA strives to be the preeminent voice for those of us living with diabetes, it is imperative that the information put out by the ADA be scientifically correct, factually accurate, and most importantly consistent.

By virtue of the ADA website and in information ADA provides to media sources, ADA perpetuates the myth that Type 1 diabetes is typically diagnosed in children and young adults.  Simultaneously, ADA’s scientific literature correctly identifies a large group of adults who are misdiagnosed as having Type 2 diabetes but who actually have Type 1 autoimmune diabetes, based on autoantibody testing, and in fact represent the largest group of new-onset Type 1 diabetes.  For example, the ADA website says, “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.”  And this is the same information that ADA provides to media when they seek statistics on Type 1 diabetes.  Conversely, in ADA’s The Type 1 Diabetes Sourcebook (ADA/JDRF, 2013), Michael J. Haller MD says that adults with slowly progressive Type 1 diabetes (Footnote 1) may represent an additional 10% of those adults incorrectly diagnosed with Type 2 diabetes. 

The first study that demonstrated that about 10% of study subjects with “Type 2” diabetes were autoantibody positive and actually had Type 1 diabetes was published in The Lancet in 1977 (Footnote 2).  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.  If ~10% of people diagnosed with “Type 2” diabetes are misdiagnosed and actually have Type 1 diabetes, as pointed out in ADA’s own The Type 1 Diabetes Sourcebook, then the vast majority of new-onset Type 1 autoimmune diabetes is seen in adults, not children; this fact has been widely reported in the scientific literature (Footnote 3).

Within the past several years, awareness of misdiagnosis has increased, and articles about the problem of misdiagnosis have been published in The Wall Street Journal, Prevention, and ADA’s Diabetes Forecast.  As stated in a Wall Street Journal article on the problem of misdiagnosis (“Wrong Call: The Trouble Diagnosing Diabetes,” August 2012), "Most of my adult Type 1 patients have been misdiagnosed as having Type 2," says Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York.  The Diabetes Forecast article was entitled “Diagnosing Type 1 in Adults: Why type 2 misdiagnoses abound—and what to do about it.” Sept/Oct 2015.

New United Kingdom Prime Minister Theresa May is a prime example of a person with adult-onset Type 1 diabetes who in 2012 was initially misdiagnosed as having Type 2 diabetes, based on age not etiology; Prime Minister May was 56 years old when first (mis)diagnosed.  A 13 July 2016 Medscape article on Prime Minister 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.  Heller and Hirsch say that unfortunately, like Ms. May, many adults with new-onset autoimmune diabetes are initially misdiagnosed with type 2 diabetes by medical doctors, 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 does not 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.

Kevin, as the CEO of the ADA, it is your responsibility to ensure the information ADA provides is scientifically correct, factually accurate, and most importantly consistent.  Please change your website, and the information provided for media requests regarding Type 1 diabetes, to ensure that the information matches the scientific findings of your own organization.  The financial cost of misdiagnosis is massive but the human cost is immeasurable.  Misdiagnosis and not being treated immediately with exogenous insulin can result in rapid-onset of diabetes complications, diabetic ketoacidosis (DKA), and even death.  Every person deserves correct diagnosis and treatment; it is past time that this tragedy ends.  You can make this happen; it is as simple as making sure the voice of ADA clearly says, “Type 1 diabetes, an autoimmune disease, is diagnosed at all ages, from the very young to the very old.  About 15% of people with diabetes have Type 1 diabetes.”

Thank you for your consideration.  Those of us who were misdiagnosed and suffered the consequences, including me, want to be sure that that never happens to another human being.


Footnote 1:  Published in ADA’s journal Diabetes Care, The Expert Panel on the Diagnosis and Classification of Diabetes Mellitus’s definition of Type 1 diabetes clearly encompasses all autoimmune diabetes, regardless of age of onset, and includes LADA/slowly progressive Type 1 diabetes (“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)).”  The Type 1 Diabetes Sourcebook makes it clear that Type 1 diabetes and Type 2 diabetes are altogether different diseases.
Footnote 2:  “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.
Footnote 3:  For example, “Diabetes at the crossroads:  relevance of disease classification to pathophysiology and treatment” Diabetologia (2016) 59:13-20.

Friday, February 16, 2018

Transformative Resilience: Turning a Diabetes Diagnosis into an Advantage and a New Life

An article in the New York Times by Kristin Wong, entitled “The 6 Steps to Turning Setbacks into Advantages,” prompted me to write this blog.  It had long been my intent to write about the grief of diagnosis and the path to finding acceptance of one’s new life with diabetes; Ms. Wong’s excellent article, discussing the findings of Stephanie Marston and Ama Marston in their 2018 book Type R: Transformative Resilience for Thriving in a Turbulent World got me off my duff.

Transformative resilience is the ability to improve one's life because of a setback such as a diabetes diagnosis; it is the possibility of turning adversity into growth.  In her New York Times article, Ms. Wong describes the six stages that are outlined by the Marstons, which I have adapted to be specific to a diabetes diagnosis.

Stage 1:  Comfort Zone (or the calm before the storm, your life before the proverbial s**t hits the fan)

Stage 2:  Disruption (diagnosed with diabetes)
Panic, fear, or grief ensue.  This is a good time to rely on external support systems, such as sympathetic friends and family.  Or find a diabetes support group (online or in person).

Stage 3:  In the middle of chaos
Chaos ensues as you struggle to make sense of your shattered reality.  Denial can be a huge factor.  You experience grief, similar to grieving a death, because in fact it is the death of your former life, your life before diabetes.

Stage 4:  A catalyst emerges
You experience an epiphany, which helps to jump-start your transformation.  This catalyst typically happens organically, and it is about accepting the reality of your new life.  Joseph Campbell said, “We must let go of the life we have planned so as to accept the one that is waiting for us.”

Stage 5:  You move toward something new
You learn new skills, such as diabetes management skills, and you reshape your place in the world.

Stage 6:  You are comfortable with the change
You have reached a point where everything has changed and you have fully accepted that.

I have had long conversations with my endocrinologist about how coming to acceptance of having Type 1 diabetes is the key to good diabetes management and living well with diabetes.  For me, it has been essential to view my life with Type 1 diabetes as my new life.  Pre-diagnosis was my old life, and it is gone.  People who operate in the anger stage of grieving a diabetes diagnosis have a difficult time taking care of themselves and doing the extensive drudgery we must perform 24/7/365.  In my view, coming to a place of acceptance of one’s new life is essential to good diabetes management and living well.

Monday, August 28, 2017

Interview with Dr. Irl Hirsch on the Problem of Misdiagnosis

Recently, I had the great pleasure of interviewing Dr. Irl Hirsch about the problem of misdiagnosis—people with Type 1 diabetes who are misdiagnosed as having Type 2 diabetes.  I had heard Dr. Hirsch speak at the Taking Control of Your Diabetes (TCOYD) ONE Conference in San Diego in June 2017, and over the years I have read a number of his papers and know he is a great advocate for those with adult-onset Type 1 diabetes.  Dr. Hirsch is a preeminent endocrinologist, diabetes researcher, author of numerous articles and books on diabetes, and a person with Type 1 diabetes himself (since he was 6 years old). He is a professor of medicine at the University of Washington School of Medicine and sees patients (the majority with Type 1 diabetes) at the University of Washington Endocrine and Diabetes Care Center.  Oh and did I mention he is brilliant and has a great sense of humor? When the opportunity to sit down with Dr. Hirsch for a one-on-one conversation presented itself, I took it.  What came next was a whirlwind 30 minutes of conversation that educated, validated, and reinforced my mission to change the way the medical community diagnoses adult-onset Type 1 diabetes. 

There were two key themes that Dr. Hirsch reiterated throughout our conversation:  first, adult-onset Type 1 diabetes is difficult to correctly diagnose and second, physicians do not have the necessary time to spend with patients to achieve good outcomes.

First let’s talk about why it is hard to correctly diagnose adult-onset Type 1 diabetes.  Dr. Hirsch sees misdiagnosis as an epidemic—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).  From his viewpoint, there is such a heterogeneous phenotype in adult-onset Type 1 diabetes, from a classic phenotype of rapid onset (rapid weight loss, Caucasian, normal BMI, polyuria, polydipsia, polyphagia) to a very slowly progressive Type 1 phenotype, that makes it more challenging to correctly diagnose.  As Dr. Hirsch repeatedly said, the presentation of Type 1 diabetes in adults is so variable.

In my opinion, one of the fundamental problems is that medical and nursing schools do not teach the most current information about Type 1 diabetes, and they still perpetuate the myth that Type 1 diabetes is a childhood/young adult disease.  What chance do we ever have of changing how doctors think if the information they get in school is out-of-date and/or flawed?  Of course, at the University of Washington School of Medicine where Dr. Hirsch teaches, they train medical students that new-onset Type 1 diabetes is seen in all ages and has a variable presentation in adults—they are working to make sure future doctors know the range of Type 1 diabetes presentation and how to correctly diagnose and treat it.  I am reminded that change comes one step (or School of Medicine/medical textbook) at a time.

As technology improves, it brings with it better diagnostics but those advancements can be years or even decades to fruition.  Dr. Hirsch mentioned the United Kingdom Prospective Diabetes Study (UKPDS) that began in 1977 and he shared something about the research which reminded me of an old saying:  if only we knew then what we know now.  Some years after the UKPDS commenced, the researchers went back and performed autoantibody testing on the subjects’ stored specimens.  They determined that about 10% of people who were diagnosed with Type 2 diabetes were autoantibody positive and in fact had Type 1 autoimmune diabetes.  They also found that the autoantibody positive people tended to be younger, thinner, and Caucasian.  In the UKPDS, the average number of years before these Type 1s were put on insulin was six years, but they were not put on insulin until their fasting blood glucose was 270 mg/dl.  That is over 2,000 days of being incorrectly diagnosed and incorrectly treated because technology hadn’t advanced to the point it is today.  When I asked Dr. Hirsch why all Type 2 trials today do not use autoantibody testing to eliminate Type 1s from the trial, he reminded me that autoantibodies often go away over time.  So technology is getting better, but we aren’t quite there yet.

Even if we get to the point where the technology exists to diagnose every disease, every time with perfect accuracy, we will still be dependent on physicians to interpret the results, develop a treatment plan, and administer care.  This leads us to the second theme of my conversation with Dr Hirsch:  physicians don’t have enough time to spend with their patients to achieve good outcomes. 

In Dr. Hirsch’s words, the United States’ medical system is not set up to provide excellent care for people with diabetes, both the newly diagnosed and those with long-standing diabetes.  This is one of those topics Dr. Hirsch writes about in his annual “Dr. Irl Hirsch’s Rant.”  Google it, read one or more, and you understand what a passionate advocate Dr. Hirsch is for better medical systems and care.  I asked Dr. Hirsch why all patients with new-onset diabetes aren’t tested for autoantibodies, to determine if the patient has Type 1 diabetes, and he said largely because it is expensive and controlled by insurance.  Dr. Hirsch emphasized 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.

Dr. Hirsch sees many areas for improvement.  He says, “These days, 95% of doctors have employers and thus metrics that they must achieve.  They see patients every 15 minutes, and don’t have the time and infrastructure to teach patients how to use mealtime insulin.”  To further compound this problem, most clinics don’t have a Certified Diabetes Educator (CDE), which is one of the ways that people with new-onset Type 1 can learn the basics.  At a recent Endocrine Society meeting, Dr. Hirsch did an informal survey, and he found that 1/3 of endos have only 15 minutes with diabetes patients, and 1/3 have only 20 minutes with diabetes patients.  This means that only 1 out of 3 of these physicians will potentially have enough time to train a new patient on the use of insulin, or download an established patient’s pump and/or continuous glucose monitor (CGM) data and analyze it. 

Compounding the problem of limited time, Dr. Hirsch also described “doctor and patient barriers to insulin use.”  Many physicians won’t start a patient on insulin even if a patient has an A1C of 10 with classic symptoms.  According to Dr. Hirsch, a fundamental problem is that these doctors are not taught how to use mealtime insulin, are terrified of mealtime insulin, and thus they avoid it as long as possible.  If there were more time and support for the training, for example having a CDE on staff, perhaps this barrier could be overcome.  In some ways, the “patient barrier” is even harder to overcome because it can be based on cultural biases, fear, or shame—all powerful forces and obstacles.  Another patient barrier is the fact that people in certain jobs, such as commercial pilot or commercial truck driver, will lose their jobs if they must go on exogenous insulin.

In the end, 30 minutes went by in the blink of an eye.  Dr. Hirsch had to get back to his busy practice where he will again find this week’s misdiagnosed patient, change their diagnosis, change their care, and ultimately, improve their quality of life.  I am forever grateful for physicians and advocates like Dr Hirsch.   We didn’t solve the problem of misdiagnosis but we did have a conversation that gives me hope that one day technology, knowledge, and time will align and we will finally be able to correctly diagnosis and treat all people with Type 1 diabetes.

Sunday, June 25, 2017

Reporting on ONE: The Ultimate Conference & Retreat for Adults with Type 1 Diabetes

The amazing folks at Taking Control of Your Diabetes (TCOYD) have completely outdone themselves.  Now, I was diagnosed with Type 1 diabetes as an adult, so I never attended famous-amongst-children Diabetes Camps.  Well, now I have attended a Type 1 retreat for adults (Diabetes Camp for adults), and I can say with certainty that it is fun, I am so much more knowledgeable, and I am inspired and motivated.  Diabetes Camp allows people to learn to care for themselves better, have fun, and realize they are not alone.  Diabetes camp for adults does all of those things, plus has cocktails and luaus!

The talks were incredible.  My favorite was “The Artificial Pancreas:  It’s Closer than You Think” with speaker/researcher legends Bruce Buckingham (Stanford endo), Ed Damiano (the brains behind the insulin/glucagon artificial pancreas iLet by BetaBionics), Jeffrey Brewer (Bigfoot Biomedical), Jacob Leach (Dexcom), and John Sheridan (Tandem).  The first automated insulin delivery device, the Medtronic 670G, is newly on the market, and I am hopeful that very soon we will have more options.

I was surprised by the talk that I attended by Tricia Santos, “Treatments for Type 1 Other than Insulin.”  Until now, I had simply dismissed drugs for Type 2 being used on Type 1s, but studies have shown that both the GLP-1 drugs and the SGLT2 Inhibitors greatly increase “time in range” for Type 1s.  Of course, there are potential side effects, but I will follow this more closely.

Stephen Ponder, of Sugar Surfing fame, gave an abbreviated talk on his methods of better control.  His book, of course entitled Sugar Surfing, is a must read.  Irl Hirsch, preeminent diabetes researcher and person with Type 1, talked about the limitations of the A1c test, and how good control is so much more than A1c.

Kerri Sparling, author of the blog SixUntilMe and author of the book Balancing Diabetes, gave several excellent talks addressing the emotional burden of diabetes.  And Kerri is hilarious, too!  My personal belief is that the emotional aspect, from the grief of diagnosis to the “staying motivated” after decades of life with Type 1, is the most challenging.

There was even a talk on “Alcohol and Diabetes:  Do They Mix?” by Jeremy Pettus.  Who knew that a speaker would put up a slide about “foofy drinks”?!  And BTW, a foofy drink is a pina colada, weighing in at ~60 grams of carbohydrates for one drink.  Jeremy reaffirmed my drink of choice, dry wines, which are low in carbs and have a negligible effect on blood glucose.

I connected up with some women from the Type 1 women’s group that I attend in Oakland/Berkeley.  I am so grateful for that group and having those connections.  I was blown away by the sheer numbers of people—over 500 people registered.  Now, some were Type 3s (spouses, other support people), but mostly this was a huge group of people with Type 1 diabetes.  Very inspiring.  The longest diagnosed person that I met was 66 years with Type 1, the shortest was less than 2 years.  Quite a span.

Other tidbits:
  • Adam Brown of DiaTribe has a new book out, Bright Spots and Landmines.  If you want the best, most practical tips on caring for yourself and your Type 1 diabetes, this highly readable book is it.  Also, I really recommend subscribing to the DiaTribe newsletter, which keeps up with the latest and greatest.
  • Chris Angell, diagnosed with Type 1 diabetes at age 30 (initially misdiagnosed as Type 2), created GlucoLift glucose tablets (, to provide an alternative to awful-tasting glucose tabs.  GlucoLifts were offered at the ONE “High” station, and I can tell you I will be ordering them!
  • Mark Atkinson of nPod is doing amazing investigations on the pancreases of Type 1 cadavers.  NPod is the Network for Pancreatic Organ Donors with Diabetes.  Mark is smashing myths and doing great research.

To any person that says, “There is too much money to be made on treating those of us with Type 1 diabetes, so there will be no cure,” I would challenge you to listen to these extraordinary men and women who are doing so much to improve our lives.  Many thanks to Steve Edelman, founder of TCOYD, and his team for putting on this extraordinary conference.

Out of this, I have made a list of goals for myself, and three of us plan to get together to look at our graphs, analyze information, and help improve our control (for me, time in range) and our lives.

Monday, June 12, 2017

From 2000, My First Published Article on Adult-Onset Type 1 Diabetes

In 2000, my first paper on adult-onset Type 1 diabetes was published in the newsletter of the International Diabetic Athlete Association (IDAA), a now-defunct organization.  I feared that I would receive hate mail for what I wrote, particularly for blasting ADA and JDRF, but instead I received so many email responses to the effect of, “thank you, finally someone has written the truth about Type 1 diabetes.”  When I read my words of 17 years ago, I realize we still have a long way to go, but in fact much progress has been made (for example, JDRF has a program and brochure for people with adult-onset Type 1 diabetes).  Here is my article from 2000, with a few 2017 updates as noted:


Type 1 or autoimmune diabetes has long been thought of as a disease of childhood; in fact, its previous designation was juvenile diabetes.  Only in recent years, with the advent of antibody testing, have some in the medical community recognized that Type 1 diabetes affects people of all ages, and in fact the majority of people who are newly diagnosed with Type 1 diabetes are adults.  In 1997, the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus stated that, “immune mediated diabetes commonly occurs in childhood and adolescence, but it can occur at any age, even in the eighth and ninth decades of life” (The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, 1998).  However, the medical community has been slow to recognize this, and Type 1 diabetics diagnosed as adults are still treated as abnormalities and frequently given inappropriate treatment for the disease they have.  All too often, they are diagnosed with Type 2 diabetes, which is a fundamentally different disease not only clinically but genetically (Saudek, Rubin, and Shump, 1997), and the methods of treatment for the two diseases are also different.  The misdiagnosis typically results in under-treatment, and causes needless suffering.  Many International Diabetic Athletes Association (IDAA) members were diagnosed with Type 1 diabetes as adults, including Linda McClure, the IDAA Executive Director, who was diagnosed at age 36.  I was diagnosed with Type 1 diabetes at age 35, although I was briefly treated as if I had Type 2 diabetes and was sent to Type 2 diabetes education classes.  I discovered that the diabetes care community is not set up to deal with adults who are newly diagnosed with Type 1 diabetes, which is a situation that I believe needs to change.

It is well-known that the symptoms of Type 1 diabetes develop slightly more slowly in adults than in children.  I have a book that was published in 1958 that describes the progression of the symptoms of Type 1 diabetes in adults versus children (Dolger and Seeman, 1958).  In adults, the disease appears more gradually than childhood-onset Type 1, but its cause is the same (Karl and Riddle, 2000).  Unfortunately, because an adult with Type 1 diabetes typically has some functioning beta cells for some time after diagnosis, oral medications for Type 2 diabetes may to some degree control glucose levels right after diagnosis.  However, 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, and reduce the possibility of diabetic complications (Karl and Riddle, 2000).  A study of the Diabetes Control and Complications Trial (DCCT) demonstrated that initiating intensive insulin therapy (defined as three or more injections per day or continuous subcutaneous infusion of insulin, guided by four or more glucose tests per day) as soon as possible after Type 1 diabetes is diagnosed helps sustain endogenous insulin secretion, which in turn is associated with better metabolic control and lower risk for hypoglycemia and chronic complications (The Diabetes Control and Complications Trial Research Group, 1998).

The United States Centers for Disease Control and Prevention (CDC) states that the number of new cases of diabetes diagnosed per year is 798,000, and that Type 1 diabetes may account for 5% to 10% of all diagnosed cases of diabetes (from the CDC web site).  In fact, these percentages only include those who have been correctly diagnosed, and many recent studies indicate that that Type 1 diabetes is undercounted.  All too often, those with Type 1 such as myself who acquire the disease as adults are misdiagnosed as having Type 2.  Numerous studies, particularly recent ones that used antibody testing (islet cell antibody [ICA], anti-glutamic acid decarboxylase [anti-GAD] antibodies, etc.), indicate that approximately 10% of adults newly diagnosed with Type 2 diabetes in fact have the autoimmune markers for Type 1 diabetes and have been misdiagnosed (Wroblewski,, 1998).  In the landmark United Kingdom Prospective Diabetes Study (UKPDS) of Type 2 diabetes, 10% of the people that supposedly had Type 2 had ICA and/or anti-GAD antibodies, and clearly had Type 1 diabetes (Zimmet et. al., 1999).  The Endocrine Society estimates that as many as 20% of the people diagnosed with Type 2 diabetes actually have Type 1 diabetes (Endocrine Society web site).  The web site for the Lehigh University Diabetes Frequently Asked Questions (FAQs) states that, “Latent autoimmune diabetes in adults (LADA, or Type 1 diabetes in adults) may constitute as much as 50% of non-obese adult-onset diabetes.”

It is important that the type of diabetes a patient has is correctly assessed.  As stated previously, adults who acquire Type 1 diabetes should be put on exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, and reduce the possibility of diabetic complications.  However, these are very clinical outcomes that fail to address the “human side” of misdiagnosis.  Those of us who have Type 1 diabetes but were initially diagnosed with Type 2 diabetes often suffered needlessly while on oral medications for Type 2 diabetes until we received appropriate treatment for the disease that we have (exogenous insulin).  The examples below describe the human impact of misdiagnosis.

June Biermann, prolific author of books on diabetes including The Diabetic’s Sports and Exercise Book, was diagnosed with Type 2 diabetes in 1967 at age 45, even though she failed to meet the criteria associated with Type 2 diabetes.  June was prescribed various oral medications for Type 2 diabetes, which did not adequately control her blood sugars, and after one year of much suffering and further weight loss (and several doctors), June was treated with exogenous insulin.  The standard for that time was one injection per day of NPH insulin.  Although for many years June referred to herself as a Type 1-1/2 diabetic, today she probably would be called a late-onset Type 1 diabetic.  Thirty years after her initial diagnosis as a Type 2 diabetic, June was given a C-peptide test, which indicated that her body did not produce any insulin.  June says, “The medical profession wanted to believe that I did not exist and that the problem was with me, when in fact it was the medical profession that ignored Type 1 diabetes in adults” and that she “has always felt misunderstood and ignored, and that [she] was a freak to the medical profession.”    June now does five or more injections per day of Humalog and NPH purified pork insulin, tests her blood sugar 7 to 8 times per day, and is looking forward to the introduction of glargine, the long-acting insulin analog without a peak.

Matt Hammer, an athlete who enjoys running and yoga, was diagnosed with diabetes in April 1997 at the age of 29.  Because of extreme fatigue and constant urination, Matt went to the Kaiser Permanente Acute Care Clinic near his home in Oakland, California.  His blood sugar was in the 400s (mg/dl).  The attending physician told Matt, “You have diabetes, avoid sugar, and someone will be calling you soon.”  He was given no other information and was sent home.  Matt was treated as if he had Type 2 diabetes, even though he had none of the risk factors, and he was both put on various oral medications and instructed to control his blood sugar with just diet and exercise.  For 21 months, Matt’s doctors tried to get his blood sugar under control with oral medications, diet, and exercise, but Matt’s condition continued to deteriorate.  In February 1999, while in Hawaii on a yoga retreat, I met Matt.  At lunch one day, he saw me injecting my insulin, and commented that he too had diabetes, but that he was on oral medications.  Because I saw that he was young, thin, and fit, and having experienced being incorrectly diagnosed myself, I asked Matt the next day if he had ever considered that he might have Type 1 diabetes and that he probably needed to be on insulin injections.  Matt said, “A light bulb went off in my head”, and as soon as Matt returned from Hawaii he went to Kaiser and insisted that he be put on exogenous insulin.  Matt now uses Humalog insulin in an insulin pump.  When Matt was finally correctly diagnosed he was, “angry that he received such bad care”, yet he had “a sense of relief that he could now get proper care after things had been out of control for so long.”  Matt feels that his misdiagnosis resulted in a lot of needless pain.  Today, he says that the hardest thing about diabetes is the need for constant daily discipline, but that although it is a really tough chronic disease, it is possible to live a good life if you can be disciplined.  Matt has an uncle who was diagnosed with diabetes as an adult 30 years ago, and his uncle has had both of his lower legs amputated as a result of his diabetes.  Matt’s uncle is on insulin injections, but Matt does not know what type of diabetes his uncle has.

Why is there a tendency to misdiagnose adults who have Type 1 as Type 2 diabetics?  I believe that there are several factors, the primary one being the emphasis by the diabetes medical community that Type 1 diabetes is a childhood disease.  I also think that doctors want to keep people off of insulin injections as long as possible, not realizing that for Type 1 diabetics there are significant short- and long-term benefits to beginning exogenous insulin as soon as possible.  The two principal organizations that address diabetes in the United States are the American Diabetes Association (ADA) and the Juvenile Diabetes Research Foundation (JDRF).  A common theme in materials published by both organizations is using diabetic children to garner more sympathy, and therefore more funding; thus, adults with Type 1 tend to be ignored because they do not garner as much sympathy.  The ADA’s emphasis is on Type 2 diabetes, and ADA recently published a position paper on Type 2 diabetes in children, even though Type 2 diabetes affects a significantly smaller number of children than the number of adults who acquire Type 1 diabetes.  Although I have asked ADA repeatedly why they have not written a corresponding position paper on adults who acquire Type 1, ADA has not responded to my question.  JDRF was founded by parents of children with diabetes.  JDRF appears to use children, again for sympathy, but also to distance themselves from Type 2 diabetes, which is perceived to be a lifestyle-related, preventable disease that typically occurs in older adults (2017 note:  Type 2 diabetes is a complex disease with many myths of its own).  JDRF’s publications and press releases emphasize that “our priority is juvenile, Type 1, diabetes, which primarily strikes children" (Ross Cooley, Chairman of the JDRF Board of Directors, November 2000).  Even JDRF's own figures say that, of the 30,000 new cases of Type 1 diagnosed each year, “over 13,000 of whom are children” (from the JDRF web site); thus JDRF’s own figures indicate that the majority of people diagnosed with Type 1 each year are adults.  However, those figures exclude the many adults who have late-onset Type 1 and are misdiagnosed as Type 2. 

Clearly it would be helpful if both ADA and JDRF acknowledged the full incidence of Type 1 diabetes in people of all ages.

If you are newly diagnosed, and unsure if you have Type 1 or Type 2 diabetes, you can be tested for anti-GAD antibodies (2017 note:  autoantibodies include GAD, ICA, IA-2, IAA, and ZnT8).  If an anti-GAD antibody test is performed when diabetes is first diagnosed, a positive result means you have Type 1 diabetes.  Also, the C-peptide test, which is a measurement of the body’s natural production of insulin, can be a way to gauge whether you have Type 1 or Type 2 diabetes (Connors, 2000).

All people deserve appropriate medical care for the disease that they have.  It is imperative that the true incidence of Type 1 diabetes in adults be known, and that the diabetes medical community recognizes us, so that we who acquire the disease as adults can live the best lives possible.


Connors, Thomas, 2000.  “An Old Test Teaches Doctors New Tricks:  C-Peptide Exam Becoming an Accepted Tool for Diabetes Treatment.”  Diabetes Interview, September.

The Diabetes Control and Complications Trial Research Group, 1998.  “Effect of intensive therapy on residual beta-cell function in patients with Type 1 diabetes in the Diabetes Control and Complications Trial.  A randomized, controlled trial.”  Annals of Internal Medicine, April 1, 1998.  128(7):517-23.

Dolger, H., and B. Seeman, 1958.  How To Live With Diabetes.  W.W. Norton and Company, New York.

The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, 1998.  “Report of the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus.”  Diabetes Care, Volume 21, Supplement 1.

Karl, D.M, and M.C. Riddle, 2000.  “Not Just For Kids.”  Diabetes Forecast, November.

Lehigh University Diabetic Mailing List, Frequently Asked Questions, “What is Latent Autoimmune Diabetes in Adults?”  June 27, 1996.

Saudek, C.D., R.R. Rubin, and C.S. Shump, 1997.  The Johns Hopkins Guide to Diabetes For Today and Tomorrow.  The Johns Hopkins University Press, Baltimore.

Wroblewski, M., et al., 1998.  “Gender, Autoantibodies, and Obesity in Newly Diagnosed Diabetic Patients Aged 40-75 Years.”  Diabetes Care, Volume 21, Number 2.

Zimmet, P., et al., 1999.  “Crucial Points at Diagnosis.  Type 2 Diabetes or Slow Type 1 Diabetes.”  Diabetes Care, Supplement 2:  B59-64.

Sunday, January 8, 2017

Recognizing and Appropriately Treating Adult-Onset Type 1 Diabetes

In 2016, I attended an amazing conference for those with Type 1 diabetes and their loved ones, CarbDM, held in the San Francisco Bay Area.  The opening presentations illustrate a simple cause and effect relationship:  if the medical community and diabetes organizations promote that Type 1 diabetes is a childhood disease, those who acquire Type 1 diabetes as adults are misdiagnosed as having Type 2 diabetes, an altogether different disease, and given inappropriate treatment.  It is important to know that most new-onset Type 1 diabetes is seen in adults[1].  Speakers at the conference, world-renowned endocrinologists and diabetologists, referred to Type 1 diabetes as a childhood disease and only spoke of work with children.  Ironically, the opening speaker, news reporter Keba Arnold, spoke about how she was diagnosed with Type 1 diabetes as an adult, although she was initially misdiagnosed as having Type 2 diabetes despite having no risk factors and having a brother who has Type 1 diabetes.    This was a clear example of a simple case of cause (promote Type 1 diabetes as a childhood disease) and effect (adults with new-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes).

A recent article in Diabetes Spectrum entitled “Recognizing and Appropriately Treating Latent Autoimmune Diabetes in Adults (LADA)” (Diabetes Spectrum 2016 Nov; 29(4):249-252) makes simple but important points about adult-onset Type 1 diabetes.  Unfortunately, the authors do not address the fact that adult-onset Type 1 diabetes can be both rapid onset (which happened to me at age 35) or slow onset (LADA)[2], and that for women it can be precipitated by pregnancy[3].  Nonetheless, here are highlights: 
  • LADA is Type 1 diabetes but is often misdiagnosed as Type 2 diabetes because of a lack of awareness and a lack of standardized diagnostic criteria.
  • Misdiagnosis results in insufficient glycemic control and harm to patients.
  • It is imperative to establish distinct practice guidelines for the diagnosis and treatment of 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.
  • Patients are often misdiagnosed due to the use of arbitrary screening criteria such as age.
  • It is important to develop standardized guidelines for LADA to improve diagnostic and treatment quality, help providers become more aware of LADA, and decrease the risk of harm to patients from inadequate treatment.

Research studies have shown that ~10% of people diagnosed with “Type 2” diabetes are autoantibody positive, have been misdiagnosed, and in fact have Type 1 autoimmune diabetes.  For example, Robin Goland, co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York, says that most of her patients with adult-onset Type 1 diabetes were misdiagnosed as having Type 2 diabetes.

An awareness campaign and standardized guidelines for identification and treatment of adult-onset Type 1 diabetes are urgently needed.  I am grateful to the researchers who wrote the Diabetes Spectrum article, who are advocating on behalf of those with adult-onset Type 1 diabetes and the misdiagnosed.  It is interesting to note that the authors of this article are associated with a university pharmacy college and are not physicians.  One is left to wonder how much of a difference we could make in the effort to ensure correct diagnosis if all care providers worked together to share ideas, challenge assumptions, and advocate for patients.

[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 actually have slowly progressive Type 1 diabetes.  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, ICA, IA-2, IAA, and ZnT8), and researchers using genetic data have shown that the majority of new-onset Type 1 diabetes occurs in adults.  In “The Type 1 Diabetes Sourcebook” (ADA/JDRF 2013) Michael Haller MD states, "Adults with LADA [latent autoimmune diabetes in adults or slowly progressive Type 1 diabetes] 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."
[2] From “The Type 1 Diabetes Sourcebook” (ADA/JDRF 2013), “Adult 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).”
[3] The Diabetes Spectrum article does not mention autoimmune gestational diabetes, but 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.