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.

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.

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