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Could You Be Misdiagnosed With Type 2 Diabetes?

Many people believe there are only 2 types of diabetes, most notably type 1 diabetes (T1D) and type 2 diabetes (T2D). However, diabetes is actually a spectrum. Other forms of diabetes don't fit into either of the 2 common categories. That means some people are diagnosed with the wrong type of diabetes.

How does a misdiagnosis happen?

We know how each type of diabetes shows up in the body and what it looks like on lab work. This information, along with specific details about a person (body size, medical history, age, etc.), helps medical professionals make a diagnosis.

However, as helpful as all those guidelines are, they aren't exact. Sometimes diabetes doesn't always show up the way we expect it. For example, I've worked with several hospitalized patients with type 2 diabetes in DKA (diabetic ketoacidosis). DKA is something that happens most often in people with type 1 diabetes. 

Sometimes this led to a medical provider misdiagnosing the patients with type 1 diabetes. Some people have problems with their pancreas that causes diabetes to develop. Most of the time, these folks are misdiagnosed with type 2 diabetes when really the correct diagnosis is type 3c diabetes.1

How common are misdiagnoses?

Being wrongly diagnosed happens more than you might think. Studies show that developing type 1 diabetes after age 30 means you're more likely to be misdiagnosed with type 2 diabetes.2  

Another form of diabetes, latent autoimmune diabetes in adulthood (LADA), is considered a slower-developing type 1 diabetes. Because of the slow changes, it may look more like type 2 diabetes to providers. Researchers estimate that up to 15 percent of people with type 2 diabetes actually have LADA. Type 3c is even more challenging, with studies showing many people end up with a type 2 diabetes diagnosis instead.3,4

What are the types of diabetes?

There are many other forms of diabetes. Here are just a few outside of the type 1 diabetes and type 2 diabetes categories:

  • Type 3 diabetes
  • Type 3c diabetes
  • Gestational diabetes
  • Latent autoimmune diabetes in adulthood (LADA)
  • Maturity-onset diabetes of the young (MODY)

Why does the proper diabetes diagnosis matter?

The wrong diagnosis can lead to delays in medical care and higher risks for diabetes complications.2,4 

In my experience as a CDCES, I've also seen patients experience delays in care because of the stigmas around type 2 diabetes. I observe that people with type 2 diabetes are wrongly considered "non-compliant" by medical professionals, thus further delaying their care.

I believe some of this relates to the incorrect stigma that "type 2 diabetes is your fault." Also, I see some bias against those with type 2 diabetes by health insurance companies. Unfortunately, diabetes technologies such as insulin pumps or continuous glucose monitors can be harder to get covered with a type 2 diabetes diagnosis. Getting the correct diagnosis may give you better access to these helpful tools.

What can you do to ensure you're correctly diagnosed?

Lab work and referrals to medical specialists (like an endocrinologist) can help you explore your type 2 diabetes diagnosis. If you've struggled with your blood sugar levels or needed insulin within 3 years of diagnosis, you may be more likely to have a different form of diabetes. Experiencing chronic pancreatitis or other pancreas issues could point to a different form of diabetes.2,3,4

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