Type 2 Diabetes Diagnosis? Your Doctor Could be Wrong

by Mary Shomon Patient Advocate

More than one million Americans are diagnosed with type 2 diabetes each year, according to the American Diabetes Association. An estimated 29 million people in the U.S. have type 2 diabetes. If you were diagnosed of type 2 diabetes, did you know that your diagnosis may be wrong? Many people are being diagnosed with the wrong type of diabetes. You could be one of them. Learn more about this surprising challenge to diabetes treatment.

Young diabetic woman holding an insulin pump in the city
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Type 1 Misdiagnosed as Type 2

Many cases of type 1 diabetes diagnosed after age 30 are misdiagnosed as type 2 diabetes. This was reported at the 2018 meeting of the European Association for the Study of Diabetes (EASD).

The treatment for type 1 is insulin. Type 2 diabetes is treated with diet, exercise, and in some cases, drugs to improve insulin sensitivity. It’s less common, but insulin is sometimes prescribed for type 2 diabetes.

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Misdiagnosis of Type 1 Diabetes in Adults Is Rampant

The EASD study looked at almost 600 people diagnosed with diabetes after age 30. They were all treated with insulin. The study found that 21 percent had type 1 diabetes. (Type 1 diabetes in adults is also called latent autoimmune diabetes in adults (LADA)). More than 40 percent were incorrectly diagnosed with type 2 diabetes and didn’t initially get insulin. Within this group, 84 percent required insulin within a year of diagnosis.

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A Need for Insulin Is a Key Marker for Type 1 Diabetes

According to researchers: "Clinicians should be aware that the majority of patients needing insulin within three years of diagnosis will have type 1 diabetes, even if they were initially thought to have type 2 diabetes and did not need insulin at diagnosis. Getting the right diagnosis is important for these patients to receive the right education and treatment."

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The Health Implications of Type 1 Diabetes Misdiagnosis

Type 1 diabetes requires insulin treatment. Misdiagnosing the condition as type 2 results in delays in prescribing insulin. People with type 1 diabetes who aren’t treated with insulin face an increased risk of serious diabetic complications, such as nerve, eye, and kidney damage, as well as diabetic ketoacidosis.

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Type 1 Diabetes Risks, Signs, and Symptoms

You have a higher risk of type 1 diabetes if you have a personal or family history of another autoimmune disease.

Other signs and symptoms of type 1 diabetes include:

  • The presence of autoimmune antibodies
  • Being underweight or normal weight
  • Failure to respond to drugs and lifestyle treatments for type 2 diabetes
  • The need for insulin treatment
  • Continued and/or worsening diabetes symptoms, such as excessive thirst and hunger, frequent urination, and weight loss
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What Should You Do?

If you have a type 2 diabetes diagnosis, risks for, or signs and symptoms of type 1 diabetes should be discussed with your doctor. The following test results can confirm a type 1 diagnosis:

  • Low or low-normal C-peptide levels
  • Elevation of at least one of the following: antibodies to glutamic acid decarboxylase (known as anti-GAD antibodies, or GADAs); antibodies to Islet Cell Antigens (anti-ICA); or antibodies to tyrosine phosphatase proteins (IA-2s)
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Type 3c Diabetes Misdiagnosed as Type 2

Another type of diabetes is also commonly misdiagnosed as type 2. A study published in the journal Diabetes Care found that almost all patients with an unusual type of diabetes, called type 3c diabetes, are misdiagnosed with type 2. Misdiagnosis leads to poor treatment, and an increased risk of diabetic complications.

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What Is Type 3c Diabetes?

Type 3c diabetes is also known as pancreatogenic diabetes or diabetes of the exocrine pancreas. Type 3c diabetes affects your ability to produce insulin. The causes of type 3c diabetes include cystic fibrosis, hemochromatosis, pancreatic inflammation (pancreatitis), abnormal growth of tissue on the organ, pancreatic cancer, or surgically removing part or all of the pancreas.

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Type 3c Diabetes Is a Growing Public Health Concern

Type 3c diabetes is an under-recognized public health concern. The Diabetes Care reported among people with pancreatic disease, more than 97 percent who are diagnosed with diabetes are misdiagnosed with type 2 rather than 3c. The study also showed that when adults are diagnosed with diabetes, type 3c is actually more common than type 1 diabetes. Another study found that 8 percent of diabetic patients studied had type 3c diabetes, rather than type 1 or 2.

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The Health Implications of Type 3c Diabetes Misdiagnosis

Type 3c diabetes almost always requires insulin treatment. Misdiagnosing the condition as type 2 results in delays in prescribing insulin. People with type 3c diabetes who aren’t treated with insulin face an increased risk of debilitating diabetic complications, such as nerve, eye, and kidney damage, as well as diabetic ketoacidosis.

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Type 3c Diabetes Risks, Signs, and Symptoms

The main type 3c diabetes risk factor is a history of pancreatic disease or surgery, which is found in an estimated 80 percent of type 3c patients. Alcoholism and heavy drinking are also risk factors.

Other signs and symptoms include:

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What Should You Do?

Type 3c diabetes has been known to develop ten years or more after pancreatic illness. It’s very important, then, that you make your health care provider aware of your medical history. If you have a type 2 diabetes diagnosis and have any of risks for, or signs and symptoms of type 3c diabetes, consult with your health care provider. Additional tests can rule out the possibility that you have type 3c diabetes.

Mary Shomon
Meet Our Writer
Mary Shomon

Mary Shomon is a patient advocate and New York Times bestselling author who empowers readers with information on thyroid and autoimmune disease, diabetes, weight loss and hormonal health from an integrative perspective. Mary has been a leading force advocating for more effective, patient-centered hormonal healthcare. Mary also co-stars in PBS’ Healthy Hormones TV series. Mary also serves on HealthCentral’s Health Advocates Advisory Board.