What to Do If You Test Positive for Type 1 Diabetes Autoantibodies

You took a proactive step by consulting your doctor and getting tested for islet autoantibodies. Now, what comes next? Depending on your results, you may not have positive autoantibodies for type 1 diabetes or you might have tested positive for one or more type 1 autoantibodies.

The antibodies for which these tests check are:

• Islet cell cytoplasmic autoantibodies (ICA)
• Glutamic acid decarboxylase autoantibodies (GADA)
• Insulinoma-associated-2 autoantibodies (IA-2A)
• Insulin autoantibodies (IAA)
• Zinc transporter-8 autoantibodies (ZnT8A)

What does having type 1 diabetes autoantibodies mean?

• Positive type 1 diabetes autoantibodies indicate a moderate to extremely high risk of developing type 1 diabetes.
• Over 90 percent of people with new-onset type 1 diabetes will have at least one islet autoantibody.
• Always consult your doctor to interpret your test results and their significance.

• If you test positive for a single diabetes autoantibody, further testing is needed.
  • Having one doesn’t always mean you’ll develop type 1 diabetes.
• If you test positive for two or more autoantibodies, the risk of developing type 1 diabetes within 10 years jumps to 75 percent 
• If you test positive for two or more diabetes autoantibodies, your lifetime risk of developing type 1 diabetes is nearly 100 percent.

Testing negative

• Testing negative for autoantibodies usually indicates a low risk for developing type 1 diabetes.
  • However, some people are autoantibody negative at diagnosis.
• Remember, autoantibody testing cannot diagnose type 1 diabetes
• If you test negative but have symptoms like frequent urination, extreme thirst, exhaustion, or unexplained weight loss, contact your doctor or seek emergency care
  • Undiagnosed type 1 diabetes can be life-threatening.

Limitations of autoantibody testing

• Negative test results don’t fully rule out type 1 diabetes or type 2 diabetes, especially if you have symptoms.
• Not everyone with a single autoantibody develops type 1 diabetes
  • But most people with two or more autoantibodies eventually do.
• Autoantibody testing cannot monitor or diagnose type 1 diabetes.

What will your doctor do next?

• Once you and your doctor receive your results, they will probably want to order more tests to confirm the autoantibodies if needed, including:
  • Fasting glucose test
  • Oral glucose tolerance test
  • A1C test
  • C-peptide test
  • Insulin assay test
• This can help them make a swift diagnosis of type 1 diabetes before severe symptoms and diabetic ketoacidosis (DKA) set in.

What do you do next?

• Take a deep breath.
• If you test positive for one autoantibody and have no symptoms, your risk for type 1 diabetes is low.
• Your doctor will monitor your blood sugar, and you should watch for symptoms.
• Retesting in a few months or years might be advised. If you test positive for two or more autoantibodies, your risk is higher.
• Keep an eye on symptoms and see your doctor regularly for blood sugar and A1C checks.
• Consider enrolling in a research study to identify early stages of type 1 diabetes, even years before symptoms appear.
  • Enrolling also helps researchers study type 1 diabetes and find ways to prevent it.

Other things you could do include:

• Staying in close contact with your doctor for any updates or retesting
• Continue monitoring for symptoms of type 1 diabetes
• Educating yourself on the management of type 1 diabetes
• Assessing your health insurance options for testing or future treatments

Knowledge is power

• Getting tested for type 1 diabetes autoantibodies helps you make informed choices.
• It’s a crucial step to assess your risk and prevent a dangerous diagnosis of type 1 diabetes
  • Especially if you test positive for two or more autoantibodies.
• If you are diagnosed, remember you’re not alone—there’s a supportive type 1 diabetes community ready to help you navigate your journey.

This content was made possible by Provention Bio, a Sanofi Company.

Editorial control rests solely with Beyond Type 1.