What To Do If You’ve Tested Positive for Autoantibodies for T1D

You’ve done the proactive part: you approached your doctor because you’re at higher risk for type 1 diabetes (T1D). You got tested for islet autoantibodies in a diabetes mellitus autoantibody panel blood test that detects the risk of developing it.

Now comes the confusing part—what comes next? `

Once you receive your results, you may expect a few things. You’ll either not have positive autoantibodies for T1D, or you may have tested positive for just one—or several.

The antibodies that these tests check for 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)

Let’s unpack what the results of this test mean.

What does having T1D autoantibodies mean?

Having positive T1D autoantibodies means that either you are at a moderate risk or extremely high risk for developing T1D. You may also already be in the earliest stages of developing T1D.

Over 90 percent of people with new-onset T1D will have at least one islet autoantibody.

This will vary by person, so always talk with your doctor to appropriately interpret your individual test results and what they mean for you.

Testing positive

If you test positive for a single diabetes autoantibody, the other autoantibodies should be assayed. Not everyone who has a single diabetes autoantibody will develop T1D.

The risk of developing T1D within 10 years jumps to 75 percent if an individual tests positive for two or more autoantibodies.

If you do test positive for two or more diabetes autoantibodies, your lifetime risk of developing T1D is nearly 100 percent.

Testing negative

If you test negative for autoantibodies, that most likely means that you’re not at a high risk for developing T1D, however, some people are autoantibody negative at diagnosis. Autoantibody testing cannot be used to diagnose T1D.

If you’ve tested negative for diabetes autoantibodies but are experiencing symptoms of T1D, including frequent urination, excessive thirst, exhaustion and unexplained weight loss, contact your doctor right away or seek emergency medical attention, as undiagnosed T1D can be fatal.

Limitations of autoantibody testing

Negative test results do not completely rule out T1D, as results vary by individual. Additionally, negative test results do not rule out the possibility of type 2 diabetes (T2D), especially if you have symptoms.

The good news is that not all people who have a single autoantibody develop T1D, but most people with two or more autoantibodies eventually do.

Finally, autoantibody testing cannot monitor or diagnose T1D.

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.

Your doctor may also order any of the following tests:

• Fasting glucose test
• Oral glucose tolerance test
• A1C test
• C-peptide test
• Insulin assay test

These can work to confirm your initial positive autoantibodies while also ruling out a T1D diagnosis.

If they order an A1C, they will be able to see your average blood sugar levels over the previous three months and may continue to track that over time to see if it changes.

This can help them make a swift diagnosis of T1D before severe symptoms and diabetic ketoacidosis (DKA) set in.

What do you do next?

First, take a breath.

If you have tested positive for a single diabetes autoantibody, but are not experiencing symptoms, you may not be at high risk for developing T1D in the near future.

Your doctor will want to monitor your blood sugar levels and you can self-monitor for symptoms of T1D. You may also want to have autoantibody testing done again in a few months or years to see if you test positive for a second diabetes autoantibody.

If you test positive for two or more diabetes autoantibodies, you are at a higher risk for developing T1D. You should self-monitor for symptoms of T1D and see your doctor regularly for blood sugar level and A1C monitoring.

You may wish to enroll in a research study that can identify the early stages of T1D years before symptoms occur. Enrolling can also help researchers learn more about the development of T1D and discover 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 T1D
• Educating yourself on the management of T1D
• Assessing your health insurance options for testing or future treatments

These are the most important things you can do if you test positive for diabetes autoantibodies.

You can also ask your doctor about seeking out any currently available T1D preventive medications. These groundbreaking medications and treatments can essentially buy people time before a T1D diagnosis.

Knowledge is power

Knowledge ultimately is power and getting tested for T1D autoantibodies can empower you to make informed choices.

It is a great first step in assessing your lifetime risk for T1D and potentially preventing a dangerous diagnosis of T1D in DKA, especially if you test positive for two or more autoantibodies.

If you test positive and are diagnosed with type 1 diabetes, you’re not alone. There’s a whole T1D community here to support you as you navigate your journey with diabetes.

Editorial Note: This content was made possible by Provention Bio, a Sanofi Company. Editorial control rests solely with Beyond Type 1.