What is the Likelihood of Developing Type 1 Diabetes If You Test Positive for Autoantibodies?

So, you got screened for autoantibodies. The results came back saying you tested positive for one or more autoantibodies. The question now is, what’s the likelihood of developing type 1 diabetes?

• First, take a breath. No matter what comes next, you’ve got this
• Second, remember that testing positive for autoantibodies is not a type 1 diabetes diagnosis. It’s additional information about your risk of developing type 1 diabetes, which may be why you chose to get screened
• Third, know that whatever your risk of developing type 1 diabetes, there’s a path forward and it starts with information

What’s my risk of developing type 1 diabetes if I tested positive for antibodies?

Studies show that the risk of developing type 1 diabetes increases with the number of autoantibodies detected in screening tests.

Your risk—and what to do next—is different if you tested positive for one vs. two or more autoantibodies.

What happens if you test positive for one autoantibody?

Testing positive for one autoantibody means you’re at higher risk of developing type 1 diabetes in your lifetime than someone who tested for no autoantibodies.

Your risk, however, is much lower than someone who tested positive for two or more autoantibodies.

• If you tested positive for one autoantibody, you have a 15% chance of developing type 1 diabetes in the next 10 years.
• A positive screening test needs to be confirmed with a second blood test, and your healthcare provider (HCP) may also test for the other type 1 diabetes autoantibodies.

Even if you’re not at high risk of developing type 1 diabetes, your HCP may follow you more closely.  He or she may order more tests to screen you for other autoantibodies.

They may also teach you about the early warning signs and symptoms of type 1 diabetes.

What happens if you test positive for multiple autoantibodies?

Unfortunately, testing positive for two or more autoantibodies means you’re at high risk of developing type 1 diabetes in your lifetime.

If you tested positive for multiple autoantibodies, the chance that you’ll develop type 1 diabetes is:

• 44% in the next five years
• 70% in the next 10 years
• 84% in the next 15 years
• Almost 100% in your lifetime

If you tested positive for multiple autoantibodies but don’t have any symptoms, the good news is, you’re in the early stages of type 1 diabetes. Your screening results may help you get diagnosed early and prepare for a diagnosis. Your HCP may start testing your blood-sugar levels and may also:

• Refer you to a specialized center for further evaluation.
• Suggest that you participate in type 1 diabetes research.
  • If you’re eligible, this may include taking part in a clinical trial for a treatment that may prevent or delay the development of type 1 diabetes.
• Provide you with type 1 diabetes education—so you can learn to spot the warning signs of type 1 diabetes—or refer you to a Certified Diabetes Care and Education Specialist (CDCES).

Even though testing positive for type 1 diabetes autoantibodies is tough, remember that an early diagnosis—thanks to screening—might help you avoid severe and even life-threatening complications.

What are the 3 stages of type 1 diabetes?

Let’s look at the three stages of type 1 diabetes in more detail.

Stage 1 T1D 

Can be detected in the blood through autoantibody testing. There are no symptoms and blood sugars are normal, but the immune system has already begun attacking the insulin-producing beta cells. The likelihood of needing to take insulin for T1D within five years is 44%, in 10 years it is 70% and lifetime risk is 100%.

Stage 2 T1D

Can be detected in the blood through autoantibody testing. There are still no symptoms but now blood sugars have started to rise due to increased beta cell destruction. The likelihood of needing to take insulin for T1D within five years is 75% and lifetime risk is 100%. 

Stage 3 T1D

By this time, blood sugars are high and you’ll have symptoms of T1D. This includes frequent urination, excessive thirst, weight loss and fatigue. Taking insulin for T1D is now required, but the intensity is based on the level of beta cell function remaining in the body.

How to cope with a positive type 1 diabetes autoantibody test

A positive test for multiple autoantibodies—and the associated high risk of developing type 1 diabetes—can be scary and overwhelming.

Not knowing when you’ll be diagnosed might also keep you on edge.

Educate yourself

Dr. Mark Heyman, a diabetes psychologist and a CDCES who’s been living with type 1 diabetes since 1999. Dr. Heyman suggests reframing this test result from “a ticking time bomb” to “the gift of time to prepare.”

“The best thing people who have recently tested positive for diabetes autoantibodies can do is to educate themselves on what diabetes is and how it is managed,” he says.

To start learning about type 1 diabetes, you can:

• Ask your HCP to refer you to a diabetes-education program recognized by the ADA
• Locate a CDCES near you

Dr. Heyman also hosts a type 1 diabetes podcast—LiveFree with T1D. It’s a great place to start getting answers to many of your questions about type 1 diabetes.

Find support from a mental-health professional

Preparing for a type 1 diabetes diagnosis may relieve some of your anxiety, but you may need some extra help to cope with the shock of a positive autoantibody test and what this might mean. If you’d like to get help from a mental-health provider who has expertise in diabetes care, ask your HCP for a referral or consult the ADA’s Mental Health Directory to find a provider near you.

Find support from the type 1 diabetes community

An important thing to remember throughout your type 1 diabetes journey—whether you’ve tested positive for type 1 diabetes autoantibodies or were newly diagnosed with type 1 diabetes—is that you’re not alone.

Want to know if you or a loved one are at risk for developing type 1 diabetes? Find out using Beyond Type 1’s free risk assessment tool. If you’ve been recently diagnosed, check out our Beyond Diagnosis guides with information to help you thrive. Available in English and Spanish.