If you have a family history of type 1 diabetes (T1D) or not, you may be considering screening for the condition. While T1D autoantibody screening has been offered in research settings for some time, it’s now available as a simple blood test in commercial labs. 

Why test? Because T1D autoantibodies (or markers) can be detected years in advance, and treatment interventions may help delay its onset. That said, testing for T1D autoantibodies can be a source of stress, creating emotional uncertainties. Even with positive results in hand, the timeline of T1D development is unpredictable and currently unpreventable. 

This means treatment may extend the time before diagnosis but not stop it. For most people, this can take a toll on their mental health. Test-taking anxiety and positive test results can trigger a wide range of emotions, such as anxiety, worry, and fear.  

Here, we’ll discuss T1D testing, new advances in diabetes research, and the emotional impact of early detection. 

 

What is autoantibody testing?  

Autoantibody testing looks for markers (antibodies) that are mistakenly attacking the body’s tissues and cells. In this case, it assesses someone’s risk of developing T1D, often years before symptoms develop.  

Results are broken into the following three stages: 

 

Stage 1 T1D:  

✔️Two or more autoantibodies are present 

🚫 No blood glucose changes  

🚫 No symptoms

 

Stage 2 T1D:  

✔️Two or more autoantibodies are present  

✔️Some blood glucose changes on labs 

🚫 No symptoms 

🚫 No T1D diagnosis

 

Stage 3 T1D:  

✔️Two or more autoantibodies are present 

✔️Hyperglycemia (high blood glucose) on labs 

✔️Symptoms are usually present  

✔️Official T1D diagnosis is made 

 

T1D testing involves a visit to a TrialNet or ASK. screening site, a blood draw in a lab, or a simple finger prick using an at-home test kit. The blood sample is then tested for autoantibodies.  

If the result is positive, you’ll be notified and asked to have lab work for further testing. This may include confirmation of the previous testing, a random blood glucose test, oral glucose tolerance testing, and a hemoglobin A1C test.

Having two or more positive autoantibodies indicates that the immune system has begun to attack healthy insulin-producing beta cells in the pancreas. Moreover, when someone has positive autoantibodies (Stage 1 or 2 T1D), their lifetime risk for progression to Stage 3 T1D is nearly 100%. 

 

Why would I choose to test myself or a family member?  

Understanding T1D risk can give extra time to plan, prepare, and possibly delay a T1D diagnosis. It may also provide an opportunity to participate in ongoing clinical trials and receive Tzield®, an FDA-approved infusion for those 8 years and older in Stage 2 T1D.  

Additionally, research is underway to help preserve insulin production in Stage 3 T1D.   

Although testing can be anxiety-provoking, research suggests that when children are tested, their risk of developing life-threatening diabetes-related ketoacidosis (DKA) at diagnosis decreases by 88%. Above all, understanding T1D risk gives someone time to adapt and prepare for changes on the horizon.   

While 90% of newly diagnosed individuals do not have a family history of T1D, those with family members who do have T1D are 15 times more likely to develop it than the general population. You can read more about screening and the qualification criteria through TrialNet or the ASK program if you’re interested in testing.  

 

Is it normal to have anxiety and worry about testing?  

Yes. Having anxiety and worry are common and normal responses to participating in antibody testing and while awaiting test results.

Committing to the testing process can be a difficult decision to make. You may ask yourself, “Do I really want to know?” For many, the answer is yes. With options to treat and delay a T1D onset and potentially avoid DKA, that’s reason enough.

If you’re waffling about testing, you can ease your worry by speaking about it. Consider having an open discussion with a trusted healthcare provider or contacting the screening program.

Keep in mind that while research suggests anxiety is most heightened in families who receive a positive test result, it also suggests decreased anxiety with early childhood testing. Overall, parents in the study were glad to know their child’s autoantibody status and T1D risk status.

Knowing T1D risk and identifying early glucose changes provides powerful health insights and guidance on next steps. Receiving this information early can give you time to adapt and adjust, and possibly lengthen the time from identification to diagnosis.

Screening programs offer resources for emotional support and counseling, and understand the difficulties of navigating the emotional aspects of screening and ongoing care.  

With results in hand, it’s important to discuss your fears, worries, and anxieties with the testing team — and throughout follow-up care. This way, you can tap into necessary resources to receive the support you need. (more on this below)   

Research shows that parental anxiety decreases over time, but in certain groups, such as female caregivers of children with multiple positive autoantibodies, anxiety levels can remain high. That’s why it’s important not to shoulder your feelings alone.  

  

Who do I reach out to for support? 

Having an awareness of one’s emotional needs is a crucial step in balancing day-to-day life after receiving T1D screening results. 

Keep learning. Understanding what the results mean can broaden your perspective and help you feel fully informed.   

Start talking. By reaching out to others, you are creating a support team for yourself and your family. Seeking ongoing counseling from an expert knowledgeable in T1D could help establish a more trusting relationship. Consider asking for a referral. 

Meet others. Through social media or a forum, you can connect with others who are going through similar experiences. Support groups offer valuable peer-to-peer connections and resources. By connecting online, you can receive emotional and practical support from others walking in your shoes.