If you or a loved one lives with type 1 diabetes (T1D), you may worry about T1D risk in other family members. Even so, deciding whether to screen for T1D-related autoantibodies can feel complicated. Proactive screening, however, is becoming increasingly common for those at risk — and here’s why. 

T1D markers can be detected through blood testing years before changes in glucose (blood sugar) occur. This, coupled with treatment options like Teplizumab (TZIELD®) — a 14-day IV infusion that can potentially delay its onset, has improved the appeal of screening. 

While there isn’t a cure for T1D yet, early-stage detection may lead to better health outcomes by decreasing the risk of life-threatening diabetic ketoacidosis (DKA), providing families more time to learn and prepare, and a window to access treatment and research opportunities to delay or prevent progression to Stage 3 T1D.  

Navigating these choices often means weighing both practical and emotional factors. “The decision to screen your child is an incredibly personal one, and I think anyone considering it needs to decide for themselves if knowing will empower them, or cause too much worry to be worth it,” said Suzanne McKee, T1D Exchange Director of Marketing — whose daughter lives with T1D and whose son screened positive for Stage 1 T1D about three years ago.  

“For us, especially since there are now treatments that could delay the onset, having this information allows us to learn as much as possible and be proactive — if and when — we start to see the progression from Stage 1 to Stage 2,” she said. 

Ultimately, the chance to detect T1D earlier — and take action — can be a powerful motivator and a decision worth considering, especially given existing treatment options to potentially delay its onset. However, this opportunity comes with uncertainties that can weigh heavily, taking a toll on the emotional health of individuals and their families. Read on to learn more.  

 

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The discovery that T1D autoantibodies, also known as islet autoantibodies, appear years before T1D symptoms emerge has changed the game for families with a history of T1D. With early interventions potentially delaying its onset, many are opting for screening. However, it’s a complex decision, especially when faced with positive results.  

 

What is autoantibody testing? 

Autoantibody testing is a simple laboratory blood test or an at-home capillary test that checks for immune proteins (markers) that are mistakenly attacking healthy insulin-producing beta cells.  

With positive results, the goal is to preserve beta cells and delay or prevent the onset of T1D. Receiving results is far from easy, as McKee explains: 

“I started crying when the phone rang, and I saw it was ASK (Autoimmunity Screening for Kids), because I knew a phone call meant a positive screen — otherwise, they would send a letter,” she said.   

“It was an incredibly difficult time for all of us. Knowing the impact T1D has on your child, and then finding out your other kiddo is destined to get it at some point, has a real impact,” explained McKee   

“But over time, the fear has subsided, and we’re focused on catching the transition from Stage 1 to Stage 2 as early as possible, so that we can hopefully delay the onset even longer.” 

While this is a shared experience for families who choose to screen their children, each navigates the emotional impact differently — and their feelings may change over time. What brings some a sense of focus and preparedness may leave others feeling unsettled and overwhelmed.  

“To be honest, the information has made us feel very anxious and scared. The idea of ‘knowledge-as-power’ has left us with more fear than empowerment,” explained J.K., who lives with T1D, along with her oldest daughter. Last year, she learned that her youngest child has multiple T1D autoantibodies, too. “The whole experience is giving us PTSD.”   

 

Who should be tested?  

ADA and Breakthrough T1D recommend testing for anyone with a relative who lives with the condition. That’s because relatives of those with T1D have a 15 times greater risk than those without.   

With this in mind, it’s important to note that while screening programs currently target individuals who have a relative with T1D (TrialNet) and those who may or may not (ASK), about 90% of newly diagnosed individuals have no family history. As a result, there is a growing advocacy push for T1D screening in the general population. 

For now, testing can be done through a research study or your physician’s office. You can get blood work drawn at an approved lab or use a mail-in test kit, if you meet certain criteria. Check out this Screening Support Guide from Breakthrough T1D with easy-to-follow steps.  

 

What are the potential benefits of autoantibody testing? 

Early detection may help people stay healthier by decreasing their risk of life-threatening DKA. It also gives families more time to learn about type 1 diabetes, prepare for what’s ahead, and access treatments or research that may delay — or even prevent — the progression to Stage 3 T1D. 

To understand why DKA is a significant concern, it’s important to first know what happens in the body and why prevention matters.  

When the body doesn’t have enough insulin, blood glucose levels can become dangerously high. That’s because without insulin, glucose can’t enter the body’s cells to provide energy. As a result, the body starts breaking down fat for fuel, leading to serious health risks, including dehydration, electrolyte imbalances, and a buildup of ketones (acids) in the blood. 

Avoiding DKA is crucial because it can also prevent life-long complications, including memory issues, recurrent episodes of DKA, severe hypoglycemia, and more difficult-to-manage glucose levels. 

 

Studies show:  

  • About 40% of children, 38.5% of youth <20 years old, and between 6% and 21% of adults have DKA at diagnosis.
  • DKA rates in children can be reduced from nearly 60% at diagnosis to less than 10% through autoantibody testing and ongoing screening, according to Colorado ASK program data.
  • When diagnosed in Stage 1 or 2, the risk of developing DKA at diagnosis for all ages drops to less than 4%, according to TrialNet.
  • DKA is more common in children, those uninsured or publicly insured, and in certain racial and ethnic minority groups.

 

Research highlights that even when a parent or first-degree relative lives with T1D and is vigilant and informed, DKA at diagnosis still occurs at about a rate of 30%. That’s why screening and ongoing monitoring are important. 

With treatment options like Teplizumab and other clinical trials underway to delay the onset of Stage 3 T1D, autoantibody testing and staging can help to improve outcomes for those at risk.  

 

What are the “Stages” of T1D? 

While T1D often seemed to “occur suddenly,” we now know T1D has three distinct Stages that develop over time. Let’s take a look at what they are. 

 

Stage 1 T1D:   

✔️Two or more autoantibodies are present  

🚫 No blood glucose changes   

🚫 No symptoms  

🚫 No T1D diagnosis
    

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  

 

*If someone tests positive for autoantibodies and is diagnosed with Stage 1 or 2 T1D, their lifetime risk of developing T1D “approaches 100%,” according to TrialNet.  

 

Receiving test results 

With no autoantibodies detected in the screening results, the risk of developing T1D is relatively low. However, research shows not everyone tests positive for autoantibodies at diagnosis, so it’s not a foolproof indicator.  

With autoantibodies detected in the screening results, you’ll learn about what type(s) of diabetes-related autoantibodies are present. They may order follow-up, confirmatory lab work for autoantibodies, and look for any changes in glucose or insulin production.  

 

Labwork may include: 

  • A1C,  
  • fasting glucose, 
  • random glucose, 
  • oral glucose tolerance, 
  • C-peptide, and 
  • insulin assay testing 

 

Together, these results will help determine the stage of T1D and predict risk, which may open the door for treatment and research participation. 

With results in hand, the watching and waiting period can be fraught with anxiety and worry. That’s why it’s essential to receive ongoing support from a team of skilled providers — who will also monitor T1D progression.   

“It took several follow-up phone calls to understand the next steps and probabilities,” explained J.K. “The whole experience has put me into high anxiety, so I am not sure what I am processing correctly.”  

“As of now, I’ve landed on, ‘she is good for now, but could develop type 1 within the year, within 10 years, or never.’ We need to check a random blood sugar and A1C or have her wear a Dexcom CGM every six months.”  

With ongoing screening come newfound stressors and what-ifs, J.K. explains, “Unfortunately for me in this scenario, knowledge is anxiety, and ignorance is bliss.”  

 

The emotional burden of knowing and waiting  

“For our family, knowing and understanding my son’s risk — while it’s been pretty devastating — has also been empowering,” said McKee. “Since the day my daughter was diagnosed, I’ve worried about his chances of also having T1D, so screening for us just confirmed what I already feared was true.” 

“We visit ASK quarterly. At each visit, they retest autoantibodies, have him put on a CGM for 10 days, and check his A1C. He also periodically does an oral glucose tolerance test (OGTT),” she explained. 

In terms of knowing, McKee shared it’s better for her to have the information than to worry about possibilities. “It has also allowed us a lot of time to talk with him about it,” she said.  

“It’s been almost three years now since he screened positive for autoantibodies, and I still feel that we made the right choice for our family. But the quarterly check-ins and additional studies have started to weigh on him a bit, so we’re backing off a little now to ensure the follow-up visits don’t become too much of a burden. “  

J.K. and her family remain grateful for the treatment and research possibilities, but the uncertainties often overshadow them. 

“This process just feels stressful with its tricky ‘window of time.’ We’re grateful there’s now something available to fend it off (since this option didn’t exist for my older daughter or me), but now we’re stuck in this ‘unknown zone’ trying to catch the sweet spot where it can be treated before it is too late. Should we treat her like a diabetic or let her live her carefree life now while she still can?” She asks. 

  

What support is available for families navigating T1D screening and results? 

When first learning about positive screening results, it can be a significantly stressful time, bringing feelings of shock, grief, anger, guilt, and depression, according to research. 

One study found that 74.4% of parents felt significant levels of anxiety about their child’s T1D risk at their first follow-up. While there are psychosocial support recommendations for those in early Stage 3 T1D, standard recommendations are needed for earlier Stages. 

Routine visits with diabetes specialists and ongoing testing, combined with integrated psychosocial care, are vital to T1D. With more research, similar standards will likely develop for Stages 1 and 2. While support is available, it may vary by program.  

At the Barbara Davis Center, the McKees were offered time to talk to a counselor at the outset but haven’t been since. “However, my son and I both periodically take surveys to check in on mental health burden,” she said. “The BDC also has a number we can call at any time, or during clinic hours, if we have questions or need support.” 

  

You can find more support here: 

 

Wrapping it up 

Type 1 diabetes autoantibody screening has changed how individuals and families understand their T1D risk. While early detection allows time to prepare, seek treatment, and potentially delay its onset, it comes with uncertainties and emotional challenges. Each family has to balance the benefits and stressors of screening to decide what’s best for them.  

Blood tests can identify T1D markers years before glucose changes, and treatments like Teplizumab (TZIELD®) can potentially delay its onset, making screening more attractive than ever.  

 

 

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