Understanding Screening for Type 1 Diabetes: What You Need to Know

By Ashlyn Smith, MMS, PA-C, DFAAPA, LSC

ELM Endocrinology & Lifestyle Medicine

Type 1 diabetes (T1D) is a lifelong condition that often begins in childhood or early adulthood—but it can develop at any age. With more awareness and access to early screening, we now have the tools to detect the disease in its earliest stages—before symptoms even begin. Here’s what you need to know to protect yourself or your loved ones.

The decision to screen for T1D is complex and personalized, and you don't have to navigate it alone.

What Is Type 1 Diabetes?

T1D is an autoimmune disease, meaning the body’s immune system mistakenly attacks the insulin-producing cells in the pancreas. Without insulin, the body can’t regulate blood sugar effectively, leading to serious health complications if left untreated.

Unlike type 2 diabetes, which is linked to insulin resistance and lifestyle factors, T1D typically occurs without warning and is not preventable.

Who Is at Risk?

T1D can affect anyone, even those with no family history. However, your risk is higher if:

• A parent or sibling has T1D

• You carry certain genetic markers

• You have a history of a different autoimmune condition

• You are under age 20

Even with no symptoms, people with a family history should be screened for early signs of the disease.

Watch for These Symptoms

Once blood sugar becomes too high, symptoms of T1D may appear quickly:

• Frequent urination (especially at night)

• Constant thirst

• Unexplained weight loss

• Fatigue

• Nausea, vomiting, or abdominal pain

These may signal a dangerous condition called diabetic ketoacidosis (DKA)—seek emergency care immediately.

The 3 Stages of Type 1 Diabetes

We now know that T1D doesn't happen overnight, but in three stages:

Stage	What is it	What to Do
Stage 1	Autoantibodies are present (immune system is active) but blood sugar is normal	Monitor with regular labs You can continue to see your primary care provider or choose to see a specialist
Stage 2	Autoantibodies are present AND blood sugar begins to rise (prediabetes)	More frequent testing and education Routine referral to a specialist is recommended
Stage 3	Symptoms appear and clinical diabetes is diagnosed	Start insulin and full treatment plan with an urgent referral to a specialist

If caught early—before symptoms begin—monitoring and treatment can help delay or even prevent complications.

How Can I Get Screened?

You can get screened through a simple blood test for diabetes-related autoantibodies. These programs are often free or billed through your insurance and can detect T1D in the earliest stages.

These tests are available at:

• TrialNet – Free testing for at-risk children and adults

• ASK (Autoimmunity Screening for Kids) – Ages 1–17, even without family history

• Screening with home testing kit or via lab draw – Billed through insurance

Is There a Way to Delay T1D?

Yes—If a person is in Stage 2 T1D, a treatment called Teplizumab (Tzield) can delay the onset of full-blown T1D by an average of two years. This offers families more time to plan, prepare, and take preventive steps.

A number of clinical trials are available for to delay, treat, or even cure T1DM. More information can be found here.

What You Can Do Today

✅ Know your risk: Especially if you or your loved one has a family history of T1D

✅ Get screened: It’s simple, often free, and gives peace of mind to be PROACTIVE, not REACTIVE

✅ Watch for symptoms: Early recognition can save lives and can help reduce the risk of life-threatening DKA

✅ Ask about prevention: New treatments and clinical trials are available

✅ Stay connected: Partner with your healthcare team for long-term support

How I can help support you with T1D screening

·       I ask about risk factors

T1D screening is a relatively new area of medicine and we are working hard to help busy providers get up to date on the latest recommendations. I am actively involved in the national education initiatives and have a passion for empowering both providers and patients with the knowledge to make the decision about risks versus benefits of screening for T1D. I look at the clinical picture and proactively seek out and screen for the T1D risk factors to see if you are at risk.

·       I normalize feelings about T1D screening

The decision on screening for T1D can be complex and come with a variety of feelings. You may feel empowered to know your risk for developing T1D. You may feel motivated to look for answers for your loved ones. You may feel anxious at the idea of knowing you or your loved one are at risk and not sure what that means for the future. Identifying your risk for T1D does not only mean that you have a genetic risk for disease. It means equipping you with essential tools to manage that information:

o   Education and counseling about your disease risk, clinical trial options, symptoms, potential treatment options, and the very normal feelings that come learning about the diagnosis

o   Glucose monitoring education, tools, and personalized goals

o   Referral to clinical trials, mental health professionals, diabetes educators, or nutritionists depending on your individual needs

o   Consideration for preventative treatment to potentially delay the progression to clinical Stage 3 or “full blown” T1D

·       We collaborate on your care plan together

At ELM Endocrinology & Lifestyle Medicine, we believe in whole-person, proactive care. If you or your family members are at risk for T1D, we’re here to help you navigate screening, education, and support every step of the way.

We will work toward a shared medical plan and realistic goals that align with your hopes for therapy. Additionally, I advocate strongly for patient access to diabetes technology, such as continuous glucose monitoring if that fits your needs and preferences. We will also discuss additional resources that may support you, including screening and monitoring resources, diabetes education, preventative treatment, and mental health or clinical trial enrollment.

Take home message:

Learning you are at risk of a chronic medical condition can generate complex emotions for you and your loved ones. Pairing with an experienced healthcare team helps equip you with the education, tools, referrals, support, and potential treatment, which can help turn anxiety into action. Remember, anxiety is completely normal! We address all aspects of health in a non-judgmental, supportive, and empowering environment to fit your preferences and needs wherever you are in your T1D screening journey.

Have more questions about T1D screening? I am here to help—let’s connect on a free educational consultation to discuss further!

Access the free Type 1 Diabetes toolkit I created with the American Association of Physician Associates for more resources and tips + access ELM's quick reference on screening for Type 1 Diabetes here:

T1D_Screening_Infographic_ELM.pdf

Download PDF • 4.09MB

As a T1D Detect Ambassador, I am committed to early detection, education, and advocating for access to trials and intervention.

As a TrialNet Ambassador, I help raise awareness of free T1D risk screening, clinical trials, and early detection strategies to slow or prevent Type 1 diabetes.

Together, these Ambassador roles allow me to support families, empower clinicians, and champion research that brings us closer to preventing or delaying Type 1 diabetes.

Disclaimer:

The content on this blog is for informational purposes only and is not intended to provide medical diagnosis, treatment, or replace professional medical advice, diagnosis, or care. Always consult a qualified healthcare provider with any questions regarding a medical condition or treatment.