Highlights:
- Type 1 diabetes can be detected in its earliest stages with a blood test that looks for four specific autoantibodies.
- If you have one positive autoantibody, you have pre-stage 1 type 1 diabetes and you are considered at risk. You have a 15% chance of developing type 1 diabetes in the next 10 years.
- If you have more than one autoantibody, you have early-stage type 1 diabetes and you have nearly a 100% lifetime risk of progressing to type 1 diabetes. Monitoring recommendations at this stage include having regular assessments of your blood sugar levels and utilizing a CGM. A treatment therapy called TZIELD is available that can delay the progression to a clinical type 1 diabetes diagnosis.
If you were recently screened for type 1 diabetes or you are planning to be tested in the future, new guidelines are now available with recommendations on what to do when you receive your results. A team of international diabetes experts released the guidance with a focus on follow-up care if you have early-stage type 1 diabetes. Early-stage means you have more than one positive T1D autoantibody, but you don’t yet have the typical symptoms of type 1 diabetes and your glucose levels are normal (or only slightly abnormal).
What Are Type 1 Diabetes Autoantibodies?
There’s only one set of markers in the blood — islet autoantibodies — that are associated with the development of T1D, and the autoantibodies can be detected with a simple blood test. According to Breakthrough T1D, the autoantibodies to screen for include:
- Insulin autoantibody (IAA)
- Glutamic acid decarboxylase 65 autoantibody (GADA)
- Insulinoma-associated antigen 2 autoantibody (IA-2A)
- Zinc transporter 8 autoantibody (ZnT8A)
Got all that? There will be a test at the end of the article!
The Stages of Type 1 Diabetes
There are three stages of type 1 diabetes. Stages 1 and 2 are considered early-stage.
- Pre-stage 1: If you have one positive autoantibody, you are at risk for developing type 1 diabetes.
- Stage 1: More than 1 autoantibody can be detected in the blood, which means the body’s immune system has started to attack the insulin-producing beta cells in the pancreas. However, blood sugar levels are normal, and no symptoms are present.
- Stage 2: Blood sugar levels are slightly abnormal (medical folks call this dysglycemia …kind of like prediabetes) due to the destruction of more beta cells. Most people still don’t have symptoms in this stage.
- Stage 3: Blood sugar levels are high, and symptoms like excessive thirst, frequent urination, unintended weight loss, and blurred vision are present. This is historically when most people are diagnosed with T1D (often in DKA) and when insulin becomes necessary.
The five-year and ten-year risks of developing T1D at stage 1 are 44% and 70%, respectively, and the lifetime risk is nearly 100%. If you reach stage two, the five-year risk is about 75%, and the likelihood of developing T1D in your lifetime is nearly 100%.
The goal of screening people before symptoms develop is to prevent DKA and allow people to have time to learn about type 1 diabetes management before an emergency situation occurs. In addition, it is a time to become educated about the therapies that may prevent or delay the onset of stage 3 T1D.
If Your Type 1 Diabetes Autoantibody Results Are Negative, Are You in the Clear?
A negative antibody result does not mean that you will never develop type 1 diabetes. The autoimmune process of type 1 diabetes can occur at any time during a person’s life. Talk to your doctor to determine how often you should be screened based on your personal and family history. If you have a family history of T1D or a personal history of autoimmunity such as celiac disease, Graves’ disease (hyperthyroidism), or Hashimoto’s thyroiditis (hypothyroidism), getting rescreened every year is currently recommended.
What to Do If You Have One Positive T1D Autoantibody
If you have one positive T1D autoantibody, you have what’s called “pre-stage 1 type 1 diabetes” and you are considered at risk. You have a 15% chance of developing type 1 diabetes in the next 10 years. Talk to your healthcare provider about getting screened every year to see if additional antibodies develop, and make sure you know the symptoms of T1D to watch out for.
What to Do If You Have Two or More T1D Autoantibodies
If you have more than one autoantibody, you have early-stage type 1 diabetes. As mentioned above, people with two or more autoantibodies have nearly a 100% lifetime risk of progressing to T1D, with younger children progressing more quickly than adults.
Step # 1: Retest
The accuracy of autoantibody tests can vary between labs, so the first positive test should be confirmed with a second test within 3 months and, where possible, in a lab that meets the performance standards set by the Islet Autoantibody Standardization Program (IASP).
TrialNet is an international network of leaders in T1D research and clinical care with 27 centers in the United States. They can confirm your results and may suggest additional testing. You can speak with an expert about your results by calling 1-800-425-8361.
Step # 2: Assess Your Blood Sugar Levels
If you have early-stage type 1 diabetes, you should have regular assessments of your blood sugar levels to prevent DKA, minimize the risk of a trip to the ER, and determine when insulin therapy becomes necessary. Your doctor may order one—or more—of the following blood tests:
- Fasting blood glucose test
- Oral glucose tolerance test (OGTT)
- A1c test
If you have multiple autoantibodies and abnormal glucose levels, you are at a higher risk for progressing to stage 3. Even if your blood work comes back normal, your doctor may want to repeat labs periodically to check for any changes.
Step # 3: Get a Continuous Glucose Monitor
CGMs are wearable devices that measure glucose levels under the skin. They can create alerts and inform you when your blood sugar levels are rising or falling. If you’re in the early stages of type 1, getting a CGM can help you keep an eye on any changes in your blood sugar levels. Even if you only wear one for 10-14 days twice a year, it will still be able to help you pick up fluctuations in your blood sugar.
Current CGMs on the market include the Dexcom G7, the FreeStyle Libre 3 Plus, the Medtronic 780G, and the Eversense 365.
Early Intervention Therapy
A relatively new treatment therapy that can delay the onset of stage 3 type 1 diabetes was approved in the U.S. in 2022. TZIELD is a medication that’s indicated for people eight years old and older who are in stage 2 T1D. It’s administered via infusion for 30 minutes once a day for 14 days. The average delay in the onset of type 1 observed in the clinical study was approximately three years, with some research participants remaining T1D-free for up to seven years (and counting).
Diabetes Education and Support
If you tested positive for T1D autoantibodies and are in the early stages of the disease, the silver lining is that you have time on your side. Use this opportunity to become educated about the condition. Explore the TCOYD® website for articles, videos, and podcasts on a variety of topics for newbies as well as diabetes legends. Seek support and learn from others in the diabetes online community and our T1D Facebook group.
The Bottom Line
Type 1 diabetes can happen to anyone at any age without warning, but first and second-degree family members of people with type 1 are nearly 15 times more likely to develop it.
Most people will still have a negative test result, but if yours comes back positive, now you know what to do. Talk to your doctor about confirmatory testing and get a blood sugar monitoring plan in place.
If you or a family member is at risk for T1D and have not yet been tested, consider one of the following screening options:
- Ask your healthcare provider for a test at their clinic, or for a referral to a participating lab such as Quest or Labcorp. Most commercial insurance plans in the U.S. cover the cost of screening in whole or in part.
- Visit trialnet.org. TrialNet is a free screening program for family members of people with type 1, or those between the ages of 2.5 to 45 years who’ve tested positive for at least one T1D-related autoantibody outside of TrialNet.
- Visit askhealth.org. ASK (Autoimmunity Screening for Kids) provides screening for U.S. kids (ages 1-17). No family connection to T1D is required.
- Get an at-home test through a provider like Enable Biosciences.
You can find more information about screening at ScreenForType1.com.
Additional Resources:
I Screen You Screen…Why Everyone Should Be Screened for T1D
New Program in North Carolina Uses Genetic Testing to Screen Newborns for T1D
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