The Stages of Type 1 Diabetes

Here’s what you need to know about the stages of type 1 diabetes (T1D).

What are the stages of type 1 diabetes?

Thanks to leading diabetes organizations like TrialNet and BreakthroughT1D (formerly JDRF), researchers have been able to analyze blood samples from children diagnosed with T1D and their family members, particularly siblings. They tracked which family members developed T1D and which didn’t.

It starts with autoantibodies.

What are autoantibodies?

Autoantibodies develop when your immune system attacks your own body. There are a handful of specific islet autoantibodies that indicate T1D. Researchers can identify those autoantibodies with a simple blood test or finger prick.  

This research led to the clear identification of three stages:

Stage 1

• at least two autoantibodies are present
• blood sugar levels are normal
• no physical symptoms of T1D

Stage 2

• at least two autoantibodies are present
• blood sugar levels are abnormal but not persistently high
• no physical symptoms of T1D

Stage 3

• multiple autoantibodies might still be present (many people test negative at diagnosis)
• high blood sugar levels
• noticeable physical symptoms 

In stage 3, a person with significant beta cell loss must start daily insulin therapy via injections or an insulin pump. 

How quickly do the stages of T1D develop & progress?

A person who develops T1D might feel like the disease came on very suddenly, with noticeable and dramatic diabetes symptoms developing over a few weeks. In reality, the stages can take years to develop.

Anecdotal research suggests that a stressful event—such as the flu, COVID-19, puberty, a routine vaccine, or a divorce—can trigger the immune system to ramp up its attack on the pancreatic beta cells that produce insulin, leading to the full onset of stage 3 T1D. 

Many people think that flu, a vaccine, etc. “caused” their T1D, but these factors simply exacerbated the disease that was already developing. Those outside factors simply pushed it along from stage 2 to stage 3.

In adults, the stages of type 1 adult onset diabetes can actually take much longer. This is also known as type 1.5 or LADA (latent autoimmune diabetes in adults). The immune system attacks the cells in the pancreas that produce insulin but at a much lower intensity compared to T1D developing in children and teens. 

How can you get tested for stage 1 and stage 2 of type 1 diabetes?

You and your children can get screened for the autoantibodies of T1D in various ways.

T1D Screening

• TrialNet: TrialNet is an ongoing study. They’ll send you a kit that you can take to any clinic that manages bloodwork with Quest or Labcorp. (FREE)
• Autoimmunity Screening for Kids (ASK): This approach is run by the Barbara Davis Center in Colorado. You can ask for at-home kits sent in the mail if you aren’t local to CO. (FREE)
• PLEDGE: Sanford Health runs the PLEDGE t1d autoantibody program in the Midwest. To enroll, you must have a My Sanford Health account. (FREE)
• Primary care doctor: The tricky part with this approach is that there currently is no “type 1 diabetes autoantibody panel”. This means your doctor would need to know which specific tests to order. (Determined by your health insurance coverage)

Is it important to get tested for T1D before you need insulin?

Yes, it’s critical — even if you know the signs and symptoms of T1D (frequent urination, weight loss, blurred vision, lethargy and nausea, among others), identifying T1D in its earlier stages can be life-changing.

Here’s why:

Diabetic Ketoacidosis (DKA)

Research has determined that one of the diabetes complications of prorogued high blood glucose levels is diabetic ketoacidosis (DKA). This dangerous side effect can permanently damage a person’s brain. Waiting for the symptoms of T1D means waiting for DKA. The American Diabetes Association (ADA) cites you can prevent DKA by learning the warning signs and checking your urine and blood sugar level regularly.

Prolonged Insulin Production

There are a handful of ongoing studies today testing different ways to prolong and protect insulin production in the earlier stages of T1D! 

These studies include using GLP-1s like Ozempic, investigational therapies like Diamyd’s GAD-65, and other research on the cusp of human trials, like Levicure’s therapy using three existing medications that, when combined, protect insulin production in T1D. 

Some of this research is looking for people who are in stage 1 or stage 2, and other trials might be looking for people who were diagnosed within the last 6 months! 

By getting screened, you or your child open a world of life-changing options. 

Tzield®

There is currently one FDA-approved treatment to delay the full onset of T1D: Tzield. Tzield involves a 14-day out-patient process. 

Yes, it’s scary to find out you or your child is in the early stages of developing a lifelong autoimmune disease — but you can take that information and do something with it!

Get screened! It’s not fun. Your children won’t want to do it. But getting screened gives you an opportunity to intervene! Early diabetes management can slow down the T1D progression. What's more, diabetes research and technology are advancing rapidly. Continuous glucose monitoring and automated insulin delivery systems (AID) improve T1Ds quality of life.
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Speak with your healthcare provider and get your family screened for the earliest stages of type 1 diabetes.

Reference websites

https://www.trialnet.org/t1d-facts 

https://www.trialnet.org/events-news/blog/type-1-diabetes-staging-classification-opens-door-intervention

https://beyondtype1.org/different-stages-type-1-diabetes/

https://www.tzieldhcp.com/stages-of-type-1-diabetes