Type 1 Diabetes Screening

Type 1 Diabetes Screening and Early Detection: A Complete Guide

Type 1 Diabetes Screening and Early Detection: A Complete Guide
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How Type 1 Diabetes Screening Works

Learn about type 1 diabetes screening and how early detection can make managing the condition easier.
How Type 1 Diabetes Screening Works

Most people who have received a type 1 diabetes diagnosis will tell you that it seemed to strike randomly and abruptly, but it’s possible to identify the condition with a blood test long before it causes health issues. A growing chorus of experts say that more people — including anyone with a family history of type 1 diabetes — should be screened for the autoantibodies that cause type 1 diabetes.

Proactively screening for type 1 diabetes allows people to benefit from a new treatment that can delay the onset of the disease and training that can help make the transition to life with diabetes safer and less traumatic.

How Type 1 Diabetes Screening Works

Type 1 diabetes screening uses a blood test to search for malfunctioning proteins called autoantibodies.

 These autoantibodies attack cells in the pancreas called beta cells, which create and release the hormone insulin. As the body loses its ability to create insulin, blood sugars rise to dangerous levels. This autoimmune attack is the cause of type 1 diabetes.

There are multiple autoantibodies, and type 1 diabetes requires the presence of at least two different types to develop.

If your blood test shows that you have no autoantibodies, you probably have a low risk of developing type 1 diabetes — although not necessarily zero.

If you have one autoantibody, you have a heightened risk of developing type 1 diabetes.

 You will likely be advised to take another autoantibody test in the future, to see if you develop any additional autoantibodies. Autoantibodies can emerge unpredictably over time, especially in children.
People with two or more autoantibodies, however, are virtually guaranteed to develop type 1 diabetes, although the onset of the full-blown disease could be years away.

 In fact, people with two or more autoantibodies technically already have type 1 diabetes — even if it hasn’t caused any symptoms yet.

The Progression of Type 1 Diabetes

Screening allows doctors to confirm the presence of type 1 diabetes before it becomes dangerous.

Most people with type 1 diabetes are diagnosed only after they see a doctor to treat the symptoms of hyperglycemia (high blood sugar). These warning signs — which include blurry vision, increased thirst, frequent urination, unintentional weight loss, and intense hunger — indicate that blood sugar levels have risen into a dangerous range. These signs, however, represent only the final stage in the slow progression of type 1 diabetes.

Experts delineate three stages of type 1 diabetes development:

  • Stage 1 A blood test will show the presence of two or more autoantibodies, which will eventually cause the autoimmune attack that defines type 1 diabetes. During this stage, blood sugar levels are still normal and there are no symptoms.
  • Stage 2 The autoimmune attack is under way and the pancreatic cells are in the process of being destroyed. At this point a glucose test will show abnormal blood sugar levels, which are not yet high enough to cause symptoms.
  • Stage 3 The person has finally developed full-blown type 1 diabetes. By now, the patient has lost so many beta cells and creates so little insulin that they are experiencing the symptoms of hyperglycemia. Insulin treatment is now necessary.

Because the first and second stages of type 1 diabetes development have no obvious symptoms, they can only be discovered by screening. Though there is no way to prevent the development of type 1 diabetes, identifying these earlier stages of the condition can considerably improve prognosis.

The Benefits of Early Type 1 Diabetes Detection

There are two big benefits to early type 1 diabetes detection: DKA prevention and early treatment to delay symptom onset.

DKA Prevention

Perhaps the single largest benefit to type 1 diabetes screening is the reduced incidence of diabetic ketoacidosis (DKA), a consequence of severe hyperglycemia that can be deadly if not treated promptly.

Today, about 40 percent of American children are diagnosed with type 1 diabetes only after developing DKA.

 This condition is both dangerous and painful. “It’s a very traumatic experience,” says Claudia Lewis, an endocrinology physician assistant at the University Hospitals Diabetes and Metabolic Care Center in Cleveland. “They are super sick in the intensive care unit.”
DKA also appears to have negative long-term health effects. People who endure DKA at diagnosis go on to have a more difficult time managing diabetes,

 and some may also experience cognitive impairment.

If you know that you have an early stage of type 1 diabetes, or a heightened risk of it, you’ll likely be instructed to test your blood sugar regularly in order to catch the first signs of hyperglycemia.

 Testing regularly and collaborating with healthcare providers allows people to be treated with insulin before their condition progresses to a critical state.

“We could prevent a lot of DKA,” says Lewis.

Early detection also gives people time to learn about diabetes and the elements of diabetes treatment, such as carbohydrate counting, thus ensuring a far smoother and less stressful transition once they need to begin insulin therapy.

“It gives people time to cope with the diagnosis. There are a lot of psychosocial barriers, and it’s so much education. If people can learn it over time, rather than in a crash course, it would be helpful,” says Lewis.

Early Type 1 Diabetes Treatment

There is one drug approved to treat people for an early stage of diabetes: teplizumab (Tzield). When given to people with stage 2 type 1 diabetes, Tzield delays the onset of symptoms by an average of nearly three years.

Lewis says that delaying insulin dependency by several years can have massive benefits, especially in younger people.

“It’s much easier to manage if they’re a little bit older. You have time to learn about it. If you delayed the onset from age 18 to age 22, someone could go through their whole college career without diabetes. That would make their life a lot easier.”

Tzield, which is approved for patients age 8 and older, is a liquid that is administered in an IV infusion, once per day over a 14-day period. The drug is also extremely expensive. A full course of the medication reportedly has a sticker price of $193,900.

 Lewis encourages eligible users to look into the drugmaker’s patient assistance program.

Who Should Get Screened?

Type 1 diabetes most commonly develops in children, and the condition runs in families.

 That means the best candidates for type 1 diabetes screening are children who have family members with the disease.

Lewis, who has type 1 diabetes herself, encouraged her siblings to get screened: “I have three younger brothers. They wanted to know so they could do something about it, or so they could have peace of mind if they knew they didn’t have it. We want all patients who have type 1 diabetes to think about getting their family members screened.”

Otherwise, there are no clear guidelines for who should get screened. The American Diabetes Association states that “screening should be offered to those with a family history of type 1 diabetes or otherwise known elevated genetic risk.”

Indeed, Lewis believes that all children should be screened routinely in primary care. Though the condition does have a strong genetic component, “80 percent of people [with type 1 diabetes] have no family history,” she says. Some researchers agree with her. A pilot program in Germany that tested all children for type 1 diabetes autoantibodies was able to dramatically reduce local cases of DKA.

Adults with a family history of the disease may also wish to consider screening. Although type 1 diabetes has a reputation as a condition that strikes during childhood, about half of all diagnoses are made in people over the age of 18.

“We see it at all ages,” says Lewis. “I would never say you’re too old to get screened.”

Resources: How to Get Screened for Type 1 Diabetes

The push for type 1 diabetes screening is relatively new, and not all doctors’ offices or endocrinology clinics have made screening routine.

The first step is to ask your doctor about screening. They may be able to administer a test in their office or refer you to a local lab. If you go through your regular doctor it may help you secure health insurance coverage for the cost of testing.

In the United States, there are several other independent resources that can arrange screening tests, sometimes free of cost.

  • TrialNet offers free type 1 diabetes screening to family members of people with diabetes. Your blood test results are made available to researchers working on type 1 diabetes prevention and cures.
  • ASK — Autoimmunity Screening for Kids, an autoimmunity research effort, offers free screening for both type 1 diabetes and celiac disease to all children under the age of 18, regardless of family history.
  • The Diabetes Link, a nonprofit community for young adults with type 1 diabetes, offers links to screening programs and advice on talking to your doctor and insurance company.
  • Breakthrough T1D, a nonprofit devoted to type 1 diabetes advocacy and research, maintains a page of early detection links and information.

In addition, several private laboratories offer at-home testing kits.

The Takeaway

  • Type 1 diabetes progresses slowly, and can be identified in its earliest stages with a simple blood test.
  • Experts recommend that family members of people with type 1 diabetes consider screening for the condition.
  • Early detection allows patients and their families to prepare for the onset of symptoms, which can considerably reduce the danger, stress, and turmoil that often accompany diagnosis.
  • If your doctor’s office doesn’t support type 1 diabetes screening, a number of resources can help make it convenient and affordable.
Anna-L-Goldman-bio

Anna L. Goldman, MD

Medical Reviewer

Anna L. Goldman, MD, is a board-certified endocrinologist. She teaches first year medical students at Harvard Medical School and practices general endocrinology in Boston.

Dr. Goldman attended college at Wesleyan University and then completed her residency at Icahn School of Medicine at Mount Sinai Hospital in New York City, where she was also a chief resident. She moved to Boston to do her fellowship in endocrinology at Brigham and Women's Hospital. She joined the faculty after graduation and served as the associate program director for the fellowship program for a number of years.

Ross Wollen

Ross Wollen

Author

Ross Wollen joined Everyday Health in 2021 and now works as a senior editor, often focusing on diabetes, obesity, heart health, and metabolic health. He previously spent over a decade as a chef and craft butcher in the San Francisco Bay Area. After he was diagnosed with type 1 diabetes at age 36, he quickly became an active member of the online diabetes community, eventually becoming the lead writer and editor of two diabetes websites, A Sweet Life and Diabetes Daily. Wollen now lives with his wife and children in Maine's Midcoast region.

EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
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