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T1D Information for FAMILIES

 WHY screen  for early Type 1 Diabetes?

 HOW do I screen  for early Type 1 Diabetes?

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 WHAT are the stages  of T1D?

Result: Screened  POSITIVE  

Result: Screened  NEGATIVE  

Type 1 Diabetes  SYMPTOMS 

 WHY screen   for early Type 1 Diabetes?

In type 1 diabetes (T1D), the immune system destroys cells in the pancreas that make insulin. Insulin helps us use the energy from foods we eat. A person who has T1D needs lifelong daily insulin injections to stay healthy. Screening for T1D — with a simple blood test for T1D associated antibodies (islet autoantibodies) — can identify children who are at high risk of developing T1D and can prevent children from getting very sick.


1.  Most children with T1D (90%)  DO NOT have a family member with T1D.


2.  Most children who develop T1D are otherwise healthy.  

 

3.  Type 1 diabetes can be hard to recognize.

Symptoms of increased thirst, increased urination and lack of weight gain or weight loss can be hard to recognize. Because these symptoms can be subtle, early T1D can look like a growth spurt or even a change in thirst associated with a change in routine or the weather. Sometimes, parents simply don’t realize that their child is urinating more while at school or during the night. 
 


4.  Screening for T1D and having a healthcare team support your family if you screen positive can prevent your child from becoming very sick with DKA and needing treatment in a pediatric intensive care unit.   
Although rates vary across the United States, in Colorado nearly 60% of children diagnosed with type 1 diabetes are sick enough to have diabetic ketoacidosis (DKA) and require treatment in the intensive care unit. DKA happens when the body doesn’t make enough insulin to allow sugar into cells for energy. The body starts breaking down fat for energy, and when fat is broken down, ketones are made. Ketones can build up to dangerous levels that can lead to a child being very sick.  Children detected by screening for T1D associated antibodies rarely progress to DKA. Prior studies at the Barbara Davis Center, including the TEDDY and DAISY studies have shown that 90% of children who know they have the T1D associated antibodies and are connected with a healthcare team avoid DKA at onset of diabetes. 
 

5. T1D Prevention trials may be available if your child screens positive. 

6. Therapies approved for early T1D treatment

On November 17, 2022, the FDA approved TZIELD (teplizumab). TZIELD has the potential to delay the onset of clinical type 1 diabetes (T1D). It is approved for adults and pediatric patients aged 8 years and older with Stage 2 T1D. Stage 2 T1D is when a person has 2 or more T1D-associated autoantibodies (GAD, IAA, IA-2, ICA512, and/or Znt8) and dysglycemia. Dysglycemia in stage 2 T1D is defined by the American Diabetes Association as a fasting blood glucose of 100-125 mg/dl, a 2-hour glucose during an oral glucose tolerance test of 140-199 mg/dl or an HbA1c between 5.7-6.4%. 

Research done in TrialNet showed that people who received TZIELD had an average of 2 more years before the onset of clinical T1D (Stage 3 T1D) compared to those who did not receive TZIELD. Additionally, more people who were given TZIELD had not been diagnosed with Stage 3 T1D by the end of the study compared with people who did not receive TZIELD. TZIELD is an intravenous (IV) infusion. This means the medication is given through a needle into a vein in the arm. Infusions are once a day, every day, for 14 days. Treatment is completed after 14 days. TZIELD attaches to specific cells in the immune system and may work by turning off the immune cells that attack the insulin-making cells in the pancreas. Evaluation for Tzield treatment can take place at the Barbara Davis Center Early T1D Clinic in Aurora, CO, or in several other locations throughout the United States that may be closer to you.

WHY screen
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 HOW do I screen  for early Type 1 Diabetes?

There is only one set of markers in the blood — islet autoantibodies — that are associated with the development of type 1 diabetes (T1D). Clinical, consumer and research labs measure T1D associated antibodies (and/or celiac disease) with a simple blood test.


To determine the best way to screen you or your child for T1D risk, or if you have already been screened and need help, please email us at Questions@AsktheExperts.org or call 303-724-1212

VIEW / DOWNLOAD (PDF) Chart of U.S.-based Screening Programs/Laboratories

HOW do I screen

 WHAT are the stages  of Type 1 Diabetes?

Type 1 Diabetes (T1D) progresses in 3 Stages, as shown below.

STAGE 1 — Multiple T1D-associated antibodies are detected in the blood, that indicate beta cell loss has begun. Blood sugars remain NORMAL and no symptoms are present. 

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STAGE 2 — Blood sugar levels have become ABNORMAL due to increased loss of insulin-making beta cells; still, there are often no symptoms. 

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STAGE 3 — The body is no longer able to make enough insulin, and blood glucose is high. Insulin treatment begins. Noticeable symptoms often appear — including frequent urination, excessive thirst, weight loss. 

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TZIELD Treatment: Potential eligible patients are those who are 8 years or older with stage 2 T1D

Stages of T1D

Result: Screened  NEGATIVE  

A negative antibody result does not mean that a person will never develop type 1 diabetes. The autoimmune process of type 1 diabetes can occur at any time during a person's life. Screening for antibodies at regular intervals that align with standard well child visits that occur at 1-3y/o, 4-6y/o, 9-11y/o is recommended.** Talk with your doctor to determine how often you should be screened based on your personal and family history.

 

Remember to always contact your doctor if you have symptoms concerning for T1D.

  • PERSONAL HISTORY
    of autoimmunity;
                and/or
     

  • FAMILY HISTORY of autoimmune disease

CONSIDER REPEAT SCREENING
ANNUALLY

  • If annual screening isn't available, screening between the ages of 1-3 years, 4-6 years and 9-11 years will increase the chances of detecting type 1 diabetes during childhood and adolescence.**

  • Repeat at ANY age if symptoms of type 1 diabetes appear (also check glucose level and HbA1c)

  • NO PERSONAL HISTORY 
    of autoimmunity;

                  and

  • NO FAMILY HISTORY
    of autoimmune disease

For AGE <15yrs:
 

  • Repeat at least once to improve the sensitivity of detecting T1D. The optimal age to rescreen is generally 1-3 years, 4-6 years of life and, if negative, 9-11 years of life.**

**References

Screened NEGATIVE

Result: Screened  POSITIVE  

If you've received an initial positive screening result, please schedule a visit with your health care provider and ask them to check a blood glucose level and a hemoglobin A1c.

 

A positive screening test NEEDS TO BE CONFIRMED** (with a second blood test) by measuring all four T1D-associated antibodies (GAD-65 antibody, IA-2 antibody, insulin antibody, ZnT8 antibody). These antibodies should be measured from a blood sample collected from a vein with a needle in a CLIA-approved reference laboratory.

** If you or your healthcare provider need help determining how to get this confirmation blood test, please reach out using the FORM below.

If your child/you screened POSITIVE, and confirmed POSITIVE,
your child/you should be monitored for progression to type 1 diabetes.

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NEGATIVE Antibody (Ab-) Risk:

A negative antibody result does not mean that a person will never develop type 1 diabetes. The autoimmune process of type 1 diabetes can occur at any time during a person's life. Talk with your doctor to determine how often you should be screened based on your personal and family history. Remember to always contact your doctor if you have symptoms concerning for T1D.

 

SINGLE Ab+ Risk:

A person confirmed positive for 1 antibody has 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 that you know the symptoms of T1D to watch out for.

 

MULTIPLE Ab+ Risk:

A person confirmed positive for 2 or more antibodies should talk with their healthcare provider or reach out to Ask the Experts. Two or more autoantibodies is the first sign that the earliest stages of T1D have begun. This means the immune system has started attacking beta cells that make insulin, and eventually this leads to a diagnosis of T1D and the need for lifelong insulin therapy in the majority of people. Having 2 or more antibodies means there is a 44% chance of developing type 1 diabetes in the next 5 years and a 70% chance of developing type 1 diabetes in the next 10 years. If your healthcare provider has any questions or would like assistance with follow-up, please refer them to Ask the Experts.

Therapies approved for early T1D treatments include TZIELD. This medication has the potential to delay the onset of clinical type 1 diabetes (T1D). It is approved for adults and pediatric patients aged 8 years and older with Stage 2 T1D.

Knowing if you or your child has early-stage T1D can help you be better prepared to recognize symptoms when they do appear.

 

Please provide your name, phone number and email address — and an Ask the Experts team member will contact you to make sure that you are connected with a Local Expert to help guide you through your next steps and provide you and your family with helpful resources. If a Local Expert is not available, we will provide remote support until a Local Expert is identified.

Please provide NAME, EMAIL, and PHONE and Ask the Experts will contact you.

Ask the Experts will contact you soon to follow up.

Screened POSITIVE

Type 1 Diabetes  SYMPTOMS 

Knowing if you or your child has early-stage T1D can help you be better prepared to recognize symptoms when they do appear.

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MOST COMMON SYMPTOMS include:

     • Excessive thirst

     • Frequent urination or getting up at night to urinate

     • Wetting the bed in a child who was previously dry

     • Unexplained weight loss or poor weight gain

     • Change in appetite

ADDITIONAL SYMPTOMS people experience include:

low energy, blurred vision, yeast infections, mood changes, behavior changes

SYMPTOMS THAT REQUIRE URGENT ATTENTION include:

heavy breathing, vomiting and confusion

Symptoms

 NEXT STEPS:  

 

If you have questions about:

  1. Interpreting screening results; or

  2. Determining a follow-up plan after receiving results; or

  3. Screening for type 1 diabetes or celiac

 

Please e-mail us at Questions@AsktheExperts.org or call us at 303-724-1212 and a member of Ask the Experts will reach out to you.

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