Type 1 Diabetes (T1D) Frequently Asked Questions

What are you trying to accomplish with this survey?

The purpose of this Type 1 diabetes (T1D) research is to compare real-world data with national statistics provided by the Centers for Disease Control and Prevention (CDC). 

Are you healthcare professionals?

We are not healthcare professionals.  We are people very concerned with the well-being and fair treatment of people with T1D in the schools and workplace.

You are your own best advocate for your health and are personally responsible to find the best doctors as your advisors.

Do you have any additional insights managing T1D that are not usually mentioned by doctors or clinical trials?

Below, we have intentionally tried to provide short answers as a starting point for your own research.

Sugar Substitutes

Avoid sugar substitutes ending in “-tol,” particularly erythritol and xylitol. Both have been linked to increased blood clot formation and muscle stiffness.

Metformin as an Off-Label Option

Metformin, commonly prescribed for Type 2 Diabetes (T2D), may offer additional health benefits for individuals with T1D, especially after age 35. Although it doesn’t reduce insulin requirements for T1Ds, it may support overall health management. Consult your healthcare provider before considering this off-label approach.

Diet Sodas and Oral Health

T1Ds often consume a lot of diet sodas, but their highly acidic pH (2.5–3.5) can damage tooth enamel, which begins to erode below a pH of 5.5. High consumption may increase the risk of dental issues like root canals over time. 

Exercise and Bone Health

Exercise is one of the top three ways to manage T1D, though it adds complexity to blood sugar management. Regular exercise promotes proper bone marrow stem cell development and overall health. However, active T1Ds must monitor their blood sugar levels more frequently, as intense exercise can cause fluctuations. Always keep fast-acting sugars, like energy gel packs, on hand during activities.

Note: Continuous Glucose Monitors (CGMs) may show inaccurate blood sugar levels during intense aerobic exercise, sometimes overestimating blood sugar and risking undetected lows.

A Cure for T1D

A cure for T1D is still years away. Unfortunately, the current public and private sector structures in the U.S. prioritize treatments over cures due to profitability. Overseas research may hold promise, but it’s critical to focus on effective management now rather than waiting for a cure. 

We’re not here to criticize pharmaceutical companies—they need to be profitable to sustain their business and reward investors. However, our legislators should incentivize businesses to prioritize cures over long-term treatments, especially since much of the research originates from publicly funded universities.

Health Recommendations After Age 50

At age 50, or earlier if indicated by family history or lifestyle, schedule the following screenings:

• Coronary calcium score

• Shingles vaccination

• Colonoscopy

A coronary calcium score, a non-invasive and painless MRI scan costing approximately $100–$125, helps assess heart health. Avoid taking statins preemptively without this test, as their necessity varies by individual.

Thyroid Disease and T1D

Thyroid disease complicates T1D management. Take thyroid medications like levothyroxine consistently at least an hour before your first meal. Keeping the medication and a water bottle bedside can help establish a routine.

Typical blood tests for hypothyroidism include TSH and Free T4 levels. Levothyroxine dosage is often weight-based; taking slightly more may be better than too little, but excess can cause shakiness and an elevated heart rate, while insufficient amounts can lead to fatigue, brittle hair, and cognitive issues. Work closely with your doctor to fine-tune your dose.

Collagen and Joint Health

After age 35, consider collagen supplements to slow the progression of osteoarthritis. Staying active is crucial for T1D management, and strong bones and healthy cartilage are key.

General Tips

• Avoid smoking—nicotine, arsenic, and tar are harmful for everyone.

• Recognize that, like any profession, there are excellent and poor doctors. Be proactive in seeking the care you deserve.

Do you have any cost-effective suggestions to help find a cure for T1D?

Blood tests are required to join the U.S. military. As part of the Military Entrance Processing Station (MEPS) medical examination, applicants undergo a Comprehensive Blood Test to check for:

• Infectious diseases (e.g., HIV, Hepatitis B & C, Syphilis)

• Blood disorders (e.g., anemia, sickle cell disease)

• Drugs and alcohol use

• General health markers (e.g., blood sugar levels, Lipid Panel, etc.) 

The blood test helps ensure that recruits meet the military's medical standards and do not have disqualifying conditions.

We recommend using a portion of the anonymously collected blood samples from individuals with “good” test results and storing them in a biobank to represent the genetic diversity of a healthy population. These samples should undergo comprehensive genetic testing, such as whole genome or whole exome sequencing, to analyze their complete DNA. By comparing these results with those of individuals with T1D, researchers can identify genetic differences and explore potential modifications to address the condition.

A cure will emerge through collaboration between universities and National Laboratories, ensuring transparency with no secret or patented information. Government health agencies will oversee its distribution directly to the patient. In contrast, any potential T1D cure developed by private companies may face significant barriers to reaching the public, either due to excessive government regulations or being acquired and shelved by large pharmaceutical companies to protect the profitability of ongoing treatments. This government involvement is a necessary exception to free enterprise to improve the quality of life for those with T1D.

What method(s) does the CDC use to determine the T1D prevalence rate in the USA?

According to ChatGPT and other sources, the Centers for Disease Control and Prevention (CDC) determines the prevalence rate of Type 1 diabetes (T1D) in the United States using data collected from large-scale population studies and registries. The main methods include the following:

1. National Health Surveys

• National Health Interview Survey (NHIS): The NHIS collects self-reported data from households about diagnosed diabetes, including T1D. This survey helps estimate the prevalence of diabetes by type, stratified by age, sex, and race/ethnicity.

• National Health and Nutrition Examination Survey (NHANES): NHANES combines interviews and physical examinations to provide more detailed health and nutritional data, including biomarker testing that can differentiate between T1D and T2D.

2. SEARCH for Diabetes in Youth Study

• This CDC-funded study is one of the most prominent efforts to determine T1D prevalence in the U.S., focusing on youth under 20 years of age. It collects data from clinical and non-clinical settings (e.g., healthcare systems, school records) and involves direct confirmation of T1D diagnoses through medical records.

• The SEARCH study has shown that the prevalence and incidence of T1D in youth are increasing, providing vital information for understanding trends.

3. United States Diabetes Surveillance System

• The CDC maintains this system to track diabetes prevalence, incidence, and related risk factors over time. It uses multiple data sources, including insurance claims data, hospital discharge records, and pharmacy data, to differentiate between T1D and T2D cases.

4. Medical Claims and Electronic Health Records

• The CDC collaborates with other agencies and research groups to analyze de-identified electronic health record (EHR) data and medical claims to identify individuals diagnosed with T1D. They use diagnosis codes (such as ICD-10 codes) to classify diabetes types and calculate prevalence and incidence rates.

5. Youth and Adult Diabetes Registries

• Registries like the T1D Exchange Registry collect data on individuals with T1D across various demographics. While not directly managed by the CDC, these registries often contribute valuable data for CDC analysis.

6. Outputs

The CDC uses the data collected to provide reports, such as:

• The National Diabetes Statistics Report, which gives detailed figures on diabetes prevalence and incidence in the U.S.

Our Concerns About the CDC's T1D Prevalence Data Collection Methods

Do we see flaws in how the CDC collects T1D prevalence rate data? Yes, there are significant concerns with the methods used.

The National Health Interview Survey (NHIS) collects self-reported data from households about diagnosed diabetes, including T1D. However, we have yet to encounter any individual or medical professional familiar with the NHIS or who has participated in such a survey. This raises questions about the reach and reliability of the data. Until robust procedures and strategies are in place to enforce anti-discrimination policies for individuals with T1D, we recommend caution in sharing T1D information with government agencies, particularly for those in employment-sensitive situations.

The SEARCH for Diabetes in Youth Study, which is funded by the CDC, collects data from clinical and non-clinical settings such as healthcare systems and school records. This involves direct confirmation of T1D diagnoses through medical records. However, it is unclear how private medical records are accessed without parental consent, and whether this data collection process is thoroughly verified for accuracy and completeness. We are unaware of any parents who have granted government access to their children’s medical records, which raises concerns about the transparency and ethical handling of such sensitive information. Additionally, there is a risk that insurance companies may use such data to increase premiums for T1D customers, whether for auto or health insurance.

In contrast, our own survey targets high schools with a minimum enrollment of 125 12th-grade students. The survey is completely anonymous, omitting names, genders, or ethnicities. According to the CDC’s projections, a school of this size is unlikely to have even a single T1D student—a conclusion that seems highly unrealistic based on our own observations and experiences.

In our opinion, the CDC’s data collection methods lack clarity and comprehensiveness. This is why we’ve launched a grassroots initiative to determine T1D prevalence rates independently. While it’s possible the CDC’s data is accurate, our life experiences with thousands of people strongly suggest that the CDC’s reported T1D prevalence rates are severely underestimated.

It’s worth noting that the CDC’s T1D prevalence rates are generally in line with those reported by other nations. However, we are uncertain how other countries collect their data and whether they have the resources for comprehensive assessments. Perhaps these other nations are solely using CDC's data for their T1D prevalence rates.

As an example of past discrepancies, for decades, the CDC claimed that only 1 in 12 individuals with T1D would develop thyroid disease. A recent UK study revealed the actual rate to be 1 in 3—a 400% difference. To the CDC’s credit, they amended their data. However, we believe there is an even larger discrepancy—potentially 600–650%—in the CDC’s T1D prevalence rates.

Our 8-question survey aims to either solidify or challenge the CDC’s data, providing greater insight into the true prevalence of T1D in the U.S.

According to the Diabetes Atlas, approximately 62% of all new T1D cases globally in 2022 were diagnosed in individuals aged 20 years or older. ​

However, precise global statistics detailing the percentage increase in T1D incidence specifically after the age of 20 are limited.