Misdiagnosed with Type 2 Diabetes: Megan's Journey to a Type 1 Diagnosis

“I went in for a glucose tolerance test and ‘failed’ the two-hour test,” said Megan. “They called me back for the three-hour test, and I failed that, too. The doctor told me it was gestational diabetes and that it would go away after I had my baby. Little did I know that was just the beginning."

Gestational diabetes is a common condition that can occur during pregnancy, but in Megan's case, it was an early sign that something more complex was happening with her health. Many women diagnosed with gestational diabetes find their blood sugar levels return to normal after giving birth, but for Megan, the struggle was far from over. 

In fact, it wasn’t gestational diabetes at all — it was the earliest stage of type 1 diabetes (T1D).

Early Signs are Easy to Miss

Looking back, Megan remembered signs from her childhood that now make more sense.

"I was in first or second grade, coming home from school and feeling what I now know were symptoms of high and low blood sugar,” she said. “I would always nap after school. But no one in my family had type 1 diabetes, so it was overlooked."

Fatigue and thirst were constant companions but were brushed off as Megan's normal childhood tiredness. After all, what kid doesn't come home from school exhausted? It's easy to overlook the early signs of type 1 diabetes when no one expects them. Since T1D wasn’t on their radar, it’s completely understandable that Megan’s family didn’t recognize these subtle blood sugar fluctuations related to stage 1 of type 1 diabetes. 

Understanding the Stages of Type 1 Diabetes

Megan’s story highlights the importance of proper testing for diabetes. In cases like hers, misdiagnosis often happens because adults are assumed to have type 2 diabetes due to their age. However, LADA (Latent autoimmune diabetes in adults)is an autoimmune condition like type 1 diabetes that develops more slowly.

Autoantibodies are markers that the immune system is attacking insulin-producing cells. Testing for these autoantibodies can identify stages of type 1 diabetes:

• Stage 1: Two or more autoantibodies, normal blood sugar, no symptoms.
• Stage 2: Two or more autoantibodies, abnormal blood sugar, no symptoms.
• Stage 3: High blood sugar and visible symptoms, requiring insulin therapy.

Unfortunately, many primary care doctors are unfamiliar with ordering these specific tests, contributing to misdiagnoses like Megan's. Exploring effective ways to prevent diabetes misdiagnosis could help others avoid Megan's experience. 

Getting Screened for Type 1 Diabetes

You can get screened for the autoantibodies that indicate type 1 diabetes through a variety of ways:

• 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)

It’s worth it! Remember, 90 percent of people diagnosed with type 1 diabetes have no family history of the disease. Get screened — and screen your family, too.

After Delivery: Diabetes Didn’t Go Away

After delivering her first son, Megan was advised to "go back to eating as normal" after months of strict diet, exercise, insulin injections, and finger stick checks. But returning to “normal” felt impossible.

“After a few months, my doctor called me back in for bloodwork to make sure the diabetes was 'gone.' It wasn’t. I was diagnosed with type 2 diabetes and put on metformin. I spent the next three years focusing on losing weight and managing my diet."

But here’s the thing — the symptoms wouldn’t go away. Nothing seemed to change, no matter how hard Megan tried to follow the plan. Megan recalls the overwhelming fatigue, the unquenchable thirst, and the confusion that came with trying to manage her health. 

Her frustration grew as she followed medical advice but saw little improvement. If her healthcare providers had a stronger understanding of the key differences between type 1 and type 2 diabetes, they would’ve had all the information they needed to make an accurate diagnosis.

A Life-Changing Second Opinion

During her second pregnancy, Megan was referred to an endocrinologist — a turning point in her journey.

“That endocrinologist completely changed my life. She diagnosed me with latent autoimmune diabetes in adults (LADA) — type 1.5 diabetes — and started me on a Medtronic pump and continuous glucose monitor (CGM),” Megan explained. “I had a lot of complications during that pregnancy, so I switched to Dexcom for more accurate readings."

Pregnancy alone is challenging. Actually, let's be honest, it's exhausting. But throw in managing a chronic condition like diabetes? That takes things to a whole new level. Megan had to attend multiple appointments weekly, monitor her blood sugar constantly, and deal with the emotional strain of keeping herself and her baby safe through careful management of diabetes during pregnancy.

To prevent further complications, Megan delivered her second baby early at 37 weeks. Balancing life with a newborn and toddler while managing diabetes was challenging. Yet, just as she began to find her footing, Megan discovered she was pregnant again.

“Pregnancy with diabetes is terrifying,” she shares. “You’re going to multiple doctor appointments each week, constantly managing blood sugars, and knowing that any moment could lead to complications.”

Her daughter was also delivered at 37 weeks and, in a heart-wrenching turn, admitted to the neonatal intensive care unit (NICU) due to low blood sugar. No parent ever expects to see their newborn in the NICU. The fear and stress Megan endured during those months were overwhelming, but she remained determined to manage her health for herself and her growing family.

Finally, the Right Diagnosis

A year after her daughter was born, Megan's persistence paid off.

“My C-peptide was 0.5 — I was finally diagnosed as a type 1 diabetic,” she said. “I started using the Tandem t:slim insulin pump and Dexcom, and these two devices have completely changed my life."

For the past 11 years, Megan has balanced life as a wife and a mother of three, managing type 1 diabetes, working, exercising, and maintaining a healthy diet. The impact of diabetes technology has been a huge part of her ability to manage her diabetes on top of motherhood. 

Advocating for Your Health

Megan's story is a powerful reminder that diabetes doesn’t look the same for everyone.

The road to a correct diagnosis can be long, confusing, and exhausting — and sometimes, the answers feel just out of reach.

“If something doesn’t feel right, speak up,” Megan advised. “You have to advocate for yourself. Keep pushing for answers.”

Her experience shows just how critical it is for healthcare providers to dig deeper and for patients to keep pushing for answers. For Megan, finding the correct diagnosis and accessing diabetes technology didn’t just change her life — it saved it. 

Today, Megan continues to thrive, balancing family life and type 1 diabetes and sharing her story to help others feel less alone.