Lydie’s Type 2 Misdiagnosis Story 

“I was on vacation with my daughter, my mom, and my mother-in-law,” recalled Lydie, a Canadian citizen traveling in the United States at the time. “We just spent four days on a cruise. I started to feel really sick and had a fever of 107.”

Lydie was supposed to fly home with her family that day, but they wouldn’t allow her board the plane. Instead, they sent her to the local emergency room in Florida. 

The COVID-19 Connection

“Looking back, I can see all of my other obvious type 1 symptoms, but I just didn’t realize at the time,” said Lydie. “I was drinking so much water and needing to pee constantly as a result. My vision had changed so much, too.”

The COVID-19 pandemic also played a role in her own misperception of her symptoms. “I had gotten COVID almost two years prior to my misdiagnosis,” explained Lydie. “During those next two years, I thought my increasing fatigue and mood swings were related to ‘long COVID,’ and nobody on my healthcare team questioned this.”

Was Lydie’s father misdiagnosed, too?

“My father had type 2 diabetes, so I had been getting annual A1c tests,” said Lydie. When her bloodwork came back high, they immediately assumed it was type 2 diabetes because of her father’s diabetes diagnosis.

Could he have been misdiagnosed, too? “He was diagnosed with type 2 diabetes at the same exact age, 45 years old,” said Lydie. Her father passed away in 2023.

Lydie’s healthcare team at the ER in Florida never told her what her blood glucose level was, but they did tell her she was in diabetic ketoacidosis (DKA). Fortunately, they did get her on insulin right away, which is not how these misdiagnosis stories often go. 

During her diagnosis, she was also diagnosed with double-lung pneumonia. The combination with DKA led to a four-day stay in the intensive care unit. She was eventually transported via airplane to Quebec City, where she spent another day in the ER.

The Correct Diagnosis

Back home in Canada, Lydie was referred to an endocrinologist who quickly picked up on the misdiagnosis. “She reviewed my past bloodwork and my COVID infection,” recalled Lydie, grateful for the endocrinologist’s willingness to look beyond the initial diagnosis. “Then she tested for antibodies. It was clearly type 1, not type 2.”

It took a full four weeks before her vision returned to normal. Diabetic retinopathy is a dangerous complication of T1D. If left untreated, this serious complication can lead to glaucoma, cataracts, and even blindness. 

“I truly hadn’t realized how much my vision had changed,” she laughed. “I just thought I needed to update my prescription.”

Unfortunately, Lydie’s breathing issues — a direct result of the combination of pneumonia and COVID-19 — continued for much longer. “I was having so much trouble breathing,” Lydie said. “Just putting my socks and shoes on, I’d be out of breath.”

Despite the tumultuous pile of conditions she endured all at once, Lydie said both hospitals took good care of her. She credited the urgent care she received from the doctors in Florida with saving her life. Looking back, she also realized she was lucky to experience such a speedy correction in her diagnosis.

“I had an endocrinologist who was willing to push the envelope and do further testing,” said Lydie. “I’m so grateful I didn’t spend years misdiagnosed with frustrating high blood sugars, and I’m so grateful I didn’t have to fight for the correct diagnosis.”

Get family members tested for T1D autoantibodies

Today, Lydie’s next step is to get her daughter tested for the autoantibodies of T1D. Lydie’s father may have been misdiagnosed, but it is impossible to confirm after his death.

While 90 percent of people diagnosed with T1D have no family history of the disease, the simple pattern of Lydie’s father, then Lydie, is a good reason to have her tested for the autoantibodies that indicate the earliest stages of the disease.

Autoantibodies develop when the immune system begins attacking and destroying the cells in your pancreas that produce insulin. Antibody testing can identify the three stages of T1D, two of which can develop years before you need daily insulin therapy:

There are three stages of type 1 diabetes based on the presence of autoantibodies:

• Stage 1: Two or more autoantibodies but normal blood sugar.
• Stage 2: Two or more autoantibodies, abnormal blood sugar, but no symptoms yet.
• Stage 3: Symptoms show up, blood sugar is high, and insulin is a must! 

While it may feel pointless to identify T1D early, there are multiple interventions ongoing in clinical trials today. The earlier you identify T1D, the more opportunities you have to participate in research that aims to delay or stop the progression of the disease.

Visit Trialnet.org to learn more about testing.