Misdiagnosed with Prediabetes & Type 2 Diabetes at 24 Years Old

She wasn’t overweight, and she exercised intensely every day. Emily didn’t have any of the usual challenges of a person with type 2 diabetes (T2D). Nonetheless, her primary care doctor concluded that Emily simply had a genetic predisposition to T2D. 

“She acknowledged that it didn’t really make sense, but he just blamed it on my genetics,” said Emily.

He instructed her to improve her diet and that was that. No other guidance or monitoring was recommended.

Trying to Fix Everything with Diet

“I went pretty extreme with my diet,” Emily said. “I did both low glycemic index and plant-based, following the guidance I read in Dr. Neal Barnard’s book on reversing diabetes with diet.”

It seemed to help. Emily’s next A1c was back under 5. “It took pretty extreme diet changes, but I was no longer in the prediabetes range,” said Emily, who continued her diet without any real tools or guidance on monitoring her blood sugar levels or A1c. “I was exercising a lot on top of the changes to my diet to maintain that A1c,” Emily said, looking back and realizing the severity of what she endured.

By 2016, she still wasn’t feeling well. “I’d lost a ton of weight,” said Emily. “I thought, ‘Yay! I’m back to my wedding weight!’ but I felt terrible on top of it.”

Experiencing the common symptoms of type 1 diabetes (T1D): exhaustion, blurred vision, extreme thirst, frequent urination, and recurring yeast infections, Emily thought she might have been anemic. But her bloodwork said otherwise. Despite her rigorous dieting and exercising— her blood sugar level was in the 300s.

The Second Misdiagnosis: A1C at 13%

“With a blood sugar in the 300s and an A1c of 13 percent, my primary doctor diagnosed me with type 2, started me on metformin, gave me a glucometer, and sent me home,” explained Emily. She checked her blood sugar repeatedly over the next few days, but the glucometer continued to have high readings even with minimal food. Eventually, Emily called her primary care doctor to let him know the medication was not working.  

He said, “You know, I’ve been thinking about you. I think you’re right — you should go see an endocrinologist. It’s rare, but it’s possible you have type 1 diabetes, not type 2.”  The appointment was scheduled for later that week. As the week continued, the glucometer frequently said “ERROR” because it couldn’t read levels over 399 mg/dL.  

Next, Emily called her friend with type 1 diabetes, who was also a nurse. “He said, ‘If you were my family member, I’d tell you to go to the ER.’”

The ER clinicians ran her bloodwork and essentially scolded her. “They were like, ‘So, you’re not managing your type 1 diabetes?’ And I just burst into tears and was like, ‘No, I’ve never even been diagnosed with type 1!’”

What they did next is a bit horrifying.

“They gave me a giant bolus of rapid-acting insulin,” Emily said. “Nobody told me what could happen. Within a couple of hours, my blood sugar plummeted and my husband had to go get me some juice. They had no idea what they were doing.”

Fortunately, she survived the ER’s ignorance and carelessness. They sent her home and told her to call her doctor. Emily contacted the endocrinologist's office to see if she could be seen sooner to figure out what was happening.

Surprisingly, Emily’s experience isn’t rare at all. More than 50% of new T1D cases are in people over 18 years old — but the outdated beliefs have become mainstream.

The Right Diagnosis

“My endocrinologist checked my C-peptide levels and checked for autoantibodies,” explained Emily. “Everything got smoother from there.” Leaving aside the fact that Emily exhibited the earliest stages of type 1 diabetes at 24 years old, she wasn’t officially diagnosed until age 30.

Today, Emily is a hardworking mother of a toddler. In her free time, she runs marathons and manages type 1 diabetes with support from the Omnipod 5 and Dexcom G6.