Misdiagnosed with Type 2 Diabetes for Five Years: Nazak's Story

The Early Signs

“I think I actually started losing beta cells back in 2008,” Nazak explained. Her twin sister had been diagnosed with gestational diabetes during pregnancy that same year. One evening, while visiting her sister, curiosity led Nazak to check her blood sugar.

“It was 252 mg/dL,” she recalled. Shocked, her sister asked if she had any symptoms.

“Yes,” Nazak admitted. “Every morning, I see very blurry vision.” 

However, being active and constantly dieting, diabetes didn’t seem like a real possibility at the time. Nazak visited her doctor and took a glucose tolerance test. 

“I actually fell asleep in the chair during the test,” she laughed. But the results were surprising — they seemed relatively normal, indicating she wasn’t diabetic. Looking back, Nazak realized she had far more symptoms, but they were subtle enough that she could ignore them.

Symptoms That Couldn't Be Ignored

Despite the test results, the symptoms persisted and intensified over the next few years.

“119 pounds was my normal weight, but I went down to 103 pounds,” Nazak shared. “And I was peeing all the time, thirsty all the time, and so moody.” 

One symptom, in particular, became impossible to ignore: a yeast infection that wouldn’t go away despite repeated rounds of medications.

“I was seeing a gynecologist at the time. On my eighth visit, I told him, ‘Doctor, I still have this infection.’ He finally decided to check my blood sugar.”

The next day, the physician called immediately after seeing her results. 

“He asked if I had eaten chocolate before the test,” Nazak remembered. A follow-up fasting glucose test revealed dangerously high blood glucose levels.

“He told me to go to the emergency room immediately and said I shouldn’t even be driving.”

Diabetic ketoacidosis (DKA), a side effect of undiagnosed high blood glucose levels can be deadly if left untreated. 

A Dangerous Delay

Nazak was reluctant to go to the hospital after just receiving a job promotion–so she didn’t go.

“My doctor called me the next day, checking in to see how the visit went. He was upset with me when I told him I didn’t go.”

Reluctantly, she went to the emergency room, expecting a long wait — not realizing that her blood glucose levels would trigger their giving her immediate treatment. 

“They brought me to the ER right away and started giving me insulin.” 

Tests revealed she was in DKA with a blood sugar level of 324 mg/dL. Doctors kept Nazak in the hospital for 24 hours, gave her insulin, and sent her home with metformin. 

“They told me to buy a glucose meter and said my goal blood sugar should be between 100 and 140 mg/dL. Then it was basically, ‘Have a great day, bye.’”

Navigating Type 2 Diabetes

A few days later, Nazak’s blood sugar spiked to 504 mg/dL.

“I told my husband, ‘I need to be at the hospital.’” She was hospitalized for a week, given more insulin, and referred to an endocrinologist who prescribed metformin and a high dose of long-acting insulin.

Her doctor still believed she had type 2 diabetes.

“I was taking 28 units a day, way too much,” she explained. “My blood sugar was crashing in the middle of the night.”

Despite her concerns, the physician provided little guidance. 

“She told me I needed to play with the dose to find the right one,” Nazak said. “They didn’t teach me anything—not even how to give myself an injection. They just assumed because I’m an adult, I’d figure it out.”

Feeling completely isolated, Nazak decided to seek out her own diabetes education and support. She signed up for a free 10-week diabetes education course and spent hours on the internet trying to research and learn.

The Turning Point

In 2019, frustrated with her care, Nazak fired her endocrinologist. A referral to a researcher at McGill University for her family’s genetic cholesterol condition changed everything.

“I told him, ‘I don’t feel like myself since my diagnosis. I feel so sick after eating.’”

The researcher referred her to a new endocrinologist. Nazak brought along her 2017 initial lab work, which had cost her $1,500 out-of-pocket. Everything she needed for a correct diagnosis was buried in this lab work: autoantibodies.

Type 1 Diabetes Early Screening

Autoantibodies develop when your immune system attacks your own body. There are a handful of specific autoantibodies that indicate T1D. A simple blood test can identify those autoantibodies. The results provide a definitive answer: type 1 or type 2.  

“They completely missed the autoantibody test results,” Nazak said incredulously. “It was right there in my lab work.”

Nazak’s new endocrinologist helped her get what she needed as quickly as possible. 

“He put a CGM (continuous glucose monitor) on me, gave me rapid-acting insulin, and a sliding scale education on insulin management.”

Nazak taught herself how to correct high blood sugars and became a big fan of Dr. Bernstein’s Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars, an ultra-low-carb approach.

How can you get tested for stage 1 & stage 2 type 1 diabetes?

Yes, it’s time to get screened if you’ve been diagnosed with type 2 diabetes and the diagnosis doesn’t feel right.

You and your children can get screened for the autoantibodies of T1D in 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)

Type 1 diabetes can develop at any age — which includes your parents, grandparents, or adult children.

Living with LADA

Nazak was finally diagnosed with latent autoimmune diabetes in adults (LADA), a form of T1D that often gets mistaken for type 2 in adults.

LADA is a subtype of T1D. It simply means that the person’s insulin production declines significantly slower than that of someone with traditional T1D. LADA is more common in adults over 30. 

Today, Nazak manages her condition with Tresiba and continues to educate herself on diabetes management. Reflecting on her journey, she emphasizes the importance of self-advocacy and seeking proper care.

“I’ve heard so many stories from adults who were misdiagnosed. If I hadn’t kept pushing, I don’t know where I’d be today.”