Misdiagnosed as Type 2 Diabetes: When No One Listens in Type 1 Diabetes Care

Everything Stops Making Sense

Zortman could not breathe. He was exhausted to the point he could barely function. His body felt heavy, and each breath required effort that never seemed to be enough. “I felt like I was going to suffocate,” he said.

At first, he thought it might be a respiratory infection. The symptoms felt urgent, but they did not point clearly to diabetes.

By the time he arrived at the emergency room, everything had escalated. The emergency room doctor ran tests. One after another, results came back negative. No heart issue. No lung collapse. No clear explanation.

The doctor told him they had no clear explanation. “You’re severely acidotic, and we don’t know why,” the doctor said. 

He processed it, then asked the question that changed everything: “Am I in DKA?” 

He could see the realization in the doctor’s eyes. “How am I telling you what’s wrong with me?” 

It was a moment that would stay with him. Not just because of how serious it was, but because of what it revealed. Even in a life-threatening situation, the answer had to come from him.

Riley’s Diagnosis and a New Path Forward

Years earlier, Zortman’s understanding of diabetes began at home. In 2013, his daughter Riley was diagnosed with type 1 diabetes at age three.

The diagnosis came suddenly, with no warning. One moment, life felt normal. The next, everything changed. 

His family entered the hospital in a state of fear and confusion. They were overwhelmed, trying to absorb information while processing the reality of a lifelong condition. It was exhausting.

In the days and weeks that followed, as they began to understand what they were facing, something shifted. He decided he would become a diabetes educator. 

It was not a career decision. It was a calling. He wanted to be the person who could walk into a room and bring understanding when everything felt uncertain.

He went back to school, became a nurse and built a career in diabetes education. He went on to become a certified diabetes care and education specialist (CDCES).

Diabetes was no longer just part of his family’s life. It became his life’s work.

A Family Conversation about Screening

After Riley’s diagnosis, he began discussing family screening for T1D with his wife. She was hesitant to move forward. The idea of knowing came with fear.

Over time, those conversations continued. As they learned more, their perspective shifted. Eventually, they decided together to move forward with screening for the entire family.

The initial results were not clear-cut.

He tested negative for autoantibodies. At that point, it was understood he was negative and not a candidate for repeat screening.

At the same time, their son Andrew’s results told a different story. 

He initially tested positive for multiple autoantibodies. It was an early signal, but not yet a diagnosis.

That result changed the conversation. Instead of uncertainty, there was now something to monitor. Over time, with continued screening, Andrew’s results progressed. He was eventually found to be positive for all five autoantibodies.

That earlier negative result would later take on new meaning when he developed T1D himself, reinforcing that a single negative screen does not rule out future risk, especially in adults.

Andrew’s Path Looks Different

Because Andrew’s risk was identified early, everything about his diagnosis unfolded differently. He was never in diabetic ketoacidosis or hospitalized.

His diagnosis did not come through crisis. Instead, it happened with awareness.

His care and education were handled in an outpatient setting. His family had time to prepare, ask questions and adjust. “Knowing gives us some of the control that we lost with Riley’s diagnosis,” Zortman said. 

Years later, Andrew remains in the honeymoon phase.

The contrast within the same family is clear. Riley’s diagnosis came suddenly, with no warning and no time to prepare. Andrew’s diagnosis came gradually, with monitoring, information and support already in place.

“They are VASTLY different.” 

‍

RILEY TODAY

Early Signs, Missed Opportunities

In January 2021, Zortman went in for a routine physical. His A1C came back elevated, and he was quickly started on medications typically used for type 2 diabetes.

But something did not sit right.

He had already lived through T1D with his daughter and was working in diabetes education. There was also a strong family history of autoimmune conditions, extending beyond his immediate family.

He began asking questions about screening, whether this could be type 1 and if additional testing could be done.

Those concerns were dismissed. He was told that further testing was not necessary and that the diagnosis had already been made as T2D.

That conclusion was not based on the full picture. It was based on assumptions about age and body size.

He continued to push.

As he learned more, he understood something important. Autoantibodies can appear more slowly in adults, and a single negative test does not always mean no risk. That knowledge is what pushed him to keep asking.

But the response did not change. He was not seen as someone at risk. He was an adult. He did not fit the typical profile.

Because of that, the door to further evaluation remained closed.

Not Being Heard in the Exam Room

By this point, Zortman was not just a patient. He was a nurse working in diabetes education, preparing for his CDCES credential. 

He understood the disease, how insulin works and what to look for. Still, he was not heard. 

“It’s the worst feeling ever,” he said. “To bring up a concern just to be immediately shot down.”

He felt it at every visit. “I felt judged every single time I went in,” he said. 

There was an unspoken message. That he had caused this, that he fit a certain profile and that the answer had already been decided. 

“I don’t ‘look like’ someone who would have T1D,” he said. 

Age shaped the assumption. Body size reinforced it.

Type 1 diabetes was still being treated as a condition that primarily affects children. As a result, his concerns were dismissed. 

Even when tests suggested something different, it was not enough. His doctor told him, “Yes, the labs are positive, but not positive enough.” There was no follow-up, no deeper evaluation and no reconsideration.

The diagnosis stayed the same, and the frustration grew. 

This was not a lack of access to care. It was a lack of listening.

Crisis and Diagnosis

When his symptoms worsened, the situation became critical. By the time he arrived at the emergency room, he was in DKA. He was treated with intravenous fluids and insulin, and the immediate danger was addressed. His blood chemistry stabilized.

But the experience left a lasting impression.

In a life-threatening moment, there was a lack of recognition around what was happening. The urgency was clear. The diagnosis was not.

Drawing on his experience as a father of children living with T1D and his own clinical knowledge, he had to identify what others had not yet named. 

That moment carried more than clinical significance. It reflected a deeper gap.

For patients, especially those without medical training, that kind of uncertainty can mean fear, confusion and delayed care.

It raised a difficult question: If someone with his background had to piece it together himself, what happens to those who do not know what to ask?

What followed did not reflect how serious the situation had been. He was discharged with little education and no clear plan that reflected a new diagnosis.

There was no structured transition into insulin management. No meaningful follow-up. No clear guidance on what to do next. The crisis had been treated. But the care that should have followed was missing.

Treatment that Did Not Work

Physicians started Zortman on insulin using a sliding scale. He followed the plan exactly, but it did not work. His blood sugar remained dangerously high.

He gave it time. Days passed, then weeks, and nothing changed.

He raised concerns, explained what he was seeing and asked for changes. Still, he was not heard. 

At that point, the frustration became impossible to ignore.

“I realized if I don’t advocate for myself, nobody else will,” he said.

Drawing on his background in diabetes education and clinical reasoning, he adjusted insulin doses based on body weight and physiology. 

After adjusting his insulin himself, everything began to shift. His A1C dropped into the sixes and his blood sugar stabilized.

The improvement was clear. But the response from his endocrinologist was not what he expected.

She pointed to the improved numbers and tried to take credit for the outcome. He told her, “It’s not the dose you gave me.”

The reaction was immediate. “She was furious.” 

The tension escalated, and the issue was no longer just about insulin dosing. It became about control, authority and whether his voice would be taken seriously. 

He had followed the prescribed plan, and it failed. He had explained what was happening, and it was dismissed.

Only when he took control himself did things improve. And even then, his voice was still not accepted.

What Screening Can Change

Zortman’s story highlights more than one missed diagnosis. It points to a larger gap in how the condition is recognized and understood.

There is still a widespread belief that it primarily affects children, even though many diagnoses occur in adulthood, a misconception that continues to impact care. 

“Stop thinking of T1D as only a juvenile condition,” he said.

Screening has the potential to change that.

It can identify risk before symptoms begin, reduce the likelihood of a life-threatening event and give families time to prepare. It can also shift diagnosis from an emergency to something that is monitored and managed over time.

Programs such as TrialNet, ASK and Screen for Type 1 are designed to do exactly that. Resources like T1D Scout, the first at-home saliva based test kit, also play an important role by helping individuals and families recognize early signs, understand risk and take the next step toward screening.

But there are limitations.

A negative result does not always mean no risk. Especially in adults, changes can develop over time, and progression is not always immediate or predictable. 

That is something he came to understand through experience. 

As he learned more, that knowledge pushed him to keep asking questions.

Turning Experience Into Advocacy

Today, Zortman works in diabetes education and management, bringing both clinical training and lived experience into his role.

As a nurse, CDCES and advocate, he supports patients and families navigating life with diabetes. He also serves as a screening ambassador for Sanofi and hosts Talk Diabetes with Steve.

That work is shaped by experience, including being dismissed, questioning his own diagnosis and fighting to be heard. Those moments did not stay in the past. They continue to influence how he listens, how he teaches and how he advocates for others facing similar challenges. 

What Needs to Change 

His message is direct. T1D should not be ruled out based on age or body size. Clinicians need to listen and reconsider assumptions when something does not add up. “If the meds aren’t working, there is usually a reason,” he said.

For adults who feel overlooked, his advice is just as clear. “Don’t ever stop fighting for yourself.”

For clinicians, the message is simple. “We listen, and we don’t judge!”

A Different Outcome is Possible

At the center of Zortman’s story is a contrast. Riley’s diagnosis came without warning and felt like a ton of bricks. Andrew’s diagnosis came with monitoring, preparation and no DKA.

His own diagnosis reveals a different kind of failure. As a nurse, a diabetes educator and a father of children living with type 1 diabetes, he still faced misdiagnosis, dismissal and the need to fight to be heard. 

If it can happen to him, it can happen to others.

Screening, updated care and listening are not small changes. They can change the entire course of a diagnosis.