Matthew’s Road to Answers: How Life Challenges Led to the Right Diagnosis

Matthew calls the Greater London area home. He lives as an actor, singer, and acting coach, identifying himself on the neurodivergent scale. Simply, neurodivergence means that you process information in atypical ways. 

Despite processing things differently, Matthew still recognized that something was off when he began losing weight without trying, around the same time the COVID-19 pandemic first hit.

Life Challenges Pushed Matthew to Seek Medical Attention

While COVID-19 was a factor, it was not the sole push for Matthew to seek medical attention.

Matthew’s sister, who works with students with mental and physical disabilities, first noticed that something was off with him. Matthew dropped from 12 to 9.5 stone rather quickly, which equates to dropping from 168 to 133 pounds in U.S. measurements.

No one in Matthew’s family had type 1 diabetes (T1D) at the time of his diagnosis, so it wasn’t on his mind. This isn’t shocking, as 90 percent of all new cases of T1D have no family history. Globally, in 2024, there were 9.4 million new cases of diabetes. This prevalence is expected to rise to as many as 16.4 million by 2040.

But Matthew wasn’t diagnosed with T1D right away—instead, he lived with a misdiagnosis for several years that challenged his health and wellbeing over and over again.

Matthew’s sister recalled something similar happening to one of her students, but still, they didn’t make the connection until much later. No one thinks it could happen to them until it does—that’s just human nature! 

Following an unfortunate incident when Matthew’s building caught fire and burned down due to other residents attempting to grow marijuana, he moved in with his sister. That’s when he began taking his symptoms more seriously. He finally sought medical help.

A Questionable Medical Diagnosis Without Relief

Matthew went to see his primary care doctor for a basic blood glucose test. A week later, he was told he had T2D. 

“Umm, are you sure?” Matthew wondered.

He wasn’t entirely convinced. Although he was told to participate in dieting groups to manage his diabetes, he couldn’t help but notice that he didn’t look like the rest of the group. 

Two years went by, and he kept losing weight. He was given a sulfonylurea, which is a class of oral medications used to lower blood sugar in people with T2D. After taking the drug, he experienced his first low blood sugar. Then his doctor switched him to Metformin.

Matthew was on Metformin for two years.

Metformin is one of the most well-known T2D medications—it’s been considered the “first line of defense” for decades. The drug reduces the amount of glucose your liver produces, improving overall insulin sensitivity. The result is that you need less insulin, and your cells can use insulin more effectively. 

Metformin also reduces how much sugar you absorb from the food you eat! Sort of like a “carb blocker," meaning some carbohydrates in your meal don’t affect your blood sugar. This further decreases the amount of insulin you need with meals.

However, something about the medication still didn’t seem to cover Matthew’s health needs.

Specialty Care Shed New Light on Matthew’s Health

“I have asthma and Cowden Syndrome, a genetic disorder that involves developing a lot of lumps and bumps, increasing your risk of cancer,” Matthew said. “My father has a family history of breast cancer.”

Matthew lives next to a hospital that does a lot of research on these disorders. He happened to have an appointment for his Cowden Syndrome around the same time he was exhibiting symptoms of diabetes. Due to the COVID-19 pandemic, he’d never been to a specialist.

At the specialty clinic, Matthew met with an endocrinologist for the first time, who encouraged him to get rechecked after he shared he’d been diagnosed with T2D. After months of waiting for the results of the tests, Matthew finally got the answers he needed—he had “a gentle form of type 1 diabetes.”

Matthew was not living with type 2—it was actually Latent Autoimmune Diabetes in Adults (LADA). 

LADA is a subtype of type 1 diabetes—it simply means the person’s insulin production is going to decline significantly slower than someone with traditional T1D. LADA is more common in adults over 30 years old. 

Misdiagnoses Are Not Uncommon

Sadly, Matthew’s story is not unusual.

There is a misdiagnosis epidemic, and cases are only rising as the prevalence of diabetes grows worldwide. It’s estimated that up to 40% of adults 30 years and older who have T1D have been misdiagnosed with T2D.

One difficulty is that the symptoms of T1D and T2D can overlap. 

The symptoms may vary depending on the individual, but the main ones are consistently known as the Four T’s:

• Toilet: Frequent urination is common among individuals with high blood sugar levels. Glucose is lost in the urine, causing dehydration. Frequent urination is common, particularly at night.
  
• Thirst: People experience excessive thirst and are constantly craving drinks.
  
• Tired: Individuals become exhausted, lacking energy, with only the desire to sleep.
  
• Thinner: People may experience unexplained weight loss or muscle loss. Without insulin, your body breaks down its own fat and muscle.

It appears that many doctors presume that when a patient is overweight, they could be exhibiting the signs of T2D. While this is not true in Matthew’s case, it’s the reason for many misdiagnoses globally. 

T1D can affect people as young as six months and as old as their 70s and 80s. Without adequate testing, like in Matthew’s case, many people begin taking medications for T2D while remaining undiagnosed with type 1.

The Correct Diagnosis Changed Matthew’s Treatment Trajectory

Matthew’s first question when he received his LADA diagnosis was, “What does that even mean?” 

He was baffled as to why they couldn’t explain the diagnosis thoroughly at the appointment. Unfortunately, it’s not uncommon for newly diagnosed adults to be sent out of the doctor’s office with little information. The facility handed him a ketone-detecting blood glucose meter (BGM) first and told him they wouldn’t start him on insulin until he exhibited ketones. 

Matthew finally received insulin therapy a few months later and was then upgraded to a continuous glucose monitor (CGM). Thereafter, his insulin needs have gradually changed. Since finally receiving an accurate diagnosis, Matthew has learned to trust his instincts in making adjustments to his insulin dosing needs.

“My insulin needs are increasing, but I’ve had to figure out a lot on my own,” Matthew said. “I’m feeling pretty confident with most of it.”

Before joining the diabetes community, Matthew admits he had some stereotypical views about what it means to live with diabetes. Now he recognizes that diabetes looks different on everyone. 

His diagnosis, after all, likely stemmed from the same stereotypes that Matthew experienced before embarking on this path. Diabetes does not discriminate—it can affect anyone and everyone. Misdiagnoses among adults over the age of 30 are all too common. Matthew is just one example.