Lua’s Diabetes Misdiagnosis: 7 Years of Frustration & Severe Symptoms

The First Signs

"About 19 years ago, around December of 2005, I started waking up to pee at night—huge amounts," Lua recalled. "Then slowly, over the next six or seven months, my symptoms just kept escalating. Peeing all night, then all day. Developing cellulitis and pneumonia, and an abscess on my labia.” 

Lua was frustrated and scared. The symptoms kept getting worse.

“By July of 2006, I was sleeping 16 hours a day, dropping three pounds a day, and losing my hair. My weight had plummeted by 60 pounds, and everyone was congratulating me, like ‘good job!’"

While she should’ve been glad about the weight loss, she felt miserable. At the time, Lua was in her final semester of nursing school in Hawaii, planning a wedding and pushing through her worsening symptoms. 

"I would fall asleep after every meal, always feeling shaky and dizzy. But I didn’t know what was wrong."

The Misdiagnosis

Lua’s first clue came when she tested her blood sugar on a friend’s glucose meter. "It read ‘HIGH.’ I washed my hands and tested again—564 mg/dL. That’s when I knew something was seriously wrong."

Despite her medical background as a nurse, she faced intense resistance from doctors. A visit to a physician in Fiji resulted in an immediate type 2 diabetes (T2D) diagnosis—without any lab work. 

"She put me on metformin and an SGLT-2 inhibitor, but nothing brought my blood sugar below 250 mg/dL. After three weeks, I told her, ‘I am 24 years old. I know, as a nurse, what my long-term risks are with blood sugars this high. I need insulin!’"

Finally, the doctor relented and prescribed NPH insulin. 

With a combination of insulin, a strict low-carb diet, and regular exercise, Lua managed to keep her blood sugar within a safe range. But she knew something wasn’t right. 

"If I stopped exercising or strayed from my diet, my blood sugar skyrocketed. I tried weaning myself off insulin and immediately got cellulitis, lost weight again, and my hair fell out. That’s when I knew—I truly need this."

Pregnancy and Growing Suspicions

Over the next several years, Lua went through multiple pregnancies while managing diabetes. 

"My first pregnancy was picture-perfect aside from diabetes. But my placenta gradually started failing at the end," she explains. "With my second, I had an endocrinologist, but I developed complications and had to stop working. My baby was born jaundiced and spent time in the NICU."

Without much support, Lua managed T2D as though it was type 1 diabetes (T1D) in an effort to keep her blood sugar levels in the pregnancy target range.

It wasn’t until her third pregnancy that healthcare professionals began questioning her diagnosis. 

"The nurses in the hospital suspected I had type 1, not type 2," Lua said, which prompted her to start questioning the diagnosis herself. She began researching and discovered c-peptide testing. 

C-peptide is an indication of how much insulin your body is producing. In people with T2D, c-peptide levels are generally very high because the pancreas is trying to make as much insulin as possible. In T1D, c-peptide levels are very low or so low the test can’t produce a true value.

“After my baby was born, I asked my endocrinologist for a c-peptide test. She resisted because it’s an expensive test, but I convinced her.” 

Lua’s c-peptide results were obvious: T1D with undetectable insulin production.

“Finally, in 2013, I was properly diagnosed with type 1 diabetes,” said Lua. 

Living with Multiple Health Conditions

Though her type 1 diagnosis eased a great deal of frustration and solved quite a few mysteries, Lua’s health journey was far from over. 

Over the years, she has been diagnosed with mast cell activation syndrome, pancreatic exocrine enzyme insufficiency, bipolar II disorder, and polycystic ovarian syndrome (PCOS). 

"Mast cell activation has put me in the hospital over 30 times," she said. "I have to switch insulin types often because I develop allergies to them."

Despite these challenges, Lua has worked hard to manage her diabetes. 

"Amidst all of this, diabetes management is going surprisingly well," she shared. "I explain to people that diabetes is an infant I care for, and mast cell activation is an out-of-control toddler. They don’t play nice together, and they compete with each other. There are no vacations, no breaks—they go with me everywhere."

Today, Lua uses a Tandem t:slim insulin pump and Dexcom continuous glucose monitor (CGM), helping her maintain A1c levels in the high 6s and low 7s. 

"My endocrinologist is very pleased and encouraging. He knows I’m dealing with so much."

The Ongoing Battle

Even with a correct diagnosis, Lua still faces hurdles in the healthcare system. 

"Doctors have still questioned my type 1 diagnosis despite undetectable insulin production," she said. "They were trying to deny me insulin when I was hospitalized in the ER because I wasn’t eating, so they thought I shouldn’t be taking any insulin.”

She also faces complications like early-stage kidney disease and complex dyslipidemia, which she carefully manages with medication and lifestyle adjustments. 

“In 2015, I had five operations on my toenails that would not heal,” recalled Lua. “I needed a lot of antibiotics, but that permanently damaged my body. I was able to return to work for about 1.5 years; then, I developed severe plantar fasciitis. It traveled up my entire body. I’m on disability today because of everything.”

Thanks to her research and determination, she’s managed to keep her diabetes retinopathy in check.

"My eyes are stable as long as I manage my blood pressure," Lua added.

Looking Forward

After years of struggling in a stressful marriage, Lua separated from her husband last year, and the impact on her quality of life and physical health has been significant. 

"It was the right decision for my health and well-being."

Though her health remains complex and challenging, she remains hopeful and determined. 

"I’ve lived with type 1 diabetes for 19 years. My journey has been difficult, but I keep fighting for the care I need. If there’s one thing I’ve learned, it’s that you have to be your own biggest advocate in the healthcare system."

Lua’s story is a testament to resilience, self-advocacy, and the importance of listening to one’s body. While misdiagnosis delayed her proper care, her perseverance ensured she finally got the answers she deserved.