Misdiagnosed: Danielle’s Fight to Protect Her Daughter

When Danielle was diagnosed, she suffered from severe diabetic ketoacidosis (DKA). Despite the significant red flags indicating it could be type 1 diabetes (T1D)—outdated stigma and a lack of understanding may have contributed to the month and a half she spent believing she had type 2.

A Nurse Practitioner's Challenge

While Danielle was living with type 2 diabetes, she managed her diabetes with Novolog Flexpens for mealtime insulin and Lantus for her background basal insulin. She also used the OneTouch Mini glucometer.

“Leaving the hospital was overwhelming, but my parents and I were fairly confident that my type A personality was just the right fit for a diagnosis like this,” Danielle said. “Knowing that I could obsessively monitor my sugar and give myself insulin to bring down the highs made me feel like I had control over what happened to me.”

It wasn’t until Danielle returned to school after a three-week medical leave that she began seeing an endocrinologist at an Allentown, Pennsylvania, practice. Following further testing, she received an accurate diagnosis of type 1 diabetes. To Danielle’s surprise, this diagnosis came not from an endocrinologist, but from a nurse practitioner, Connie, whom Danielle calls “the best ever!”

“Instead of a ‘this is your life now, good luck!’ message, my nurse practitioner made sure I knew how well we could tag-team this new reality together,” said Danielle. “I knew I was in it for the long haul now and that I’d be insulin-dependent.”

Danielle's Journey to the Right Diagnosis

Fortunately, correcting Danielle's diagnosis took only one and a half months. She believed her initial misdiagnosis stemmed from the practicing endocrinologist’s limited experience, as he had only treated patients with type 2 diabetes.

Danielle remembered that the nurses in the emergency room and intensive care unit met with her for only about 20 minutes during her seven-day stay—the week her life changed. She recalled her doctor saying, “Danielle has type 2 diabetes. If she takes care of herself, she can live a long and happy life—if she doesn’t, she can go blind or lose limbs.”

There was no mention of any autoimmune conditions, such as T1D. While alarming, Danielle’s story isn’t uncommon and this was just the beginning of her journey with diabetes.

Healthcare Stigmas Contributed to Danielle’s Misdiagnosis

Though Danielle’s insulin injection therapy was working well during the one and a half months, she now believes that it was because she was still in the honeymoon phase.

The T1D honeymoon phase typically begins about three months after initiating insulin therapy. In some cases of type 1 diabetes, the pancreas appears to regain its function and produce small bursts of insulin, temporarily masking the symptoms. The duration of this remission phase can vary, lasting anywhere from a few weeks to several months or even years.

“It was almost like in his ‘generation’ of doctors, there wasn’t even an understanding that type 1 could be diagnosed in a person over the age of 12—I was 20 when I was a junior in college—juvenile diabetes was for kids at the time, and once you were out of your teens, if you had high blood sugars, DKA symptoms, etc., you had type 2 diabetes,” Danielle said.

Danielle’s doctor was used to working with prediabetic populations whose lifestyle choices impacted their diagnoses. Danielle also has a family history of type 2 diabetes with her paternal grandfather and maternal grandmother. There was no history of type 1 diabetes in Danielle’s family until her diagnosis, but at the time, she didn’t realize that it didn’t matter. 

According to the BreakthroughT1D (Formerly JDRF), 90 percent of people with type 1 diabetes have no family history.

“We just accepted the information without hesitation,” Danielle said.

Given her family history, limited knowledge, and Danielle’s age, it seemed reasonable to believe that she was living with type 2 diabetes.

Classic T1D Symptoms

“I had every textbook symptom to suggest a diabetes diagnosis,” Danielle said. Many symptoms are shared between people with various types of diabetes, which can make it even more complicated to diagnose, on top of the implicit biases and stigmas ravaging some communities. 

Danielle’s symptoms included rapid weight loss, extreme thirst, excessive fatigue, nausea, and vomiting. For someone undergoing diagnosis, T1D symptoms may include: 

• Rapid Weight Loss: Without insulin for energy, your body breaks down its own fat and muscle, resulting in sudden weight loss.
• Excessive Thirst: With high sugar levels, glucose is lost in the urine, causing dehydration. Drinking to quench your thirst and getting no relief is a common diabetes symptom.
• Extreme Tiredness or Lethargy: The lack of insulin causes high glucose levels in the blood, which are not properly distributed to cells and muscles for use as fuel. This is why one might feel incredibly weak and lack energy.

• Nausea and Vomiting: Gastrointestinal symptoms, such as nausea, vomiting, bloating, and abdominal pain, could indicate undiagnosed T1D. 
• Frequent Urination: When blood glucose levels are high, sugar is lost in the urine, causing frequent urination. This does not mean having to go several times a day. It occurs several times an hour and lasts longer than usual. 
• Increased Appetite: Besides extreme thirst, your stomach could feel like a bottomless pit. No matter how much you eat, you still feel hungry.  
• Itchiness around the Genital Area or Regular Bouts of Thrush: Increased sugar can relate to yeast infections, itchiness, pain in and around the vagina, and a thick white discharge or redness. There could also be pain when you urinate or have sex.
• Blurred Vision: Damaged or enlarged blood vessels can swell and leak, causing blurred vision. This stopped blood flow causes the lens of your eye to change shape.
• Slow to Heal Cuts and Bruises: Poor circulation causes wounds to take longer to heal. This is because it takes more blood to get to the wound site to fight off the infection.
• Fruity Breath: Since the body cannot break down muscle for energy, the accumulation of ketones in the blood and urine gives off an odd, fruity smell.
• Heavy Labored Breathing: In some cases, individuals may reach the point of diabetic ketoacidosis (DKA) before being diagnosed with type 1 diabetes. Here, the person may experience heavy, taxed breathing.
• Dry Skin: Having dry skin is another common symptom associated with high blood sugar. If you have a skin infection that takes longer to heal, poor circulation, or dry, itchy skin, it may indicate type 1 diabetes (T1D). 

When Danielle’s Daughter Exhibited Symptoms, She Didn’t Hesitate

Though experiencing a yo-yo period of diagnoses was challenging, it ultimately helped shape Danielle’s understanding of diabetes, benefiting her future family well. Today, Danielle’s five-year-old daughter, whom she calls her “mini-me,” shared her diagnosis. 

“She was diagnosed nearly two years ago,” Danielle said. “Fortunately, with my own experience, my husband’s as a spouse to someone with type 1 diabetes, and the experience and knowledge I’ve had with my own disease, Mykhaila was hospitalized ASAP, avoiding DKA complications.”

She tested Mykhaila’s blood sugar at home. It read 376 mg/dL. That sinking feeling was right. They took her straight to the pediatric emergency room. Thankfully, she never developed DKA. Knowing the signs might’ve very well saved her daughter’s life.

Through the Highs & Lows of T1D–They’re in it Together

Today, life is steadier for Danielle and her family. Although they’ve faced ups and downs in insurance coverage, high-risk pregnancies with T1D, and trial and error with diabetes technology, they’re in it together.

“Mykhaila’s endocrinologist actually has T1D himself, and he got us set up with a Dexcom sensor after leaving the hospital,” Danielle said. “We had her on Omnipod by the Fourth of July.”

Today, Danielle uses the Medtronic Minimed insulin pump—it only took six months after meeting with her NP Connie for this to happen. “Connie facilitated everything with training for me and my family,” Danielle said. With plenty of practice, Danielle recognized the signs in her daughter very early; still, “It felt like it all changed in a week.” 

“She had a cold and stayed home on a Tuesday. The next day, my mom and I took her and my youngest, Luka, to the park for a playdate with my niece…when we got home, Mykhaila laid down for a nap, which we attributed to pure exhaustion, but she slept for two hours…which was unusual but not totally alarming.”

When Mykhaila spiked a fever that night, Danielle paid closer attention. She treated it with children’s Tylenol, and the next day, Mykhaila was back to her usual self. At a family barbecue for Memorial Day weekend in 2023, Mykhaila suddenly asked to lie down on their friends’ couch out of nowhere. Danielle had a bad feeling.

“As for me, I got my first CGM in 2016 right before I got pregnant with my oldest son after being denied coverage for years,” Danielle said. “I stopped being complacent with the Medtronic Guardian CGM. Then I finally got approval for Dexcom. I made the switch to Omnipod in February of this year after seeing how well my daughter did on it.”

Advocacy Across Generations

Demonstrating that there’s always room for evolution on the journey with type 1 diabetes, Danielle and her daughter, Mykhaila, exemplify resilience, strength, and courage in self-advocacy within the healthcare setting.

Type 1 diabetes is not easy, but they are a shining example of the power of going through it together. While Danielle’s misdiagnosis wasn’t a dream, she leveraged that experience to prevent her daughter from going through the same thing, and their family is healthier and happier for it.