You can be misdiagnosed with type 2 diabetes instead of another type of the condition. This is because some symptoms may be similar, and it may not always be clear which type of diabetes you have without more detailed healthcare discussions or specific diagnostic and genetic testing.
When Phyllsa Droze was first diagnosed with type 2 diabetes, she didn’t think the question the doctor who offered that diagnosis. Yes, it was shocking and a life change for her in her 20s at the time, but she began taking the needed steps to start managing the condition.
It was almost a decade later that she came to learn that the initial diagnosis was actually a misdiagnosis, and she wasn’t living with T2D. Instead, she had latent autoimmune in adults, commonly known as LADA or type 1.5 diabetes.
Many others, particularly women of color like myself, have also been wrongly diagnosed and that brought on feelings of fear, confusion, and shame,” Droze said.
This story is not unique, as some research indicates as many as 40% of people diagnosed with T2D may actually have another type of diabetes.
This 2019 research found evidence that more than one-third of adults 30 years or older who receive an initial T2D diagnosis may actually have T1D.
The study found that those who require insulin within 3 years of diagnosis have a high probability of type 1 diabetes, or LADA.
This 2019 online survey involving roughly 3,000 people found that 76% of participants had been misdiagnosed with type 1 diabetes, and these people who actually had T1D had a higher risk of dangerous blood sugar and DKA as a result of that missed or delayed diagnosis.
Other research suggests higher numbers, with
When it comes to diabetes testing and African Americans, this 2017 research noted that one genetic variant in particular, found only in African Americans, significantly reduces the accuracy of the A1C blood test used to diagnose and monitor the condition.
This means around 650,000 African Americans in the United States could have undiagnosed diabetes.
While the study focused on T2D, it underscores two important facts:
- many African Americans are misdiagnosed or undiagnosed
- current standards of diabetes diagnosis must be improved to provide an accurate diagnosis
Another barrier facing people of color with diabetes is that type 1 diabetes has historically, in the United States, been framed as a “white condition.”
As author Arleen Tuchman explains in her Diabetes: A History of Race and Disease book, “Since the beginning of insulin therapy a century ago, type 1 diabetes too often had been seen as an upper-middle-class, white affliction. Lack of medical care historically prevented many without means from receiving a correct T1D diagnosis before the condition proved fatal.”
When entire populations are excluded from common assumptions about who can and cannot get T1D, this leaves ample room for misdiagnoses to occur.
For Droze, her diabetes story began in 2011 following high blood sugar symptoms for several weeks, including unquenchable thirst and frequent peeing multiple times an hour.
By the time of a doctor’s appointment, her hands and feet also felt tingly and numb. That evolved into fatigue, weight loss, blurred vision, and trouble focusing.
A fingerstick meter in the doctor’s appointment showed a “HI” result, and she was given insulin through an IV. But her doctor didn’t offer any diabetes diagnosis, and did not indicate she might have to start taking insulin or take any special actions other than managing her weight.
But soon, her symptoms worsened and a co-worker drove her to the ER.
That’s where she recalls hearing the word “diabetes” for the first time.
“I was confused and wondered how this could apply to me as a 31-year-old woman with no family history of diabetes,” she said. “I thought diabetes happened to people much older or much younger than me. Still, my confusion was combined with feelings of relief, because I finally knew the reason for my array of symptoms.”
After a six-day hosptial stay, she received a T2D diagnosis. She lives with that diagnosis for 8 years,
However, over time, she noticed A1C results in an upward pattern despite losing more than 50 pounds and being what she thought was the healthiest she’d been in years.
Online research led Droze to request from her endocrinologist for type 1 diabetes (T1D) antibody testing. However, her healthcare team did not grant those requests for more than a year.
Instead of ordering tests, they increased her oral medications. Until the point where she started losing weight again, and her blood sugar levels remained high above 300 mg/dL without explanation.
Her OB-GYN ordered a T1D antibody test and came back positive. That finally motivated her endocrinologist to order a full panel of diagnostic tests, and the results came back positive for two T1D antibodies.
She then received a LADA diagnosis, and immediately started on insulin therapy and carb counting for everything she ate and drank.
“I felt a wave of emotions. I was confused about being misdiagnosed for 8 years,” she said. “I was angry that I was denied antibody testing for over a year. But I learned that it is important to know your body and to keep seeking answers to your questions, as well as learning that being misdiagnosed is an emotional experience.”
Droze’s story is not unique, as many people in the Diabetes Community have shared their stories of misdiagnosis.
People may be misdiagnosed with a form of diabetes when they are actually living with a different time. This may involve people with type 1 diabetes being misdiagnosed as adults, or those with a genetic form of monogenic diabetes being diagnosed incorrectly.
An incorrect diagnosis can mean not being prescribed the necessary insulin or the correct dose of medication that can best manage blood sugar levels and your overall health.
Your healthcare team is a key part of assessing and diagnosis, which includes discussing your specific symptoms and medical history. This also includes any lifestyle factors or medications that you may be taking, or that you might need to adjust if they are not working as well as you and your doctor believe they should.
Always listen to your body, taking that into account with your healthcare team’s guidance. Make sure to request diagnostic tests to discuss with your doctor, to properly understand and treat the type of diabetes you may live with.
Learn more about LADA or type 1.5 diabetes, and how it can mirror both type 1 and type 2 diabetes symptoms. You can discuss this with your healthcare and diabetes care teams.