By By Maria Masters. Medically Reviewed by Elise M. Brett, MD,
11 hours ago
Fighting for the Right Diabetes Diagnosis
After a near-death episode, Phyllisa suspected her type 2 diabetes diagnosis was wrong. It took unwavering persistence to
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The first time Phyllisa Deroze, a professor of literature from Florida, was told she had diabetes, she was 30 and had just been hospitalized for symptoms of the condition. It was 2011 and she had been feeling faint for more than a day. She'd even passed out in the bathtub.
It was enough to send her to her primary care doctor's office. There, a nurse was so alarmed by Deroze's glucose levels that she rushed out of the room and came back with a shot of insulin , which she administered along with assurance that Deroze would be fine.
But she wasn't fine. She continued to feel so weak, she recalls, that "I knew I was dying." She headed straight to the emergency room.
There, Deroze learned that she'd developed a life-threatening complication of diabetes called diabetic ketoacidosis , which is partly caused by low levels of insulin. Insulin is a hormone that helps shuttle glucose from the bloodstream to cells throughout the body, keeping blood sugar levels steady.
After a six-day hospital stay and follow-up testing with an endocrinologist, Deroze was diagnosed with type 2 diabetes .
Correcting a Diagnostic Mistake
For the next eight years, Deroze used standard strategies for managing type 2 diabetes : regular exercise, a low-carb diet, and metformin, a medication that helps control the levels of glucose in the blood. Ultimately, though, she wasn't able to manage her blood sugar levels and asked her endocrinologist for insulin. But the doctor regarded insulin as a treatment of last resort for type 2 diabetes and refused Deroze's request, increasing her metformin instead. The higher dose of metformin didn't work, and Deroze began to suspect she might not be dealing with type 2 diabetes. She'd learned from a diabetes blogger she followed that it was possible to be misdiagnosed with type 2. Like Deroze, that person had initially been told they had type 2 diabetes but later learned they had a form of type 1 diabetes called latent autoimmune diabetes in adults (LADA). A blood test for a certain antibody - most often glutamic acid decarboxylase (GAD) - can help confirm a diagnosis of LADA. So Deroze asked her endocrinologist if she could be tested.
"I'm the kind of person where I'm like, ‘Well, if it can happen to them, it can happen to me,'" she says. After being turned down - twice - on the grounds the test was expensive and unnecessary, she sought a fresh opinion from another endocrinologist. He also refused to order the test, even after Deroze said she'd pay for it out of pocket. "He says, ‘Well, I'm still not going to write it, because it makes no sense for you to waste your money,'" she recalls.
Things came to a head when she once again began to experience symptoms of diabetic ketoacidosis, including vomiting and dramatic weight loss. This time, she turned to her gynecologist, who'd never heard of an antibody test for diabetes but took the time to figure out how to order it for Deroze. The results showed that her numbers were literally off the charts: A score of 5 units per milliliter (U/mL) indicates a positive result for LADA. Deroze's number was 7,200 U/mL.
"At seven o'clock the next morning, I slipped the test results under my endocrinologist's office door with a note that said, ‘Call me,'" she says.
Understanding How LADA Differs From Type 2 Diabetes
Similar to type 1 diabetes, "LADA is an autoimmune disease that destroys the insulin-producing cells in the body," explains Kevin Peterson, MD, MPH , the vice president of primary care and quality at the American Diabetes Association.
Unlike type 1 diabetes, though, which becomes symptomatic rapidly and is nearly always diagnosed before age 30, LADA develops slowly. Type 2 diabetes is also slow to develop, says Dr. Peterson. This similarity is one reason it can be challenging to distinguish between type 2 diabetes and LADA.
The two types of diabetes are also treated differently. Many people with type 2 diabetes can control their blood sugar by modifying their diet and taking oral medication or injectable drugs called incretin analogs. Insulin is commonly needed in the later stages of type 2 diabetes or when glucose levels are too high.
On the other hand, while some people with LADA are able to manage it with oral medications in the beginning, they'll eventually become fully dependent on insulin replacement therapy, as people with type 1 diabetes are. Once Deroze's test results revealed she had LADA, she began taking insulin, which quickly stabilized her blood sugar levels.
"If you're diagnosed with type 2 diabetes and your blood sugars don't seem to be responding to lifestyle changes and oral medications, you should discuss the possibility of LADA with your doctor," says Peterson, "and ask whether a blood test for the diagnosis of LADA might be warranted."
The Evolution of Advocacy
Deroze is grateful for the doctors who listened to her - especially her gynecologist and endocrinologist, who "had to fight [my health insurance] for me to get an insulin pump." But she couldn't help but wonder why no one would give her the simple test for LADA. When she pressed her endocrinologist, their response was simply, "I'm sorry. I missed it."
Deroze has her own suspicions, though. "I think it's because I'm a Black woman in a plus-size body," she says. "And when you add Black people and plus size, people think type 2 diabetes. They don't think type 1 diabetes." She also believes medical bias played a role. "It might be implicit," she says. "They don't even recognize that that's what they're assuming."
Deroze began blogging about having type 2 diabetes soon after she was diagnosed. She first used an alias, for fear of being stigmatized. "I was scared if I put my name out there, I wouldn't get a job," she says.
Eventually, though, she started using her real name and now maintains a website, DiagnosedNotDefeated.com . The domain name is her motto - a saying she coined because "I needed to hear those words."
She also has expanded her advocacy to include both type 1 and type 2 diabetes, filling a hole that's largely missing in the advocacy community. "As a type 2 diabetes advocate, I would notice there was this separation between the types, and sometimes it would get to me," she says. "I would just be like, There should be a bridge unifying the types. So my joke is, God actually heard me and made me the bridge."
One of her main goals is to encourage people to fight for themselves, even when they're exhausted. Her perseverance is a lesson for everyone, especially people with diabetes who are having trouble with their blood sugar levels. Above all, Deroze stresses that people shouldn't give up. "There's a fatigue from being a patient, but I want to encourage people," she says.
Editorial Sources and Fact-Checking
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy . We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Elise M Brett, MD, is a board-certified adult endocrinologist. She received a bachelor's degree from the University of Michigan and her MD degree from the Icahn School of Medicine at Mount Sinai. She completed her residency training in internal medicine and fellowship in endocrinology and metabolism at The Mount Sinai Hospital. She has been in private practice in Manhattan since 1999.
Dr. Brett practices general endocrinology and diabetes and has additional certification in neck ultrasound and fine-needle aspiration biopsy, which she performs regularly in the office. She is voluntary faculty and associate clinical professor at the Icahn School of Medicine at Mount Sinai. She is a former member of the board of directors of the American Association of Clinical Endocrinology. She has lectured nationally and published book chapters and peer reviewed articles on various topics, including thyroid cancer, neck ultrasound, parathyroid disease, obesity, diabetes, and nutrition support. See full bio
Maria Masters
Author
Maria Masters is a contributing editor and writer for Everyday Health and What to Expect, and she has held positions at Men's Health and Family Circle . Her work has appeared in Health , on Prevention.com, on MensJournal.com, and in HGTV Magazine , among numerous other print and digital publications.
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