Misdiagnosed as type 2 diabetes

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When Florida State literature professor Phyllisa DeRose was first told she had diabetes, she was 30 and had just been hospitalized for the condition. That was in 2011. She was unconscious for over a day. She even passed out in the bathtub.

It was enough to send her to her doctor's office. There, a nurse so alarmed by DeRose's blood sugar levels ran out of the room, injected him with insulin, and returned, confident that DeRose would be okay.

But she wasn't well. She continued to become very weak, and recalls that “I knew I was going to die.'' She headed to the emergency room immediately.

There, DeRose learned that she had developed a life-threatening diabetes complication called diabetic ketoacidosis, which is caused in part by low insulin levels. Insulin is a hormone that transports glucose from the bloodstream to cells throughout the body and helps keep blood sugar levels stable.

After six days in the hospital and follow-up tests with an endocrinologist, DeRose was diagnosed with type 2 diabetes.

Correcting diagnostic errors

For the next eight years, DeRose used standard strategies to manage his type 2 diabetes: regular exercise, a low-carbohydrate diet, and metformin, which helps control glucose levels in his blood.

But eventually she couldn't manage her blood sugar levels and sought insulin from an endocrinologist. But doctors, considering insulin a last resort treatment for type 2 diabetes, rejected DeRose's request and increased her dose of metformin instead.

High doses of metformin didn't help, so DeRose began to wonder if he didn't have type 2 diabetes. She learned from diabetes bloggers she follows that she can be misdiagnosed as type 2. Like DeRose, the man was initially told he had type 2 diabetes, but later learned he had type 1 diabetes, also known as subclinical autoimmune diabetes. For adults (LADA).

Blood tests for certain antibodies, most often glutamate decarboxylase (GAD), can help confirm the diagnosis of LADA.

So DeRose asked an endocrinologist if she could get tested.

“I'm the kind of person who says, 'Well, if it happens to them, it might happen to me,'” she says. After being turned down twice because the test was expensive and unnecessary, she sought a new opinion from another endocrinologist. He also refused to order a test, even though DeRose said he would pay for the test out of his own pocket. “He said, 'There's no point in wasting the money, so I'm not going to write it yet,'” she recalls.

Things came to a head when she again began experiencing symptoms of diabetic ketoacidosis, including vomiting and dramatic weight loss. This time she consulted a gynecologist. My doctor had never heard of a diabetes antibody test, but I spent some time figuring out how to order one 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 LADA result. The DeRose number was 7,200 U/mL.

“At 7 a.m. the next morning, I slipped the test results and a note that said, 'Call me,' under the endocrinologist's office door,” she says.

Understand the difference between LADA and type 2 diabetes

Similar to type 1 diabetes, “LADA is an autoimmune disease that destroys insulin-producing cells in the body,” she explains. Kevin Peterson, MD, MPHvice president for primary care and quality at the American Diabetes Association.

However, unlike type 1 diabetes, where symptoms appear quickly and are almost always diagnosed by age 30, LADA progresses slowly. Type 2 diabetes also has a slower onset, says Dr. Peterson. This similarity is one reason why type 2 diabetes and LADA are difficult to differentiate.

Treatments for the two types of diabetes also differ. Many people with type 2 diabetes can control their blood sugar levels by modifying their diet and taking oral or injectable medications called incretin analogs. Insulin is usually needed in the later stages of type 2 diabetes or when blood sugar levels are too high.

On the other hand, some LADA patients can initially be managed with oral medications, but like patients with type 1 diabetes, they eventually become completely dependent on insulin replacement therapy. When DeRose's test results showed she had LADA, she was started on insulin, which quickly stabilized her blood sugar levels.

“If you've been diagnosed with type 2 diabetes and your blood sugar levels don't seem to be responding to lifestyle changes or oral medications, you should discuss the possibility of LADA with your doctor,” says Peterson. Because the diagnosis of LADA may be justified. ”

Evolution of rights advocacy

DeRose is grateful to the doctors who listened to her story, especially her gynecologist and endocrinologist. [my health insurance] To get an insulin pump. ” But she couldn’t help but wonder why no one would let her take a simple test for LADA. When she asked her endocrinologist, their response was simply, “We're sorry.” I missed it. ”

However, DeRose has her own doubts. “I think it's because I'm a black woman with a plus-size body,” she says. “And when you add in black people and plus-size people, people think they have type 2 diabetes. They don't think they have type 1 diabetes.” She also says medical bias plays a role. I'm thinking. “It may be implicit,” she says. “They don't even realize that's what they're supposed to be doing.”

DeRose started blogging about having type 2 diabetes soon after she was diagnosed. She initially used a pseudonym because she feared stigmatization. “I was afraid that if I made my name public, I would lose my job,” she says.

However, she eventually started using her real name and now runs a website. DiagnosedNotDefeated.com. The domain name is her motto, a word she coined because she “needed to hear that word.”

She has also expanded her advocacy work to include both type 1 and type 2 diabetes, filling a largely missing void in the advocacy community. “As a type 2 diabetes advocate, I noticed that there were these differences between types 2 diabetes, and it bothered me at times,” she says. “This is what I would do, We need a bridge to unify the types. So my joke is that God actually heard me and bridged me. ”

One of her main goals is to encourage people to fight for themselves, even when they are exhausted. Her perseverance is a lesson for everyone, especially diabetics who have problems with blood sugar levels. Above all, DeRose emphasizes that people should not give up. “I'm tired as a patient, but I want to encourage people,” she says.

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