Surviving a Type 2 Diabetes Misdiagnosis & Denial: Rebecca’s Story

The scariest part of Rebecca's misdiagnosis is that all of her efforts to manage type 2 diabetes felt futile and led to years of severe dismissal that would lead to permanent damage throughout her body.

Here’s a closer look at Rebecca’s story.

The Surprise Diagnosis

With a family history of type 2 diabetes, she didn’t question the diagnosis. However, despite her age, her healthcare team didn’t dig deeper. Rebecca’s doctor told her to lose weight, cut out soda, check her blood sugar with a glucometer, and start taking metformin. 

Fortunately, she did a bit of her own research, too.

“I reduced my carb intake so radically that I lost 20 pounds in the first few weeks,” said Rebecca. “But my blood sugars were still high. So I did more yoga, but my blood sugars were still high.”

At this point, Rebecca was taking the maximum daily dosage of 2,000 mg of metformin. She wasn’t tolerating the medication well, and the side effects were brutal for her. 

“I dealt with the awful diarrhea that plagues so many who are on this medication,” she said. “And my blood sugars were still high.”

Frustrated, angry, and scared, Rebecca started to feel helpless. This was the beginning of her denial.

Diabetes denial & real consequences

It’s certainly hard to judge Rebecca for diving deep into denial. All the tools she was given to manage her diabetes were completely ineffective. 

“I started spinning a tale for myself about how maybe my body had actually adapted to high blood sugar levels,” she remembered. “After all, I don’t feel sick. My toes weren’t falling off; I didn’t have wounds refusing to heal or any other stereotypical complications.”

Then, she stopped taking metformin and stopped checking her blood sugar. “Nothing seemed to make a difference, so why bother?” she reasoned.

This denial continued for several years. 

Years later, a trip to the doctor

With a master's degree in marriage and family therapy, Rebecca’s business was thriving. She decided it was time to see a doctor again and hold herself accountable for the same self-care advice she gave to her clients.

“By this time, I had dropped more weight, now down to 115 pounds, which is supposed to be a healthy weight for my height, but my blood sugars were still high.”

When her new doctor checked her blood sugar, it came back at 500 mg/dL. They wanted to send her to the emergency room right away, convinced she was moments away from a “diabetic coma.”

“I refused,” said Rebecca, who didn’t have health insurance at the time. “This was scary, but there was no way I could afford an ER visit.”

Instead, they offered her insulin, still under the presumption she had type 2 diabetes. It took an hour for the insulin to arrive. Meanwhile, Rebecca’s anxiety level was shooting through the roof. When they checked her blood sugar again, it was up to 600 mg/dL. 

“They gave me 10 units of insulin, and my blood sugar dropped 200 points in 45 minutes,” she remembered. “I went home that day with a prescription for insulin. Finally, something that would help my blood sugar reach ‘normal’ levels.”

Rebecca’s research: Is this type 1.5 diabetes?

“When I started doing my own research, I discovered another type of diabetes, type 1.5, and it described my symptoms more accurately than a type 2 diagnosis,” said Rebecca. 

Type 1.5 diabetes, also known as LADA (latent autoimmune diabetes in adults), is a subtype of type 1 diabetes. The only difference is that it progresses at a significantly slower pace than typical type 1 diabetes. The attack on the immune system in LADA is extremely slow, which also means it can look like type 2 diabetes for years, even a decade.

How do you differentiate between LADA and type 2? 

It starts with a C-peptide test.

C-peptide indicates how much insulin your pancreas is still producing. Rebecca’s c-peptide results revealed she was producing very little insulin — a clear sign of LADA, not type 2. 

In type 2 diabetes, c-peptide levels are typically very high because the body is trying to make enough insulin amidst increasing insulin resistance.

The other test is to look for the autoantibodies of T1D — which are produced when the immune system attacks and destroys the insulin-producing cells in the pancreas. These autoantibodies are extremely rare in type 2. Unfortunately, this is not as reliable when you’re trying to pinpoint LADA because some people simply don’t test positive for autoantibodies despite clearly having type 1.

She blames herself for diabetes complications — she shouldn’t

Rebecca blames herself for the development of neuropathy in her legs and feet and the macular edema in her eyes.

“I’m now paying the price for that denial and that doctor’s misdiagnosis early on,” said Rebecca. 

Sadly, this shouldn’t be her guilt. Her healthcare team should have followed her blood sugars more closely, identifying that the typical type 2 treatment plan was not effective, and performed further testing to understand her dangerously high blood sugar levels.

“I have to have medicine injected into each eyeball every few weeks to keep the swelling down,” said Rebecca of her macular edema. “I have already experienced some loss of vision, but since getting my blood sugars under control, that loss has slowed down.”

The big lesson? Demand more care. Demand better care. Doctors don’t know everything.