Nearly Fatal Misdiagnosis with Type 2 Diabetes

“We were in Hawaii for our honeymoon,” recalled Steven. “I started feeling really lousy, especially after meals, but I thought it was just jetlag. Looking back, that was the first inkling.”

Over the next few months, Steven’s symptoms evolved.

“Slow and steady weight loss, constantly thirsty, constant need to urinate, blurry vision, urinary tract infection,” he explained. “But the treatment for the UTI didn’t work. Meanwhile, I’d lost 35 pounds, down from 225 pounds to 190 pounds.”

The traditional symptoms of type 1 diabetes include:

• Frequent urination
• Constant thirst
• Changes in your vision
• Unexplained weight loss
• Fatigue
• Constant hunger
• Sour fruit breath
• Recurring yeast infections

At 6’2, Steven looked gaunt at 190 pounds.

His doctor checked his blood sugar level — it came back in the 500s.

“Well, I’ve got some bad news,” the doctor said, “you have type 2 diabetes.”

His blood sugar was 500 mg/dL 

“We can fix this with diet and exercise,” the doctor told him. 

“But I already eat a really good diet,” Steven told the doctor, totally confused, “and I exercise six days a week. And I run and play basketball.”

“Well, try to reduce your carbohydrate intake, eat more vegetables, and eat more protein,” suggested the doctor.

The doctor sent Steven home with his diet instructions, but Steven knew something wasn’t right. He wanted to track his blood sugar more closely, considering it was alarmingly high, but they offered no glucose meter or instructions to return for additional tests.

Down 50 pounds & feeling miserable

“Over the next few months, my weight got down to 170 pounds,” Steven said, recalling his terrifyingly thin frame. “I remember we traveled to Los Angeles for Thanksgiving, and I could barely sleep, I could barely move.”

Steven’s wife insisted they fly home and go directly to the Joslin Clinic in Boston. They didn’t make an appointment. They simply showed up. The doctors at Joslin were immediately concerned.

“Have you been seeing a veterinarian or a doctor?” they asked him. “It’s a good thing your wife brought you in because you wouldn’t have made it to Friday.”

Steven’s body was experiencing diabetic ketoacidosis — dangerous and life-threatening.

“Were you diagnosed by a veterinarian or a doctor?”

Steven credited the Joslin Clinic (and his wife) for not only saving his life but also setting him up for success.

“I owe a debt of gratitude to them for taking such good care of me,” Steve said. “Once I got home, I learned everything I could. I even wrote a letter to the doctor who misdiagnosed me, trying to educate him. He got very defensive…and that was that!”

Adjusting to healthier blood sugar levels

“My blood sugar had been high for so long that my body was used to being in the 500s,” explained Steven. “I felt very low at blood sugars of 225 mg/dL for a long time. It took a long time for my body to reacclimate to lower numbers.”

Steven began taking neutral protamine Hagedorn (NPH) and regular insulin via six daily injections along with 15 fingersticks throughout the day. He started learning about the many things beyond carbohydrates that raise blood sugar levels.

If you’ve never taken NPH or regular insulin, it’s a very different experience compared to today’s rapid-acting bolus and long-acting basal insulin.

NPH and regular insulin peak every few hours, meaning you have to eat every few hours — whether you’re hungry or not. It also dictates how much you must eat. For example, a grown man might take a dose that requires him to eat 75 grams of carbohydrates for breakfast, 45 grams for your midmorning snack, 75 grams at lunch, etc. 

It is rigid. If you don’t eat, the insulin peaks, and your blood sugar drops. Having experienced insulin management in the 90s (or earlier) can leave you with incredible gratitude for today’s options.

Learning to exercise with type 1 diabetes

As an avid athlete, Steven was eager to get back to his exercise regimen.

“The internet really opened up the ability to connect with other T1D athletes,” he adds. “It wasn’t as easy back then. I’m definitely grateful for the technology, my CGM, and my pump, for making T1D easier. It’s still a burden but life is so much better.”

Today, Steven is thriving. “My A1c is around 6 percent most of the time. My time-in-range is in the 80s,” he said with both pride and relief. “I also have two adult children, ages 31 and 28 years old.”

At 59 years old, Steven feels tremendous pride in his health despite living with a chronic illness. “I embraced a healthy lifestyle and diabetes is that calibration point,” he explained. “I don’t want diabetes to win. I’m very competitive. So I get myself to the gym! I try to eat a pretty repetitive diet, too.”

Steven’s motto: You need to embrace your burdens for the benefits they provide.

“If you look for the bad, you’ll see the bad and that’s all you’ll find,” said Steven. “If you look for the good, you’ll see the good, and you can leverage that for yourself and others.”