A Dangerous Diabetes Misdiagnosis

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In early July 2011, I was a frail 114 pounds. I’m 5’5″ tall, and was all skin and bones. My sternum protruded, and my wrists appeared too big for my skin. This story, however, starts much earlier than that.

In May 2010, I was drinking water throughout the day, and going to the restroom twice as much as usual. Working at a small Minnesotan credit union, I had unbelievable support at work. I remember telling one of my coworkers that my hands and feet were colder than the winter weather, and with a tingling feeling that made it unbearable to type. “It’s diabetes,” one of my work friends joked. I laughed it off saying, “Most likely. Three of my grandparents had type 2!”

I will never forget that conversation.

Soon after, I developed crippling anxiety. Although I’m normally extroverted, I became agoraphobic. I ended up quitting my job at the credit union because I believed something terribly wrong would happen if I did not stay inside my own four walls. What I didn’t realize was that something terribly wrong was happening inside of me.

I soon checked into the hospital for depression and anxiety. After blood work results came in, a diabetes educator sat down with me and explained that I had type 2 diabetes, and that Diet Coke was going to be my new best friend. I had no idea what she was talking about. I hated Diet Coke. I was terrified, alone, and sent home with a large hospital bill and a prescription. I had no insurance and was assigned to a county doctor. I don’t think I ever knew his name. He would come in and say, “Well, you’re losing weight, so you’re doing everything correctly. Here’s your prescription.” The second time I went to him, my blood sugar was still high, so he added another prescription to my regimen thinking it would bring me down to normal levels. I was moving back south, so he gave me prescriptions for six months and sent me away.

March 2011 came, and I was living in the south. I dragged my feet finding a doctor because I was scared, but also didn’t understand that I needed one. I kept losing the weight, so I was every type 2’s dream, right? I was back working in the banking industry and I had a supervisor pull me away from my desk. She sat me down and described my bathroom breaks as a huge problem for their expectations. If I needed a medical file, I could discuss that with my doctor and get proper documentation. I could consider this a warning. I finally called a doctor in June, after it hurt to sit down. I was terrified, but felt better after they said they could get me in as a new patient in July. I spent the first half of the summer with my skin sinking into my rib cage. I was sleeping too much, going to the bathroom more, eating everything in sight, and drinking water constantly.

On a gray Friday morning in July, I went to see my new endocrinologist. After the lab tests, I went about my normal business. My phone had died because I fell asleep so hard the night before that I forgot to put it on a charger. I worked the evening shift in the fraud department at the bank so, when I got to work and had four voice mails from the doctor, I figured I’d call him Monday morning and thought any news could wait. The next morning, July 23, 2011, I woke in the morning with a call from my doctor, He told me, “Charli, you need to go to the ER immediately. You were misdiagnosed, and I believe you to have type 1 diabetes, not type 2.”

My doctor met me at the hospital. He walked me through the process of being admitted. He sat me down and asked if I had ever heard of Type 1.5 or Latent Autoimmune Diabetes in Adults (LADA). I laughed because I thought he was making it up. He looked at me with concerned eyes, and said, “You are lucky to be alive. Your blood glucose levels are in the 1800 range. I’ve never seen anything like it before.”

Another conversation I’ll never forget. Both of my kidneys were functioning at less than a 20%, my liver was fatty, and I was dangerously dehydrated.

Before leaving the hospital, I was put on insulin. Within one week, I was sleeping more soundly, the anxiety was almost completely gone, and I could eat a meal and feel full again. I was giving myself five insulin shots a day and checking my blood sugar levels every two-five hours. I saw a diabetes educator and kept in touch with my doctor by phone until I saw him again in six weeks.

I realize I am incredibly lucky to be alive. Diabetes stops me from doing things sometimes I when I need to take care of it, but it didn’t stop me all those years ago from doing the one thing I needed to do: keep living.

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Gail
Gail

I started out by being told my fasting blood sugar was 181. Diabetes runs through my family so it was no surprise. Trouble was that although I was I overweight, I meticulously kept to a diet. I was given Metformin and took it for a few years, but the side effects just tore up my stomach. I tried extended release, I tried combinations, but I couldn’t handle it. That began the parade of meds and different diets. I had success at everything for a limited time, but then with no explanation, the numbers would creep up and the weight would… Read more »

Heather
Heather

This sounds like my story. I was diagnosed with Type 2 diabetes after having the typical breakdown: peeing every 20 minutes, constant panic-stricken thirst, uncontrollable itching, blurry vision, etc. This was after having lost 50 lbs. Things only got worse after my diagnosis. I had kidney and bladder infections that were worse than before. I kept ending up in the ER with blood sugars over 500. I lost over 125 pounds. After 4 specialists who kept giving me the same drug that caused pancreatitis, I finally got in to see a nurse practitioner at my tribe’s diabetes clinic. She listened… Read more »

Briget62
Briget62

I had a very similar experience when I presented with T1 at age 44. I’m 5’8″ and went down to 102 lbs. before getting a proper diagnosis. The endo I was sent to (I was diagnosed by my PCP) kept saying “It has to be T2 because of your age.” Meanwhile I was slowly disappearing, and kept saying “I don’t think these pills are working.” Fortunately I am a reader (no easily available Internet in 1994) so after reading a stack of books I got a new endo, a correct diagnosis and started my journey back to good health. I’m… Read more »

keith
keith

Amazing story. And many of us have likely experienced parts of your journey as well. For me Google is missing a diagnosis button but I was on right track sniffing out my diabetes symptoms. I was looking for help with my cataracts and went to a clinic for a general physical. And that’s where I was informed about having type 2. My numbers were off their machines scale, was given a shot or 2 of insulin was asked to wait for my sugars to go down. Clinic setting… started out fine and the price was right but got to where… Read more »

Vidya Sury
Vidya Sury

Oops. Perils of commenting on the phone. Doctor who steered you right.

Vidya Sury
Vidya Sury

Gosh! Charli, I can only imagine how terrifying the experience must have been. Mis-diagnosis is so dangerous. I am shuddering to think what you went through. So glad you found a doctor you steered you right. Be well! Hugs!

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