How I Was Misdiagnosed with Type 2 Diabetes In My 40’s

Written By: Erin Clausen

In my 42 years leading up to my Type 1 diabetes diagnosis, I’d never been the type of person to get sick much at all. An occasional cold every couple of years. Maybe a quick 24-hour flu a couple of times in my entire life. My immune system always seemed to function incredibly well. Better than most I’d always thought.

Eight months before my diagnosis, I had the flu. It was the most awful three days. I couldn’t keep anything down. My bones ached miserably. A seemingly inescapable relentless aching that made me want to scream. I could do nothing but hope to sleep in between diarrhea, vomiting, and dry heaves.

In the months that followed that horrible flu. I noticed I wasn’t feeling up to par. I started having to use the bathroom in the middle if the night. Where before, I almost never got up to pee during the night. It soon became two to three times a night. I also noticed that I was often very thirsty. I would wake up every couple of hours and drink from the 32-ounce glass of water on my nightstand.

I even started to run out halfway through the night and needed to refill my cup. Then the frequent urination became five to six times a night. The conversations I’d have in my mind every time I’d wake up needing to pee went like this. “Dammit Erin, stop drinking so much water and you won’t have to pee so much!” or “I wonder if I should see my doctor about overactive bladder issues?”

I had also been losing weight easily. I chalked it up to the fact that I was a massage therapist and I expended a ton of energy during the day working on clients. I even wore a fitness activity/calorie burn monitor. It confirmed that I was burning a lot of calories. In hindsight, my job and level of activity probably saved me from super high blood sugars and DKA. I had been exercising my blood sugar down every day.

When I finally had enough of the frequent bathroom trips, thirst, and shear exhaustion I decided to get in with my doctor’s office. I saw a female Physician’s Assistant at that time. I loved her. She listened to my complaints and said:

“It sounds like diabetes.”WHAT?? Diabetes never even entered my mind. “But I’m the healthiest person! I’m the low carb, broccoli, quinoa, nutrition peddling queen!”, I said. “I’ve never really had bad blood glucose tests in my life!  She replied, “well, let us just run a bunch of tests and see what comes back.” She ran tests for thyroid, blood glucose, cancer, etc, etc…

A few days later, there was a voicemail on my home phone when I’d returned home from work. “Erin. I need you to come by my office tomorrow. You don’t need an appointment, just come by. One of your tests came back with some distressing results.” OH, MY GOODNESS! I just knew it was something bad, like cancer. Still, not even thinking how I could possibly have diabetes.

I got to her office the following day and was quickly taken back to an exam room. She entered the room and greeted me. She immediately got to the point. “Erin, you’re diabetic. Your fasting blood sugar was 356.” I was instantly stunned. “But how did this happen?” I’ve always been so healthy!” She and the physician she worked under assumed and misdiagnosed me with Type 2 (because of my age) and sent me home with a prescription for Metformin. She was sent a referral to the Endocrinologist. Our small town doesn’t have any Endocrinologists. The closest one is 90 miles away. She told me they should be calling me soon to schedule an appointment.

It was Friday—I went back to my work and tried to get my mind on something other than the terrible news I’d just gotten. I worked until 5 pm, went to dinner with my husband and told him the details of my day. When I arrived home that night, there was a voicemail from the Endocrinology office wanting to schedule my appointment. Shoot!! I missed the call. Now I’ll have to wait until Monday to call them back.

After some brief reading online about blood sugar ranges, and quickly learning that a BG in the 350 range was not good at all, and I should probably be on insulin.

The next day, I was afraid to eat anything with carbs for fear that my blood sugars would go even higher. My breakfast consisted of string cheese and almonds. I also started my own research into diabetes. Type 2, just made no sense at all to me. Generally, I had always thought Type 2 was gradual in its onset of increasing blood sugar levels. My diabetes just came almost out of nowhere!

My limited knowledge of Type 1 or Type 2, was that Type 1 was the juvenile type, and the “bad” kind that you were born with or happened or in your childhood and you needed insulin to survive. And Type 2 was what adults got… What “grandma” got. Although no one in my family had Type 1 or Type 2, even grandma… I quickly stumbled across information on other types I never even knew existed. Like Type 1.5 LADA. “THIS!!! This makes more sense! This is probably what I have!”, I said out loud.

Sunday mid-afternoon, still on my string cheese and almonds meal plan, I found a Facebook group on 1.5 LADA and started talking with people. I explained my situation about my diagnosis of Type 2. The people in the group asked if my doctor had given me a blood glucose meter or if I had tested my urine for ketones. I explained that I hadn’t been given a meter and I didn’t know how to test for ketones. After a couple of them urged me to go get a meter, and ketone test strips, my husband jumped in the car and headed to the drugstore to purchase the items I needed.

It was early evening now. The people on the group walked me through how to use my meter and how to test my ketones. The color on the ketone strip was dark. Not the darkest color on the strip but it was the dark pinkish purple block right below it. Took a picture of the strip and posted it in the comments on the group thread. I also posted that my blood sugar was still 350, and I hadn’t eaten hardly anything except a couple handfuls of almonds and string cheese. They all kept commenting, “GO TO THE EMERGENCY ROOM!” So off we went!

The small-town hospital ER where I live took me back to a private room in the ER department. They tested my urine and blood sugar. Not in DKA. But they gave me a shot of 4 units of fast-acting insulin to start out, put me on an IV for fluids and monitored me with multiple finger sticks over the next few hours. They gave me 2 more units and then sent me home around 2 a.m., once they decided my blood sugar was within normal range and my ketones were down.

At 7 a.m. the next morning, Monday morning, I had to leave on the 90-mile drive for a routine appointment I had with the spine surgeon. I had some neck issues due to my job that would most likely result in a surgical fusion at some point. I felt like death warmed over when I woke up. I tested my blood sugar. It was 120. That’s okay. So, why did I feel so hungover??

I decided to leave earlier than necessary for my 12 p.m. spine doctor’s appointment and thought I’d take a chance on calling and possibly getting in to see the Endocrinologist that day. I felt so nauseous and I couldn’t stomach anything to eat. I drove with a bowl on the passenger side at the ready should the urge to vomit arise. I pulled over at 9 a.m., at the halfway point in my journey.

I called the Endocrinologist office. Told them who I was, that I went to the ER the night before, that I had another doctor appointment across the street from their office at noon, but I could be there as early as 10:15 or anytime after 1 p.m. in case the doctor could see me or if he got any cancellations. The receptionist put me on hold so she could talk to the doctor. She came back on and said the doctor could see me if I could be there at 10:15. “I’ll be there!”, I said. And I was back on the road.

I arrived at the Endo’s office. Still looking and feeling horrible. I was shown into his private office. Awards for Excellence in Endocrinology were everywhere. A reassuring sign! A tall, slim gentlemen in his 70s entered the room and introduced himself as Dr. Atcheson. He asked me many questions, then asked if he could do an examination in his patient room next door. I was shown there by his assistant. She tested my blood sugar at that point. It had already climbed to 210, without me having eaten anything that morning.

After his examination. He said, “Well young lady. I’d be very surprised to find that you’re Type 2. I’m 90% certain you have Type 1 diabetes. But I’m going to send you to the lab for a couple more blood tests….” “But I thought mostly babies and children got Type 1, I said. He told me that about a quarter of all Type 1’s were diagnosed after the age of 25. Many are diagnosed in their 40s and 50s.

Then he brought his assistant back in to show me how to use insulin pens. Told me to go get my blood work done, then have a sensible lunch, and give myself 3 units of fast-acting insulin and he’d be calling me frequently the next few days. I went to my next doctor appointment. Then, still not feeling up to eating, I pulled into a convenience store. There I found my staple sustenance, string cheese, and almonds. I pulled around to the back parking lot and injected my first self-administered shot of insulin. I thought to myself, “Is this really happening?” I proceeded to cry my eyes out for a few minutes. Then I was back on the highway toward home.

The next day, Dr. Atcheson called me with the additional test results. I was definitely Type 1, not Type 2. Ironically it was April Fool’s Day. I guess I can never forget my D-Day! The week and a half that followed, that 70-year-old doctor, called me four times a day. At 9.a.m., then at noon or 1 p.m., then around 5-6 p.m., then again around 9 p.m. He’d ask me what my blood sugar reading was, what I had eaten, told me how to calculate my fast-acting insulin to cover the carbohydrate in my meals, told me how much long-actings insulin to give myself at night and made adjustments for my dosages as needed. Judging from the caller ID, he always called from his office.

After a week and a half, he said he felt I had a good enough grasp on carbohydrate counting and administering my insulin and he didn’t need to continue calling. He then set me up for an appointment with a diabetic nutritionist to make sure I was proficient at carb counting. He also recommended I consider a Dexcom Continuous Glucose Monitor and an insulin pump in the future. I later found out he didn’t usually deal with diabetic patients in his practice anymore. I was switched to the other endocrinologist/diabetes specialist in the office for my continued visits. As it happened, that doctor was on vacation when I was diagnosed.

I feel very fortunate to have been diagnosed quickly and without being admitted into the hospital for a week due to DKA. It could’ve been so much worse. Life is in my mid-40s is so very different. I’m on a continuous glucose monitor and an insulin pump. Doing well. Many would say I do so well, it seems effortless. It’s not nearly as effortless as I make it appear to everyone around me.

Not an hour goes by without thinking about, treating, dosing and planning my day around diabetes. I’m approaching my three-year Diaversary this April Fool’s Day, 2017. I haven’t celebrated my last couple of Diaversaries, but think I’ll celebrate this year, and maybe even have the cake. Just a little extra insulin added to my celebration of being alive.