On Monday, the Wall Street Journal (look at me, linking to a real publication instead of a Strongbad email) had an article about doctors misdiagnosing type 1 diabetes in adults. I posted a link to the article, called "Wrong Call: The Trouble Diagnosing Diabetes," on my Facebook page and received several comments from people who went through a similar misdiagnosis. They have offered to share some of their story here, and I'm hopeful that their words will help someone else in a similar situation.
The Initial Symptoms.
Jessica, diagnosed at age 26, was already familiar with type 1 diabetes. "My diagnosis story actually begins with my husband, diagnosed with type 1 on his 21st birthday. Fortunately he was diagnosed correctly and quickly, and we were able to get him all of the help he needed." She described hitting a wall of thirst and exhaustion that set in when her son was nine months old. "These symptoms continued for about a week, and mostly only bothered me at night. During the day, although I was tired, I wasn't going to the bathroom constantly or super thirsty."
Lindsay had a similar experience, just before she turned 27. "I was just a few weeks shy of my 27th birthday. I had been sick a long time with weight loss, hair loss, you name it. I ended up with intense upper GI pain that couldn't be ignored, so my mom took me to the ER where the symptoms were investigated with an ultrasound, blood work, etc. The doctor came back to report that I had 'viral gastritis, likely due to your increased blood glucose level, which is 277. Now, because of your age, you'll be considered a type 2.' Love that one, eh?? My mom and I sat stunned; my dad had JUST been diagnosed with type 2 three weeks before."
Sarah also sang the same symptoms tune: "The morning of February 22, 2007 I woke up and with diabetes without a doubt in my mind. I had nearly every symptom there was - constant thirst, frequent urination, fatigue. I had the works and I knew it. I had a yearly physical coming up about three weeks after this and decided to wait until then to bring it up with the doctor. I realize now that this was foolish of me and that I really should have gone in right away!"
The Wrong Diagnosis.
Sarah was heading off to Europe the day after her initial type 2 diagnosis, armed with a bottle of metformin and instructions to see a doctor immediately if she felt at all ill. "When I returned from Europe and for nearly five months, I had appointments every other week to monitor the progress of my BG readings and to adjust medications that ranged from Metformin to Glypizide to Byetta. By the time my last appointment in July had come around, I'd lost 45 pounds, the Byetta had caused my boss to think I was going to vomit every time I ate (even though he knew the side effects only included nausea, not actual throwing up) and for me to feel even worse than I had the 3 months before I began taking it. I was done. If I had to be a T2 Diabetic on insulin, I would be. But I was done feeling sick; being sick. My doctor offered to write me a referral, in which I quickly took him up on - even providing him with the name of an endocrinologist during that very appointment. He gave me a prescription for insulin and a low dosage to start me off until I could get in to see the new doctor."
"We were given the name of an endocrinologist, a prescription for Amaryl and a prescription for a blood glucose meter," said Lindsay, recalling her initial diagnosis and treatment. "We were told that once my blood sugars were under control, the gastric pain would go away. I remember so clearly the nurse making sure I knew that as a diabetic my 'days wearing open toed shoes were no longer.' No real information on what diabetes was, no instruction on how to use the meter, no information at all. We left and I felt totally and completely lost. I was still so sick from the upper GI pain that I was relatively accepting of my fate because I was under the impression it would get better fast."
Jessica, however, had her husband's type 1 tools at home to make a quick check: "One day, we went to my moms for dinner ... a night I now refer to as my "Last Supper." It was my favorite meal - pot roast, mashed potatoes, loads of gravy, corn, bread, and Pepsi. Immediately after dinner, I was going to the bathroom every 15 minutes. I laughed about it, was a little concerned, but rationalized that I had drank a lot of water and Pepsi that day. My mom looked at me and said sarcastically, "You should check your blood sugar!" And it hit me. My husband wasn't with us that night, but my sister drove me home, and we pulled out the meter: HI. 'Bullshit,' I thought. Check again: HI." She was off the the ER and sent home with a prescription of metformin, after minimal lab work.
Tipping Point, and Resolution.
That endocrinologist appointment was a true tipping point for Sarah. "I remember my first [insulin] injection like it was yesterday. It wasn't much, but I remember feeling better within the hour. It was the best I'd felt in months - not only physically but emotionally, too. My fatigue and over all demeanor caused a lot of emotional angst that summer. About a week later, during our first appointment with the endocrinologist, we [my parents and I] learned that I was a type 1 diabetic. She taught us about insulin to carb ratios, how to calculate them, when to take my injections for food and when to correct a high blood glucose reading, and what the difference was between Lantus and Humolog. She told me what was happening to my body and for the first time in months I understood. I was grateful for that day."
Lindsay also found quick, but bittersweet resolution at the endo's office. "One week after visiting the ER, I met with my new endocrinologist who would be the first to tell me 'Um, no. The doctors at the ER were shockingly and sadly mistaken. Your A1c was 15.3 and you are, by every definition a classic case of a type 1, soon-to-be insulin dependent diabetic. Your lab results are more than clear in that.' I started SOBBING. I had just accepted my fate as a type 2 who would have to watch my diet, maybe exercise some more and take medication. I could handle that. But shots??? UGH - no freaking way. Looking back on it now, I'm baffled at how it was SO important to make sure I knew I shouldn't ever get pedicures or wear sandals again, but the meter? The safe blood glucose ranges? Ways to treat highs & lows? Nah. That wasn't important, I guess."
"I went to an endocrinologist. I was begging for answers, telling her my story and asked if she thought I would ever be able to stop taking insulin," said Jessica, talking about her first visit to an endo. "She said, 'You know that you have Type 1, right?' I cried, but more from relief that I finally had an answer. My latest results had also revealed a hyperthyroid problem and she began to treat me for both. I understand that I was extremely overweight and that's a red flag for a T2 diagnosis. But it is terrifying to think about what would have happened to me had my husband not had a stockpile of insulin, test strips and needles for me to use. We trust our doctors - and when we are diagnosed we do what they tell us to because we are scared, they know more than us at that point, and we want to feel better."
I only know what I know: diagnosed as a kid with type 1 diabetes, never going through the pain and heartache of a misdiagnosis. But after reading the WSJ article, and the stories from these women here, it breaks my heart to think of someone dealing with diabetes, but not finding answers, or relief. All three women were misdiagnosed with type 2 diabetes and given oral medication, when they actually had type 1 diabetes, and needed insulin.
Jessica sums it up for me with this: "I knew of only one girl with T1 when I was growing up. I've met a few more as an adult. What scares the hell out of me is the number of adult T1's I've met who are diagnosed in adulthood. It's obviously a real and growing problem, and while our healthcare professionals are trained to see the signs in childhood, they aren't seeing it in adults."