Lessons Learned: Michelle’s Unusual DKA Experience
Getting off easy
My name is Michelle Lord and I have been living with Type 1 diabetes for over 16 years. I was diagnosed at age 12, with a blood sugar of only 180 mg/dL10 mmol/L. Needless to say, I was diagnosed at an early stage in the progression of my Type 1 diabetes and did not experience diabetic ketoacidosis (DKA). Following my diagnosis, I managed to live with Type 1 diabetes for 15 years while completely avoiding DKA. At this point in my life, I was under the impression that I would never be in DKA since I was well-controlled, and I was taught that DKA can only occur when your blood sugar is extremely high for an extended period of time.
This was proven to be wrong in January 2018, when I went into DKA for the first time with blood sugars that were not “extremely high.” It is important for me to share what happened since it is not a typical DKA story. My experience taught me that DKA can happen to any person with Type 1 diabetes at any time.
The unusual case
The evening of January 11th 2018, I went to bed with a stable blood sugar of 113 mg/dL6.3 mmol/L. I woke up a few hours later and noticed that my blood sugar had gone up to 180 mg/dL10.0 mmol/L, but was still stable. I thought nothing of this, gave myself a quick correction on my insulin pump, and went back to sleep. I woke up 2 hours later feeling slightly off – I felt nauseous and overheated. I checked my blood sugar, and saw that it had crept up to 234 mg/dL13.0 mmol/L, yet it was stable. This was slightly concerning, as my previous correction clearly wasn’t too effective. It still did not occur to me to check for ketones, since my blood sugar was not extremely high, so I gave another correction on my insulin pump and went back to sleep.
I woke up shortly after feeling very nauseous and ended up throwing up. At this point my blood sugar was still stable at 234 mg/dL13.0 mmol/L, which I confirmed with my glucometer. I was very nauseous, sweating, had blurry vision, and quickly recognized the symptoms of having ketones. I thought to myself, “There is no way I can have ketones with a blood sugar of 13! I must have the flu or something.” At the time, I only had urine strips for testing ketones, where the strip changes color depending on the concentration of ketones in the urine. I took a strip out to test my urine, and to my surprise, the strip came back at the darkest color! This was the highest concentration of ketones the strip was capable of measuring. I remember being so confused as to how I could have so many ketones with my current blood sugar. Regardless of my blood sugar, it was clear I was very sick and needed to get into the hospital as soon as possible.
Know the signs
My husband rushed me to the ER where I was immediately put on IV fluids and had many blood tests done. On top of feeling extremely ill, I had a vein burst when having an IV catheter inserted, which caused me to pass out (yes, I’m a fainter). This was one of the more dramatic hospital visits I’ve had. The tests came back that I was in “mild DKA,” or DKA caught in the early stages. I was on IV fluids for seven hours, which helped bring my ketones down to a safe level to go home. Once I got home, the first thing I did was change my insulin pump site, as that was the suspected culprit of my DKA. Sure enough, when I removed my site, blood came gushing out! I suspect that my site was hitting something, preventing me from getting the full amount of insulin delivered from my pump. Why my blood sugar was only 13, I will never know! However, the doctor in the emergency room told me that you do not need high blood sugar to be in DKA, and that there are many other reasons, such as infections.
This whole experience was a wakeup call for me. I saw firsthand that DKA can develop within a matter of hours, and how dangerous it can be! It is so important to know the warning signs so that you can test your ketones and get help if needed. The day after being in the hospital, I went out and bought blood ketone test strips from the pharmacy so that I could have more precise measurement values, and I also filmed a video about my experience for my YouTube subscribers. I felt it was my duty to spread the word and let other people living with Type 1 diabetes know that DKA does not always occur with high blood sugar. If my story can help at least one person with diabetes, then it is worth sharing!
This piece is part of Beyond Type 1’s resources on DKA + managing ketones – find the complete collection of resources here.