We always learn something new from the T1D Exchange Online Community’s Question of the Day responses. As we wrapped up 2022, the community shared interesting insights on living with T1D.  

 Here’s what we learned from the three most popular questions of December 2022:  

 

 

  1. Do you have hypoglycemia unawareness?

Our top Question of the Day for this month had over 500 responses. “Hypoglycemia unawareness” is when you don’t feel the symptoms of low blood sugars — it can develop in anyone but is most common in those who’ve lived with T1D for many decades or in those who’ve experienced hypoglycemia very frequently. 

The most popular answer, with 40% of the responses, was “No, I almost always feel low blood sugar symptoms when I am low.” On the contrary, 19% of respondents said “Yes, I very rarely feel low blood sugar symptoms when I am low,” which can be extremely scary. Many comments expressed gratitude for continuous glucose monitors (CGM). 

Some insightful comments included:  

  • “Sometimes I can keep on trucking down to the 40s, self-treat, and keep going on about my day. Other times I feel terrible, super lethargic, and irritable, and it stops me in my tracks.” 
  • “Since I’ve had T1D since 1960, I’ve lost the ability to feel hypoglycemia. I totally rely on my Dexcom to keep me in the range.” 
  • “Yes, both hypo and hyperglycemia unawareness. If I’ve dropped to the low 40s, my vision becomes impaired, and I’ll see the light-yellow amorphous blobs in my central vision. Fortunately, that rarely happens now because of CGM alerts.” 
  • “After 72 years, yes, my eyesight changes, and I see a sort of yellow shape when I’m around 55 mg/dL or lower. It’s handy that it happens in case the Dexcom is not quite there yet.” 

*Comments have been edited slightly for clarity as needed. 

2. Were you experiencing DKA (diabetes-related ketoacidosis) when you were diagnosed with T1D?

Many of our community members have been living with diabetes for a very long time and don’t remember the entire story of their diagnosis. When you live with diabetes for so many years, the details of your diagnosis can become a distant memory. Our second most popular question of the month had a pretty good split between respondents choosing “yes”, “no”, or “I don’t know” about experiencing DKA during their diagnosis.  

Popular quotes from the community included:    

  • “No, I was fully conscious and not feeling sick at all. I have no idea what my blood glucose level was when my pediatrician took a urine test at his office and told my mother to take me to the hospital. It was 1955 and I was 8. Once at the hospital I remember never ending urine tests, not many blood tests.” 
  • “I know I was spilling ketones, but I don’t know if I was in DKA. I had just barely turned 4 so the details are fuzzy.” 
  • “I was diagnosed back in the mid-1970’s — told only of my high blood glucose levels, nothing else. So, I have no idea if I was experiencing ketoacidosis or not.” 
  • “Yes, I was in DKA. I spent three days in the hospital.”  

*Comments have been edited slightly for clarity as needed. 

 

  1. How many times in 2022 did you get a comprehensive eye exam (including dilation with eye drops or retinal imaging) with an ophthalmologist or optometrist?

Annual eye exams are so important if you have diabetes because the earliest stages of retinopathy have no symptoms — regardless of your A1c! You need the exam to catch the earliest stages and get treatment. The vast majority of our respondents chose in the responses that they have had at least 1 or more comprehensive eye exam in 2022.  

Here is how our community responded:  

  • “I go every 6 months, so twice a year; unless a problem arises.” 
  • “Once, for an annual exam with a retina specialist I’ve been seeing for over a decade. I was diagnosed with diabetic retinopathy in 1982.” 
  • “Priorities have been shifted since Covid began, and then dealing with my 100-year-old father this past year. I hope to return to my typical rotation of check-ups soon.” 
  • “Annual eye exams are critical. When I had my exam 3 1/2 years ago, the ophthalmologist told me my optic nerve was swollen and had me get an MRI that day. I had a brain tumor that was larger than a tennis ball. It turned out to be benign. I hadn’t had any symptoms, headache, vertigo, etc. That ophthalmologist is our favorite doctor, she saved my life.” 
  • “Once a year is all I need currently, no retinopathy. I always use an ophthalmologist for the dilation and retinal exam.” 

*Comments have been edited slightly for clarity as needed. 

Thank you to every member of the T1D Exchange Online Community for sharing your experiences. If you are not already a member of our Online Community, join us by clicking the “Join” button in your upper right corner!