What We Learned from the Online Community This Month

Thank you to every member of the T1D Exchange Online Community for answering the Questions of the Day, inspiring others, and sharing your expertise with others. Here is what we learned from the 3 most popular questions of May 2021!

How old were you when you were first diagnosed with T1D? (May 4th)

May’s most answered Question of the Day had 437 responses from the Online Community! The most common answer was 10-19 years old, with 37% of community members selecting this option. Nearly 60% of people reported that they were diagnosed with T1D before age 20.

On the other hand, more than 7% of respondents were diagnosed with T1D in their 50s or older. A common misconception about T1D for those less familiar is that only children are diagnosed with T1D, but the reality is that many people are diagnosed as adults, and the more awareness we can raise about this, the sooner these new adult diagnoses can receive proper care.

Here are some popular quotes from the community:

  • “4” was a comment that had multiple popular comments
  • “Looks like so many get it as older kids! I just barely had turned 4.”
  • “I was in grad school and had just turned 28. I thought the symptoms must have something to do with exam and paper writing pressure as it was near end of term. Came on pretty suddenly–over a few weeks–and I had no idea what it was.”
  • “Diagnosed in 1951 when I was five years old.”
  • “I was just turning 61 when I received an accurate diagnosis, but was misdiagnosed as a T2 twenty years earlier. My two youngest children were diagnosed at 11 and 6 however. They were diagnosed at just three months and four days apart.”

On average, how many units of insulin do you typically use in a day? (May 10)

Our second most answered Question of the Day had 412 responses, with about half of the group selecting that they use between 20 and 40 units of insulin on an average day. Overall, more than one-third of respondents answered that they usually take fewer than 30 units per day.

On the other end of the spectrum, 8% of community members use more than 80 units of insulin in a day. There are many factors that play into how much insulin a person needs, so seeing this wide distribution of responses highlights the variability between individuals within the T1D community.

Here were some of the most popular comments on this question:

  • “I have consumed/injected 32 units daily for, oh, the past 60 years or so.”
  • “Mine are inhaled units… 40u of TI powder is approx. 20-25u of injectable. Anyone else here on inhaled for bolusing?”
  • “It varies by season and my activity level. Right now my average is between 26 and 29 units.”
  • “I used to take on average 39 to 45 units per day. Now being on the Keto diet as well with improved weather and more outdoor activities I’m consuming a lot less. The range of consumption is between 17 units on active days and less active 22 units.”
  • “Wow! I’m amazed. I’m near the top of the 60-70 unit category (fast and slow combined) which turns out to be a remarkably small minority, even though I maintain an A1c of 7.0 (as recommended for my age)”

If you wear an insulin pump, how often do you carry a backup method of insulin delivery when you leave your home? (I.e. supplies for a pump site change, an insulin pen, syringes, etc.) (May 5)

Our third most popular Question of the Day in May showed a wide variety of responses, but the most popular selection was “Rarely”, with almost 23% of the vote. Many of those people added in the comments that they only carry backup methods of insulin delivery when traveling.

The second most common response was “Always”, with 21% of people saying they always have a backup plan for insulin delivery with them just in case anything goes wrong.

Here are some of the top comments on this question:

  • “Always… I’ve had several occasions where I forgot a backup method, and without fail those are the times that my pod would fail, leak, or get ripped off. Learned my lesson!”
  • “I only carry extra supplies if I am going out of town. If I travel abroad, I bring about 50% more supplies than I should need for the duration of my trip, and never in my suitcase. I take them into whatever restaurant or restroom I visit.”
  • “Always have a vial and a few syringes with me. Even if my pump doesn’t fail, I use it on the regular if I run out of insulin while I’m out, or if I am running low and have a meal I’ll just take a shot for the meal so that I have enough insulin to continue running basal until I get home. Also, I can’t use Fiasp in my Tslim pump so I’ll use that to do a shot for a large meal or a high instead of my pump on occasion because Novolog just doesn’t work as fast as I need it to.”