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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 this community. Here is what we learned from the 3 most popular questions of November 2021!
From which health care provider do you receive the majority of your diabetes care?
The most answered Question of the Day in November was asked to better understand which providers people are seeing for their type 1 diabetes (T1D) care. 71% of respondents to this question reported seeing an endocrinologist, while 9% said they see a nurse practitioner.
People with T1D are responsible for all of their day-to-day T1D care decisions, but it is interesting to see that 29% of this community is seeing another health care professional for T1D-related appointments.
Here are some popular quotes from the community:
- “For the risk of sounding arrogant I’m my own caretaker. My endocrinologist helped me obtain this pump, the company assigned a DE (in a classroom environment) to help set it up. But especially when I “fell out” a year ago I readjusted my pump insulin output, then my diet, my A1c went room 7.9 to 7.1. I obtained this new 770G setup, set it up, and just now did some major troubleshooting. While we need active medical care I’ve been taught from day 1 the doc doesn’t cook for us, doesn’t exercise for us, nor isn’t there when levels go askew.
Only once had a “hand in” team. Was taught it was up to me.”
- “I agree that we have a responsibility to ourselves to learn as much as we can about managing our diabetes. We have to understand what we need to do and have the determination to make the needed lifestyle changes in diet and exercise to help achieve those ends. I’ve learned enough to be able to make changes and adjustments in my pump’s insulin delivery as well in order to do that. My endo is part of my team to help and guide me, but ultimately, the larger responsibility lies with me.”
- “But all they do is renew my insulin prescription and file the paperwork for my G6. And I have to fight for them. So basically, pushing buttons on a screen. I would probably be happier with a trained bird.”
On average, how many units of insulin do you typically use in a day?
Our second most answered Question of the Day had 502 responses, with almost half of the group selecting that they use between 20 and 40 units of insulin on an average day. Overall, nearly 40% of respondents answered that they usually take fewer than 30 units per day. On the other end of the spectrum, about 9% of community members use more than 70 units of insulin in a day.
Although a person’s weight can impact their insulin needs, there are many factors that can influence how much insulin a person needs per day. Because Questions of the Day are simple survey questions intended to capture one data point at a time, a full research study would be better suited to capture the many factors associated with insulin needs.
Here are some of the top comments on this question:
- “This is an odd question because insulin is directly proportional to one’s weight, with the coefficient to adjust to insulin resistance (or glucose resistance for those rare individuals).
See this paper: Long-term changes in insulin action and insulin secretion associated with gain, loss, regain and maintenance of body weight: https://pubmed.ncbi.nlm.nih.gov/10663214/ If the question had people input their daily insulin AND their weight, we’d get a sense of how much insulin resistance there is among the community.”
- “This question would have been a bit more informative if you had distinguished between short and long-lasting insulins for those of us who are not on a pump. I combined both and was surprised to find myself so far above the mean at 75 total units. On the other hand, I do indulge in things like fruit every breakfast while nevertheless keeping my blood sugar where I am supposed to be at my age. I assume others also combined both kinds of insulin. If not, the data won’t be very meaningful.”
- “When I switched to a pump from multiple daily injections, my units didn’t change just because I started using only Novolog instead of Lantus and Novolog. I just spread my 7 units of daily Lantus over a 24 hour time period so the daily units stayed the same. Overall I usually use less insulin now because I can use a quarter of a unit for a correction compared to using an estimated 1/2 unit on injections. Also, there is less chance of stacking insulin.”
For people who have experience with both an insulin pump and continuous glucose monitor (CGM): If you could only choose to use one of these devices, which one would you use? Share why in the comments!
Our third most answered Question of the Day in November sparked a lot of conversation around the benefits of pumps and CGMs, how important it is to have both, and that what works for one person does not work for all people.
We’ve published many studies that show positive results from our efforts to increase T1D device usage, and reduce the disparities throughout the T1D community associated with device use. Many of these studies highlight the positive health outcomes of using insulin pumps and CGMs.
As one commenter pointed out on this question, many members of our Online Community are relatively early in their journey with T1D, and they appreciate reading other perspectives and learning from people with different experiences. For this question in particular, people who are less familiar with T1D devices can see opinions from the community about which devices provide different benefits and read first hand experiences about the various tools available.
Questions of the Day are never an indication of what a person should do, or an endorsement of any sort of care decisions. Their purpose is simply to better understand the real-world experiences and opinions of people with T1D.
Here are other quotes from comments that generated some conversation on this question:
- “Data over delivery.”
- “They aren’t insinuating that you should only use one. They are just asking which one you find helps you better control your diabetes. That is how I interpret the question.”
- “I had to think hard, but I would go with just the pump. Finger sticks to check my BS is preferable to trying to adjust two kinds of insulin to cover the daily and bolus requirements. Being able to adjust my insulin to different foods, activities, etc. with a few buttons, not having to carry syringes or pens…. I pray I never have to make a decision like this!”
- “Many people do very well without a pump … Just because a pump works well for you doesn’t mean it’s the obvious choice for all.”
- “I would miss either so much! But I decided I would keep my pump. I could go back to fingersticks multiple times a day. I did this for several years and my A1C can still be normal.”
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