On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (1 = the least satisfied, 5 = the most satisfied)
Home > LC Polls > On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (1 = the least satisfied, 5 = the most satisfied)
Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
I do my own care. There are no endocrinologist in Alaska that insurance covers. My PCP just writes whatever prescriptions I ask her to for whatever insulin and pump and CGM that I have decided I want to use. The other issue I run into is I have to figure out how to use the device I choose on my own because the pump companies never have anyone who trains how to use the pump in Alaska.
Wow. I am impressed. I am not sure I could handle it all on my own. When my endo, who was wonderful, retired, I asked my PCP if he wanted to take over. He said no way, he wasn’t qualified for that. It’s great that yours will do it.
I picked 3. The Medtronic G3 is a big drawback (-1). Needing 3 or 4 calibrations a day is annoying. Medtronic is coming out with a G4 that should need less cals. We’ll see. The 770G pump is better than the 630G but cant handle my roller coster BGs (-1). I am holding out for the 780G which can add small bolis doses in addition to the basil doses. Come on FDA. I know you have had a lot on your plate but we need this too!
That system has always had its sensor as the Achilles heal in my opinion. You think they’d of figured it out by now. I tried 670g years ago and was done w/ it after 3 months…
I’m right there with you, TEH! Waiting for the 780G to see if it’s worth staying with Medtronic, or going with another manufacturer. My 670 pump’s rails, the part of the pump that holds the belt clips, have cracked and broken off so I’m wearing it in a holster, or waist belt, both of which are suboptimal. I’m hoping the approval to release the 780 comes very soon!
Just enthralled with New Insulin tech! Dexcom w/ Degludec and technosphere insulin! Off my pump for almost 3 years with better control than ever.
What really changed was my ability to tighten my glycemic variability. Avg glucose of around 135… and SD is 35mg/dl!
Liquid RAA, I was only able to get to an SD around 50mg/dl.
Ironic as I moved to a fixed dose with Inhaled vs. a variable .5u dosing options.
People need to try this stuff to really understand it!
43 yrs with T1D and really doing well with diabetes for the length of time I have had it. I read everything and see an endo always. My primary encourages it. My endo tells me I am a great example of an educated person.
Getting the compliment of …an educated person… is rare indeed! Sometimes I think the better we are at managing things, the more the Endo’s feel obligated to disrespect us.
I have had 3 Moderna vaccines and the last one was 3 days ago. I have all of the side effects which seem to be gone today but blood sugars have been very high and hard to knock down. Has any other T1Ds experienced high blood sugars after the live covid vaccine? Moderna is the strongest and the 3rd shot was 1/2 dose but still filled with side effects. Please respond with your comments. Thanks
My blood sugar went up a little after my third Pfizer shot, but my worst side effects were a bad headache and nausea. If I have to get a fourth, I think I will try Moderna. Hope your blood sugars come down soon.
Connie, I had the Moderna 50% booster ~10 days ago (had the J&J in April). I didn’t notice my sugars being wonky at all. The injection site was like a bug bite until yesterday, but my shoulder never hurt enough to wake me up when I rolled over at night. I have had a transient headache almost every day since, and developed a slight fever for a few days 48hrs after the injection. But I didn’t notice my sugars being affected by either vaccine (and I would have, since my sugars usually start acting up before I even know I’m sick).
Connie, I got Fizer (sp?) ASAP. Also got booster. To prevent side effects (like aches) of any vaccine, take an aspirin or Tylenol 30’ before shot. CDC recommends this.
Rick, please let me know when that day arrives. I’m still looking for stem cell or genetics to overcome my self-destructive beta-cell destroying immune response. ( Same problem cancer.)
If the insulin I injected actually absorbed properly I would be the happiest T1 D person on the planet. But that’s my major problem, my sugars keep going up into the 200 and 300 range before I can force the insulin to absorb into my body and cover the sugars. My routine and the amount of insulin I take is spot on, its my body not doing what its supposed to do causing all my issues
It’s DEFINITELY better than having to boil a glass syringe and needle prior to each use … and sharpening needles with a stone, and testing urine sugar levels, rather than blood glucose levels, but there’s still a way to go. 😉
Every time something goes wrong I remember when insulin was first used (from a dog?), prior to that this was also called a wasting disease. They had to limit what a person ate to prevent the dramatic glucose rise, starving the patient. Than I read of boiling the syringes and sharpening the needles which were huge. And here I whimpered about the small needles to the insulin pen (when I was on MDI).
I self adjusted the pump, stopped using the sensor after the first year due to the costs of supplies (and hit the floor a year ago, laying there 6 hours as my 16 year old Pomeranian and new cat panicked).
Thankfully when MEDTRONIC offered the newest 770G a few months ago I explained the financial concerns and declined: they offered a program.
After moving I now see an older physician who generally farms out the TYPE1 diabetics to the nearest hospital, while was terrified of the pump he finally have me back the literature and is now the one providing all my care.
I’m happy to be diagnosed and living in 2021 was a diabetic. Imagine peeing on a strip to see how much sugar was passing through the kidneys, and the nightmares of injections. No idea how many improvements are coming but I feel so lucky for what have have now, and thankful for what everyone else went through make my life better.
It could always be better. I always believe for a cure. Until then, I hope for technology that reduces the work of being a person with diabetes and spending less on diabetes. It’s taken so much over the years.
4- “Overall “care routine.” If it means my care routine as an ideal or sounds good on paper, then yes, satisfied it can produce healthy outcome. If it means satisfied with my flawed human ability to carry out a good plan and system with best tools available, then it drops to a 4. Or the desire for an easier, more perfect care routine…
I am appreciative having a doable care routine. Here’s the ‘but’. Pump/Sensor costs and continual need to order supplies. Math and science gymnastics to keep insulin in its sweet spot. Insurance concerns. Finding Endo who advocates. Add illness, fatigue, daily schedules, continual interruptions to the best laid plan to have a daily care routine…
I chose a 4. I am happy with my care routine.
The things I would improve would be being able to understand the variables affecting my insulin delivery/ sensitivity possibly with the time spent with different classes/ doctors/ nutritionists… getting to know biochemistry better in general. I have never had a Endo have the time to look at my diet/activity/seizure diary.
As soon as I recognized no rndo or primary care dr or staff care or ate even up to date on latest technology I joined T1 support groups. All went virtual now- so I can connect w T1s in Germany( hub of most T1s in world thus most research done) and others such as T1 Sisters and TCOYD and Canada IConnectT1s. I learned things drs NEVER told me. Got books T1 researchers wrote about THINK LIKE A PANCREAS. And T1 Athletes and AgingWithT1. Go to online lecture series with T1 researchers that discuss alpha cell transplants to reverse T1 and easy things like stop eating carbs 6 hours b4 bedtime- gives even and balanced sleep and wake up BG! I just use my drs to refill my Rxs now😀. But my retina specialist must be someone I trust and can work as a team. My Afrezza rep and Dexcom rep are both younger T1s and get great advice from their real T1 experiences too.
I do my own care. There are no endocrinologist in Alaska that insurance covers. My PCP just writes whatever prescriptions I ask her to for whatever insulin and pump and CGM that I have decided I want to use. The other issue I run into is I have to figure out how to use the device I choose on my own because the pump companies never have anyone who trains how to use the pump in Alaska.
Wow. I am impressed. I am not sure I could handle it all on my own. When my endo, who was wonderful, retired, I asked my PCP if he wanted to take over. He said no way, he wasn’t qualified for that. It’s great that yours will do it.
Tandem ICQ – Best Numbers since 1963 and 0 Hypos
I picked 3. The Medtronic G3 is a big drawback (-1). Needing 3 or 4 calibrations a day is annoying. Medtronic is coming out with a G4 that should need less cals. We’ll see. The 770G pump is better than the 630G but cant handle my roller coster BGs (-1). I am holding out for the 780G which can add small bolis doses in addition to the basil doses. Come on FDA. I know you have had a lot on your plate but we need this too!
That system has always had its sensor as the Achilles heal in my opinion. You think they’d of figured it out by now. I tried 670g years ago and was done w/ it after 3 months…
I’m right there with you, TEH! Waiting for the 780G to see if it’s worth staying with Medtronic, or going with another manufacturer. My 670 pump’s rails, the part of the pump that holds the belt clips, have cracked and broken off so I’m wearing it in a holster, or waist belt, both of which are suboptimal. I’m hoping the approval to release the 780 comes very soon!
Just enthralled with New Insulin tech! Dexcom w/ Degludec and technosphere insulin! Off my pump for almost 3 years with better control than ever.
What really changed was my ability to tighten my glycemic variability. Avg glucose of around 135… and SD is 35mg/dl!
Liquid RAA, I was only able to get to an SD around 50mg/dl.
Ironic as I moved to a fixed dose with Inhaled vs. a variable .5u dosing options.
People need to try this stuff to really understand it!
Huh! Interesting!
43 yrs with T1D and really doing well with diabetes for the length of time I have had it. I read everything and see an endo always. My primary encourages it. My endo tells me I am a great example of an educated person.
Getting the compliment of …an educated person… is rare indeed! Sometimes I think the better we are at managing things, the more the Endo’s feel obligated to disrespect us.
Most of my care is me. Have good endocrinologist, ophthalmologist and primary care, very smart and know how to talk to me.
I have had 3 Moderna vaccines and the last one was 3 days ago. I have all of the side effects which seem to be gone today but blood sugars have been very high and hard to knock down. Has any other T1Ds experienced high blood sugars after the live covid vaccine? Moderna is the strongest and the 3rd shot was 1/2 dose but still filled with side effects. Please respond with your comments. Thanks
My blood sugar went up a little after my third Pfizer shot, but my worst side effects were a bad headache and nausea. If I have to get a fourth, I think I will try Moderna. Hope your blood sugars come down soon.
Connie, I had the Moderna 50% booster ~10 days ago (had the J&J in April). I didn’t notice my sugars being wonky at all. The injection site was like a bug bite until yesterday, but my shoulder never hurt enough to wake me up when I rolled over at night. I have had a transient headache almost every day since, and developed a slight fever for a few days 48hrs after the injection. But I didn’t notice my sugars being affected by either vaccine (and I would have, since my sugars usually start acting up before I even know I’m sick).
Connie, I got Fizer (sp?) ASAP. Also got booster. To prevent side effects (like aches) of any vaccine, take an aspirin or Tylenol 30’ before shot. CDC recommends this.
I’m not sure what the question is asking.
The 770g is working very well, I look forward to the day when pumps are not needed.
Rick, please let me know when that day arrives. I’m still looking for stem cell or genetics to overcome my self-destructive beta-cell destroying immune response. ( Same problem cancer.)
4, but wish I could use my preferred insulin in my preferred pump. Otherwise decent.
If the insulin I injected actually absorbed properly I would be the happiest T1 D person on the planet. But that’s my major problem, my sugars keep going up into the 200 and 300 range before I can force the insulin to absorb into my body and cover the sugars. My routine and the amount of insulin I take is spot on, its my body not doing what its supposed to do causing all my issues
Not really sure what you’re asking here.
It’s DEFINITELY better than having to boil a glass syringe and needle prior to each use … and sharpening needles with a stone, and testing urine sugar levels, rather than blood glucose levels, but there’s still a way to go. 😉
Every time something goes wrong I remember when insulin was first used (from a dog?), prior to that this was also called a wasting disease. They had to limit what a person ate to prevent the dramatic glucose rise, starving the patient. Than I read of boiling the syringes and sharpening the needles which were huge. And here I whimpered about the small needles to the insulin pen (when I was on MDI).
I self adjusted the pump, stopped using the sensor after the first year due to the costs of supplies (and hit the floor a year ago, laying there 6 hours as my 16 year old Pomeranian and new cat panicked).
Thankfully when MEDTRONIC offered the newest 770G a few months ago I explained the financial concerns and declined: they offered a program.
After moving I now see an older physician who generally farms out the TYPE1 diabetics to the nearest hospital, while was terrified of the pump he finally have me back the literature and is now the one providing all my care.
I’m happy to be diagnosed and living in 2021 was a diabetic. Imagine peeing on a strip to see how much sugar was passing through the kidneys, and the nightmares of injections. No idea how many improvements are coming but I feel so lucky for what have have now, and thankful for what everyone else went through make my life better.
It could always be better. I always believe for a cure. Until then, I hope for technology that reduces the work of being a person with diabetes and spending less on diabetes. It’s taken so much over the years.
Given the state of technology and knowledge I am very satisfied with my regimen. Could it be better you betcha
4- “Overall “care routine.” If it means my care routine as an ideal or sounds good on paper, then yes, satisfied it can produce healthy outcome. If it means satisfied with my flawed human ability to carry out a good plan and system with best tools available, then it drops to a 4. Or the desire for an easier, more perfect care routine…
I am appreciative having a doable care routine. Here’s the ‘but’. Pump/Sensor costs and continual need to order supplies. Math and science gymnastics to keep insulin in its sweet spot. Insurance concerns. Finding Endo who advocates. Add illness, fatigue, daily schedules, continual interruptions to the best laid plan to have a daily care routine…
4. Technology and people are improving regularly. The American medical system? Not so much so. (^◡^ ) ( ◡́.◡̀)
I chose a 4. I am happy with my care routine.
The things I would improve would be being able to understand the variables affecting my insulin delivery/ sensitivity possibly with the time spent with different classes/ doctors/ nutritionists… getting to know biochemistry better in general. I have never had a Endo have the time to look at my diet/activity/seizure diary.
I really don’t like using a pump, but so far the doctors I’ve seen since starting on one have refused to let me go back on MDI.
As soon as I recognized no rndo or primary care dr or staff care or ate even up to date on latest technology I joined T1 support groups. All went virtual now- so I can connect w T1s in Germany( hub of most T1s in world thus most research done) and others such as T1 Sisters and TCOYD and Canada IConnectT1s. I learned things drs NEVER told me. Got books T1 researchers wrote about THINK LIKE A PANCREAS. And T1 Athletes and AgingWithT1. Go to online lecture series with T1 researchers that discuss alpha cell transplants to reverse T1 and easy things like stop eating carbs 6 hours b4 bedtime- gives even and balanced sleep and wake up BG! I just use my drs to refill my Rxs now😀. But my retina specialist must be someone I trust and can work as a team. My Afrezza rep and Dexcom rep are both younger T1s and get great advice from their real T1 experiences too.