Preferences for glucose monitoring devices - research study

[porl69]

1. Can you tell me about what best helps you manage your diabetes and what parts of diabetes management you find most difficult?

2. What types of diabetes technology have you tried?

3. Are you eager to try new diabetes technology when it is newly available?


On day 2 we would like to know about your experiences of finger prick testing

4. What do you like and dislike about finger prick testing?

5. How many times do you (did you) finger prick test per day?

6. What are/were the biggest barriers to finger prick testing for you?

Edited by Mod to confirm this has been approved.

1. Freestyle Libre, finger pricker and insulin pump. Most difficult part.....knowing that you can never have a day off, or even an hour off from being type 1. It is 24/7
2. Freestyle Libre, Miaomiao (for the Libre), various glucose monitoring machines, insulin pump
3. Would always consider new technology if it helped me manage my type 1
4. Nothing at all I like about finger pricking BUT it has to be done to be able to manage my diabetes
5. I finger prick 3 times a day no, used to be 6 - 10 times a day
6. After so many thousand finger pricks, I dont really have any barriers about finger pricking....its something that has to be done!

 

[Rokaab]

1. Can you tell me about what best helps you manage your diabetes and what parts of diabetes management you find most difficult?
Currently the best thing is the libre, means I can see what is going on without stabbing myself in the finger, the most difficult thing is the complete unreliability and unpredictability of T1 - one day is never the same as the next even if you do the same thing, and you never ever get a holiday from it.

2. What types of diabetes technology have you tried?
Started with pee sticks and a big glass and metal injection thing that was probably bigger than my arm at the time.
Now its pens, libres and blood glucose monitors/sticks
Want a pump.

3. Are you eager to try new diabetes technology when it is newly available?
Yes, but even not so new tech can be difficult to get on the NHS (I'm currently trying to persuade them to let me have a pump), and cost would be the main sticking point.
Been on the libre for 2.5 years so far - its done wonders for my control (though the first two years my wallet wasn't exactly happy with me)


On day 2 we would like to know about your experiences of finger prick testing

4. What do you like and dislike about finger prick testing?
What do I like - nothing, but I have to do it as I'm T1
What do I not like - everything - it can often hurt/sting, my fingers hate it, sometimes you don't get enough blood, other times too much and you end up with blood stains on things, some times the machines/strips error, its only a Point In Time record, you cant tell anything apart from what it was at that exact moment in time, I don't like doing anything in front of people so I really don't like testing in front of other people, I can probably think of more things

5. How many times do you (did you) finger prick test per day?
Not nearly enough, now I use the libre I actually test more

6. What are/were the biggest barriers to finger prick testing for you?
My fingers don't like being stabbed!

 

[etassie]

If you only want to quote part of a post, simply select that part and a little rply button will appear.

Thanks Antje this will make it much easier - I'll hopefully get the hang if it soon

 

[etassie]

@Rokaab & @porl69 - thanks so much for giving your opinions and experiences - they're very helpful

 

[Antje77]

4. What do you like and dislike about finger prick testing?
5. How many times do you (did you) finger prick test per day?
6. What are/were the biggest barriers to finger prick testing for you?

4.
- It's more accurate than CGM/FGM and it doesn't have the time lag my sensor has. Especially after a hypo it can take my sensor up to 45 minutes or so to find out the hypo has long gone. If I believed Libre I'd overtreat every hypo.
- Curious friends can use your meter as well
5.
- When I had just started insulin I think between 12 and 16 times a day, I wanted to learn about this diabetes thing as fast as I could.
- When things got a bit settled it dropped to 8 standard tests (waking, bed, before and after eating), plus extra with hypo's, exercise, driving, unknown foods), say an average of 11 times.
- After starting Libre: The app tells me I scan around 30 times a day and I think I average about 4 fingerpricks on top of that. Occasionally it's only 1 or 2 tests, mainly on active days where I try to keep my bg between 5 and 8 to prevent hypo's, as that means far less double checking because Libre thinks I'm hypo. Occasionally way more, mainly on days where diabetes decides that it doesn't want to play fair.
6.
- Thoroughly wet wrinkly hands when sailing.
- The amount of test strips that are funded by Dutch insurance without a letter from a HCP to beg for more. I hated begging for a letter. HCP didn't understand why I needed more. Standard is about 4 strips a day. I really couldn't wrap my head around how the advice is to test before and after meals, upon waking and before bed, plus extra when needed and at the same time my practice nurse and insurance questioning me about why I needed more strips .
I expect I'll have the same problem when the Libre finally gets funded for all on insulin. The people who get it funded now only get 200 test strips a year. I imagine I'll have to start buying my test strips instead of my sensors. At least that's cheaper.
- Having to warm up the meter when it's below 8 degrees C. Waking up and having to sit on your meter for 5 minutes before you can get back to sleep is as annoying as working outside, wondering if you're going low and needing to peel off enough clothes to stick the thing where it touches your skin for minutes before testing while freezing yourself.
Current meter luckily works above 5 degrees, which is why I chose this one.

 

[liammcmorrow]

Hey, catching up on day 1 and day 2 here:

1. I'm looping now which is a game changer. Having a pump makes getting basal rates easier and blousing more convenient with the bolus calculator and simply pushing a button rather than an injection. A Dexcom means I check my blood sugar way more (probably too much) and the loop is like having someone I trust give me a correction anytime I need one
2. Pump, CGM, Anrdroid APS
3. Yes - always looking for new things but must be compatible with the loop to be worth considering.
4. I don't mind finger prick checking anymore because I don't need to do it very often but a couple of years ago I disliked the attention it might draw if I'm in public, having to stop what I'm doing, carrying around the little case and not always having it with me, and then receiving a number that you're not really sure what you can do with it.
5. 0 - using a Dexcom G6
6. Don't have any at the moment. I only do it when I really need to (rarely if I question the Dexcom or need to calibrate).

hope this helps

 

[etassie]

@Antje77 thanks for sharing your experiences of finger prick testing, some great points raised

@liammcmorrow thanks for joining the discussion group

 

[tim2000s]

1. Can you tell me about what best helps you manage your diabetes and what parts of diabetes management you find most difficult?
Having a DIY Artificial Pancreas is what best helps me manage my diabetes. The most difficult part of diabetes management is generally the variability that comes with it.

2. What types of diabetes technology have you tried?
Pretty much all of them.

3. Are you eager to try new diabetes technology when it is newly available?
Depends on how it stacks up to what I'm currently using in terms of performance and benefits.

On day 2 we would like to know about your experiences of finger prick testing

4. What do you like and dislike about finger prick testing?
I'm not sure there is anything to really like about finger prick testing. It's a prehistoric way of checking what your glucose levels are that is a must do in the absence of anything else.

5. How many times do you (did you) finger prick test per day?
Up to 15 before CGM, depending on the situation.

6. What are/were the biggest barriers to finger prick testing for you?
Being bothered to do it. It's not like it's something you can really avoid if you want to stay well and there's nothing that stops me doing it, however most of us prefer alternatives if they are available.

 

[etassie]

1. Can you tell me about what best helps you manage your diabetes and what parts of diabetes management you find most difficult?
Having a DIY Artificial Pancreas is what best helps me manage my diabetes. The most difficult part of diabetes management is generally the variability that comes with it.

2. What types of diabetes technology have you tried?
Pretty much all of them.

3. Are you eager to try new diabetes technology when it is newly available?
Depends on how it stacks up to what I'm currently using in terms of performance and benefits.

On day 2 we would like to know about your experiences of finger prick testing

4. What do you like and dislike about finger prick testing?
I'm not sure there is anything to really like about finger prick testing. It's a prehistoric way of checking what your glucose levels are that is a must do in the absence of anything else.

5. How many times do you (did you) finger prick test per day?
Up to 15 before CGM, depending on the situation.

6. What are/were the biggest barriers to finger prick testing for you?
Being bothered to do it. It's not like it's something you can really avoid if you want to stay well and there's nothing that stops me doing it, however most of us prefer alternatives if they are available.

Thanks for joining the discussion and sharing your experiences Tim

 

[etassie]

@Antje77 @Brunneria @slip @Goforit @porl69 @Rokaab @liammcmorrow @tim2000s Thanks for taking part so far The questions for day 3 have been added to my original thread - looking forward to hearing your views and opinions of flash glucose monitoring!

 

[porl69]

On day 3 we would like to know about your experiences of flash glucose monitoring (Libre). Today's questions are:

7. What do you like and dislike about flash glucose monitors?

8. Do you find (or think) the flash glucose monitor is useful for day to day diabetes management?

9. Do you (or think you might) use this information to adjust your insulin regimen?



Edited by Mod to confirm this has been approved.

7. FGM is an amazing bit of tech for diabetes. To be able to scan and see what your BGs are rather than finger pricking upteen times a day. Dislike that they can be so inaccurate
8. FGM is very useful for day to day management of diabetes due to the fact you can see trends in your BGs which can enable you to alter basal insulin and see how different foods effect your BGs
9. (See 8)

 

[Rokaab]

7. What do you like and dislike about flash glucose monitors?
Same as @porl69

8. Do you find (or think) the flash glucose monitor is useful for day to day diabetes management?
It's made an enormous different to my control, I can now scan many times a day, far far far more times than I would ever do a finger prick test, which means I can see whats actually going on and deal with it, data is everything, and this provides an abundance of it

9. Do you (or think you might) use this information to adjust your insulin regimen?
Yes I do, my HBa1c has dropped by about 10-15 since I started using it

 

[Brunneria]

7. What do you like and dislike about flash glucose monitors?

Like - the ease and comfort
Dislike - the cost (I am self funding). There is some discrepancy between my prick tests and the Freestyle Libre, but the difference is easily allowed for, or factored in by calibration using something like the miaomiao (of course the mm requires further cost)

8. Do you find (or think) the flash glucose monitor is useful for day to day diabetes management?
Yes

9. Do you (or think you might) use this information to adjust your insulin regimen?
I don't use insulin, so cannot speak from experience.

 

[slip]

What porl69 and rokaab say! I started using it about a year after it launched but after a few months started to have a skin reaction to it, accuracy fell away at the time too, probably because it hardly stayed put. Recently restarted using it after they changed the adhesive (and financial reasons) and just over half way through the first one so far so good, but could also may be just from having a break from it.

Scanning 20+ times a day and feeling a lot more confident and in control of my diabetes now.

 

[etassie]

Thanks @porl69, @Rokaab, @Brunneria and @slip all the experiences with FGM seem quite positive so far

 

[etassie]

What porl69 and rokaab say! I started using it about a year after it launched but after a few months started to have a skin reaction to it, accuracy fell away at the time too, probably because it hardly stayed put. Recently restarted using it after they changed the adhesive (and financial reasons) and just over half way through the first one so far so good, but could also may be just from having a break from it.

Scanning 20+ times a day and feeling a lot more confident and in control of my diabetes now.

Sorry to hear about the skin reaction! Glad to hear the new one isn’t causing the same reaction

 

[Rokaab]

Sorry to hear about the skin reaction! Glad to hear the new one isn’t causing the same reaction

Although possibly not part of your research but I believe a lot of people got nasty skin reactions from the libres (at least with the old adhesive - dunno about the new)

 

[Antje77]

I'll be back tomorrow with my answers, today was for hard but not diabetes related decisions.

 

[etassie]

I'll be back tomorrow with my answers, today was for hard but not diabetes related decisions.

No problem Antje - looking forward to hearing your thoughts

 

[etassie]

@Antje77 @Brunneria @slip @Goforit @porl69 @Rokaab @liammcmorrow @tim2000s
Thanks for everyone's responses The questions for day 4 have been added to my original thread - looking forward to hearing your views and opinions of continuous glucose monitoring