Control issues

[MData3000]

Hi all, new user to the forum, I’ve been T1 since 1987, no major issues up until recently where I have experienced a LOT of issues

Why I joined the forum is since COVID work from home I’ve had issues with BG control and a couple of other health issues (night sweats, dehydration), approached my DRC clinic at local NHS hospital, and was asked to start using the Libre 2 sensors which I did…

This seemed to highlight a few night hypos so insulin regime was changed quite drastically however this hasn’t helped my symptoms, got bloods done for other potential causes from GP and came back all ok…

Since then the DRC recommendations have actually made my long term BG worse, HBa1 creeping up, way more high BG, corrective doses not working or working too well sometimes, the advice I was offered was only reactive i.e. you should have taken less, you should have taken more, rather than looking to see if any other underlying causes existed and what I should do, apart from reduce background to prevent these “hypos”

Convinced that there was something amiss I started to log the libre readings vs manual BG checks (finger pricks)… I was stunned by how inaccurate the libre is… I’m a data scientist so know how to interpret stats and trends… sometimes the libre is out by double (reads of 20+ mmol, BG manual often 10-13mmol at same time… same for the lows tbh… 2.3 on the libre and manual checks are around 4.1 which was fine under previous guidelines, I’m aware this can vary between NHS trusts too I have some data if anyone is interested.

Other issues I’ve found with the Libre include temperature fluctuation causing inaccurate reads too, if I shower or feel hot the sensor reads high and shows instability on the trend… it’s not fit for purpose IMO

I’d like to join to support others and get some support myself as this situation is unreal… regime changes based on inaccurate reads have caused me huge problems, also the fact that our NHS invests in these rather expensive but ineffective means of measuring BG is beyond me… they aren’t cheap either!!!

Has anyone else similar experience of the Libre? Is the Dexcom any more reliable?

I’ve also been awaiting an appointment with dietitian since May 23, and haven’t actually seen my consultant since before lockdown…

All round fed up of the apparent lack of NHS support and knowledge from the little support I’ve had, I’ve no confidence in the Libre either…

Sorry for the rant but I feel I need to connect with others to get some advice from those who experience this in a daily basis…

 

[helli]

Welcome to the forum. Sorry to read about the struggles you ahve been experiencing.
Unfortunately, most of these are known limitations of the physics used with CGMs.
Sadly, most people find out about these limitations when they start using them rather than being warned beforehand.
The good news is that once you understand these limitations, CGMs become a great tol to help us understand our BG between finger pricks (yes, you will still need to do some finger pricks).
This thread provides details of these limitations: https://forum.diabetes.org.uk/boards/threads/cgm-limitations-and-precautions.108188/

I hope you can get to the bottom of your night sweats and dehydration problems. Is it possible they have nothing to do with diabetes? Sadly, diabetes does not "protect" us from other conditions.

 

[MData3000]

Thanks for your response I’ll check out the link and see what I can learn… I’d gone to the GP for the sweats etc in order to rule anything else out but the tests didn’t flag any other conditions at that time…

I’ve arranged some follow up appointments for next week so will get a greater insight once other things have been ruled out…

Massively disappointed with my DRC team for not explaining the limitations as you have, also that they have altered my regime for the worse based upon the ‘data’ from the libre…

I’ve been well controlled long term so hopefully the past 6 months hasn’t had too much detriment on my health (as far as I’m aware)…

Thanks for the advice, hoping I can regain control and improve how I feel

I’ll keep you posted…

 

[MData3000]

Thanks for your response I’ll check out the link and see what I can learn… I’d gone to the GP for the sweats etc in order to rule anything else out but the tests didn’t flag any other conditions at that time…

I’ve arranged some follow up appointments for next week so will get a greater insight once other things have been ruled out…

Massively disappointed with my DRC team for not explaining the limitations as you have, also that they have altered my regime for the worse based upon the ‘data’ from the libre…

I’ve been well controlled long term so hopefully the past 6 months hasn’t had too much detriment on my health (as far as I’m aware)…

Thanks for the advice, hoping I can regain control and improve how I feel

I’ll keep you posted…

OMG I’m not even through the first paragraph… that explains a lot

 

[Bruce Stephens]

Has anyone else similar experience of the Libre? Is the Dexcom any more reliable?

I think it varies between people. Some find one works much better than the other but either can be better. (I note Dexcom One now allows calibration, which G6 always had but One didn't.)

 

[Tdm]

I find dexcom g6 a lot more reliable, but for others libre works better

 

[rebrascora]

Hi and welcome.

So pleased you have found the forum, but a bit of a shame you didn't find it sooner. The power of shared experience is immense and that very comprehensive list of limitations of CGMs composed by @helli came about after several years of many people here sharing their thoughts and experiences with Libre on the forum. I do not mean to take anything away from @helli in saying this as her analytical mind has brought all those thoughts and experiences together to form a very useful and understandable list and she contributed a lot to my own understanding and confirmed things that I suspected from my own experience. Most DSNs and consultants would simply not be aware of these limitations because they don't use Libre and live with diabetes themselves and also they can be quite subtle issues which, unless you test regularly, you just wouldn't know about. Sharing information and testing thoughts and theories helps us to get a much clearer picture.

Anyway, just wanted to welcome you and hope you find a way to get on with Libre because it really has been a game changer for many of us, but if you still don't, then perhaps a Dexcom will suit your body chemistry better.
I absolutely love Libre and it works brilliantly for me, within those limitations listed and I maybe only have to test 4 or 5 times a fortnight with a finger prick and indeed some of those checks are just to get a feel for how well it is working rather than necessary checks.

Can I ask which insulins you use and when was the last time you did a basal test? To my mind, getting not just your basal dose right, but also using a basal insulin which suits your body and lifestyle is key to good diabetes management. For some people that is a very long acting insulin like Tresiba or Toujeo and for others of us it is a shorter acting twice daily basal like Levemir which can be adjusted on a daily basis if necessary to match our body's needs and lifestyle and exercise regimes etc. I absolutely love my Levemir for it's flexibility which enables me to take a large dose in the morning when I need it and just a very small dose at night when I don't, but others love Tresiba for it's stability.

I hope you get as much from this forum as I have over the past few years and that it's experience and "hive wisdom" will help you to find a way to regain good management of your levels again soon.

 

[JohnS]

Every now and then I get a Libre sensor that is wildly inaccurate when compared to the equivalent blood reading taken the recommended 10 - 15 minutes before. (I have had 3 in the past 4 months) In each case I have reported this back to Abbott and they have sent me a replacement sensor.

 

[rebrascora]

PS. Hope you can find a cause (and treatment) for your night sweats etc. It isn't clear from your profile if you are male or female but certainly a change in hormone levels can have those sort of effects. Do you know which tests your GP has done?

 

[rebrascora]

Every now and then I get a Libre sensor that is wildly inaccurate when compared to the equivalent blood reading taken the recommended 10 - 15 minutes before. (I have had 3 in the past 4 months) In each case I have reported this back to Abbott and they have sent me a replacement sensor.

Libre is equipped with an algorithm which extrapolates the previous readings in order to predict the current reading, so giving it a 10-15 minute delay is not necessary or even helpful because if your levels are changing fast or direction for instance after eating food or hypo treatment, if your levels were dropping before food, the Libre will continue to predict levels dropping for about 20 mins before it actually catches on that the direction of travel has changed and adjust itself back onto course. For instance, if my levels are 3.8 and dropping fast and I eat a couple of jelly babies, 15 mins later a finger prick might show my levels are back up to 4.8 but Libre will often show that I am down into the 2s and still dropping, but then another 15 mins later, it will show my levels coming back up. Many people would be tempted to eat more carbs if they don't double check it and then end up far too high afterwards and then the roller coaster of highs and lows that follows.
Understanding how it works really is key to getting the most out of it. That said, it doesn't suit everyone's body chemistry and if you are still having problems despite understanding those limitations then you should try one of the other options, to see if it suits you better.

 

[everydayupsanddowns]

Welcome to the forum @MData3000

You’ve a few more years on the diabetes clock than me, but I wonder how your diabetes care started out, and what has been added over the years. It certainly seems like you’ve had precious little support over the past few years.

The late 80s and early 90s seem to have been a moment of transition between care styles to me.

I was introduced to fixed doses with matching ‘exchanges’ where a set carb limit was given for each main meal and I ate consistently up to that limit.

At the same time I think there was an idea that people couldn’t really “be bothered” ?! with that, and some clinics just said people should eat normally, and take their regular insulin. How on earth that was supposed to work when normal could be a salad or a plate of pasta escapes me entirely!

Then a little later on, rudimentary MDI was polished with the idea of insulin:carbohydrate ratios, insulin sensitivity factors, and bolus wizards that adjusted doses to aim for a mid-range target.

Plus courses like DAFNE and BERTIE added meat to the bones with strategies for alcohol, exercise, illness etc.

I’m not sure how your own self-management fits with that timeline, but when I first started comparing notes with others online over a decade ago, I realised I had missed quite a lot of education since diagnosis, presumably because HCPs thought I knew it all already?

Another significant discovery for me was the concept of basal testing - a systematic way of checking basal is doing its job, but no more.

This link explains the process:
https://www.mysugr.com/en/blog/basal-rate-testing/

Apologies if all this is teaching you to suck eggs!

 

[JohnS]

Libre is equipped with an algorithm which extrapolates the previous readings in order to predict the current reading, so giving it a 10-15 minute delay is not necessary or even helpful because if your levels are changing fast or direction for instance after eating food or hypo treatment, if your levels were dropping before food, the Libre will continue to predict levels dropping for about 20 mins before it actually catches on that the direction of travel has changed and adjust itself back onto course. For instance, if my levels are 3.8 and dropping fast and I eat a couple of jelly babies, 15 mins later a finger prick might show my levels are back up to 4.8 but Libre will often show that I am down into the 2s and still dropping, but then another 15 mins later, it will show my levels coming back up. Many people would be tempted to eat more carbs if they don't double check it and then end up far too high afterwards and then the roller coaster of highs and lows that follows.
Understanding how it works really is key to getting the most out of it. That said, it doesn't suit everyone's body chemistry and if you are still having problems despite understanding those limitations then you should try one of the other options, to see if it suits you better.

I agree with every you say @rebrascora but when I say that my levels according to my Libre were wildly out, they were disturbingly wrong! My “time in range” had been running in the 70% range for a long time. This dropped to about 35%. After a week of fitting a new sensor it is now rising and is back at 71%.

 

[helli]

I agree with every you say @rebrascora but when I say that my levels according to my Libre were wildly out, they were disturbingly wrong! My “time in range” had been running in the 70% range for a long time. This dropped to about 35%. After a week of fitting a new sensor it is now rising and is back at 71%.

I find my BG goes through cycles of being mostly in range and then a week of being completely out.
When this happens to me, I do more finger pricking because I don't trust my CGM even though I have seen it many times before. Maybe it's hormones or weather or work stress or ... the wrong socks.
And sometimes it is a dodgy sensor. But very rarely.

 

[rebrascora]

I too find my diabetes goes in cycles of relatively smooth sailing and periods of being erratic and frustrating when I am having to battle with it. Usually a couple of weeks of good straightforward management, sometimes a couple of months if I am really lucky, then it starts to go astray and a few days, sometimes a week or more of struggle and then back to smooth sailing again. I just do all the right things and otherwise just keep my head down and ride it out, in the knowledge that it will come right again soon. In over 3 years, I can only think of one sensor that was a bit too far out and needed replacing, but maybe I have just been really lucky and it does seem to suit my body chemistry well. I am happy to bolus off the readings, do corrections and treat hypos without double checking. The odd check I do with a finger prick is when my levels are nice and stable and mid range, so 5s or 6s and steady with only a decimal place of two variation, for at least half an hour and then I will double check with a finger prick to give me an idea of how the Libre readings tally with BG. Usually it is within a few decimal places and usually Libre is lower. I consistently average about 90% TIR over the last 3 years. When levels are erratic I have to work harder at it to maintain that and I am very proactive both with corrections and adjusting my basal doses, to keep in range during those periods and I think nothing of stacking corrections, even just half an hour apart to maintain that level of management. My low carb diet and the speed of Fiasp and being able to track my levels with Libre, allows me to do this without risk.... plus I always have Jbs to hand if I do miscalculate/guess it wrong. If I wasn't so proactive, my TIR would drop significantly though. I log every stacked correction I do on my Libre, so I can check back as to how much active insulin I have on board and make a very basic assessment of how much more I might need if my levels continue to rise. It is very intuitive but it works really well for me.