AIBU as a Type 1 Diabetic, to be baffled the seemingly sudden influx of non diabetics using CGM's...?

[OSAP]

If your pancreas works, you don't need one.

Blood glucose isn't exclusively influenced by the food you eat so 'personalised nutrition plans' 'metabolic trackers' etc etc are a, usually expensive, gimmick.

Nobody seemed too fussed about their 'blood glucose' when it involved finger pricks, but the Freestyle Libre now seems to have become a must have accessory for the 'worried well' who now seem to need to know what their blood sugar is doing, all while not really understanding what most of it means.

All this worried well and health paranoia nonsense used to be called hypochondria.

Another thing just worry about is people trusting the libre too much. I think those of us who wear them all the time know to take some readings with a pinch of salt (my bg jumped from 9 to 14 and back to 9 within the space of a minute earlier which obviously didn't actually happen). I get compression lows most nights and I know to trust how I feel and give it 5 minutes.

Without the support of a diabetes team telling people about compression lows and the benefit of experience knowing when to ignore a weird readin is Zoe just creating problems that aren't really there?

Yes and having to put in on 24 hours before you start it to give it time to settle.

I've not really had that too much, thankfully. It seems to loose signal a lot though, a huge amount to the point where I turned the alarm off as it was going off constantly. It was tedious in the daytime but also waking me up multiple times a night.

Oh I’ve not had signal loss. I only use my phone though. I’m awful for turning my watch alarm off during the night if it’s low and just rolling over and going back to sleep

I use it on my phone too, and lose signal all the time! I can't remember if it does as much with the reader too tbh, but the app on my phone is a lot easier to use. I am also trying to make more of an effort with logging food, insulin and exercise to try and work out a pattern to the weird high days (or low days) which is a pain in the arse on the reader.*

*it might not be called 'reader', I am too knackered to remember!

Yes especially diabetic nurses saying there is no such thing.

Yep. Great innit. Feel for your son.

My sons are not that bad but they met him.in critical care but he does get letters referring to.his type one diabetes and other times referring to.type 3c
Also we are not quite sure how it happened he's under several consultants
One said it could be that he had type one diabetes that was so severe that it induced his pancreas to start necrosis another said it was the pancreas necrosis that induced the diabetes ??
Confused ,I am!!

Lol with you there!
Are you in the the type 3c Facebook group ?

How does everyone that self funds or buys libre through Zoe or the other platforms dispose of the used applicator that contains the needle?

The advice for diabetics is to dispose of it in a sharps box and only the 5L one fits it in, it didn’t fit in a 1L one. Do they all have to buy a 5L sharps bin for 1 applicator? It’s not advised to put in general waste due to the needle.

What do you mean by 'all over the place', and what has it made you do differently and why?

So, the Zoe pack made me test my blood sugar after I ate my usual foods. It gave me tests to do to analyse what my blood sugar did when I ate certain things, all over 2 weeks.

So, eating my usual foods, often resulted in an immediate massive spike, then dip into the red. It looked like I was hiking in the Andes. There were a few days when it told me to call my healthcare practitioner. Then the tests made me see that in some cases my blood sugar was on a slow upwards curve over hours, and others that it spiked high, then dipped immediately. For the first it was after eating a high good fat item, the latter, refined white carbs. Then it showed what happens if I eat something like white bread, then exercise, or combine it with high, good fats, which changes it. It was a really good exercise to say "when you eat this, this is what your blood sugar does". It made me stop eating things that spiked.

I now eat differently. So, for example right now I am eating porridge with wheatbran, a banana, and some walnuts. From experience, I won't be hungry now till about 12pm. I no longer snack between meals because I'm not hungry, as my blood sugar is on a slow upward ascent.

The Zoe blood sugar is just one small part of it. The other tests are just as important.

I did it because I am 1.5 stone overweight, although I am very fit. I thought I knew about nutrition, but I don't. I thought I was heading towards diabetes 2, like my siblings, but I'm not apparently. I did it because I am lucky. I just had a medical and I am doing good, although overweight. I'm 54 and have just been told I'm fit and well. I am not going to take that for granted any longer. I did it because I am sick of Weightwatchers and eating lettuce.

You don't think people with T1 diabetes are special?

Those ppl that basically have to perform the function of an organ that it's impossible to live with out?

Maybe you don't understand what a pancreas does, afterall I'm sure you'd find it special If someone was performing the role of their heart manually.

Those ppl that have to take insulin to keep their blood sugars under control but know that if they buggar it up, it could kill them.

Those ppl that have to deal with 42 different things that affects blood sugars, therefore having to make sure they take a different insulin dose taking into account 42 different factors even though I'm eating the same thing as yesterday.

Those ppl that tread the line of avoiding going to low and having a fatal hypo or too high and having a fatal DKA.

You clearly think taking insulin is taking an injection and off you go. It's not. It's walking a thin tightrope, trying not to kill yourself, making 180 extra decisions a day, just to have a normal life.

And doing it every day, with no rest, for years. Every day. No end until you die. Its relentless and a big reason why there are huge links between T1 diabetes and suicide.

I'd say ppl doing the above are pretty special (and I include any one on insulin In the above regardless of disbetic type). If you spent just one week with someone on insulin, I'm sure you would too

And of course its a good idea for ppl to look after their health, but these sensors aren't just looking at what foods we may want to eat less, they are removing a little tiny bit of a burden in helping me know if I'm close to my blood sugar plummeting and potentially leaving my children without a mother. Dramatic I know, but that's the reality.

Your ignorance was showing in your comments. Please educate yourself.

It’s very possible those spikes and lows were not as dramatic as the sensor showed you. When blood glucose are changing quickly (very likely in a person with a fully functioning pancreas) the sensor can get confused, it’s also trying to predict bg and the interstitial fluid it measures lags behind bg by c15 mins. I would bet a fair amount of money that your bg was not as high or low as the sensor showed (unless you finger pricked to confirm in which case apologies). Obviously if the benefit is that you now eat better and feel more positive about your health then that can only be a good thing. Fluctuating blood glucose levels are normal. It’s an issue when it’s prolonged.

I was lucky enough to attend a research talk at Diabetes UK last year. One of the speakers had just completed a research study into adolescents with Type 1 and disordered eating.
At one point, she showed a group of parents a 24 hour Libre reading and asked them how they would have responded if that was their (T1) child. Most would have reacted to the highs and lows, as it appeared to be a very 'up and down' reading.

The reality was -that sensor graph came from a very healthy-eating, exercise-regularly, non-diabetic dietitian.
The lesson - everyone's blood glucose levels rise and fall all the time. Non-diabetic just have a fully working pancreas that is able to deal and respond to it a lot more quickly. Because you know, biology, that's exactly how bodies are meant to work. Diabetics bodies don't work like that.

Sorry non diabetics do not spike to 15 following white toast - your spike with Zoe probable went from 4 to 7 - still within normal range.

The ignorance of people who do not understand what high or low is when there little spike sits in the normal range drives me mad.

I was 4 yrs old, I did not ask for this, did nothing wrong and for people to trivialise what being a type 1 is makes by piss boil orange - for those of you who have beena diabetic long enough - will know what I mean!

@RaspberryStrawberryBlueberry Thank you for your detailed answer. I agree with @WreckTangled that it can only be a good thing that you now eat and feel better.

@NotThatWitty My diabetic nurse has told me a very similar story, and it may even have been the same talk (or perhaps notes on - it sounds very similar anyway!) I think it says a lot, and is great as it's based on BG readings as opposed to someone's opinion.

@Hellogoodbyehello4321 I think the 'think you're special' poster was simply being rude for the sake of it!

Apologies for not RTFT.

People without a diabetes diagnosis using cgms may or may not be using them sensibly.
DH and I did the Zoe trial. We're early 60s, I have pcos which is linked to insulin resistance, his DM and grandmother had T2 diabetes and he's known from doing finger prick tests over the years that he's probably prediabetic. But our HbA1c results were identical at a 'healthy' score of 37.

Well, the cgms were illuminating. The HbA1c is a sort of average behind which were very different responses to glucose, stress etc. Mine looks pretty normal, his is spikes and dips. I'm finding the Zoë food scoring quite useful for improving my diet, I'm feeling generally healthier. He's bought more cgms and is finding them and the Zoe scoring very helpful and motivating.

It sounds like you’re using Zoe due to a known potential risk of T2, which makes sense with the PCOS and history of T2.

I’d be curious to know what % of those who sign up do due to reasons like yourselves, or because they’ve bought into the general hype.

I was very very tempted to sign up for Zoe- I’m not diabetic and my recent HbA1c was normal, but I have PCOS and am quite seriously obese. I’ve also been generally unwell and fatigued for the last few years. All quite big signals that something is not right and risk factors for going on to develop T2.

Signing up to Zoe would have been out of desperation, in a system where the most you can get out of a doctor (and even the specialist weight management service) is a shrug and “have you tried eating less, maybe go to weightwatchers”. The final straw was a NHS weight management group that was supposed to be about behaviour change but was actually a half hearted tick box to qualify for bariatric surgery. (Which of course is beneficial for some, but I was there specifically because I wanted to make changes to avoid needing it!)

The Zoe questionnaire and cost put me off, as did the fact that there was no way to monitor for more than 2 weeks to see how longer term lifestyle changes affect things. I was having really significant issues though with energy crashes, massive food cravings, being low-level unwell all the time. I did suspect there was something going on with what I was eating and how my body was reacting to it, especially with the worsening PCOS.

Didn’t end up with a CGM, but did do a lot of reading around PCOS, impaired glucose tolerance, high blood insulin, ways to manage that, etc. Have ended up following the sort of diet recommended for T2 and it’s been life changing. It’s been weeks since I’ve fallen asleep mid-afternoon, and my intense, unmanageable food cravings have subsided. Have failed so many times at calorie counting etc, had always been told it’s a matter of calories in, calories out. Understanding that bodies are much more complex than that has made a big difference.

All this to say yes, CGM for people like me is unnecessary, but on a personal level I can absolutely understand the desperation of being repeatedly dismissed by doctors and the feeing of “wow, this service is taking me seriously and actually doing something tangible to help me”.

The Zoe questionnaire and cost put me off, as did the fact that there was no way to monitor for more than 2 weeks to see how longer term lifestyle changes affect things

You can though, you can buy more cgms as my DH has.

I've had a Google, another Google, and there are plenty of links that either claim the benefits of non-diabetics using CGM's or state the problems with it. Anything written by a diabetic, especially a Type 1, seems to be consistently negative!

Trying to find something mid-way, I found this which is quite thorough and an interesting read.

If you'd read this first, would you have still signed up for, or at least considered, Zoe or a similar type of programme?

I think we would have. We're both scientists with some appreciation of the current limitations ... part of the reason for Zoe is to gather and analyse evidence.

That’s exactly the sort of research that swayed me away from it. Ended up deciding that since I know that I’m managing to produce and respond to enough insulin (even if there’s a large amount being produced to compensate for PCOS-related insulin resistance), a CGM would be overkill for symptom management and would possibly just feed anxiety.

Still making lifestyle changes to (hopefully!) improve things overall, but it’s been enough to use fairly general guidelines for people with insulin resistance. (That being said, it’s an absolute minefield and there is a lot of misinformation about managing these conditions!)