Continuous Glucose Monitoring

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IainB

IainB

Member
Relationship to Diabetes
Type 1
Hi,

I am new to the forum but have been with type 1 diabetes for 65 years so have a bit of experience, some good and some not so good.

I am currently considering entering the the world of CGM and am unsure of which company to go with. My diabetes is quite stable with HbA1c between 42 and 48 and I inject novarapid and lantus via novopen. My diabetes is primarily manages by myself with minimal input from my GP and I will be self funding my CGM.

I would be very grateful for any advice regarding Dexcom or FreeStyle Libre systems. I would be using the CGM system with my iPhone 13 which I believe is compatible with both system.

Many thanks,

Iain
 
Hi,
I will try again with my GP but he did say that I would need to see the diabetic team at the hosp and there was a long wait for appointment if not urgent
 
Hi and welcome.

Great to have your extensive experience on the forum. I am curious to know why you will be self funding? If you live in the UK, certainly England, then you qualify for a CGM on prescription as a Type 1 diabetic and you should just need to ask your GP to prescribe it, although many GPs seem to think that they can't and it has to be prescribed by a specialist clinic.

As regards the systems, there are actually more than just the Libre and Dexcom, but Libre do a free 14 day trial and I would recommend you utilize that option to see how it works for you, because I think Libre is absolutely wonderful an it works brilliantly for me and there are others who feel the same, but some people find it unreliable. This may partly come down to body chemistry and partly different phones and software and partly perhaps bad luck in getting a duff sensor, although I think these are much rarer than people believe. I think phone software may be the biggest issue with them. I use the Libre reader and it works perfectly but doesn't have any of the software complications. Some people are also sensitive to some of the adhesives used on different systems, so a free trial of the Libre would be a sensible start to your research into seeing what works best for you. If you are self funding, the LIbre system is also more straight forward to access because you just buy however many sensors you want and that is it. I believe with Dexcom, it is more a subscription system. This may partly be because the Dexcom also needs a transmitter (at least the G6 and Dexcom One do) and the transmitter lasts for 6 months I think (might be wrong about that) whilst the sensors last 10 days. The Dexcom has a better reputation both for reliability and customer services but I am told the interface may not be as good as Libre.

Basically, what suits one person, may be not so good for someone else so, starting with the free Libre trial would be a good way to dip your toe in the water.
 
IainB said:
Hi,
I will try again with my GP but he did say that I would need to see the diabetic team at the hosp and there was a long wait for appointment if not urgent
Click to expand...
Partha Kar has several times said that that's no longer necessary and that he will (one doctor at a time if necessary) try to persuade GPs of that. (The particular link doesn't say that, but he definitely has tweeted that multiple times.)

https://twitter.com/x/status/1624746775172063238
 
Welcome @IainB 🙂 65 years of Type 1 is impressive. As said above, you should be able to get a basic CGM on the NHS. If you do want to self-fund, you could look at the Dexcom G7 which is great and which I’ve found very accurate compared to the Libre.
 
rebrascora said:
Hi and welcome.

Great to have your extensive experience on the forum. I am curious to know why you will be self funding? If you live in the UK, certainly England, then you qualify for a CGM on prescription as a Type 1 diabetic and you should just need to ask your GP to prescribe it, although many GPs seem to think that they can't and it has to be prescribed by a specialist clinic.

As regards the systems, there are actually more than just the Libre and Dexcom, but Libre do a free 14 day trial and I would recommend you utilize that option to see how it works for you, because I think Libre is absolutely wonderful an it works brilliantly for me and there are others who feel the same, but some people find it unreliable. This may partly come down to body chemistry and partly different phones and software and partly perhaps bad luck in getting a duff sensor, although I think these are much rarer than people believe. I think phone software may be the biggest issue with them. I use the Libre reader and it works perfectly but doesn't have any of the software complications. Some people are also sensitive to some of the adhesives used on different systems, so a free trial of the Libre would be a sensible start to your research into seeing what works best for you. If you are self funding, the LIbre system is also more straight forward to access because you just buy however many sensors you want and that is it. I believe with Dexcom, it is more a subscription system. This may partly be because the Dexcom also needs a transmitter (at least the G6 and Dexcom One do) and the transmitter lasts for 6 months I think (might be wrong about that) whilst the sensors last 10 days. The Dexcom has a better reputation both for reliability and customer services but I am told the interface may not be as good as Libre.

Basically, what suits one person, may be not so good for someone else so, starting with the free Libre trial would be a good way to dip your toe in the water.
Click to expand...
Hello @IanB and welcome from myself. I'm a little older than you and very much still a Newbie to the many aspects of this D malarkey.

I'm one of those whose body chemistry seems to struggle with the intrusion of Libre 2; I still have a sensor failure rate of over 50 %. Despite that I still would not willingly go back to MDI without CGM; Libre 2, even with my high failure rate, is just so informative about BG trends (I pay less attention to the actual nos) and the alerts (alarms), which allow me to head away from lows in a timely manner. Hypos are very infrequent for me and usually occur because I've been slow to follow up on a low alert.

There are shortcomings with Libre 2 (ignoring my personal chemistry issues) and limitations with Libre 2 which will broadly apply to most of the CGMs on offer. For example CGM doesn't preclude the need to check by finger pricking when very low or high; worthwhile reading up on those as part of your background understanding (if you haven't already come across these). But those limitations are, in my opinion, relatively insignificant in relation to being without any CGM - in today's world. The tech exists and really can help. I have a 50 yr old T1 step-cousin (from his childhood) who until mid last year resolutely refused to move into the 21st century; now he has L2 he somewhat begrudgingly admits he should have done this years ago. If only to make life fairer for his family, as well as to the benefit of himself.

Your GP is out of date and if necessary can be guided to catching up!

Probably more difficult, right now, is the transition from disbanded former CCGs providing top cover to GPs and Hospital Trusts - to the newish, went live 1 July 2022, Integrated Care Systems (ICS). These seem to be struggling to do their job and have in places implemented a sort of freeze on cost expenditure, even though certain things are recommended by NICE. One example is with CGM; providing Libre 2 (or equivalent) for more T1s has a cost implication for the overall budget holder for prescriptions - the ICS. Hence somewhat stupid and muddled attempts to constrain GPs. This also has affected the introduction of no-extra cost alternatives to Libre 2, including Dexcom One. I personally have been given a Dexcom One starter pack by my Endocrinologist, recognising that it might resolve my Libre 2 problems. But, despite his reassurances that all problems within my ICS will be resolved by 1 March, my Pharmacist can still not provide follow on sensors for Dexcom One; they exist within the NHS Formulary but forbidden by our ICS - so the Pharmacy suppliers have no contract in place with Dexcom for provision of this medical supply. This is a teething problem and I'm sure will get resolved - eventually!

So I suggest focus on a trial with Libre 2. Many of us fit it and wait a full 24 hrs before activating it, allowing one's body to accept this 'invasion'. Then explore what it might provide for you. I have a Libre 2 reader, as well as a compatible smart phone and I prefer to activate the sensor with the Reader first, then use my smart phone and the LibreLink app to scan the sensor, second. This has the disadvantage of having 2 devices in play: the reader and my phone, with the alarms from Libre 2 only available on the Reader. But with the big advantage for me that the Reader is more forgiving in receiving scans and I can take it into the garden without having to fumble for my phone, open the app and scan - when an alert occurs. This method works for me.

The Dexcom system, if self-funding, means purchasing a 90 day package off one x 90day transmitter and ten x 10day sensors. Once the transmitter is activated the clock is ticking. I understand it might be possible to buy a trial pack of one or two 10 day sensors only from Dexcom, plus a transmitter; I haven't explored that permutation.

Apologies for this lengthy stroll around CGM and some of the NHS aspects. The Dexcom G7 and G6 actually precede Dexcom One; which has been manufactured and released to specifically challenge the domination of the UK market by Libre 2. G7 is more expensive and I understand a better all round package for various reasons. Currently it is only available from the NHS for a relatively tiny proportion of T1s, who are severely struggling to manage their D - so from your opening it's probably only an option for you by self-funding.

Good luck.
 
Proud to be erratic said:
Hello @IanB and welcome from myself. I'm a little older than you and very much still a Newbie to the many aspects of this D malarkey.

I'm one of those whose body chemistry seems to struggle with the intrusion of Libre 2; I still have a sensor failure rate of over 50 %. Despite that I still would not willingly go back to MDI without CGM; Libre 2, even with my high failure rate, is just so informative about BG trends (I pay less attention to the actual nos) and the alerts (alarms), which allow me to head away from lows in a timely manner. Hypos are very infrequent for me and usually occur because I've been slow to follow up on a low alert.

There are shortcomings with Libre 2 (ignoring my personal chemistry issues) and limitations with Libre 2 which will broadly apply to most of the CGMs on offer. For example CGM doesn't preclude the need to check by finger pricking when very low or high; worthwhile reading up on those as part of your background understanding (if you haven't already come across these). But those limitations are, in my opinion, relatively insignificant in relation to being without any CGM - in today's world. The tech exists and really can help. I have a 50 yr old T1 step-cousin (from his childhood) who until mid last year resolutely refused to move into the 21st century; now he has L2 he somewhat begrudgingly admits he should have done this years ago. If only to make life fairer for his family, as well as to the benefit of himself.

Your GP is out of date and if necessary can be guided to catching up!

Probably more difficult, right now, is the transition from disbanded former CCGs providing top cover to GPs and Hospital Trusts - to the newish, went live 1 July 2022, Integrated Care Systems (ICS). These seem to be struggling to do their job and have in places implemented a sort of freeze on cost expenditure, even though certain things are recommended by NICE. One example is with CGM; providing Libre 2 (or equivalent) for more T1s has a cost implication for the overall budget holder for prescriptions - the ICS. Hence somewhat stupid and muddled attempts to constrain GPs. This also has affected the introduction of no-extra cost alternatives to Libre 2, including Dexcom One. I personally have been given a Dexcom One starter pack by my Endocrinologist, recognising that it might resolve my Libre 2 problems. But, despite his reassurances that all problems within my ICS will be resolved by 1 March, my Pharmacist can still not provide follow on sensors for Dexcom One; they exist within the NHS Formulary but forbidden by our ICS - so the Pharmacy suppliers have no contract in place with Dexcom for provision of this medical supply. This is a teething problem and I'm sure will get resolved - eventually!

So I suggest focus on a trial with Libre 2. Many of us fit it and wait a full 24 hrs before activating it, allowing one's body to accept this 'invasion'. Then explore what it might provide for you. I have a Libre 2 reader, as well as a compatible smart phone and I prefer to activate the sensor with the Reader first, then use my smart phone and the LibreLink app to scan the sensor, second. This has the disadvantage of having 2 devices in play: the reader and my phone, with the alarms from Libre 2 only available on the Reader. But with the big advantage for me that the Reader is more forgiving in receiving scans and I can take it into the garden without having to fumble for my phone, open the app and scan - when an alert occurs. This method works for me.

The Dexcom system, if self-funding, means purchasing a 90 day package off one x 90day transmitter and ten x 10day sensors. Once the transmitter is activated the clock is ticking. I understand it might be possible to buy a trial pack of one or two 10 day sensors only from Dexcom, plus a transmitter; I haven't explored that permutation.

Apologies for this lengthy stroll around CGM and some of the NHS aspects. The Dexcom G7 and G6 actually precede Dexcom One; which has been manufactured and released to specifically challenge the domination of the UK market by Libre 2. G7 is more expensive and I understand a better all round package for various reasons. Currently it is only available from the NHS for a relatively tiny proportion of T1s, who are severely struggling to manage their D - so from your opening it's probably only an option for you by self-funding.

Good luck.
Click to expand...
This is a cracking and informative post. And timely for me. I've been on Libre 2 and have found it fine. I've been self funding as I've been waiting for the prescriptions to come through. Libre 2 has been absolutely fine for me, I don't notice it, it hasn't failed. But just today I'm considering giving dexcom 6 or 7 a try. Reason being that 1) for some reason my libre deleted it's data in the phone. I spoke to the manufacturer and I can manually download from the website but that's a bit irritating. And more importantly 2) I've found that a number of readings in the 6s on the libre are showing 4.0 or so on the finger prick.
So I'll see what happens next with Dex
Well done to anyone if they've bothered reading this far
 
UPDATE
I have now tried the Libre2 for 14 days and have decided to return to the old method of finger pricking.
I found the Libre2 quite inaccurate at high or low readings and when my BS is high I give small insulin bolus to correct and when low give small amounts of dextrose/cabs to correct (try not to cause a high) To do this I found the Libre2 complyely hopeless.
I did have a few other issues and contacted Abbot, their customer service was terrible and I ended up sorting out the issues myself.
I will now wait a while and monitor the development of CGM and hope Apple‘s new watch sensor comes in the next year or so. For those who haven’t heard they have developed a sensor that measures BS via a tiny laser placed in a watch. I believe the results are accurate and they are working on size to fit it into a watch, and yes I am a big Apple fan.
 
@IainB all CGMs are designed with accuracy for "normal" numbers so will be inaccurate in double figures.
If you can reduce your numbers, you should have a better experience.
 
IainB said:
I found the Libre2 quite inaccurate at high or low readings
Click to expand...
I agree, but test strips may also be less accurate outside the "normal" range, so I'm not quite sure how we'd know how far out CGMs are.

I just treat too high as too high and too low as too low (presuming I feel that it's real in both cases). It's an extra reason for trying to stay within range as much as possible.
 
Toooldfortype1 said:
This is a cracking and informative post. And timely for me. I've been on Libre 2 and have found it fine. I've been self funding as I've been waiting for the prescriptions to come through. Libre 2 has been absolutely fine for me, I don't notice it, it hasn't failed. But just today I'm considering giving dexcom 6 or 7 a try. Reason being that 1) for some reason my libre deleted it's data in the phone. I spoke to the manufacturer and I can manually download from the website but that's a bit irritating. And more importantly 2) I've found that a number of readings in the 6s on the libre are showing 4.0 or so on the finger prick.
So I'll see what happens next with Dex
Well done to anyone if they've bothered reading this far
Click to expand...
Just thought I'd come back on this one as I ended up trialing the dexcom g7 and the libre 2 in at the same time.
Big drum roll...
Essentially the charts and glucose moves were near identical in shape which is reasuring
Both of them worked absolutely fine throughout in terms of not losing signal, not falling off, not irritating me while sleeping and so on
The big difference for me has been the ability to recalibrate to finger pricks with the Dexcom. That has meant that the 6s that the machines were showing which were really more like 4s, I could amend.
The dexcom app I find worse but overall I'll stick with Dexcom
 
IainB said:
Hi,
I will try again with my GP but he did say that I would need to see the diabetic team at the hosp and there was a long wait for appointment if not urgent
Click to expand...
Quote the clinical guidance from Nice to your GP and they will add to your prescription... as they are bound by the guidelines to provide the level of care stated in there. 1.6.10 - England only Screenshot_20230416_102009_Chrome.jpg
 
Last edited:
@,unexpecteddiagnosis you have quilted the NICe guidelines for England only. They vary in other parts of the UK.
Plus, unfortunately, they are only guidelines. They ate not binding. But are a jolly good thing to have to hand if your GP disagrees.
 
helli said:
@,unexpecteddiagnosis you have quilted the NICe guidelines for England only. They vary in other parts of the UK.
Plus, unfortunately, they are only guidelines. They ate not binding. But are a jolly good thing to have to hand if your GP disagrees.
Click to expand...
Although not legally binding a care practitioner has to explain why they go against them when something goes wrong... so most would follow.

Very much like within health and safety where you don't have to follow an ACOP legally but it will be used against if you decide not to follow it
 
Not sure if this is relevant to Ian B original question but concerns applying for access to CGM sensors funded by NHS, I first enquired via GP practice nurse in Feb 2020 ( covid probably to blame for delay) finally got a response in January 2022 invited to apply for virtual libre start, which entailed taking part in a couple of live webcasts, completing Libre Freestyle Academy , basically 9 online modules you had to complete, then a six month trial wearing sensors ( over 50 % of the sensors failed in one form or other, nightmare dealing with ABBOTT customer service personnel, language barrier mostly ) . I achieved the required target figure I had agreed would be my ongoing Hba1c figure of 50 m/mols, previous averages being 60- 65. I have been using sensors for 7 months now and find them an aid to managing my condition but still rely to some degree on finger pricking ( a condition requested by practice nurse not to rely completely on sensors )
I have had one six monthly check up with practice nurse recently , where I asked if she wanted to review the data I had downloaded from the reader to Libre View , surprised she didn't have access to it, asked if I would need to see one of the GP's, she said a bit difficult at the moment only got two on site, previous number was eight, ( sickness ,early retirement, left for pastures new) She said I'll book you in with diabetic specialist nurse team ,that was in November 2022 still not heard from them yet. Does these seem like par for the course at the moment . I have been under the care of my GP practice for T1 care since 1997 diagnosed in 1994.
 
@Wotisname bear in mind the guidelines changed last year. So the delay in 2022 may be due to the old guidelines being far more restrictive than now rather than covid.
I am not surprised your practice nurse had little interest in reviewing your Libre data. I think the DSN at my surgery is unable to spell Type 1 and would expect less from the general practice nurse. Thankfully, my diabetes care is via a dedicated diabetes clinic where they understand Type 1 and the associated technology such as pumps.
 
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