Continuous Glucose Monitors

[Fox]

Does anyone know which continuous glucose monitors don't send data that is none of anyone else's business back to the manufacturer (or anyone else), please? I was diagnosed about 3 months ago. I'm expecting an updated HbA1Cfigure in the next few days, but while I know my overnight fasting glucose levels have come down from over 20mmol/L to under 10mmol/L that's still too high. Post-prandial figures exceed 11mmol/L. The only time I have seen a finger-prick result under 7 mmol/L has been after strength training, and this scares me.

I have a whole range of questions about what spikes my blood sugar, what doesn't, what exercise reduces my sugar levels and which forms of exercise increase them, and so on, but I don't want to be telling some private company information that is none of their business, and the finger-prick kit won't provide that kind of detail without a lot of bloodletting. I don't care if they won't sell it (at the moment). I value my privacy, and if I am spending that sort of money I want the data to stay on my device.

If there are several, which one of these would best meet my requirements? I'm quite happy raking through data looking for patterns, so too much data is unlikely to be a problem. On the other hand, I'm seeing people commenting on unreliable technology. I don't want to be spending money on something that doesn't even work.

Thank you.

 

[Inka]

I don’t think they send info back to the manufacturer @Fox They’d only possibly get that info if you had a faulty sensor and returned it to them for investigation.

 

[Fox]

Huh. I thought they connected to a smartphone app, unless you buy a (very expensive) independent reader? Do I have this completely wrong?

 

[Leadinglights]

By adopting a sensible testing strategy you can quite quickly establish what meals are suitable and won't need to be tested again. Testing before you eat and after 2 hours looking for an increase of no more than 2-3mmol/l or no more than 8-8.5 after 2 hours will tell you if your meal is OK. Your aim is 4-7 fasting and before meals.
The cost of CGM is quite high £40-50 for a sensor which lasts 2 weeks but you could apply for a free 2 week trial of the Libre from Abbott to get some useful info which you could act upon and decide if it was useful.

 

[Inka]

Huh. I thought they connected to a smartphone app, unless you buy a (very expensive) independent reader? Do I have this completely wrong?

I use a receiver. Even if you have a phone and use the app, I imagine you could still delete your data or anonymise it somehow. I very much doubt they look at it because it would be a load of exceptionally boring numbers!

 

[Bruce Stephens]

Huh. I thought they connected to a smartphone app, unless you buy a (very expensive) independent reader? Do I have this completely wrong?

I don't think the apps necessarily send information anywhere, beyond basic summary information. For Libre if you want to store readings you have to create an account for LibreView (a web site) which is optional. It's recommended (it offers more analysis, sharing readings with your HCP, etc.) but optional.

 

[rebrascora]

They do connect to a smart phone app, but that is to enable you to access the data, not the manufacturer. I must confess I was a little concerned about them accessing my data but was assured that they do not and have no interest in it. There is a website that links to the phone app where your data is stored and you can give your clinic staff access to to that data, via a code that you input which gives the access, but generally they don't look at it either unless you have a particular problem you need help with or to give them an idea of how you are doing come your appointment. This was a condition of getting it on prescription, but if you are self funding then you don't need to give anyone access if you don't want to. If you don't want to sign up to the website to store your data, the phone app can hold the last 3 months of data on a rolling basis, but longer than that it is replaced by new data. The only time this data is lost is if you need to delete and reinstall the app. Unfortunately that is an often suggested action if the app stops working, which occasionally happens with software updates. Personally I use the reader and find it extremely reliable but I have to download it ever 3 months to the website via my PC for my clinic to get access and also for me to look at the more comprehensive data on the website although the data on the reader is absolutely fine for everyday use and gives me daily and weekly patterns and time in range etc.

Freestyle Libre 2 do a free 14 day trial, provided that you have a diabetes diagnosis and a suitable phone to download the app to, but their list of compatible phones is pretty broad compared to their main rival Dexcom. I would suggest you apply for the free trial and see how you get on with it. I find Libres really reliable and in my opinion a lot of the issues people have are either app based or down to issues with their phone itself, but there are some people whose body chemistry seems not to work well with Libre and some of those people find Dexcom better. Skin prep is also really important because this thing has to remain in place for 10(Dexcom)-14/15 days (Libre 2 or Libre 2+) so making sure your skin is clean and dry before application is another important factor where people experience failures.

In my opinion, there is nothing lost in trying the Libre for free first and seeing how you get on with it. If you have issues, they are usually good about replacing sensors, even with the free trial although I suspect it is much less likely to be a fault with the sensor as with the application process or catching it on inanimate objects or the phone app or phone itself.

 

[SB2015]

I use the Medtronic system in HCL

My data is uploaded each night but I don’t need to let that happen if I choose not to.

I also choose to share my data with my DSN/Consultant. They don’t bother to look at it unless I ask them to, when it makes it easier discussing any questions that I have.

 

[Fox]

By adopting a sensible testing strategy you can quite quickly establish what meals are suitable and won't need to be tested again. Testing before you eat and after 2 hours looking for an increase of no more than 2-3mmol/l or no more than 8-8.5 after 2 hours will tell you if your meal is OK. Your aim is 4-7 fasting and before meals.
The cost of CGM is quite high £40-50 for a sensor which lasts 2 weeks but you could apply for a free 2 week trial of the Libre from Abbott to get some useful info which you could act upon and decide if it was useful.

Thanks everyone. I am somewhat reassured. Knowing about free trials is also useful.

Yes, this is part of the problem. To give you an idea, my initial HbA1C, in mid-April, was 105mmol/mol (I'm expecting an updated figure in the next few days). Meals containing even moderate quantities of wholegrains (wholemeal bread, wholegrain rice) are still spiking my sugar to over 11mmol/L, however much I try to buffer it with protein or fat. The only time I have seen a figure below 7 was just before eating but after 15 minutes of strength training, but I can't be doing that all day, every day. It recently hit 8mmol/L - a figure I consider low - after a 15km walk. I think I need data.

 

[helli]

Bear in mind that CGMs are designed to have most accurate readings at “normal” BG levels. If your BG is in double figures, the CGM graphs will help by showing when and what causes peaks but the numbers may be inaccurate at these higher levels.

 

[Leadinglights]

Thanks everyone. I am somewhat reassured. Knowing about free trials is also useful.

Yes, this is part of the problem. To give you an idea, my initial HbA1C, in mid-April, was 105mmol/mol (I'm expecting an updated figure in the next few days). Meals containing even moderate quantities of wholegrains (wholemeal bread, wholegrain rice) are still spiking my sugar to over 11mmol/L, however much I try to buffer it with protein or fat. The only time I have seen a figure below 7 was just before eating but after 15 minutes of strength training, but I can't be doing that all day, every day. It recently hit 8mmol/L - a figure I consider low - after a 15km walk. I think I need data.

You have started off at a high level and it is easy to be impatient to get it down but it is actually kinder on your body to reduce your level slowly as you are less likely to get issues with your eyes and nerves.
It is not an instant fix but reducing carbs which is what it sounds as if you are doing should be a good start. Portion control is as important as what you eat but wholegrain has just as many carbs as the white version and many do try to find substitutes which have less impact.
Some people use cauliflower rice as an accompaniment to chilli or curry and use non wheat pasta like edamame bean or black bean which is low carb. Potatoes are another thing to have alternatives like butternut squash, swede or celeriac.
Keeping a food diary may help you pinpoint some problem foods if you test before you eat and again after 2 hours, if the increase is more than 2-3mmol/l then it is too carb heavy.

 

[Fox]

Bear in mind that CGMs are designed to have most accurate readings at “normal” BG levels. If your BG is in double figures, the CGM graphs will help by showing when and what causes peaks but the numbers may be inaccurate at these higher levels.

Thank you. At this point I think it's most useful to know that there is a spike, and what can bring it down, probably more so than the actual magnitude of the spike itself. I am sure there are many variables, but knowing that the data on the magnitude of the spike may be inaccurate is definitely useful information.

 

[Fox]

You have started off at a high level and it is easy to be impatient to get it down but it is actually kinder on your body to reduce your level slowly as you are less likely to get issues with your eyes and nerves.
It is not an instant fix but reducing carbs which is what it sounds as if you are doing should be a good start. Portion control is as important as what you eat but wholegrain has just as many carbs as the white version and many do try to find substitutes which have less impact.
Some people use cauliflower rice as an accompaniment to chilli or curry and use non wheat pasta like edamame bean or black bean which is low carb. Potatoes are another thing to have alternatives like butternut squash, swede or celeriac.
Keeping a food diary may help you pinpoint some problem foods if you test before you eat and again after 2 hours, if the increase is more than 2-3mmol/l then it is too carb heavy.

I am trying (with, I think, much success) to eat smaller portions. Potatoes are off the menu for the foreseeable future (they are one of the things I miss - I was expecting chocolate to be more of a problem, but I find I could take it or leave it). It's easy for me to overeat rice and pasta, and I have sourced both edamame and chickpea pasta. Soya beans are a key part of my diet because of their excellent amino acid profile.

Yes, I very much plan to keep a food diary and attempt to correlate this, as well as exercise types and intensity, with my sugar levels.

I was not aware that neuropathy is more likely if you reduce your sugar levels quickly. I will prioritise reading on this to find out more. Thanks for the tip.

 

[beating_my_betes]

While I understand the inclination to avoid sending data, there are times when it's important to do so. Without such data these devices would likely be completely useless. The more population data that is sent, the more accurate these devices should hopefully become (At least that's my understanding).

I'm happy to contribute my data, though I'm not suggesting you should feel obligated to share yours.

 

[PhoebeC]

While I understand the inclination to avoid sending data, there are times when it's important to do so. Without such data these devices would likely be completely useless. The more population data that is sent, the more accurate these devices should hopefully become (At least that's my understanding).

I'm happy to contribute my data, though I'm not suggesting you should feel obligated to share yours.

I agree with you, the nhs, these providers and actually anyone else who can improve diabetes care can have my health data.
I want them to use it and make it better for us all now and to prevent diabetes/ help with a cure / treatment etc in the future.
Recently my daughter took part in one of the university screening programs for type 1. They consent and personal data information provided was really great. Only minimal data was needed for the test to be completed / get the results back etc.
But the availability to share anonymous or other data with researchers to prevent and treat these conditions makes research what it is. She’s 13 so is capable of making these decisions on her own. And she said she would rather share it and help diabetics than not.

What can someone do with information about your glucose levels anyway?
I dont understand what harm you think this can put you under?
Each to their own but if you are using the internet in anyway, have a record with the nhs or another public body, bank etc your data has been leaked so many times and is already on the black web, it really doesn’t make much difference these days
All our data is out there if you know where to look.
Best you can do is change your passwords regularly and be vigilant. But not sharing data when it adds benefit to you or others doesn’t make sense in my opinion.

Also just use the reader not your phone

 

[lordburnside]

I am wearing a Sinocare monitor at the moment - not sure its the best but you get them off Amazon. It costs £52 for 15 days so I don't have one all the time - too expensive.. You need to follow instructions well when setting it up and I read my figures off my iPhone. I think its important to understand what is good and bad foodwise and we seem to all be different.
I would advise going for a walk immediately after your main meal which cuts down the spike.
You can set the monitor to bleep when it goes over a figure mine is set from 5 to 10 so it bleeps outside this range if within 6 meteres I think. Seems to catch up on missed readings when you next get in range.
It also has a do not disturb feature which is good when you leave you phone downstairs out of range and it wants to warn you at 2am!
I would probably use one for a month and then just once every 3 months to see how you are doing. It is expensive but at least you will have better health. My problem is portion sizes, wine, chocolate and I stay off bread, potatoes, rice and pasta. Walking helps keep figures down - I don't think you need to be an athlete.

 

[helli]

What can someone do with information about your glucose levels anyway?

I have wondered this.
The area that concerns me is insurance (life insurance, travel insurance, car insurance, health insurance). I appreciate this data is not being shared with insurance companies today but is there a risk that in the future car insurers (for example) will ask to see our data and determine the cost of our policy based on how many hypos we had in the last month?
I am sure this sounds very conspiratorial today but ...

 

[lordburnside]

I have wondered this.
The area that concerns me is insurance (life insurance, travel insurance, car insurance, health insurance). I appreciate this data is not being shared with insurance companies today but is there a risk that in the future car insurers (for example) will ask to see our data and determine the cost of our policy based on how many hypos we had in the last month?
I am sure this sounds very conspiratorial today but ...

I think your health is your number one concern. If you get that right insurance will not matter.

 

[harbottle]

Thanks everyone. I am somewhat reassured. Knowing about free trials is also useful.

Yes, this is part of the problem. To give you an idea, my initial HbA1C, in mid-April, was 105mmol/mol (I'm expecting an updated figure in the next few days). Meals containing even moderate quantities of wholegrains (wholemeal bread, wholegrain rice) are still spiking my sugar to over 11mmol/L, however much I try to buffer it with protein or fat. The only time I have seen a figure below 7 was just before eating but after 15 minutes of strength training, but I can't be doing that all day, every day. It recently hit 8mmol/L - a figure I consider low - after a 15km walk. I think I need data.

I’d ditch the rice and completely. Replace it with vegetables.

Regarding the values after you walk/exercise. What happens if you try again 15 minutes later? I found when I wore Libre sensors that if my BG went low (< 4) after exercise after 10-15 minutes of resting it would creep back up to 5-6 as the body tries to bring levels back up to normal.

 

[Lucyr]

I am wearing a Sinocare monitor at the moment - not sure its the best but you get them off Amazon. It costs £52 for 15 days so I don't have one all the time - too expensive..

Honestly for that price I’d use libre instead. It’s cheaper, more accurate, and easy to get replacements if any issues