Carl_Oxford
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- MODY
New to this forum, but MODY for 25years or so. Primarily looking for help with Libre CGM, but also interested in weight management and generally living better with diabetes.
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Inka
Well-Known Member
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- Type 1
Welcome @Carl_Oxford 🙂 How’s your MODY treated? What help do you need with the Libre? Do ask anything you want. No question is too trivial or ‘silly’.
Carl_Oxford
New Member
- Relationship to Diabetes
- MODY
Hi @Inka
I currently use 50units Levemir at night and three lots of Novorapid during the day (adjusted based on food intake and expected exercise).
I used a finger prick test up until earlier this year when my GP surgery prescribed the Libre. The finger prick sensor wouldn't work if it was too cold, but a few minutes next to my body soon warmed it up and it worked fine. Since using the Libre I've had numerous sensor error messages, or "Glucose reading not available", and today my phone app told me that the sensor was not working at all and to replace it. Luckily I had another one available, but now I will be without one when I go away at the end of the week (for a week or more). I have filled in the form on Abbott's web site so hopefully should get a replacement soon. Attached is a screenshot of the app from this morning.
Just wondered how many other people are having similar issues? Is there an alternative CGM available on prescription? Is it any better? Would it just be easier to go back to using finger prick tests?
I currently use 50units Levemir at night and three lots of Novorapid during the day (adjusted based on food intake and expected exercise).
I used a finger prick test up until earlier this year when my GP surgery prescribed the Libre. The finger prick sensor wouldn't work if it was too cold, but a few minutes next to my body soon warmed it up and it worked fine. Since using the Libre I've had numerous sensor error messages, or "Glucose reading not available", and today my phone app told me that the sensor was not working at all and to replace it. Luckily I had another one available, but now I will be without one when I go away at the end of the week (for a week or more). I have filled in the form on Abbott's web site so hopefully should get a replacement soon. Attached is a screenshot of the app from this morning.
Just wondered how many other people are having similar issues? Is there an alternative CGM available on prescription? Is it any better? Would it just be easier to go back to using finger prick tests?
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Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
There’s the Dexcom One @Carl_Oxford You could also see if using the Libre reader works better rather than your phone.
rebrascora
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Hi and welcome.
Sorry to hear you are experiencing difficulties with Libre. Some people have been experiencing a long delay in getting a replacement via the online reporting system and in your circumstances with going away on holiday soon and having no spare, I would ring their customer services and explain the urgency of needing the replacement before you go away and see if they can expedite your replacement sensor.
Libre is a great bit of kit but you do need to understand it's limitations. If your levels are changing very rapidly then it will usually give you the try again in 10 mins message and sometimes this will continue, particularly if levels continue to change rapidly. I am not sure if there is a point where after so many of these messages, the sensor automatically shuts down, but keeping your levels as stable as possible may well help to alleviate some of these problems. Not an easy feat I know, but that graph is showing some pretty extreme levels.... not sure if they are genuine or part of the sensor failure or typical of your readings?
Have you been offered an education course like DAFNE (Dose Adjustment For Normal Eating) or a similar local equivalent, to help you use your insulins to best effect. For instance Levemir was designed to be used as a split dose basal insulin because it doesn't have a flat profile and doesn't last the full 24 hours. Now, it may be that 50 units all in one go suits your body, but that is unlikely and so, you may be building your diabetes management on very uneven foundations. Have you ever done a basal test? This is where you skip a meal in rotation over a period of days to see what your levels do in the absence of food and meal time insulin. This shows you if your Levemir is holding you reasonably level during those fasting periods as it is supposed to do if the dose is correctly balanced for your body.
Looking at that graph your levels dropped from 18mmols to 12mmols from 3am to 6am which is a drop of 6mmols in the space of 3 hours and suggests that you have too much basal in your system during that time, unless you injected some fast acting insulin as a correction at 3am?
Anyway, not meaning to pick holes in your diabetes management at all or criticize in any way because without the right knowledge you can't know how best to manage things and we were all like that at first, but from that one graph, it appears that an intensive education course and some help in understanding your basal needs and learning to adjust your doses, might help you to get your levels a bit more balanced and stable and your Libre will probably functions better then..... Or you might just be one of the unlucky ones who got a duff sensor or two.
PS. Totally sympathize with BG meter not working in the cold. Even at this time of year mine has to sit in my bra for a few minutes before it will function and during the winter it is a total pain when I am working outside, particularly when hypo and needing a reading and not feeling great and having to wait for it to warm up. 🙄 Out of curiosity, is it the Caresens Duo BG meter that you have which doesn't like the cold? That is mine and it is significantly worse than any others I have had but my clinic prescribes it for the combined blood and ketone reading function, so I seem to be stuck with it.
Sorry to hear you are experiencing difficulties with Libre. Some people have been experiencing a long delay in getting a replacement via the online reporting system and in your circumstances with going away on holiday soon and having no spare, I would ring their customer services and explain the urgency of needing the replacement before you go away and see if they can expedite your replacement sensor.
Libre is a great bit of kit but you do need to understand it's limitations. If your levels are changing very rapidly then it will usually give you the try again in 10 mins message and sometimes this will continue, particularly if levels continue to change rapidly. I am not sure if there is a point where after so many of these messages, the sensor automatically shuts down, but keeping your levels as stable as possible may well help to alleviate some of these problems. Not an easy feat I know, but that graph is showing some pretty extreme levels.... not sure if they are genuine or part of the sensor failure or typical of your readings?
Have you been offered an education course like DAFNE (Dose Adjustment For Normal Eating) or a similar local equivalent, to help you use your insulins to best effect. For instance Levemir was designed to be used as a split dose basal insulin because it doesn't have a flat profile and doesn't last the full 24 hours. Now, it may be that 50 units all in one go suits your body, but that is unlikely and so, you may be building your diabetes management on very uneven foundations. Have you ever done a basal test? This is where you skip a meal in rotation over a period of days to see what your levels do in the absence of food and meal time insulin. This shows you if your Levemir is holding you reasonably level during those fasting periods as it is supposed to do if the dose is correctly balanced for your body.
Looking at that graph your levels dropped from 18mmols to 12mmols from 3am to 6am which is a drop of 6mmols in the space of 3 hours and suggests that you have too much basal in your system during that time, unless you injected some fast acting insulin as a correction at 3am?
Anyway, not meaning to pick holes in your diabetes management at all or criticize in any way because without the right knowledge you can't know how best to manage things and we were all like that at first, but from that one graph, it appears that an intensive education course and some help in understanding your basal needs and learning to adjust your doses, might help you to get your levels a bit more balanced and stable and your Libre will probably functions better then..... Or you might just be one of the unlucky ones who got a duff sensor or two.
PS. Totally sympathize with BG meter not working in the cold. Even at this time of year mine has to sit in my bra for a few minutes before it will function and during the winter it is a total pain when I am working outside, particularly when hypo and needing a reading and not feeling great and having to wait for it to warm up. 🙄 Out of curiosity, is it the Caresens Duo BG meter that you have which doesn't like the cold? That is mine and it is significantly worse than any others I have had but my clinic prescribes it for the combined blood and ketone reading function, so I seem to be stuck with it.
Val1133
Well-Known Member
- Relationship to Diabetes
- Type 1
I had to replace my sensor a few weeks ago for the same reason. I did order a replacement from Abbott over the phone, but it wouldn't arrive until the following Wednesday. I had none spare and it wasn't time for me to order my new supply yet and it was Friday afternoon, so I felt I was stuck. I contacted my pharmacist and she 'lent' me one until my prescription would come through.
My prescription came through on the Monday and I offered one back to the pharmacist, but she wouldn't take it 🙂
It would be worth contacting your pharmacist to see if they can help you out.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
I agree with @rebrascora that a basal test would be sensible. Were you given any reason why you should take your Levemir dose all in one rather than splitting it morning and evening?
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Or - was there no discussion about how long it might last you still being of assistance to your BG?
And - who was it that actually pronounced your having MODY and is medically in charge of treating it - GP or endocrinologist/diabetes consultant at a hospital?
And - who was it that actually pronounced your having MODY and is medically in charge of treating it - GP or endocrinologist/diabetes consultant at a hospital?
- Relationship to Diabetes
- Type 1
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Welcome to the forum @Carl_Oxford
Sorry to hear you’ve had a glitchy Libre. The only ones I had like that were where the filament didn‘t quite get seated in the correct part of the skin, and the signal produced was a bit intermittent and difficult for the software to interpret. The steep drop in levels followed by a leap to high does look like a sensor error to me.
It can happen with any brand. Perhaps try a few more Libre before deciding to explore other possibilities?
And I find it’s always wise to have a fingerstick meter available for times when sensor glucose looms a bit iffy, or doesn’t match how I’m feeling.
Sorry to hear you’ve had a glitchy Libre. The only ones I had like that were where the filament didn‘t quite get seated in the correct part of the skin, and the signal produced was a bit intermittent and difficult for the software to interpret. The steep drop in levels followed by a leap to high does look like a sensor error to me.
It can happen with any brand. Perhaps try a few more Libre before deciding to explore other possibilities?
And I find it’s always wise to have a fingerstick meter available for times when sensor glucose looms a bit iffy, or doesn’t match how I’m feeling.
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