Freestyle Libre 2 advice for newbie - significant difference in mmo/L

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SarahDM

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Relationship to Diabetes
Type 2
Hi everyone,

Quick timeline and intro to me 🙂

- Pre Diabetic Nov 2022 (HbA1c 47)
- Diabetic type 2 May 2023 (HbA1c 104)
- 8-12ml of Lantus, x4 Metform a day and 14mg RYBELSUS (semaglutide)
- July HbA1c 70
- HbA1c last month was 29, so taken off Lantus and given Freestyle Libre 2 as of last week

So I'm on day 8 of my first ever Freestyle Libre 2. And was feeling pretty confident that it was accurate. It was going up as expected, dipping as expected.

However, allllll day yesterday my levels were between 2.9 mmo/L and 3.9. I had orange juice, it didn't go up. I had a small bite of birthday cake, didn't go up. So I decided to start finger prick testing and it told me I was actually at 5.7 mmo/L, not the 3.2 it said on my Freestyle.

Again, this morning. Its saying 3,3 on the Freestyle, 5.7 on the finger prick.

Now the night before this. silly me, noticed the adhesive was coming away so put some hyperfix tape OVER the hole - which I learnt you're not meant to do so took that off over 24 hours ago. However my numbers are still at least 2 mmo/L different from eachother.

So my thoughts are....
- have I damaged the sensor on the Freestyle with the tape (which hasnt been on for over 24 hours), and therefore its not going to be accurate?
-or are the numbers just generally THAT different from each other?

As someone who's desperately trying to rectify the years of abuse that made me diabetic by significantly cutting out sugar and carbs, it's really frustrating that my Freestyle is shouting at me 'QUICK! SUGAR! YOU'RE HAVING A HYPO!', when actually my levels are absolutely fine as far as the finger prick tests are concerned. Especially when they've just taken me off Lantus because my numbers have improved so drastically I don't want to go backwards.

I have only been give x2 Freestyle sensors so far, and I know how expensive these are for the NHS and so dont want to put on a new one if this is just how they work. Or if it is actually damaged/broken/misreading.


Thanks so much for any advice.
 
What is likely to have happened is that the adhesive has come loose and the sensor has lifted a bit, perhaps pulled by clothing or caught on something else. The filament which samples your interstitial fluid to get the readings can then get kinked as the sensor is taped back down and then starts to give persistent low readings. It is essentially goosed in that situation, so you need to contact Abbott Laboratories customer services either via online reporting or telephone number which is on the Libre box or the website. They will likely want comparison finger prick results for 3 different occasions showing levels significantly different..... usually more than 2mmols different and they should replace the sensor. They may want the old sensor back so don't bin it until you have been in contact with them.

Taping over the hole will not cause this. The hole is there to allow the skin to breath as well as primarily to enable the needle in the applicator to carry the filament into your arm.

Having a good skin prep and application process and good placement on your arm is key to good adhesion and it takes time to perfect this, but you also learn to be more careful when undressing and washing and negotiating doorways and reaching into cupboards etc.
I bought an elasticated arm strap which has a 3D printed watch face that fits over the libre and gives it more security. I often find that my clothing pings the strap but keeps my Libre safe. It also provides a visual reminder for when I am having a good scrub in the shower as I had been known to forget and scrub the sensor off in the shower before getting the arm strap 2 years ago. I got mine off ebay.
 
rebrascora said:
What is likely to have happened is that the adhesive has come loose and the sensor has lifted a bit, perhaps pulled by clothing or caught on something else. The filament which samples your interstitial fluid to get the readings can then get kinked as the sensor is taped back down and then starts to give persistent low readings. It is essentially goosed in that situation, so you need to contact Abbott Laboratories customer services either via online reporting or telephone number which is on the Libre box or the website. They will likely want comparison finger prick results for 3 different occasions showing levels significantly different..... usually more than 2mmols different and they should replace the sensor. They may want the old sensor back so don't bin it until you have been in contact with them.

Taping over the hole will not cause this. The hole is there to allow the skin to breath as well as primarily to enable the needle in the applicator to carry the filament into your arm.

Having a good skin prep and application process and good placement on your arm is key to good adhesion and it takes time to perfect this, but you also learn to be more careful when undressing and washing and negotiating doorways and reaching into cupboards etc.
I bought an elasticated arm strap which has a 3D printed watch face that fits over the libre and gives it more security. I often find that my clothing pings the strap but keeps my Libre safe. It also provides a visual reminder for when I am having a good scrub in the shower as I had been known to forget and scrub the sensor off in the shower before getting the arm strap 2 years ago. I got mine off ebay.
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Thanks so much Barbara! I just spoke to the customer services team and they're sending me a new one.

I did actually order some ridiculously priced covers from Amazon yesterday so hope they'll do the job to keep it stuck down. I think I've learnt the hard way with bra straps and door frames the last few days!
 
We all did that and it still happens occasionally but mostly you learn to be more wary of catching them and you alter placement to make it less likely etc. I lost a few in the early days to various inanimate objects. It's funny because you never realised how finely you judged doorways until you have a 2mm disc on your arm and somehow catch it!

Really interested that your GP surgery are prescribing Libre when you have come off insulin. Is that a special program they are running do you know to help get people off insulin that don't need it?
 
Not sure if its a special program, not as far as I know...

My GP are 'GP at Hand', rather than a local surgery if that makes any difference (it's NHS but is part of a private healthcare company). I have a specialist Diabetic Nurse there who I have appointments with over the phone once a month. I did speak to a different Diabetic Nurse last week however, who gave me the Libre.
I have to say, compared to what I've heard from others, my care has been above and beyond. I feel very lucky!
 
Have you any idea why you shot from being prediabetic to a whopping 104mmol/mol in 6 months, if that was accompanied by loss of weight without much effort it would send up a red flag for Type 1.
 
Leadinglights said:
Have you any idea why you shot from being prediabetic to a whopping 104mmol/mol in 6 months, if that was accompanied by loss of weight without much effort it would send up a red flag for Type 1.
Click to expand...
long story short I had a very emotionally stressful time after my mum became critically unwell in January (thankfully she is not any more!). But mentally and physically I wasn’t looking after myself for 6 months. I’m told stress can cause type 2. I am also quite overweight and always have been.

I lost approx 2kg while I was in DKA for 3 weeks (showing symptoms I had no idea were connected) which is what kicked everything off in May.

I’ve had 3 blood tests for them to confirm if it’s type 1 or 2 but each time my results have gone missing so actually never been confirmed! Given my weight and stress they assume it’s type 2…
 
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