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Freestyle Libre

  • 1.  Freestyle Libre

    Posted 16-05-2020 16:21
    ​I would like some feedback from people who use the Freestyle Libre to monitor their BGL. I have recently started to use the Freestyle Libre. The first sensor I placed worked well but when I put on the second sensor it wouldn't give me a result for about 6 hours after which it worked fine but after only 5 days my reader told me my sensor was defective and needed replacing. Has anyone had similar problems? At $92.00 for each sensor I don't expect them to fail and have to replace them.

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    John G
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  • 2.  RE: Freestyle Libre

    Posted 16-05-2020 18:58
    Hi John
    I use the Freestyle Libre Flash glucose monitor - the "white button" that attaches to the back of the upper arm. I have been using it on and off for a couple of years - mostly if I was travelling or out of my normal routine. Mainly because of the cost - $90 and they only last 14 days. In March they were added to the subsidised list of diabetes technology aids. If you meet the government's criteria - incl being Type 1 and having a concession card etc - they are free and obtained through orders you place with participating pharmacies. The NDSS site has the information on eligibility and the form to be completed for approval for the subsidised scheme. This has to be signed by your GP (or your endo I assume , if you have one). The NDSS site has info on how it all works. It is NOT done directly through Abbott. You have to be an NDSS member to get the subsidy.

    Since March I have been using a sensor all the time. There are a few issues, but it appears that pumps, more sophisticated CGMs, etc all seem to have their issues. Your problems may be because the sensor has not been applied properly. Your CDE will be able to assist with this and making sure you can manage it yourself. My CDEs do lots of hands on stuff for people using flash monitors, pumps, etc. I dont know about endos. One of the critical things is keeping well hydrated as the sensor "feeler" sits in the interstitial fluid and if you are not well hydrated it is less accurate. Because it sits in the interstitial fluid it is not as accurate as blood and this is why you have to do finger pricks to get blood readings before calculating carbs and insulin dosing for those carbs. My CDE also inputs the insulin units/carb ratio and BGL range in the reader and we tweed this as necessary every 3 months or so. I can change the range myself and if necessary she could tell me how to adjust the ratio if I cant get in, or I can just adjust the dose myself at the time.

    I love being able to just drop the reader (also does blood and ketone tests) in my pocket and go. The other good thing is that it shows whether levels are going up, down or are stable. The reader is about 10 minutes behind blood readings so it can be higher if going up or lower if going down. If not hydrated it can be less accurate. 

    It takes 1 hour from application and registering the sensor on the reader for it to start recording  readings. I find that the first 6 to 12 hours readings are often pretty rubbish and, on me, they can be  stupidly low (2.8 when on blood I was 6.2)... now I start my sensor in the morning and it is usually pretty OK by the time I go to bed. My advice would be to not start a new sensor at night. Obviously, you check with a blood test if you think it is wrong.  

    All in all I am pretty happy with it. A pump does not appeal to me at this point in time. I have only had to use multiple injections for a bit over 5 years so i guess I dont have injection fatigue yet. Also, the cost of a pump is pretty serious. My CDE has been encouraging about a pump, particularly after she finally got me to try the Libre flash,  but is beautifully respectful of my reticence.

    If the sensor seems to be coming loose or your bump it or you are just a bit worried about it staying on, you can put a bit of tape on either side of the centre hole. You just need to be careful of not pulling the sensor off if you need to change this tape. I cant remember the name of the tape to use but it is the same that people who have pumps and CGMs use. I am sure others on the site will know what it is. My CDE gave m some when I first started using the flash monitor but I cant find it at the moment.

    I hope you have more luck with the flash monitor in the future if you decide to try again and hopefully you can get it through the subsidised scheme.  
    If you want to know anything else please ask.



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    Rochelle
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  • 3.  RE: Freestyle Libre

    Posted 16-05-2020 21:35
    ​Thanks Rochelle, your advice has been most helpful. I may have partly dislodged it while in the shower or sometime during my sleep. I tend to forget it is there. I have heard about it being available on the NDSS scheme so I will investigate it.  I will also investigate some additional tape to help it stay in place. I enjoy the convenience of it, especially during the night when I have to get up and check my BGL.
    Regards,
    John

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    John G
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  • 4.  RE: Freestyle Libre

    Posted 17-05-2020 19:35

    Hello

    I've been using Freestyle Libre for about 18 months. It is the only glucose testing I do unless I feel the results are "off". I've had that happen a couple of times after applying new sensors where the results go ridiculously low for the first 12-15 hours before settling down. Abbott are very good with support and have replaced a couple of sensors where I had issues. 


    I've found the results close enough for me to trust them as my primary source of information. I recognise that the interstitial reading lags behind a fingerpick test. The continuous data and speed and simplicity of testing make it well worthwhile in my opinion. 


    I've also learned to be more careful walking through doors so I don't knock the sensors loose but it still happens. I've tried a couple of different adhesives and found Nexcare Micropore Tape to work well or there are custom patches from NotJustaPatch that work well too. I've been pretty lucky using just the sensor adhesive and applying exactly as directed and don't have any problems with them coming loose unless I knock them. I try and keep them dry though so that probably helps. 



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    John
    Brisbane Qld
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  • 5.  RE: Freestyle Libre

    Posted 18-05-2020 07:22
    ​Thank you John for your feedback. I have sent an email to Abbbott  seeking their advice  but have not received a reply from them after nearly a week. I will try and phone them again.

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    John G
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  • 6.  RE: Freestyle Libre

    Posted 18-05-2020 07:23
    Thanks John for the info about the tapes. Have not needed them but have found I have to keep my handbag on the opposite shoulder in case it slips down. Have not worried about keeping it dry but have to remember to take care when towling  off after a shower.  I think they are a great tool for managing BGLs and i carry mine with me all the time. Just have to be sure not to loose it from my pocket when working outdoors. It is much easier on the arthritic fingers  than constant fingerpricking, particularly in the cold weather.

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    Rochelle
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  • 7.  RE: Freestyle Libre

    Posted 18-05-2020 10:22
    Hello

    I assume you are talking about the NFC reader when you talk about not losing it. I never bothered getting one of those. I use my iPhone as the reader as the phone is always with me. I've found the Freestyle Libre made exercise much easier to incorporate into my daily routine too. Checking levels at the beginning of my walk, midpoint, and at the end so I can manage my levels. Obviously I need my phone for that but I was carrying it anyway.

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    John
    Brisbane Qld
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  • 8.  RE: Freestyle Libre

    Posted 19-05-2020 21:09
    I dont use my phone for anything much except calls and texts as I have no reception when we are on our rural property and only use it when I am in town. I like the reader as it is lite and easy to carry in a pocket when exercising and working outdoors. I got a second one when Covid started so I would always have a spare if I got sick, or had to replace a sensor early and the reader would not recognise the new one till the 14 day period was up.

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    Rochelle
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  • 9.  RE: Freestyle Libre

    Posted 18-05-2020 10:22
    G'day all.   Well done Rochelle for managing to use Libre for your control !  

    I used the Libre flash for about 10 days as part of a free trial by Abbott. Thanks to Abbott and to DQ who had an organisational role.  I stopped using it because the sensor fell off (I'm very active).  To protect the sensor, I used a sock (toe cut out) as a sleeve over my arm .  I also regularly checked my BGL with finger-pricks using the Libre and my existing Abbott Freestyle Lite (which I like and have used for many years).

    For many years my HbA1c has been just below 5 but when I tried to keep the interstitial glucose within range according to the Libre I tended to over compensate with insulin or carbs which resulted in large swings in BGL.  I found the finger-prick BGL differed widely form the Libre but this would be expected and I haven't yet properly analysed the data.  My average BGL was maintained during the period but the highs & lows were much worse than my normal.

    I blame my lack of skill with the Libre for the results and can see some good advantages for its use once I accommodate the lead-lag effects between BGL/Interstitial/insulin response/carbo metabolism and exercise.  

    In a future Libre version I would like to have a light to make it easier to use in the dark (e.g. the Freestyle Lite), an alarm and an easier way to down-load & export actual data to a spreadsheet.  Ideally the data should be accessible directly between Libre and the PC (or other device) without sending it via the "cloud" or external server.  I found a way to download directly but the format wasn't convenient.
     
    I'm retired and the sensors are too expensive for me to try again in the forseable future.


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    Jock
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  • 10.  RE: Freestyle Libre

    Posted 19-05-2020 11:18
    Hi Jock
    I am in the process of learning how to download my Freestyle Libre Flash sensor/monitor using the PC app. It is a complicated business but i wanted to get it done before I see my CDE on Friday. Normally she just downloads from my reader and then we discuss - well really, she analyses and makes sense of it and I go along for the ride. If i download myself I can share the info with her at any time between visits if I have concerns and she can see what is going on and we can look for a tweek if there is a pattern. I can also see the patterns more clearly than on my little reader screen.

    If you want to download your data yourself you have to have Google Chrome, you need to have the app and you have to set up a Tidepool account for the data. I nearly went spare getting it going as I am not very tech savvy so thank goodness for a handy husband who is and also has more patience than I do.

    Have you tried downloading or has anyone else in the forum downloaded their own data for analaysis - using the Libre flash or any other CGM?

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    Rochelle
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  • 11.  RE: Freestyle Libre

    Posted 19-05-2020 17:12
    Rochelle, yes, I download the data onto my laptop (Windows and IOS options) from this site: 

    https://myfreestyle.com.au/products/freestyle-libre-software/#

     and I don't remember having to establish an account - it was simple.  It seems to download data and reports directly to your device/PC and from there, you can email it to others.  You can also export the data in csv (text) format for your own analysis in a spread-sheet.   I prefer this method for privacy.

    During the Libre training we were told to use LibreLinkup and LibreView phone apps but I discovered that they upload data to the "cloud" so that it's available to others that you assign.  Some people, would prefer that method and I think those apps require an account (?).

    Regards,

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    Jock
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  • 12.  RE: Freestyle Libre

    Posted 19-05-2020 17:12
    P.S. Rochelle, I use Firefox web browser, not Chrome and didn't need a Tidepool account (not familiar with that). 
    Regards,

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    Jock
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  • 13.  RE: Freestyle Libre

    Posted 19-05-2020 17:12
    Hello Jock

    I don't get the need for "a light". I use my iPhone to scan the FreeStyle Libre and I've never found any issues. From start to end I can see my reading in about 5-10 seconds. I do rekey the reading into Apple Health so another app I've used for the last 5 years has access to the values. I've asked Abbott to start sharing data via Apple Health but no joy there yet.

    Have you or Rochelle tried LibreView (Abbott on the web)? As far as I am aware the iPhone app automatically feeds my data direct to LibreView and the reports from there are quite comprehensive. I'm hoping to take them into my GP next visit for our 6 monthly review. LibreView also provides the ability to download your data which I believe is standard CSV file format and should be easily imported into any spreadsheet (Excel or Numbers).

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    John
    Brisbane Qld
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  • 14.  RE: Freestyle Libre

    Posted 19-05-2020 21:10
    Hi John
    Yes I have done the LibreView on my PC (see my post at number 9) but Jock's responses (10 and 11) seem to be a better option. I want to share with my CDE so I did the LibreView. Hopefully it will work for my appointment with her on Friday. If it turns out to be a drama she can download from my reader and I might try Jock's option. Will let you know. Good luck if you do try LibreView.

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    Rochelle
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  • 15.  RE: Freestyle Libre

    Posted 20-05-2020 07:06
    John, I tried LibreView but preferred to not share my data in the "cloud" (web).  I've also tried my Android phone too but preferred to used the Libre reader.  I downloaded the pdf reports to my laptop using the Libre software (see one of my earlier messages for the download URL). 

    The Libre software can also export the data in csv format and I've used that to compare data with other monitors. 

    I only tried the Libre with one sensor and didn't continue because of the cost, but I can certainly appreciate how useful it can be.

    (BTW, I use the light on my Freestyle Lite to test BGL during the night.  It shines onto the test strip and illuminates the display.  ;-) 

    ....all the best...

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    Jock
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  • 16.  RE: Freestyle Libre

    Posted 19-05-2020 21:09
    Hi   Jock
    I agree the Freestyle Libre flash has its limitations but it is a great way of constantly monitoring what is happening when I am out and about and dont have a regular daily routine to know what to expect on any day. I was very grateful to be eligible for the subsidy scheme that started in March. I think it should be available to all T1s not just those on some kind of concession card. You seem to be managing amazingly well without it. I never have insulin or a main meal without doing a blood test first to calculate carbs/insulin, regardless of the Libre reading.

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    Rochelle
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  • 17.  RE: Freestyle Libre

    Posted 18-05-2020 13:20
    A ​Freestyle Libre Flash glucose monitor is on my 'wish list'.  My Diabetes Educator lent me one for 2 weeks while we were trying to sort out my roller coaster BGLs, and I found it hugely useful! Being able to see when my BGLs were on the way up or down, meant that I was able to manage my BGLs much better.  I am sure that having one would make a significant difference to my BG management, but sadly they are just too expensive.

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    Jenny
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