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FreeStyle Libre - My Life with the Machine

Discussion in 'Type 2 Diabetes' started by Peter_Sylvester, Oct 31, 2017.

  1. CarolineSugar

    CarolineSugar · Newbie

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    Hi Peter
    I have just put an order in for the FreeStyle Libre and look forward to hearing how you get on with MyFitness Pal.
    Caroline
     
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  2. CarolineSugar

    CarolineSugar · Newbie

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    When you say your food diary is now very basic - what do you mean? Pen and paper, spreadsheet?
    Caroline
     
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  3. Bluetit1802

    Bluetit1802 Type 2 · Oracle

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    Excel spreadsheet. Easy to copy and paste!
     
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  4. Stroudie

    Stroudie Type 1 · Member

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    Hi Goacher55,

    The key to getting this started is to have something important and engrossing to do first thing in the morning. In my case I often get up at 7.00 am, Get out on the golf course by 8.30 back in the clubhouse at 12 - strong cup of coffee to suppress pangs and home by 1.00, hungry but no food since 7.00 pm the previous evening. If I just get up and work round the house I do get hungry by 11.00 am, but still not bad.

    The other alternative is to go to bed late and get up late!!

    Having done this for 30 years I imagine the first couple of weeks may be tough.

    Cheers

    Stroudie
     
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  5. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    LIBRE: All change..!

    And so dear 1st sensor, you reached the end of your planned life this morning (aaah) - goodbye dear friend, you have served me well..!

    You performed without complaint, and we have parted company without any bruises, irritations or leftover residue.

    Thank you dear friend - you have opened my eyes to a wondrous new world of detail and timings, and I am already seeing the results of the changes we have discussed between us and agreed upon.

    The King is Dead - Long Live the King...

    And now I bid Welcome to No 1's lookalike, and you are pressed into action at 9:00 am this morning.
    You have spent the last 48 hours attached to my right arm, whilst your colleague completed their job on my other arm.
    And I have to say that I have hardly noticed you are there..!

    You are now slightly higher up, away from the glare of peeking out below my short sleeve shirt. And we both seem to like it better. You have settled in well.

    Having given you a 48 hour acclimatisation period, I asked you to spring into life at 9:00 am, and, as promised, you delivered your 1st reading to add to my collection at 10:01 am.

    I am impressed with your efficiency my friend - thank you, and I look forward to our productive attachment over the next 14 days.

    Let's do this..!
    Peter
     
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    #125 Peter_Sylvester, Nov 8, 2017 at 8:35 PM
    Last edited: Nov 10, 2017
  6. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    LIBRE: Next Months Supply

    I had heard on this Forum that, due to the popularity of The FreeStyle Libre system and the fact that it has now been approved for the NHS, there are delays in supplies of replacement sensors.

    I also picked up from someone on the Forum that it is always "best practice" to have an extra sensor "in stock" so to speak, just like you wouldn't leave it until the day before to re-order your medication.

    So, having decided that I am happy with the way that Libre is helping me make significant changes to my Diabetes control, and decided to commit to using Libre for the longer term, I went ahead and ordered another months supply.

    Unlike other peoples reports, my experience was very good.

    I ordered online direct from Abbott on 1st November, and my DPD parcel arrived this morning, 9th November.

    #SpeakAsYouFind - that is good stuff and exactly what was promised...

    Peter

    [​IMG]
     
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  7. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    LIBRE: A Little Irritated

    I have been flushed with a continuing round of successes since adopting my Libre baby, now 3 weeks old.
    In that time, this little piece of hi-tech has both opened up many questions that I didn't know existed - and provided answers for them.

    For me, this gizmo has been Life Changing.

    So I am very surprised - and irritated - when I visit other social media sites, and see some very negative comments on things Libre-related.

    If you look at some peoples comments, it is almost as though Libre, and its manufacturer Abbott, owe people a living...!

    • People neglect to order their replacement sensors in enough time, and then complain when delivery is delayed a little due to the current success of the Libre roll out.
    • Some people complain because the cost of Libre to the Pharmacy network is around £36, but that they sell them at "retail price" for around £48. (Reminder: Pharmacy's are a BUSINESS)
    • And some complain that their own Health Authority has not yet agreed to fund the Libre on the NHS
    People - Wake UP. Get REAL...!

    Let me make a suggestion
    STOP COMPLAINING about others,
    START CONTROLLING your own life.

    Everything will be OK in the end - if it isn't OK, then it isn't the end...

    In the meantime, if you spent just 20% of the time you spent complaining, and used it productively managing your own life, your own diet and your own supplies, then there is a good chance that your world might be a better place...

    Of course, this is a wasted comment, because people from other Social Media sites don't appear on here.
    But anyway, I feel better now, having got it off my chest..!
    Onwards and Upwards - Positively
    Peter
     
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    #127 Peter_Sylvester, Nov 10, 2017 at 11:54 PM
    Last edited: Nov 11, 2017 at 6:34 PM
  8. Ixarix

    Ixarix Type 2 · Well-Known Member

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    My current sensor is almost at the end of its life spam, so I will be replacing it with a new one. I've been told that if you apply the new sensor about a day ahead of removing the old one, and leaving it for 24 hours before activating helps to make sure the sensor is reading correctly upon start up. Any other useful tips would be appreciated.

    I love my Libre btw. It has been extremely eye opening to see how things ebb and flow.
     
  9. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    That’s correct
    Earlier in this thread, I described how I moved to my 2nd sensor

    Apply it to the other arm
    Do it 48 hours before expiry of the current one
    It will settle in whilst the current one is running out
    The new one only starts to tick down its 14 days AFTER you have activated it

    In my own experience, the 2nd sensor started to read accurately one hour after I activated it

    Good luck
    Peter
     
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  10. RFSMarch

    RFSMarch Type 2 · Well-Known Member

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    A little harsh. For example - I DO attempt to have enough in stock, but have had a run of bad luck with the reliability of the sensors, coupled with a few circumstances that make it a little challenging to ensure I am around to contact Abbotts effectively.

    I now find myself in the position of using my spare because my gut instinct tells me this current sensor recording permanently low is wrong. But that then leaves me away from home (and forgive me but not everyone is in a position to have someone at home to be around to handle deliveries... is that my fault too?), and not able to get to a sensible pharmacist with stocks of finger-stick testers.

    Not everyone in the group I think you are referring to can afford to buy multiple sensors at once. Is that their fault? Is that what you are really saying? Because if you are, then I am afraid I don't think I want to know you any more. I am in a fortunate position to be able to put in an order on Monday for between 4-6 sensors to carry me over. Does that make me better than someone struggling to purchase just one or two at a time? God I hope not.

    I admire your enthusiasm for this... I was exactly the same about 4 sensors ago, and you surprise me by being quite so judgemental - you don't know these people's circs, only what the over-zealous admins in the group permit them to post before slamming down the hammer and turning off their comments.

    This comment:
    In the meantime, if you spent just 20% of the time you spent complaining, and used it productively managing your own life, your own diet and your own supplies, then there is a good chance that your world might be a better place...

    makes you no better than the troll who expected me to stop using Libre so that he wouldn't get hit with stock issues for his sensors. And I say the same to you. I will manage my condition how I see fit and right now that is by scanning rather than finger pricking. However, I am not made of money either, and for whatever reason, I have now had issues with 3 of the four sensors I had comfortably in stock. That is precisely an issue for Abbott. They are providing a piece of kit many come to rely on, and if one thing this latest disappointment from them has taught me, it is to have an alternative test means but I am not in a position to do anything about that now until I am back at home.

    I am surprised at you Peter. And not a little disappointed. And I look forward to the day when you start to have inevitable issues with the product. Bravo if you manage to hide your frustrations with it. But I suspect you will also come to despair at times with the shoddy way Abbotts control their stock and their lack of knowledge management.
     
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    #130 RFSMarch, Nov 11, 2017 at 8:41 AM
    Last edited by a moderator: Nov 11, 2017 at 6:09 PM
  11. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    Hi @RFSMarch
    Thanks for your post.
    You know that I value your opinion, and therefore I take your comments on board.

    However, my comments are aimed at people who leave it until 2-3 days before ordering their replacement sensor, and then complain about delivery problems at Abbott

    That is the point of this particular post - to encourage people to be accountable for their own actions, and not just try to blame others.

    You are right - I have obviously been very lucky so far, and I am observing others people's situations to try to ensure that, when the inevitable "bump in the road" comes along, then I will be prepared enough to handle it.

    I am sorry if it came across differently
    Peter
     
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  12. RFSMarch

    RFSMarch Type 2 · Well-Known Member

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    Peter
    A few points for you to mull on. Some people might remember my circs leadng up to my diagnosis. I won't bore you with them.
    I am not the only person to work away from home. But when yo are told by Abbotts themselves that they have issues when orders are placed using Apple devices (and I use a Mac when I am on the road) this leaves me with an issue.

    I have one spare and I usually make a practice of ordering my replacements (normally up to three at a time because I only recent returned to more stable work after the circumstances I am pretty sure you wouldn't care about) so I always have enough at least for the next month and spares.

    I was going to place my order on Monday. With my Mac. That apparently doesn't work. That's Ok. I am in the UK this time. So I can call, and give the postal code in the group and hope they will accept it... even though (again if you actually read how they get it is they guess and hope Abbotts don't change it) it is not an official postal code.

    OK I can do that in between all the things I need to do for my self-employed and thus self-inflicted self. But then there is the matter of this permanently low sensor. Do I .... use my spare, and throw myself upon the mercy of Abbotts that they include a replacement? Chances are they might. But still... it shouldn't have to be this way.

    I still feel that my circumstances - now and it will only get worse for me in a full season, puts me firmly in the category of those you pour scorn over. Abbotts is a complete ****-show at the moment. I am sorry but they are. Two stock issues in as many months is not a normal method of operation.

    I could take your approach of dictating my opinion of what you ought to do with your rose tinted glasses, but what would be the point. We will have to agree to disagree, and having come from a position of being able to afford anything I wanted when I wanted to making decisions about what to prioritise my money on, I hope I continue to feel a little more chartiably towards those who really DO struggle.

    Edited to add: So come on then - you know so much about people's issues with stock and organising themselves - you tell ME what to do as I am obviously incapable of organising the proverbial in a brewery?
     
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  13. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    CRICKEY..!
    That told me...
     
  14. RFSMarch

    RFSMarch Type 2 · Well-Known Member

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    Oh well... if you don't even want to acknowledge that Abbotts themselves told me that with two spares in hand (Nov 2017 expiry) when I called them on 1st Nov to prepare ahead that they
    a) wouldn't recommend ordering more than three at a time and
    b) told me to order in the middle of the month (regardless of whether that would actually be convenient) and
    c) staunchly refuse to accept that short expiry dates does lead to more skin irritation issues - despite following their OWN advice to the letter
    d) specifically told me the chances of getting unusable sensors (with Nov 2017 expiry) was quite high given the time frame I could afford to cover..

    and you would prefer to be sarcastic, then indeed you are not anyone I want to know in my journey. I wish you well in yours.
     
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  15. Speedbird

    Speedbird Type 2 · Well-Known Member

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    Ooh Peter, I love it when you have a rant. Was it an extra glass last night? Haha. No offence meant..
    I do enjoy your posts, very informative .

    I have had issues with the sensor a couple of times, and although Libre made me jump hoops when I called them, made me do various readings again and call them back, they did replace them in good time. They have probably got me down on their check list as the “pain in the a**e woman” - don’t care.

    Like others on this forum, I do have to budget for. the sensors and have just 1 a month, 2 weeks of finger pricking, ouch.
    So I give up a few luxuries. Never coffe or wine though.

    Carry on posting. Ooh where is Sid James when you need him? Only those of my era. x
     
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  16. Stroudie

    Stroudie Type 1 · Member

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    Very interesting Peter.

    The sensor software is programmed by the makers to stop at the end of 14 days presumably because they can guarantee it will last at least that long.

    The actual sensor in your interstitial fluid will fail at some point - presumably this is beyond 16 days if you are able to put it on two days early.

    The dexcom software shuts down the sensor after seven days but we skinflint users know we can pretend it is a new one and re-boot it. In my experience it will then go for a further 3 to 9 days. The problem then is that you cannot be sure when it will fail. It might be in the middle of a busy day, on the golf course or in the night.

    This is not a huge problem as there is a loss of signal warning but sometimes it becomes unreliable in the last hour or two giving false alarms or not giving alarms. I also carry a spare in my car at all times.

    Interesting to know if any Libre users have experienced problems on days 13 and 14 when putting the sensor on 2 days early.

    Also is it possible to re-boot the Libre sensor not worth bothering with if on NHS but valuable if self funded?

    Anyway it seems the Libre sensor is better than the dexcom sensor. We are getting an update to G6 next year so interesting to see if there is an improved sensor.

    Following Scott's post above I have ordered a Bluecon Knightrider and will try it out alongside the dexcon when it arrives.

    Just read RFS March's post above so it appears that the Libre sensors are not better than dexcoms in all respects. I have not had major issues of accuracy with any of mine apart from the first 24 hours. They do vary some a bit high others a bit low but nearly always reasonable when checked with finger sticks when in the important 3 - 8 mmol/l range. I set my lower warning at 5 mmol/l to give a bit of wriggle room.

    Cheers

    Stroudie
     
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  17. Diakat

    Diakat Type 1 · Well-Known Member

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    Cost wise it is sometimes a tough decision.I know Abbott say "it's only £3 a day" roughly - but I don't actually usually spend that much on myself as a throwaway, don't do takeaway coffee, magazines etc. So for me a month of sensors is a term of swimming lessons for the child, or many hours of childcare.
     
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  18. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    LIBRE: The Money Conundrum

    The posts from @Speedbird , @Stroudie and @Diakat (above), succinctly bring out something that is a significant issue for most of us...
    • Having decided to self-fund a Flash Glucose Monitoring system, and received the subsequent benefits from its use, the ONGOING COST of the use of such a system needs to be carefully considered - and weighed against the VALUE that each individual places on those benefits.
    As @Stroudie points out (above), there appear to be 2 favoured systems (Libre and Dexcom), and I have no experience of the costs or usage of the Dexcom system - only the Libre one. So my comments are from that perspective.

    Monthly Cost
    If you are a Libre user, we all need to consider the cost of continual usage.
    Each sensor last 2 weeks, and then needs to be changed.
    At £50 each when self-funded, that means an investment of £100 per month.

    If you are a T1, then the benefit value of that continual monitoring does, I am sure, have greater value than if you are a T2. I am a T2, so I can only imagine the T1 benefits.

    Equally, if you are a T2 who is "on a mission" to either contain the effects, or even just understand the food content / timing impacts of your meals, then that will have a certain value to you.

    How can you contain the costs..?
    I have already discovered two ways that I can trim the costs - by registering a diabetic on the Libre site when ordering (it saves the VAT element), and also by entering a special promo code when ordering (it waives the delivery cost)

    Is there anything else..?
    One thing that I have noticed is that a number of T2 users seem to embark upon ON/OFF monitoring...

    • ON - Whilst you are getting used to the data, and how your body is reacting and recovering, then doing continuous monitoring seems to be the way forward... So, in my own case, using sensors back-to-back for 2 weeks at a time has given me fantastic data, and allowed me to make informed choices about my next steps.
    • OFF - I have seen a number of posts, suggesting that - once you are happy with all the data, and you feel comfortable - you may be able to have a 2-week-on and 2-week-off rotation. This will obviously save you £50 per month, because you only need to buy one sensor per month, and not two.
      Obviously, the OFF option would not work for T1s
    At the moment, I am getting great value from the additional data that my new-found "friend" is giving me, and, once I have a better understanding and have implemented changes, then I well expect to migrate to the 2-week-on and 2-week-off rotation at some stage early in 2018.

    As always, this is a personal choice, and driven by personal circumstances.
    Every person should consider and balance out the Money Conundrum - I don't believe there is a no one-size-fits-all solution...

    Any posts I offer up here are simply my own thinking on my experiences so far...
    Peter
     
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    #138 Peter_Sylvester, Nov 11, 2017 at 12:59 PM
    Last edited: Nov 11, 2017 at 6:38 PM
  19. Peter_Sylvester

    Peter_Sylvester Type 2 · Well-Known Member

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    I certainly like the idea that the Dexcom system can give you some sort of "advance warning" about your trends, @Stroudie
    I probably need to research that further and do a cost/benfit comparison...
    Peter
     
  20. Stroudie

    Stroudie Type 1 · Member

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    Hi Peter,

    The costs of Dexcom are £51.25 per sensor that Dexcom guarantee for 7 days so £2665 per annum
    The transmitters cost £200 and last 112 days so £652 per annum
    = total £3317 per annum
    However I reckon by re-booting each sensor I can get at least a further 4 days so sensors then will cost £1701 =
    £2352 per annum including transmitters

    In addition you need a smart phone from the list on dexcom.com website. The cheapest I could find was the Samsung S5 which last February I picked for less than £200 - re-furbished ones were available from I think £125 probably cheaper now.

    You then download a free app from Play.com and you are away.

    Also as you are reliant on the accuracy of your fingersticks you need the most accurate meter which with a MARD (Mean Absolute Relative Difference) of 5 appears to be the Contour Next. Both dexcom and Libre sensors have a MARD of around 11.
    This means that with a combined total of 16 I assume that any results may be up to 20% out - hence I set my lower alert at 5 rather than at 4 if they were all dead accurate. Many meters are so inaccurate the the FDA in the States does not approve them for use use by diabetics.

    As I said in my previous post I am now waiting for the Bluecon Nightrider so I can buy a Libre sensor and try out them out side by side. Rather put off though by so many reports of inaccurate Libre sensors!

    One further point someone in an earlier post referred to price competition bringing prices down. Dexcom in their last year's accounts reported that they had spent $100 million on research and had net losses of $64 million. They are clearly burning cash to get a world lead in a potential 100 or 200 billion dollar market when all the prosperous countries of the world sign up to their device. So with regard to price it is a tightrope to get some income while relying on investors to fund their ongoing research.

    Not looked at Abbott or Minimed accounts.

    Just hope they keep going!

    Cheers,

    Stroudie
     
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