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Getting left behind...

Discussion in 'Type 1 Diabetes' started by t1reid, Nov 27, 2017.

  1. t1reid

    t1reid · Member

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    Hello all,

    Long time viewer of the forum, after 10 years now of t1 getting a bit fed up and feel left behind with recent technology.

    Following other diabetics from around the globe on social media sites, everyone appears to have Freestyle Libre, Dexcom or other form of managing diabetes.

    I am using Contour Next to test levels, and while i am ok at managing diabetes I could be so much better, and feel like the above devices would help me do that. However, I just find them unaffordable. £62 incl delivery for 1 sensor is a lot every 2 weeks (Libre), and Dexcom seems a significant cost.

    I live in Belfast, NI, and while its available on NHS (Libre), everyone i talk to knows nothing about it :-\ and then proceed to say well you are doing ok, i doubt you will get it anyway it will go to those with poor control.

    Think after 10 years I just need a new way forward but feel stuck. I am wondering what everyone else is doing? Staying with normal pricking method or taking the hit financially with the continuous monitoring devices and are they helping achieve tighter control?
     
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  2. novorapidboi26

    novorapidboi26 Type 1 · Well-Known Member

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    Personally, I believe these devices are not essential to good control.....a good education and understanding of dose adjustment and carb counting is more important.....

    I have yet to take the plunge with the Libre and its because at this point, it would only serve as a means to basal test.....

    Due to my DAFNE training I have learned to dose up correctly, time it correctly and of course make food choices so that my BG is within range and spikes are at a minimum.....

    Obviously I will be getting one, if I am allowed, on prescription, as I fancy using the bluecon device with it, but it wont be a full time thing.....

    So I wouldn't feel bad about it.....
     
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  3. helensaramay

    helensaramay Type 1 · Expert

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    I am going half way - I self fund adhoc Dexcom G4. My choice is based on my pump being a receiver for the Dexcom.

    I use my Dexcom usage to recognise trends which I will then make tweaks to my insulin doses, take a month using these tweaks and then use another Dexcom sensor.

    This has helped me achieve tighter controls without too big a hit on my bank balance.

    Many people use the Libre which, is cheaper, but for me, the results seemed too far out for me to rely on.
    Since the Libre trial, I have changed my way of thinking a little and decided not to focus on the individual readings but concentrate only on trends. This also gives me the chance to have some "time off" as I could become obsessed with my readings and not give the tweaks long enough to "bed in".
    However, I like the Dexcom's ability to alert when I am too high or too low which is not possible with the Libre. Maybe that is why I need time out!

    Just to add I have received very little support from my health care team on this - last time I asked they had no funds for and CGM. But I think the vocal people on this forum are in the minority with respect to diabetes management - they are the guys who give more attention to diabetes management than most - I don't think you are being "left behind" compared to the average person with diabetes (whatever that means).
     
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  4. JMK1954

    JMK1954 Type 1 · Well-Known Member

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    I know what you mean, t1reid. I was diagnosed in 1964, but although I worked for years as a computer programmer, (or perhaps because I did !) I have a very wary attitude to all the latest techie stuff. I think any device which throws more light on fluctuating BS levels has to be a good thing, but as long as I can still tell when my BS level drops to anything below normal, I don't really see the point in paying vast amounts for a piece of techology that tells me what I already know. Of course, for anyone with problems identifying a hypo, the techie stuff may be a tremendous help.
     
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  5. t1reid

    t1reid · Member

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    Thanks for feedback.

    I did the DAFNE training for the 2nd time in June, since it had been 10 years since my last. It does help, I agree and keeps level spikes\ hypos to a minimum.

    I think my gripe about getting left behind is because I do not get informed of anything from the professionals managing my diabetes. I have been doing the exact same thing for 10 years now and I am just looking how to improve.

    I have ordered 1 Freestyle Sensor to give it a go, think its something I need to get out of my system at least.
     
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  6. Lynz84

    Lynz84 Type 1 · Well-Known Member

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    Hi t1reid.

    I am also from belfast. If you ask your clinic they may be able to give you some samples of the libre. Also have you registered with the dafne course? I know the royal and city hosp run this every few months!
     
  7. becca59

    becca59 Type 1 · Well-Known Member

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    There is a code on here for free delivery and you won’t pay VAT so it should come in at just below £50. Still dear I know but as a tool for occasional use a brilliant eye opener.
     
  8. t1reid

    t1reid · Member

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    Hello @Lynz84 - I asked my GP and they have never heard of Freestyle Libre, so they said ask the GP Nurse... who also has never head of it. Now waiting for Diabetic Consultant at the Ulster Hospital.

    I did the DAFNE course again recently in June, while it is good at time, plus having people to bounce off is great, but after I feel you're left on own again, which isnt great.
     
  9. phdiabetic

    phdiabetic Type 1 · Well-Known Member

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    When I was deciding whether I would like a pump or not, I was told that a pump is just a different way of getting insulin and that I could get equally good results on MDI and pump. I did improve my control slightly after getting the pump - previous HbA1c's in the range 5.2-5.5, new HbA1c's in the range 4.6-5.1. However I think that is mainly due to having more experience dealing with diabetes than it is due to the new technology. Obviously the pump has many benefits over MDI (smaller and more frequent doses, variable basal) but I agree with my endo that it is possible to get good results with either. However it is very unfortunate that you don't have access to technology - everyone should have the opportunity to try all the available options! Keep on asking about it at your appointments and hopefully you will eventually get the chance.
     
  10. Diamattic

    Diamattic Type 1 · Well-Known Member

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    I can imagine what this feels like - I see it too. Everyone is standing in the jungle or at cozy ski lodge taking pics of their dexcom trend lines...

    I can honestly tell you - as someone who has both the dexcom, and Libre system - I get sick of having them.

    I love them both, but after a month i like to take a month off and just do finger picks. There is nothing stopping me (or you) from just picking whenever you would have checked your reading on the dexcom and giving an adjustment bolus.

    They are nice to have to give you piece of mind, and I would say spend the money and see for yourself - but you don't NEED them.

    A huge problem i found with the Dexcom was alarm fatigue - It would beep at night every half hour if my sugars were over 10.1mmol/l and just keep me awake. It beep while driving and I would have to struggle to take it out of my pocket to stop it vibrating constantly. Or during the movies, or a date.. just vibe and beep like 10 times a day. The Libre solves this and is much more comfortable to wear.

    Try it out if you can - but if you can't don't use it as excuse not to go out and be awesome. Just check your finger whenever you are curious, and be thankful you can sleep through the night without being woken up! haha
     
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  11. mytype1.life

    mytype1.life Type 1 · Well-Known Member

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    My hospital was the same, didn’t offer the Libre at first. I decided to self fund my Libre following some research.

    I know there is mixed opinion but for me personally, it has changed my life.

    Something was always missing for me (for the past 24 years) I was following NHS guidelines, exercising, avoiding the ‘bad’ stuff but was stuck in a rut and it was really starting to bring me down.

    Since September when I got the Libre my control is so much better. I’ve learnt so many of the foods I used to eat actually cause me spikes. My next HbA1c is next week so I’m really hoping to see an improvement.

    Best of luck :)
     
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  12. therower

    therower Type 1 · Well-Known Member

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    @Diamattic . Surely if your using the Dexcom and it is continually alarming then you are not reacting to the information it is giving you, therefore there seems no point in wearing it.
    Why not turn the alarms off? I was led to believe the only alarm that can't be disarmed is the 3.1 set by the factory.
     
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  13. helensaramay

    helensaramay Type 1 · Expert

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    Either turn the alarm off or adjust it to go at a higher level so it doesn't go as often so you start to learn it is something to react to again.
     
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  14. Amom2go

    Amom2go Type 1 · Member

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    I am in the US and have had diabetes for 43 years ..People assume that because I've had it this long I am in the know about everything that is new and it couldn't be farther from reality . I have had too many times where I have had to know more about my disobeyed going into a doctor because the doctor didn't know anything . I am using a next contour machine to but it wirelessly sends to my pump. A few years ago I tried a CGM, I could never get it to work right . I have had the same basal rates for a long time and then this past year ,when I had to have a hysterectomy, everything has just been crazy. I now I'm looking at possibly having to change basils Excedrin but I don't have a consistent day at all things are always all over the place and I'm still struggling with mental fog and side effects because of the surgery . On the upside I also have done better taking care of myself on the whole then many people that have gone consistently to doctors and are having severe problems . I feel you need to know yourself and feel confident about how you know your body workd because new technology doesn't always mean it's a good thing and doctors aren't always the best go to many times you need to do-it-yourself
     
  15. Amom2go

    Amom2go Type 1 · Member

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    I apologize for any typos or strange word replacements my phone makes. I just am coming out of anesthesia from some procedures yesterday and could not do all this typing, so I verbally sent it .
     
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  16. Chowie

    Chowie Type 1 · Well-Known Member

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    I would be looking for a New GP clinic. My GP had never seen one, but she knew all about them. Unless you can get the cost covered, you don't need anything special in most countries. My Endo told me to use them, I placed an order on line watched the youtube clips and off I went. My only 2 gripes is COST and they are even more expensive as I'm experiencing a 30% fail rate. One lasted a day. In Australia there are very poor consumer protection laws and Abbott's Australian Customer Service pre sales is great, they will only call and promise the world - nothing ever by email and once you have a problem they are keen to know about it (for their own stats) but just tell you to watch the videos, do unpublished key sequences to the meter and to go away. When they work they are amazing.
     
  17. Diamattic

    Diamattic Type 1 · Well-Known Member

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    hahaha no..I am very much always reacting. Always acting on what it is giving it.

    There are some nights, when you just eat something before bed and your sugars spike.
    So you get an alarm 1 hour after eating even though you have bolused already.
    Then you get another one 2 hours after eating because you are still over 10,
    then you get another one at 3 hours and you think "maybe i didn't bolus enough' so you bolus again,
    so you get another alarm 30 minutes later because that bolus hasn't had really taken effect,
    then you get an alarm because your 'dropping too quickly' so you panic a bit, and see what happens surely at this point its been just about 3-4 hours without sleeping however now its way past your bed time.
    You get another alarm because now your going low because of all the bolus that happened after all the alarms...
    and the whole roller coaster repeats and you end up just not sleeping on a tuesday night and your whole work week is shot.

    This has happened to me on ever dex cycle. I know if i just didn't eat before bed this could be solved, but honestly its very difficult to sleep when your stomach is rumbling. I can't alone in this haha

    If you have ever had a roller coaster day or night, a Dexcom will pretty much just add alarms every 30 minutes to make sure you stay focusing on it - it is not always a good thing IMO.

    EDIT - Also in regards to that 3.1 - it is a something you cannot change, or turn off. However, it is a very loud high pitched beeping. I have had this happen on days 1 or 2 when it wasn't fully broken in, just randomly throughout the day. I would be standing next to co workers chatting and have a blasting siren go off and then check my sugars and see I am at like 4.5.. Its happened while driving on the highway and I freaked out and pulled over in a cold sweat and checked and i was at 7.1. - that sensor, for some reason just stayed LO and beeped for hours, before failing on the first day. Imagine if that was the night before a big meeting, or job interview, or if you were at work or in class ?
    I think i will stick the Libre - no beeps at all! haha
     
  18. tim2000s

    tim2000s Type 1 · Expert
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    And this is why technology is good. It's telling you that maybe, just maybe, you'd sleep better if you ate something before bed with fewer carbs in it that didn't make you go as high.... ;)
     
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  19. leking

    leking Type 1 · Well-Known Member

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    I've gone from an hba1c of 7.5 to one of 5.9 in a year thanks to using the libre.

    It's expensive yes, and frustrating that I have to pay for it myself. But it could literally be adding years to my life, and postponing health issues that'll cost me a lot more..
     
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  20. t1reid

    t1reid · Member

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    Had my consultation today and actually managed to get a Freestyle Libre. It will be reviewed again in 3 months, but at least it will be a good run with it. I am hoping for the same results as @leking. I know it isnt a necessity, but hoping it provides me with a boost i need, which is probably what I need most with type 1. Then imagine funding my own every now and again if i have the funds.
     
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