Tuesday, 3 January 2017

Freestyle Libre - 7 Months On

An arty shot, if you will.
If you are new to The Freestyle Libre you can read about my first impressions and discover the initial problems I faced here. With that aside, I am here to share you where I am, 7 months on, the advantages, disadvantages and my tips if you are thinking about investing in this technology. Which for the record, is very expensive.

I would like to point out here that I do not fault the company, or their product in the slightest, in fact it's quite the opposite. I truly believe the Freestyle Libre Flash Glucose Monitor is a game-changer for many people with Diabetes. As always, my mutterings here on Diabetesgeek are purely my experience alone, you may feel different and that's awesome too.

Months 1-1.8 (Yes I did just do that)
I was swept off my feet and very much enchanted with my new found freedom when I first got my hands on my Libre. You can read a poem I wrote  about how I felt about Libs, a friendly nickname I gave to my handset, we were a great pair for a while. On our first day I learnt the importance of pre-blousing.. I now shout about this to all of my new diabuddies! It was something I was always told to do as a kiddiwink but never did, I learnt very quickly with the Freestyle Libre that spikes are hard to ignore (understatement of the century on my part).
You'll have noticed by now that I am writing in past tense, of which I feel bad.. I still love this technology. I just wish my brain wasn't wired into overdrive. I jumped into using the Libre with little idea of how it would affect my mental health, which ended up turning into a big black hole. I hope some of you planning on buying the Freestyle Libre system take my experience on board. I learnt the hard way, and I write in hopes others don't have to. 

Months 2-5
By the end of my second month using the Libre continuously* I began running into a few problems, which I blogged about (linked at the top of this piece.) In short, I was seeing data I didn't like and I wasn't sure how to cope with it, so I did as any other would, I carried on using the Libre and in turn was overwhelmed with data. I was putting in all the effort and not seeing the results I wanted or deserved. This cycle carried on for months which led me to my longest Burnout period to date- a hellish 3 months, from September right through to December. In that time my mental health turned to shit, my blood glucose levels were fluctuating more than I had ever known and I felt awful. At no point did I completely stop testing my bloods or stop taking insulin, thankfully I've not done that since I was about 8.

I didn't help myself either, which is important to point out here, I lost contact with my diabetic team for several reasons, I hope to blog about it one day. I wanted no input from health care professionals.. I was frustrated, in every sense of the word.
Frustrated this expensive technology seemed nothing but a horrible experience, frustrated that I couldn't handle this by myself, frustrated that I had to reach out for help and frustrated with, what felt like, lack of solutions.
A huge lesson I have learnt retrospectively is this, if you are going to invest in this tech, please please please work in partnership with your HCPs. For your safety, to preserve any blood glucose control you think you have and to keep everyone in the loop, use all the resources you have. Whilst in my 3 months of burnout I fell into some pretty bad habits, most of which I don't feel comfortable enough to talk about on here yet, which could have seriously damaged my health, so please, just keep yourself safe. 

*we shall speak more about this later.

Months 6-7
I began to take breaks between sensors, almost giving myself some kind of messed-up respite from what was supposed to be this grand piece of technology. I found returning to finger-pricks made me feel more free than the Libre did, which is the opposite of what you expect when you first research the tech. Finger-pricking broke me from this cycle of what felt like never ending misery and shitty data. Shitty data I didn't know how to handle. It went from finger prick snapshots which were never awful, to 24 hour graphs of my blood glucose, I saw every missed unit of insulin, every messed-up correction dose and every over-treated hypo. It drove me to the point of insanity. I literally felt like I was on the verge of a mental meltdown, which looking back on it now, was exactly where I was at in my 3 month period of burnout. I'm not sure if my blood glucose levels are genuinely better when finger-pricking, or if I just don't test when I know I've only just eaten and my bloods are bound to be higher than I'd like. Whichever it is, either is better than the crap I was seeing on my daily graphs, sometimes ignorance is bliss.

Moreover, *I felt bad each day I didn't wear a Libre sensor, because my parents were forking out such a lot of money for it, I almost felt obliged to wear them. Listen to your body, you know it better than anyone else ever will.

Luckily, in December I had the opportunity to complete a 'carb counting education course' through my hospital, another topic I plan to blog about in the near future, so many topics, so little time! On said course, HCPs advised I seriously re-considered using the Freestyle Libre because of the unhealthy habits I'd adopted. I think that was the point where I realised my eating habits had become, to put it politely, screwed. I learnt so much invaluable information whilst on the course but mainly that a lot of others get overwhelmed by the data that us T1's are so immersed in, especially when you're not sure what to do with the information you've collated. So I took the advice given, and since I have stuck to finger-pricking alone and have never felt better. 

That is not to say I won't ever use the Libre again, I hope be in a place mentally, where I can make the most of this fabulous technology. I didn't use it under the best of circumstances, given I was not in contact with my HCPs which I do not recommend (another understatement). I had issues with my target range, that's another topic for another day as well as trying to change my diet to avoid spikes, all of which I could have resolved if I was in contact with my team at the hospital. Communication is key, especially when it comes to your everyday health.
I still have two sensors to use, but I will be scanning with one eye shut. I still feel so blessed that my parents are in a position to fund this technology for me. When used correctly, and in partnership with your health care professionals, the Freestyle Libre is a game-changer for most. This attitude I still very much believe in.

To summarise, my Top Tips are as follows..

- I mentioned it earlier, but I'm going to say it again.  If you are going to invest in this technology, please please please work in partnership with your HCPs. They can help you, and if they are not familiar with the Freestyle Libre software, teach them or find someone that can.

Image result for you know yourself better than anyone else quote
A note from me, to you. - A
- You don't have to wear the Libre sensors all the time. Don't feel obliged to wear them just because you are fortunate enough that you can afford them. Order the starter kit, use the first two sensors and test the waters, so to speak. Be sensible, you know your body better than anybody else does.

- Take breaks between sensors. If just for a couple of days, let your brain rest from the constant stream of data. Returning to finger-pricks is not all as bad or as hard work as it seems.

- You're doing great.

If you read to the end of this post then have my many congratulations because I've quite literally written an essay, but as always, even if this just helps one person and they find they can relate, then my time spent brain-farting on a keyboard was completely worth it. Thank you for reading!

Amber xx

Twitter: @diabetes_geek 


  1. Good work Amber, honest and heartfelt as always xx

  2. Really interesting article & great insights. I figured I was just missing out by not having Freestyle Libre, but totally hadn't considered this side of things. Thank you, Amber

    1. Thank you for your kind feedback Graham, I am glad you found it useful.

  3. I bought into Libre about 5 months ago. I am unusual (perhaps) in that my T1 was triggered by having half my pancreas out and I think what is left still decides to work occasionally. I am also old (70) and have a long career in engineering and engineering research behind me so I am used to approximations and thinking about the balance between chronic and acute issues. I had just finished a course on carb counting when I found the Libre but I was still getting all too frequent hypos and hypers. So I started off knowing that I had peaks and troughs and working on those with the help of the Libre was great. Without actually improving my counting I was able to start to recognise which meals produced rapid rises and which gave a delayed bu often determined rise. I have been able to respond to the extra data and being a data nut I love it and can deal with it.

    The Libre has given me some real peace of mind, which helps considerably with continued work (very important to me) and my other role as a carer for a wife with long standing MS and developing dementia. I find it particularly good if I am out in the cold on site burning sugar and can watch closely for any sign of a drop and halt it before it bites and I have to withdraw.

  4. It is a very thought provoking article. It takes a great deal of experience to handle large quantities of data. In providing the daily graph the Libre often gives a bad impression of what is quite acceptable data. Compressing the time only serves to make the variations look a great deal worse than they are. The rush to embrace new technology also leads one to forget first principals. Change one thing at a time. The Libre provides information on blood glucose alone. It can show you the effect of changing the interval between bolus and eating. It is never going to pass comment on what and how much you are eating. A supportive team will be able to keep your feet on the floor and guide you through the progress you are making. I am really sorry that you had such a disturbing experience. I hope that you will, in the future be able to come back to the Libre with more realistic expectations of what it can do.

    1. Thanks very much for your feedback. I am glad you find my post useful and could relate to parts of it. All the best.

  5. Thank you. My mental health has been terrible and I just didn't put the two together, despite being scared of scanning in the morning in case I saw a graph I didn't like. Really enlightening to see this view and that it had a big effect on someone else. Wow. I feel like my eyes have been opened, thank you! x

    1. Awh thank you for the great feedback Georgina, I am so glad you found it a useful read and could relate to it. I'm sorry to hear you're mental health has suffered since using the Libre, the more people I talk to, the more I realise how common that link is unfortunately. The mass of data is a lot to take in on any given day, let alone when you're not feeling 100% anyway.
      Take care.

  6. Thank you for writing this, my mental health has been terrible and I hadn't made the link. Seeing that it's had such a big effect on someone else is really eye opening and helpful. Thank you!

  7. Thank you for sharing your experiences and my best wishes for you as we begin another year of our diabetes adventure.

    1. Thank you for the lovely feedback and wishes. All the best to you my friend, I wish you 366 days of good health, happiness and positivity.