Our results so far: +9.2 hours each day!!

Type 1 diabetes (T1D) was diagnosed during Christmas 2017. A balanced injection of insulin is needed to live. This blog aims to share our interim results in shifting from pen therapy to AndroidAPS, a Do-It-Yourself-Artificial-Pancreas-System (DIY APS). This blog is translated automatically to your language here.

First the disclaimer

I am not a healthcare professional. Always consult your doctor before making changes to your diabetes treatment plan. For this blog series, I do not have – and do not want – any sponsorship deals or whatsoever and pay for all equipment just like anybody else.

Table of contents

The blog-specific parts:

And the general parts:

Blog-specific parts

Introduction

It truly is an emotional experience to write this blog. I never thought we would gain results this fast and expect it will prevent severe complications over time. Mind you, this blog describes only our results so far. As we are fine-tuning, I am sure they will improve in the near future.

The best of using a DIY APS

Less to worry about blood glucose levels during day and night. A huge relief. AndroidAPS – as a Do-It-Yourself-Artificial-Pancreas-System (DIY APS) – will automatically adjust insulin delivery based on the settings that fit your body. Every 5 minutes, 288 times a day! Because of that:

  • A significant improvement of Time In Range
  • A lower HBA1C (which will keep you healthier long term)
  • A night’s sleep without worries
  • Better knowledge and control over your own body

Next to these results, there is a great (online) community and you have the possibility to start your journey today!

Result: Time in Range +9.2 hours each day

Our Time In Range (TIR) is defined between 4-8 mmol/l (convert to mg/dL here). Over the last 15 months we managed to increase TIR from 7.1 hours a day with 9.2 hours a day to a total of 16.3 hours a day. An increase of 126%! Seems like magic, right? A more detailed picture of our journey below.

Also with a good TIR, it is always possible to enter a dangerous low (or high). Unfortunately, this can happen once a day and sometimes even several times a day. Perhaps it’s just a bad day, perhaps it’s time to investigate AndroidAPS settings.

A disadvantage of having a large dataset is frequently spending too much time on data analysis. In the above graph, you see two large drops which are restored and worth explaining our decision:

  • Around 2019-Sep, we went for a three-week holiday in South America. Back then, my girlfriend was using insulin pens instead of an insulin pump. It was difficult to control blood glucose levels because of last-minute activity changes, different food, different eating times, different time zones, and more sports. We accepted the temporary drop to uplift quality of life.
  • Around 2020-Mar, we experimented with the AndroidAPS Autosens feature (or see this OpenAPS documentation). I had high expectations but it did not go as expected. We learned we need to investigate Carb Ratio (CR) and Sensitivity Factor (ISF) before making another attempt.

Result: average daily blood glucose -2.2 mmol/l

Short-term effects of a high blood glucose level are something like increased thirst, headaches, trouble concentrating, blurred vision, fatigue (weak, tired feeling). Unpleasant effects, you want to lower the peaks and averages to comfortable levels. Over the last 15 monthsm we already managed to:

  • Decrease average blood glucose level from 9.3 mmol/l to 7.1 mmol/l  (-23.7%)
  • Decrease average maximum blood glucose level from 14.4 mmol/l to 12.4 mmol/l (-13.9%)

Again, seems like magic, right? A more detailed picture of our journey below.

A night’s sleep without any worries

Sleeping for T1D turns out to be a real struggle. Without alerting and automation whatsoever, this is a real life example when entering a hypo (hypoglycemia):

  • T1D wakes up with a nasty feeling
  • Turns on the lights
  • Fingerpricks to diagnose a hypo
  • Eats a glucose tablet
  • Walks somewhat dazed to the kitchen to eat some bread
  • Brushes teeth
  • Waits 15-30 minutes for the nasty feeling to pass
  • Washes hands
  • Fingerpicks to make sure blood glucose level is rising
  • Goes to sleep again

Time to improve this experience!

Currently our night’s have a much better experience:

  • Before going to bed my girlfriend views her blood glucose level on her mobile phone. If she’s below 5 mmol/l she eats something small.
  • When in bed, AndroidAPS takes care of a hyper (high) and will prevent her from entering a hypo (low).
  • Just to be sure, she is using the app xDrip+, which sounds a loud alarm when she reaches her personal preset value of 4.0 mmol/l (too low).

After tweaking and automating using AndroidAPS, we succeeded in almost no nightly lows (< 4.0 mmol/l) !! The percentile report below shows you how AndroidAPS is handling blood glucose levels at night. In this report you see AndroidAPS pushing her blood glucose level down and keeps it stable within nightly range. Even during weekends when she wakes up later. Again, seems like magic, right?

Source: Nightscout ‘percentile chart’ (standard report)

Keep improving

Our diabetic team in the hospital and people in our close environment are amazed at the pace we are moving. Because it is a do-it-yourself solution, you need to educate yourself. We started with a table format like below to note all setting adjustments to learn from our experience and explain results a few months after implementation.

DateTimeOld valueNew valueExpected result
 … …  …  …  …
 … …  …  …  …

We are strong believers to review adjustments regular instead of a big-bang all at once. This because you want to explain adjustments, which is difficult when they overlap.

For frequent events, you might always have to change the same settings. When you are in the improvement process, remember AndroidAPS has the feature Automation available. To avoid the extra work, you can just try to automate the event if you can specify it well enough to let AndroidAPS handle it automatically. For example, when your blood glucose level is too low, you can decide to start a high temp target automatically. Great because you have to do less manually while still keeping control.

A kickstart for the Dutch

Since December 12, 2019 the Freestyle Libre is reimbursed by health insurance in The Netherlands for all T1D! Remember, it is possible to use only parts of this new DIY APS movement to a level you feel comfortable. For example, the xDrip+ alarm is something I wish for everyone to start using right now! In an upcoming blogpost I will show you the insertion of the Freestyle Libre sensor, the installation of a Nightscout website for data saving/reporting, and the app xDrip+ on your mobile phone for alerting and data upload.  

General parts

Purpose of this series

The idea of the diabetic patient as a crisis manager is outdated. Using a ‘Do It Yourself Artificial Pancreas System’ (DIY APS) you have less to worry about and can achieve a higher quality of life for yourself and your caregivers. When configured properly, the diabetic person may have a healthy HBA1C value. You can start today!

Our blog series is called ‘our journey: from pen therapy to AndroidAPS, a DIY APS’. This T1D series aims to inform the world on current technical possibilities to bring down the effort on (daily) diabetes management activities and be healthier long term.

Follow this blog series to see how you can make a step-by-step shift from pen therapy to a ‘Do It Yourself Artificial Pancreas System’ (DIY APS). A similar project for Apple smartphones is called Loop project. Welcome to the future.

Need some help?

All DIY APS possibilities are developed by the diabetes community since 2013. Most effort in the online DIY APS community is done by volunteers through a pay-it-forward mechanism. Each participant/volunteer has severe perseverance and the will to contribute to the community in their own field of knowledge. Please feel free to contact me on whatever question you may have and request a membership in Facebook groups AndroidAPSUsers / TheLoopedGroup. Happy to help!

About the author

I am Peter, a millennial born in 1984, living in The Netherlands and hope someone will find a cure for type 1 diabetes (T1D) fast. Since my girlfriend was diagnosed as T1D both of our lives rapidly have changed. I became involved as a volunteer on the AndroidAPS project. I commit my IT Service Delivery Management passion to a more comfortable and healthier diabetes-life because of all automation possible since 2013. As a professional, I feel comfortable to deliver value, overseeing all components while managing staff and costs.


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