Testing, testing Part 1

My intention when starting this blog was mainly to have fun, partly to create a diary of my runs in 2019, partly to raise more money for JDRF, and last but certainly not least – to raise awareness of Type 1 diabetes. So many people have no idea (or the wrong idea) about Type 1 diabetes. This post is all about testing your blood glucose.

When you have Type 1 diabetes you need to test the level of glucose in your blood regularly through the day, and sometimes the night. I’ve written before about how insulin regulates the levels of glucose in the blood. But if you are dependent on injections of insulin then you have to do the monitoring yourself.

In the old days this was done in a very crude way – there were no home blood test available, they were only done in hospitals. People with Type 1 relied on urine tests – if your blood glucose is high glucose and ketones appear in urine. This is how I remember my dad testing his glucose at home decades ago. The test strips would change colour according to how much sugar was in the urine. But it is not accurate, and it is not reliable. Glucose will only be detectable at quantities above 10mmol/L which is already well above the recommended range.

Testing urine with the dipstick

Then home blood test kits became available requiring a finger prick to produce a drop of blood. A small strip of special test paper is soaked in the blood and which is inserted into a handheld machine to produce a reading .

Finger prick blood testing – thousands of times a year

Although this is better than the urine ‘dipstick ‘ method it has its drawbacks. The machine needs to be regularly re-calibrated; you need a constant supply of test strips; and you need to be constantly pricking your finger – not much fun. But this is how most people in the UK and across the world have to test their blood glucose. Remember – there are thousands of children (and adults) doing this many times every day.

Now we have the Continual Glucose Monitor (CGM) which attaches to your skin, maybe on your tummy, your arm or leg. My favourite Type 1 blogger/vlogger Miss Jen Grieves talks about hers here. CGM’s are life changing because they mean you can check your blood sugar anytime, anywhere without having to do a finger prick test. In the UK it is not available to everyone because NICE guidelines are evidence based and currently the evidence does not show a benefit (in terms of glucose control) except in certain cases. In the USA it is much more common for people to have a CGM – IF they have health insurance that covers them. A big if, because many people in the USA do not have this level of health insurance.

The CGM sits on the skin with a sensor inserted into your body to monitor the level of glucose in the blood

My friend and colleague Helen got a CGM last year. I asked her to write something about it. She wrote the following:

” Diabetes;  Greek translation “siphon” Ancient physicians  would ask ailing patients to urinate in the sand…if the ants were attracted to the sugar laden urine, then diabetes was identified.
Thankfully we have advanced. Now we have “flash” technology. 
I wear a small disc  inserted in my arm. When I want to check my sugar level, I simply swipe my disc with my mobile phone.
Whilst I am not old enough to have been diagnosed with Type 1 diabetes in ancient Rome – I have been diabetic for 30 years, and have used  a range of devices to measure my blood glucose – constantly pricking finger tips (and ear lobes!) to measure blood glucose.  Machines which did not work in the cold, or the heat, or with low batteries,  or without calibration, etc.
Whilst being diabetic is stressful in itself – being in a situation when you really need to know your blood glucose, is for me, the most stressful aspect.
So whilst the artificial pancreas is a while away- for now, I am delighted with the advances that flash technology has made to my life. I may not always like my blood glucose readings but at least I know….in a flash.”

Insulin pump – this means that you don’t have to inject insulin manually – the pump does it directly

Most people use an insulin ‘pen’ to administer their insulin. Some people have a pump which you can programme to provide the insulin for you. You still need to do blood tests, and you still need to calculate your insulin. They have been shown to help with better blood glucose control, but they are not available for everyone. And may not be suitable for everyone.

The next advance in technology to support people with Type 1 diabetes is a CGM and a pump that can ‘speak’ to each other – in effect the CGM ‘tells’ the pump how much insulin to release into the blood stream. Known as an artificial pancreas or closed loop system this provides greater freedom for the person.

I asked my sister Charlotte to write something about having a CGM and an insulin pump in a closed loop system. This is truly ground breaking and is not available to everyone as research is on-going. The following paragraphs are what she wrote:

“Over the last few years I have done on average 6 blood tests every single day which means over the course of a year somewhere in the range of 2,000. So, since the mid 1980s, when home blood glucose testing became available to the public, I have done somewhere in the region of 70,000 blood tests! Eeek!

However, the good news is, I rarely do blood tests now – ever since I started using a Dexcom G6 continuous glucose monitor (CGM). The CGM is a small device which is attached to my body, usually on my tummy, but can also be attached to the back of the upper arm. The results are transmitted continuously to an app on my cell phone and show movement up and down, and also alert me to any highs and lows. The great thing about the Dexcom G6 is that it doesn’t even need to be calibrated unlike earlier models – so no need for a manual blood test.

As if this wasn’t amazing enough, I am currently taking part in a research study of the new “artificial pancreas” at Mount Sinai Hospital in NYC. This means that every 5 minutes my CGM transmits my blood glucose directly to my insulin pump which can then make decisions on its own about how much insulin I need, and can either shut it off altogether if my BG is going low, or can add extra if it appears to be going too high.

I feel very fortunate, as the CGM alone made my life so much easier, but now combined with my insulin pump, the “artificial pancreas” has completely changed my life!

After nearly 44 years of living with and trying to control my diabetes, I finally feel like I am not having to work alone to be the “over achiever” that I like to be! I have always been someone who wants to be within my target ranges and now my “artificial pancreas” has taken over a lot of the work for me. Now I just have to learn to trust that it will do its job, something that is getting easier by the day, as the results I’m seeing are amazing.”

What everyone really wants is a CURE for Type 1 diabetes. But in the meantime we need better ways of managing control of blood glucose. Better in terms of keeping it in the right range to prevent complications such as blindness or kidney failure. And better in terms of quality of life for people – eventually constant pin prick blood tests and injections will be a thing of the past, and the artificial pancreas will (hopefully) be available for all who need/want it.

A big thank you to Helen and Charlotte who contributed their experiences. Testing Testing Part 2 will include contributions from a young person with Type 1 in Kenya.

Thank you for reading this post. If you would like to help JDRF fund research into a cure for Type 1, or research into better ways of managing it please follow this link to my fundraising page. Thank you to all who have donated already.

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