Tuesday, 26 May 2015

Goodbye sensor one, Hello sensor two

My first sensor easily lasted the 14 days, it was still stuck pretty well with only some of the edges looking a bit scruffy. It feels kind of sad to take it off, but that is how life goes. Pulling it off revealed a lot of sticky glue. Initially I was worried that the sensor can easily just fall off, but after seeing how the glue/adhesive look after 14 days, it made me think differently. It will take more than just a little bump to accidentally loose one of these.

This is how the sensor looks on the "other" side. You can see the small needle looking thing in the middle. It is flexible and not very hard. When you insert the sensor, a larger sharp and strong needle is used to insert the flexible one. A spring loaded mechanism is used to quickly push and pull the needle in and out. The hole that you see in the sensor from the outer side is there in order for the larger needle to be pulled back. Cleverly designed.

I applied some skin-prep before inserting the new sensor. It was again a painless and quick exercise of inserting the new sensor, no blood seen this time. I had a bad night's sleep, so I don't expect my levels to be awesome within the first 24 hours and most likely this post contains many errors.

Friday, 22 May 2015

11 Days with a sensor still stuck in my arm.

Time flies when you are continuously monitoring your glucose levels, almost time to remove my first sensor! The sensor is still stuck and working nicely, although some of the adhesive tape on the edges seem to be lifting. I kept tegaderm on the sensor just in case it decides to get loose. Sometimes it gets slightly itchy around the sensor, nothing major yet, it's going to be interesting to see how it looks beneath the sensor when I have to remove it.

The snapshot report of the past 11 days shows some interesting statistics that I was not able to capture before. After reducing my long-acting insulin by about 17%, I still have some issues with hypo's early in the mornings. This might be due to Lantus peaking at around 4-6 hours after injection. The amount of information available is just amazing, I feel much more in control of my BG levels. Look at my average number of scans / day ... 57 !! Imagine pricking your finger 57 times a day! Impossible, you will be using a whole pack of test strips each day. The FreeStyle Libre simply gives you the freedom to check your glucose as often as you like.

When you have been using only BG finger pricking tests for 9 years, any CGM report looks pretty awesome.  The weekly summary reports provide nice detail about what happened when. I experienced some low's and high's during the night, which I was unaware of. I can see the benefits of having something like the Dexcom G4 that will alert you when such things happen. I'm just wondering why did they not put a small speaker inside each Libre Sensor... just a simple beep would have been sufficient.
On the 17th of May I ate too much after a hypo and it caused my levels to be way too high through-out the night. That error pushed my average for the day up to 9.4, not acceptable at all.
I also realised how much glucose coke contains... in the early mornings of 18 May I had a hypo and only sipped 2-3 sips of coke, you can clearly see the spike that it caused. Yes, I needed that spike at that stage, but I can just imagine what happens to the poor non-T1D that drinks many glasses or bottles of coke.

On the 20th of May I opened a new insulin pen.... and my levels were just not going down as expected. You can see that I injected a total of 39 units (8 shots) on that day, normally I inject about 20 units. At the end of the day I decided to throw away the insulin pen, and open another one. I immediately got much better reaction from the new pen, this was not the first time it happened to me.
I have an update on my 3rd ebay parcel... somehow it was send back to the sender and it never left Germany, so he is mailing it again. If it happens again, I'm asking for a refund. At least the South-African Post Office can not be blamed this time. Currently it's such a pain and expensive to get the sensors in the country, chances of me switching to Dexcom is increasing as you read this. I have tasted the benefits of having a CGM and I'm afraid I won't be able to go back from where I started.

Thursday, 14 May 2015

My FreeStyle Libre experience. Day 1-3.

I waited about 16 hours after inserting the sensor before activating it. According to other users waiting 12-24 hours have an effect on the accuracy of the sensor. I had no issues with sensor accuracy yet, right  from the start it was remarkably accurate. The sensor is very comfortable, no pain at all. I'm almost completely unaware of it.

Thus far, I'm very impressed with the FreeStyle Libre, it will be difficult to go back using only a BG meter. If Abbott does not release the Libre in SA by the end of my sensors, I'll most likely switch to the Dexcom system. You can't really manage T1D without a CGM. The amount of extra information available is just awesome! Just the advantage of checking your levels any-time is great and I almost felt guilty of checking the levels so often, it feels like you are consuming/using valuable resources (test strips?) each time, but actually the information you get is for "free".

Before I begin with my analysis, I'll just give a quick summary of how I treat my T1D. My pancreas does not generate insulin at all, so I have to inject myself with insulin in order to manage my blood glucose (BG) levels. I don't use an insulin pump, I use multiple insulin injections. My BG goes up when I eat and goes down when I inject insulin. Exercise will lower my BG, but it is not enough to control my BG, I need insulin. My body slowly release stuff throughout the day and night that increases my BG slowly, Lantus (Long acting insulin) are used to cover this BG rise. Apidra (Rapid acting insulin) are used to cover my BG when I eat. The black line in the graph shows the insulin release curve of my rapid acting insulin. The red line shows the release curve of the long acting insulin. So, it becomes a complex system to control and balance. The amount of insulin injected must match the amount and type of food eaten, exercise done and body state (sickness and other factors also influence BG levels). I don't do carb counting, it just seems too complex to exactly determine what is in the food you eat, I adjust my insulin amounts by learning from experience.

What have I learned from Day 1 ?

Below you can see the graphs generated by the FreeStyle Libre software, you can export everything to a .csv file which is very handy. The values with asterisks are BG levels tested with blood (test strips), this clearly shows that the Libre is accurate. The other values (shown with small circles on the graph) were collected when I scanned my BG with the Libre.

The spike at 10:00 is because I ate two rusks with my coffee.. I usually have to do this, otherwise I'll hypo soon after 10:00. Without the spike, the downhill from 10:00 - 12:00 will let me crash with a hypo. The question now is, what caused the downhill from 10-12 ?? It can't be the rapid acting insulin that I injected at 7am, because most of that will already be depleted (remember the release curve graph). It must be the long acting insulin, I'm injecting too much of it! Through-out the day my BG is dropping and I have to prevent hypo's by eating snacks at regular intervals. Have a look at Day 2 below, very similar pattern, eating myself out of hypo's all the time.
Lesson learned on Day 1: I need to reduce the amount of long-acting insulin.

What have I learned from Day 2 ?

Wow, look at that hypo during the night. I woke up at 3am and tested my BG. It was low. I've been low for about 3 hours! Without the Libre, I wouldn't have known that. The spike with my two rusks can again be seen at 10-12. This time a little bit lower because I did not add one teaspoon of sugar to my coffee. Remarkable what only one teaspoon of sugar can do! Same pattern of lowering through-out the day can be seen.
Lessons learned on Day 2: a) I'm having long hypo's during the night. b) One teaspoon of sugar is bad for your BG levels.

What have I learned from Day 3 ?

I reduced my long acting insulin by about 17% (4 units). I had another very long hypo during the night and did not sleep very well, resulting in struggling to maintain a good BG level around 9-11. Overall the reduced long acting insulin seems to work better, we will see how tonight goes.
Lessons learned on Day 3: a) I need to stop those night-time lows. b) When you don't sleep well, your BG levels will go up during the day. c) You can trust the accuracy of the Libre.

A summary of your low-glucose events (hypo's) are given in the report. Average duration of 100 minutes during the night !!! Life-saving information gained within 3 days of use, I don't need to say more.

Monday, 11 May 2015

11 May is FreeStyle Libre Day !!

Yes !! I finally have a FreeStyle Libre in my hands. The DHL express parcel containing the reader and 3 sensors were delivered this morning. I also received an unexpected call from the Johannesburg International Mail Centre (JIMC), they found my "missing" parcel ! I drove all the way to pick it up from them, not taking any more risks of them trying to deliver it to me. So, now I have 5x sensors and a reader, still one parcel missing, but I can at least get going with what I have received. 

My BG meter is a FreeStyle Optium meter, which turns out to be very beneficial. The test strips are compatible with the FreeStyle Libre and the reports generated by the software also show the results of your manual BG checks. I'll be using my Libre for normal BG checks as well as CGM style checks when I do have a working sensor on me. My initial thoughts on the report generating software is that it can be very very useful. 
Inserting the sensor was painless, quick and easy. The needle looked a bit scary, but did not hurt at all. Let's hope the needle and sensor stay stuck for the next 14 days. I got some tegaderm and vet tape from Dischem to apply in case the sensor needs extra adhesive. I will try to be patient and wait for 12-24 hours before activating the sensor. I could see some blood coming through the centre part of the sensor, so it makes sense to let the wound heal a bit before activating the sensor. 

Thursday, 7 May 2015

Trying to get a FreeStyle Libre

After reading about the FreeStyle Libre, I obviously wanted one very badly. So do many other people. Abbott launched the Libre in Europe, not yet in the USA (approval in progress) and sadly not yet in Africa. The demand is so high, that new customers in Europe have to go on a waiting list which seems to be at least 3 months long. My initial idea was to let a friend in Europe try to buy it for me from Abbott and then we could arrange for an African delivery... the original plan failed due to the huge demand.

My next step was to jump onto ebay and try to see if I can get the device and a few sensors somehow. Luckily you can find it on ebay, but it comes with a price, the sensors easily sell for double the original price. I took the risk and bought a starter pack (device + 2 sensors) and a few sensors.. Some of them from UK sellers and some of them from Germans. The UK items were shipped to my friend in the UK, who shipped them to me via DHL express. The German parcels were shipped separately via DHL. 

Now, let's have a look at the status of these parcels.

The first German parcel safely departed from Germany,.... and then vanished... not sure where it is now ??
The second German parcel safely arrived in SA, cleared customs and EMS claimed that they couldn't find me in 2009 ?? Now the item is on hold somewhere. I phoned them every day this week, after several hours someone answered and they will "look" for my parcel, or they will "deliver" it tomorrow, or iesh! I still don't have it :(

The UK parcel, still looking good! On track and on time! Let's hope I'm lucky this 3rd time... just one problem, it's not in SA yet, the tracking fun might start when it arrives in SA soon.

Another night time hypo

Just before going to bed (at 21:48), I checked my BG level and my meter gives me a whooping 19.2 mmol/L !! The normal range is between 4 and 6. With a value of 19 you should be getting worried about DKA.
You have the following options:
  1. Do nothing and go to sleep.
  2. Eat something.
  3. Measure the BG level again.
  4. Inject some insulin.
  5. Freak out.
  6. Test for ketones.
Let's consider what can happen with each option:
  1. This might be a dangerous option, the level might be rising, who knows. You might wake up feeling crap with a 20+ morning value, or you might just go into a coma while sleeping, or you can end up feeling okay but lots of nerves were damaged during the night that will kill you in the long-run.
  2. Eating something will most likely increase your DKA/coma/damage risk....
  3. This might help just to confirm that your BG level is very high, but it might cause an endless loop. (Measuring your BG level and then again and then again and then again ... )
  4. Probably a good option, but how much insulin ?? If you knew the rate of change, then it might be possible to calculate the amount needed more accurately. 
  5. It might provide temporary relief, but it's not really going to change anything for the better.
  6. Also a valid option, but you need to have ketone test strips, which I don't have at the moment. You also need to select another action after performing the test.
So, I went with option 4. I decided to inject a small amount of 4 units (Apidra, rapid acting). Being aware that I need to try and sleep and don't want to experience a hypo while sleeping, I ate 100ml of yoghurt and a guava. Basically taking option 2 after option 4. Just in case 4 units were too much, I made sure there was something in my stomach that will release some glucose for a short while. I thought I covered every scenario and everything is set for a good night sleep...

.... wrong ..... at 0:30 I woke up covered with sweat all over, literally dripping from my face, body, ... 
As seen in the image, my BG level dropped to 2.1 mmol/L. I took a few sips of golden syrup and a few glucose sweets and went back to sleep. This is why you will always see a golden syrup bottle next to my bed and in my car. The syrup saved my life more than once during severe hypo's.

If someone you know with T1D happens to have a severe hypo, grab a bottle of syrup and squeeze it into their mouths, even if they try to resist you. Don't trust anything the person say, just get enough syrup into his/her mouth until they snap out of it. 

Wednesday, 6 May 2015

Why do I want a CGM ?

CGM = Continuous Glucose Monitor

Imagine you are flying a plane in the dark with only an altimeter to provide you information about the height above ground of the aircraft. You don't have any instrument that can tell you the rate of climb/descent. During your entire flight, you can only look at your altimeter 5-6 times... and you don't have an auto-pilot system that will maintain altitude. Seems like a nightmare ? Probably very difficult to safely guide the plane to your destination. Each time you have a look at the altimeter, you will have to try and guess how to correct. You might get a desired height above ground reading, but maybe you are descending rapidly ? or climbing ? or flying level ?? This scenario compares well with how a T1D has to manage glucose levels with only a BG meter. Test strips are expensive and limited, if you use more than 5-6 a day you will quickly deplete your monthly supply.

So, here goes a list of CGM benefits:
  • Continuous readings, every X minutes. No more limited to 5-6 a day. You can check the altimeter constantly.
  • Rate of change information available. No more guessing if we are climbing or descending.
  • Warning of going too low or getting too high. This can avoid a lot of hypo's and prevent the aircraft from crashing. 
  • Much better glucose control, will improve A1C a lot. ETA much sooner, flying in a straight line is faster than going up and down all the time. Thus, reduction in long-term damage / side-effects.
  • You can show the people that don't have T1D what certain foods actually do to BG levels.
  • It's cool technology!
  • If I happen to be hospitalized for whatever reason, the CGM will help keeping track of my BG levels... Sorry, but I just don't trust the hospital staff to care for my BG levels. When I was hospitalized due to a broken jaw in 2012, the nurse just could not understand why I wanted to check my BG level every 1-2 hours..
  • Physical exercise! Well, it gets very difficult to track your BG and avoid hypo's during and after exercise with only a BG meter. CGM should help tremendously.
  • My family will feel a lot more relaxed when I'm alone or travelling with a CGM. The CGM will be my sugar buddy, alerting me when getting close to a hypo.
  • Big Data ! Collecting data every day will allow me to train some deep neural networks on the data, it might be able to predict my future BG levels and reduce the latency issue that CGM's have.
Although the FreeStyle Libre is not really a CGM because you need to scan the sensor, I still see it as very close to a CGM, you just don't get the warning/alarm signals that the Dexcom will give you.

So, why don't I have one yet ?
  • Difficult to get them in South-Africa.
  • The postal service is .... not working ..... difficult to actually get one in your hands even if you try to import one.
  • The device is expensive, the sensors are expensive as well.

Tuesday, 5 May 2015

My T1D survival kit

I'm starting my T1D blog at www.freestylelibre.co.za with the hope that Abbott will somehow someday release the FreeStyle Libre in South-Africa. 

This is my current "primitive" T1D survival kit.. without some of it, I will quickly die. Yes, T1D can not be controlled with only a diet and exercise, I need the insulin, I'm not resistant to it and I'm not overweight (never was). I have been diagnosed in 2006 when I had a sudden onset of symptoms such as extreme fatigue, blurred vision, weight loss (63kg down to 55kg within 1-2 weeks),...

The device in the black pouch is my FreeStyle Optium Blood Glucose (BG) meter. By using the long black and white tool + needle, I can prick my finger in order to donate some blood to my BG meter. Usually my BG meter will return a number, indicating my current BG level in return for the small blood donation. This only gives the current BG level, no clue if it is going up or down... (I want a CGM...)

The blue pen-like object with a needle at the end is my Apidra (rapid acting) insulin, I inject this into my abdomen area at least 3 times a day. It depends how many times I eat. The greyish pen-like object contains my Lantus (slow acting) insulin, I inject this 2 times a day, in the morning and before I go to sleep.

In the centre you can see the 8mm BD micro-fine needles that is screwed onto the Apidra and Lantus insulin pen. The orange box contains an emergency kit that can be used to rapidly increase my BG levels in case I am unable to consume some sugar during a hypo. (Hypo is when your BG level drops below the normal range and requires immediate attention). Hopefully the orange box will never be used. I had several extreme hypo's in the past, luckily family members were always nearby to rescue me from a coma.

Above you can see the damage caused by thousands and thousands of finger pricks.

I have not included all the food that I consume when experiencing a hypo, just too many, I always try to have at least a few glucose sweets on me.