Things I've Learned about My Diabetes with a CGM

I have been using a Continuous Glucose Monitoring device (CGM) for six months and I feel that I have enough information now to share what I have learned about my diabetes management in those short months. A couple of weeks ago I shared how I came to get my hands on this little golden nugget and you can read about that here.

So here it goes, in no particular order, what I have learned.

Rapid acting insulin is not that rapid at all!

If my blood sugar levels dare to go ⇑ and beyond, it could take up to 4 - 6 hours for the insulin to bring them back to normal. It is a major exercise in patience!!! And can lead to rage bolusing (i.e. getting extremely frustrated and bolusing more that reason dictates).

Before CGM, I would take a correction dose of insulin, go to bed, only to wake up in the morning to realise that it hadn’t lowered my levels as much as I had hoped and I had spent at least 8 hours with elevated blood glucoses levels.

Hypo treatments don’t work fast either.

Glucose, even in its purest, most rapid form doesn't work fast enough. This can lead to over treating but thankfully the CGM can help curb the overtreatment.

Angle of Arrow Interpretation ⇑⇒⇓⇖⇗⇘⇙

Interpreting what the angle of the arrow next to my blood glucose reading, means in terms of where my blood sugar levels are heading is not that easy but after a bit of trial and error can be achieved.

The alarms can be annoying.

The alarms! The alarms, in the beginning, were, can be annoying and did interrupt many nights of sleep. But they are there for a reason. And very good reasons at that.

The alarms are very useful learning tools.

I tried not to get frustrated with the alarms, especially the low glucose one, which I have set at 4.4mmols. This give me enough time to prevent an actual hypo and I’m still rational enough to decide how to deal with the impending train wreck.

Mostly I use the alarm as learning tool on how to adjust my insulin dose to avoid them. And it’s worked. Six months ago my high blood glucose alarm was set at 16.6 and now I’ve gradually brought that down to 13.3, it only very occasionally goes off (touch wood). They are especially helpful for dealing with days out of my routine and for food that I don’t have very often.

I’m self conscious about my gadgets and gizmos.

Since the weather warmed up I’ve been wearing short sleeves and my sensor, which is placed on my upper arm, attracts a bit of attention. This does make me think about wardrobe choices a bit more and if I really want to talk diabetes.

I sleep less.

This is both good and bad. Bad because I might be woken several times a night because of the alarms and good because I know that I will never have a hypo again without being aware of it. Sleeping through hypos was a huge concern of mine and the reassurance that my CGM gives me is invaluable.

Sometimes my CGM is not reliable.

Just like any other piece of technology I have noticed that there are times where I should double check my CGM reading with a finger prick check. The times this most often happens is usually the first day of a new sensor and when my blood glucose levels are rising quickly or falling quickly. So I still do 7 finger prick tests a day.

My blood glucose levels are within their targets 65% of the time.

Finger prick blood glucose tests give you a snapshot of where your levels are at that point. The CGM tells you where your blood glucose levels are ALL of the time. It’s the difference between having a photo or seeing the whole movie/book. Now that I have a starting point I can try to increase that percentage and spend more time within a healthier blood glucose range. I also appreciate knowing that number is over 50%.

My CGM does influence my behaviour.

That little graph display does influence my behaviour around food and it also helps me stem the spike in my post meal blood glucose levels. It influences decisions about my treats, such as helping me determine should I choose a full bar of chocolate, just 2 squares of the good dark stuff or on warm sunny days the ice cream. My cgm really helps me spend more time within my blood glucose target range.

It has helped reduce my HbA1c!!!

Yes! I had my lab work done at the end of May and I have had the lowest HbA1c that I have had in four years and the time before that I maintained close to this level while I was pregnant with my first child 12 years ago. I have not been able to stabilize this level at any other time. I have been using an insulin pump for 6 years and hadn’t achieved a lower number. Insulin pumps should be available to those who want them and it should be very much about a personal choice. But CGM’s, in my opinion, are way more valuable a tool for managing diabetes and should be strongly encouraged. Even if it’s just for a couple of months. I know they are expensive but in the long run they would reduce the number of hospital admissions for both hyper and hypoglycemia.

All in all, I am never giving this device up! Knowing where my blood sugars are at any given time has been so reassuring and relieved so much anxiety.

On a promotional note, I attended a presentation by Thriveabetes 2016 keynote speaker, Gary Scheiner on "Making the Most of Your CGM" where I learned lots of useful information and he has published a book on it, "Practical CGM". You can register for Thriveabetes 2016 here.

How I got a CGM

The end of May marked six months since I got CGM'd. WOW! It just flew by. 

After two years of persistence, I finally got my CGM on November 27th 2015. When I announced this on social media I has a number of queries about how I managed to get approved and how difficult others were finding their quest.

As always, the one thing that the diabetes community is brilliant at, is sharing knowledge through our personal experiences for the benefit of others. So, here is the story of how I came to have a CGM.

How did this quest begin? Well, it began with an insulin pump (and that was another long drawn out "quest") in June 2010. I wrote about that journey here on 29th March 2011.

I use the Animas Insulin Pump and as soon as Animas announced that they were rolling out the Animas Vibe with CGM integration in the UK and Ireland, I was on it like sticky on a toddler.

My pump was due for an upgrade in 2014 as the warranty runs out at 4 years and because the pump software would not continue past January 2016. I called my Animas rep to find out how, or if there was a chance that I would get a Vibe as part of this upgrade and she said yes! Great! But wait!

Hiccup no. 1. However, between hearing this information and my next appointment at my endo's office, my Animas rep, the only Animas employee in Ireland at that time,  took a 12 month sabbatical. That combined with having only 3 visits per year to my endo doesn’t give me much of a chance to get things done. I did get my Vibe in June 2014 and immediately started chasing down how to get the CGM component.

Hiccup no. 2. My Animas rep returned from her sabbatical the following August BUT then my fabulous endocrinologist left her position at the hospital I attend! I decided to use this opportunity to migrate back into public health care for my diabetes. My children were both in primary school and it was doable to fit clinic visits during school hours. I had also heard of a clinic that was only a one hour drive away that had an insulin pump clinic and DAFNE. 

Hiccup no. 3. Fifteen month waiting list!!!!!!!!!!!!!!!! Not kidding! By the time I got my referral sorted out to my new clinic and waited I had been without medical care for 11 months. I was doing fine but I was starting to get a wee bit unsettled. Thankfully, when I called to chase up my referral they squeezed me into the Type 2 diabetes clinic in April 2015 but at least I was in and on the books.

June 2015 - I set up a trial before purchase with a Dexcom CGM for two weeks and I was hooked. And now I had data, with the help of my mathematical husband, to strengthen my case for getting one permanently.

October 2015 - I presented my case and there were a couple of breakdowns in communication but the paperwork was put through to apply for funding approval from the HSE and on the 27th November I was live on a CGM permanently.

It took 17 months to complete this quest, that in the end when I had convinced my diabetes team why I wanted one took 6 weeks. Unlike an insulin pump, the training and education required before a patient goes live on a CGM is minimum. 

In February 2016, an additional piece of this quest was completed and that was the reimbursement of the monthly supply of sensors which comes not from the Core List F of diabetes supplies and medications included in the Long Term Illness Scheme but on the Special Product List. See here for more information.

And that is the complicated story of how I got a CGM. My next post will focus on what I have learn about managing my diabetes by using it and how I will be taking it to the grave with me.

If you want to find out more about what is a CGM (Continuous Glucose Monitoring) device is, watch here. There are two available in Ireland at the moment; the aforementioned Dexcom (with or without the Vibe insulin pump) and the Medtronic RealTime Guardian CGM. The newer Medtronic pumps all come with CGM compatibility but you can get the CGM component without getting an insulin pump.

The Blood Sugar Train Wreck

This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato. This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I'm just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)

My Day in Food

This week I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes. My Day in Food - Wildcard

WARNING - this post will be boring!!!

I feel like I’m the only person with diabetes in the world who doesn’t cook. I hate cooking!!! It goes back to my childhood where as the eldest girl it was expected that I would cook and I do NOT like being told what to do. 

It was also enabled by my husband, who when we met was vegetarian - I was reared on meat, potato & veg. I also am not a big fan of the spud either - am I really Irish!?! Anyways, he insisted on cooking and I didn't put up much of a fight. 

So here’s what someone with diabetes, who does NOT cook, who would be me, eats on an average day. And it will be, as expected, very boring!

Breakfast: Most mornings I go for the low calorie porridge. On weekends I go crazy and have 2 slices of wholemeal toast (dripping in butter😋😋😋) with two cups of tea. Can't function without a cup of good old Irish tea.

Mid Morning Snack; At least 2 cups of Coffee ☕☕ 

Lunch; Weekdays; Salad, protein, rye crackers for crunch! 😋😋😋😋 And a piece of fruit - whatever’s in season. On weekends; 2 egg omelette with whatever is in the fridge plus cheese, a slice of bread & a piece of fruit.

Mid Afternoon Snack: Tea this time. ☕☕ at least

Dinner: Could be anything! I am married to a wonderful man who DOES cook and is very, very good at it. In exchange I do LOTS of dishes - it’s actually in our pre-nup. This dinner is wholewheat spaghetti with a cooked from scratch tomato and a smoked sausage called cabanossi. And it was DE-licious!

Dessert: Every evening I have a little something nice like Chocolate or ice cream. Plus a last round of Tea. I know, I know but there are worse things out there and I don't have problems sleeping - so why not!

And that’s it! Like I said, it's not very interesting but it has minimum impact on my blood glucose levels and it's what I like and what works for me. Find what works for you:-)

The Sneaky Low

I hate when the hypo just comes out of nowhere and hits you hard! It a very rare occasion that I have a hypo around lunch time. But yesterday, totally unexpected and without hardly any warning a 2.6 mmol/l (46.8 mg/dl) knocked me for 6.

I had been working upstairs doing light household chores. I decided to take a break and make some lunch because my CGM alarmed telling me that my blood sugars were 4.3 mmol/l (77.4 mg/dl) and I felt a bit on the shaky side but not much.

I threw a lunch together and sat down to check, dose & eat. WHAT!!! 2.6!!!!!! Then I realised not only was I actually shaking but I was sweating profusely. I decided to hold off on my lunch, which was low carb and protein - not a good start to treating a hypo, and I quickly chewed 3 glucose tablets.

I stepped away from my lunch to allow the glucose to kick in without obstruction from protein. I can’t believe I was that rational!!! Then again, I couldn’t figure out what I should do with my insulin dose - I should obviously reduce it a little. But should I include the glucose tablets in my carb count.

Fifteen minutes later I was still shaky but I think my brain was pulling itself together again. I checked my blood sugars again and I was 3.9 mmol/l (70.2 mg/dl), the food was sitting there waiting for me. I decided to put it out of its misery.

I took my reduced insulin dose at this point. It seemed like the right thing to do to avoid the low blood sugar rebound. I knew that the sweating had stopped because I got the chills but the shakes were still there and didn’t quite go away for about 30 minutes.

I did have to top the carbs up twice over the next two hours to keep my blood sugars in the safe zone which was another unusual circumstance for me.

The lesson learned today is to not to try to sneak household chores in before lunch! And always use diabetes lessons to avoid household chores :-D

A Day of Diabetes - A Not-So-Good Day!

As promised, the Not-So-Good Day of Diabetes.  When I was trying to decide which "Not-So-Good Day" experience to post about, I had too many to choose from. On this occasion I choose this one because it's not all to do with diabetes. It's the other stuff that affects diabetes or vice versa.

When I wrote this post I hadn’t had an uninterrupted night's sleep in about 4 nights. It’s my diabetes but it’s not just that. It’s the decisions I make too. Like to have 2 squares of chocolate with insulin just before bed. It’s my son having very loud dreams and it’s words in my head that need to go in a blog post that I’m compelled to record in the middle of the night.

The other night, for example, I attended our local diabetes support group meetup. I’m always wound up when I come home from those because I get to hang out with some members of my tribe. So, I have a cup of herbal tea and chat it out with hubby. I got to bed a bit later than usual. And then, I realised that I had to do an insulin pump set change. Ahhh!

About an hour later, I could hear noises, always freaky but at least I wasn’t the only adult in the house and it didn’t lead to a panic attack. After a couple of minutes of intent listening, I figured out that it was my son in the next room who talks in his dreams… very loudly. I listened for a couple more minutes to make sure he wasn’t in a terrifying battle with a velociraptor or something. He wasn’t and I tried to get back to sleep.

Another short time later, I woke up with words in my head that related to a blog post I had been working on earlier that day (not this one) and I had to come downstairs to my laptop to get them out of my head so that I could fall asleep.

So far a series of un-diabetes calamities. That is until 3am. My Continuous Glucose Monitor alarm went off to let me know I was below the low limit. Up, test, take glucose. Thankfully it was just 4.8 mmols/l (86 mg/dl) so not a hypo but a warning of a hypo.

Next up 4am, low blood sugar alarm goes off again. This time I just took glucose tabs without testing and went back to sleep.

While technically, this is a not so good night but I don’t hold out much hope for the rest of the day.

Later in the afternoon it was hypo time again. My blood sugars just would rise above 3 & 4 mmols. The result is a very queasy tummy at almost dinner time.

Being tired does not help diabetes at all.