The Myth of Carbohydrate Counting

The myth is simply this:

“If you can accurately count the grams of carbohydrates in your meals, you can control your blood glucose levels”

It is a nice idea and one that many hold on to, including health care professionals. When I needed to start taking insulin for meals, the parting words of my endocrinologist were “You know how to carb count, right?” I have heard tales of parents, caring for their type 1 child, taking a weighing scale wherever they go, weighing food to the gram to calculate the total carbohydrates.

An obsession with carbohydrates, while understandable, can set up an unhealthy relationship with food. I have spoken before on the risk of mental health issues, such as  orthorexia, which comes from unnecessarily strict diets.

The myth reflects a reality in diabetes that very little is straightforward and simple with this disease.

The Carb Counting Process

If we take the process of counting carbohydrates and then calculating how much insulin we need, it goes something like this:

  • We get served a meal we intend to eat
  • Based on the contents, and nutrition guides, we determine how many grams of carbohydrates there are in the meal
  • Using a IC ratio (the number of grams of carbohydrate needed to offset a specific number of units of insulin) we administer the right number of units of insulin to counter the carbohydrates.
  • Our blood glucose levels remain perfectly steady and never, ever, go too high or too low

Sadly, many people who follow this process do not achieve the last point. Here are some reasons why.

Problem 1: Many, Many Factors Affect Blood Glucose Levels

There is a good reason why a meal on one day can have a completely different effect on blood glucose levels than on another day. Diatribe identify 42 factors which affect blood glucose levels, the vast majority of which are independent of meals and their composition.

Problem 2: Not All Carbohydrates Are Created Equal, Not All Meals Are Created Equal

15 grams of sucrose will hit the bloodstream faster than the carbs in a slice of white bread (also, approximately 15 grams). Eating a slice of white bread with butter will hit the bloodstream differently than eating it without butter (even though the carb count is practically the same).

The glycaemic index tries to quantify “carbohydrate speed” but this only measures single items of food e.g. an apple but not mixed meals e.g. an apple with cheese. Combine this with pre-bolusing (depending on the insulin, we may need to administer the insulin well before the arrival of the food) trying to match the peak activity of the insulin with the emptying of the carbs into the blood and we can see there is a fair amount of art to the science.

Problem 3: Food Labels Are Not Perfectly Accurate

Putting aside the fact that some food items do not even carry nutrition guides e.g. beer bottles, fresh fruit, restaurant meals etc. even the items which do are not bulletproof.

NIST suggest the error margin for carbohydrates on nutrition labels is 2-5%. So that slice of bread, taking 15g as our “middle value” has between 14g and 16g of carbohydrates in it. The larger the number of carbs, the larger this range. So do we bolus for 14, 15, or 16g of carbohydrate? Do we need to measure to the gram when the labels are this inaccurate? Then there is the question of fibre…

Problem 4: Total Carbs vs Net Carbs

Here is a nutritional label for a popular brand of white bread in Australia (perhaps it is a personal bias but I find Australian food labels much easier to read than, say, US ones)

For two slices of bread (one serving), we have:

  • 31.1g of carbohydrate of which 2.2g are sugars
  • 5.2g of dietary fibre

On US food labels these two values are combined to form “Total Carbohydrates” so, in the US, two slices of this bread would have 36.3g of Total Carbohydrates as opposed to the 31.1g of “Net Carbs” we see here.

So which do we use for two slices of bread? 36.3g (error margin plus or minus 1.8g) or 31.1g (error margin plus or minus 1.5g). For me the answer is clear. Dietary fibre, while chemically a carbohydrate, cannot be broken down in the gut into glucose and passes through undigested. So bolusing for it makes no sense and it is Net Carbs we need to embrace. There is also the issue of sugar alcohols but let us assume, for simplicity, our meals do not contain significant amounts of these.

Problem 5: Calculating the IC Ratio is Problematic

To accurately work out the IC ratio, the only way I can think of to do this with any level of precision is to

  • Work out the carbohydrate sensitivity (how many grams of carbohydrate are needed to change blood glucose by a fixed amount)
  • Work out the insulin sensitivity (how many units of insulin needed to change blood glucose by a fixed amount)
  • Assuming it is the same fixed amount, divide the grams by the Units. So, for example, if I know 16g of glucose tablets raise my blood sugar by 1mmol/L (18 mg/dL) and I know it takes 2 units of insulin to lower my blood by the same amount, my IC ratio is 16/2 = 8.

We know we have an error margin of 2-5% with the carbohydrate amount. So what about the other factors?

Assuming we take the perfect reading (clean hands, ideal temperature etc.), glucometers are considered accurate if 99% of readings are within 15% of the lab result value.

Insulin pump delivery is accurate to within 5% and it is probably fair to assume injection by pen or syringe has a similar level of accuracy.

With all these error ranges, we can calculate how accurate a calculated IC ratio really is.

For our carbohydrate sensitivity we have 16g (error margin of about 0.5g) raising our blood glucose by 1mmol/L (error margin 0.15mmol/L). So the actual value lies somewhere between 15.5/1.15 = 13.5 and 16.5/0.85 = 19.5 (some rounding applied to keep numbers friendly).

For our insulin sensitivity we have 2 units of insulin (error margin 0.1 Units) lowering our blood glucose by 1mmol/L (error margin 0.15mmol/L). In this case the range for our insulin sensitivity is between 1.7 and 2.5.

Combining these, our IC ratio falls between 5.5 and 11.5. That is quite the range and means the amount of insulin required to cover a fixed amount of carbohydrate could literally be double the value we think it is and there is no way to know what is correct because of the inherent uncertainty in the measurements.

So Where To From Here?

Clearly, we need to keep using insulin so what do we do? The first step is to embrace the uncertainty and to accept, for all of the reasons above, sometimes there are going to be bad days where blood sugars misbehave.

We could go ultra-low carb but, for me, this is simply not practical, nor desirable. I enjoy eating at restaurants with family and friends even when no nutritional tables are available nor ultra-low carb options. I travel for work and have meals as part of that where keeping to, say, 32g of carb per day is almost impossible.

For someone without a Continuous Glucose Monitor (CGM), the best they can do is make the best guess for their IC ratio and periodically finger prick to see how it went. Courses like DAFNE can help with guessing the right amount of insulin to use.

For the most part, I stick to “lowish” carbohydrates i.e. I look for lower carb options when out and about but manage the spikes and understand the occasional high will NOT do me damage, it is simply part of having type 1 diabetes.

Because I do use a CGM, for the highs, I have a two-pronged attack. Firstly, I am running a loop (Android APS). This suspends glucose delivery when I am low and constantly adjusts the rate of insulin to try and keep me at my target glucose level (currently 6.0 mmol/L = 108 mg/dL). Android APS is very clever at automatically detecting meals so I generally do not declare carbohydrates when eating. This is not the recommended approach with Android APS but, so far, it seems to be working ok. This being said, insulins cannot always keep up with food so I also “Sugar Surf” with mini-bolusing to assist the loop. With this approach it is important to be mindful of the “insulin on board” levels as we do not want to combat the high only to induce a severe low through insulin stacking. This approach would be very dangerous without knowing the levels of insulin on board which, for me, is provided by Android APS.

For finding a workable value for the IC ratio which, those of us who use insulin need to do, it is a case of trial and error. Nightscout, my open source blood glucose tracker on the web, has an “AutoTune” feature where it can analyse your blood glucose results for a period of time and provide a “best guess” for values such as the IC ratio. Similarly, Android APS has graphs for sensitivity, insulin on board levels and departures from the expected insulin/carbohydrate behaviour to inform adjustments to values. Also, setting different IC values across the day, and periodically reviewing them to make sure the value I am using is still useful, keeps me from having too many highs and lows.

Conclusions

Carb counting is not bulletproof. While a useful tool to have in the toolkit, it is not the only one available, nor should it be seen as the only one that matters. There is an inherent level of inaccuracy in carb counting and this means, without other interventions, blood glucose will fluctuate and occasionally go where we do not want it to.

Other tools available to us are eating low carb, if practical, exercise such as a walk post-meal can help, and insulin intervention delivered manually using techniques such as Sugar Surfing, or automatically via a loop can also assist.

Find the tools that work for you and understand nothing is perfect, including blood glucose levels and accept that while diabetes cannot be perfectly controlled it can, in the long run, be very effectively managed.

My Poster for ATTD 2022

Being part of the dedoc voices (https://dedoc.org/voices); a group of online advocates for people with diabetes who attend diabetes conferences and pass on what they learn to their respective communities gave me the opportunity recently to attend ATTD 2022, one of the largest and most prestigious conferences in the diabetes research calendar.

I had attended virtually last year and this had the unintended consequence of being added to the conference mailing list. While most emails advertised presentation by conference sponsors, about a year after attending, I received a “call for papers for ATTD 2022”. While not an academic in the field, I wondered if the subject matter of one of my blogs would make for appropriate content at the conference. So I submitted my blogs (here and here) on merging the reconciliation reports for Type 1 and LADA. To my shock and delight, it was accepted as a poster for the event.

Once dedoc discovered my submission had been accepted they also offered to fly me to the conference in Barcelona, Spain to promote my poster at the conference as I was the first dedoc voice who had a poster accepted for the event. Not only would I be participating in the conference, but I would also be there in person, rubbing shoulders with the greatest minds in diabetes research. It was very exciting. I set about putting my poster together which was simpler than I thought. I literally used Microsoft Visio to create the flow diagrams of my poster and Microsoft PowerPoint for the poster itself. It could not have been easier. With the generous help of others in the dedoc community with experience at submitting and reviewing academic medical posters, I put together something worthy of the conference.

The idea behind the poster was simple. In 2020, an international expert panel released a consensus report for the diagnosis and treatment of LADA (Latent Autoimmune Diabetes in Adults), also known as Type 1.5. A year later, the American Diabetes Association (ADA) and the European Association for the Study of Diabetes (EASD) released a consensus report for the diagnosis and treatment of Type 1 diabetes. Given LADA is often considered a sub-type of Type 1 it is reasonable to expect the two reports to have consensus with each other, but they did not.

The poster sought to reconcile the two reports and, in doing so provided a flowchart for the diagnosis of diabetes across multiple types of diabetes.

Starting with someone showing classic symptoms of uncontrolled diabetes (thirsty, rapid weight loss, tired, frequent urination) the patient is first testing for auto-antibodies. A positive test immediately confirming Type 1/LADA. If negative, the age of the patient is considered. If they are less than 35 years old, and show signs of monogenic diabetes (MODY) such as a parent with diabetes and a relatively low HbA1c, combined with a medium to high c-peptide level, then genetic testing should be used to confirm or rule out monogenic diabetes. Next, we consider if there are typical Type 2 features such as an increased Body Mass Index. If so, we consider it as ‘provisional’ Type 2 and monitor the c-peptide levels every 6 months. If the c-peptide levels remain above 600pmol/L we consider them Type 2. If the levels drop below 300pmol/L, or there are not features of Type 2 diabetes, we assume it is Type 1/LADA without the presence of auto-antibodies.

For the first time, we have a diagnosis flow diagram for diabetes starting with a patient with symptoms, but an unspecified type, and we move through a series of tests to arrive at a diagnosis of MODY, Type 1/LADA, or Type 2 diabetes. For patients where it is still unclear whether it is Type 1/LADA without auto-antibodies or Type 2 diabetes, we have a clear cadence of checks until the right diagnosis is revealed.

From there, the reconciliation of the consensus reports led to a second flowchart for the treatment of Type 1/LADA and Type 2 diabetes. For Type 2 diabetes, the treatment is as specified in the consensus report for the management of Type 2 (also released in 2020). For Type 1/LADA, the results of the c-peptide 6-monthly checks inform the treatment. If the c-peptide levels are greater than 600pmol/L then the treatment follows the Type 2 protocol, with the recommended exclusion of sulfonylureas. If the c-peptide levels are 300-600pmol/L then the ‘LADA protocol’ is used which recommends the use of metformin with other adjunct therapies, depending on the presence of cardiovascular or chronic kidney disease. These adjunct therapies include DPP-4 inhibitors, GLP-1 receptor agonists and, if the HbA1c is sufficiently high, insulin (basal and/or prandial). If the c-peptide levels are less than 300pmol/L, the ‘Type 1 protocol’ is used which is effectively identical to the LADA protocol but specifies the immediate use of insulin (basal and/or prandial).

In the case of the second flow diagram, we have the basis for a well-defined protocol of treatment for Type 1, LADA, and Type 2 diabetes with treatment modifying as the disease progresses, in the case of LADA diabetes. Moreover, as new diabetes treatments are developed, they can be incorporated into the protocols, based on the evidence for their efficacy.

The importance of the poster is this is the first time we have a set of protocols that any health care provider can follow for the diagnosis and treatment of diabetes, backed by the international consensus of leading authorities. In my opinion these flow charts should be on the wall of the office of every health care professional who treats people with diabetes. While there is still the potential for misdiagnosis and mistreatment, by adopting a common standard, the flowcharts can be constantly improved to maximise the quality of care for people with diabetes.

Overall, I have really enjoyed the experience of putting the poster together and taking it to an international diabetes conference. The next steps are to collaborate with diabetes academics to write a peer reviewed paper on the subject. This will also provide the opportunity to update the recommendations with the latest conclusions from the literature in terms of medications but also in terms of devices such as continuous glucose monitors, pumps and looping technology.

What I have learned from the experience is this poster is proof that the voices of the diabetes community are important and can make a difference, not only in their own communities but on the international stage. We are worthy of participating in all arenas because no one knows diabetes as well as a person living with it. We are all experts of this disease in our own way and our experience and wisdom is important. If you have an idea or potential discovery which can help people with diabetes, do not be held back by doubt but pursue it. I promise you will not regret it.

Finding My Overnight Basal Insulin Level

A little over a month ago I wrote how I was starting long-acting insulin at night and beginning the journey of finding the right level.

The good news is I have started to achieve gluco-normal levels in the morning and I am so excited I thought I would write about the path to get there.

The Background

A couple of years ago I did a literature review to work out at what blood glucose levels damage is being done to my body. The conclusions out of that were:

  • There is NO evidence that occasionally going over 140mg/dL (7.8 mmol/L) does damage. None, zero, zilch. So stop beating yourself up over a “bad day”. The damage to your mental health is not worth it. Win the war and do not focus on the odd battle that goes astray.
  • Keeping your HbA1c below 7.0% is good and, if you are at low risk of hypo, below 6.4% is better. Arguably, the lower you can go without exposure to serious hypos is a good thing
  • A fasting blood glucose below 120mg/dL (6.7mmol/L) is a good thing although the best predictor is HbA1c

My last blood results had an HbA1c of 6.6% and a fasting glucose of 7.2mmol/L so things had to change. This is where Levemir came in.

The Choice Of Treatment

I could shortcut to simply using a pump and continuous glucose monitor (CGM) which, in an ideal world, talk to each other to manage my blood glucose levels but, as I still do not require mealtime insulin, and that is a lot of equipment to manage (and pay for given CGMs are not yet subsidized for most people with Type 1 diabetes in Australia), I opted for a simpler solution of taking a long-acting insulin at night.

The insulin suggested by my endo was Levemir. While there are 24-hour insulins available (and weekly ones coming soon), the problem was overnight highs (confirmed by wearing a CGM a couple of weeks up to my endo appointment). We can see this in the excursions above 10 in the below plot which happen, almost exclusively, post dinner and continue until after midnight.

Levemir, with a roughly 12 hour action was a good choice.

Working Out The Dosage

The fact is there is no way to work out the right dosage without experimenting. Too little and blood sugars remain high, doing damage over time. Too much and you hypo which is dangerous and damaging. To quote a meme.

At my endo’s recommendation I started at 2 units and took measurements in the middle of the night and in the morning with a view of keeping the measurement in the middle of the night above 4.5mmol/L (80ish mg/dL) and between 4.5-5.5mmol/L (80-100mg/dL) in the morning. Each week I saw if I was in the goal range and, if not, incremented by 2 additional units.

This went on for a month but it was clear even 8 units was not doing much at all for my blood glucose levels. Clearly insulin resistance (which I knew I had) was working against me. My endo suggested jumping to 14 units and when this did not work, I went to 20 units.

Success!

This morning, for the first time in a long time, my morning blood glucose was in the set range.

Next Steps

Next is to fine tune the units to keep the average around 5.0mmol/L (90mg/dL) and minimise the variation. To measure this I will be looking at the 7-day average for the night and morning readings and the standard deviation. Both of these are readily calculable in Excel. My hope is adjusting the dosage and being reasonably strict on when I inject will keep these measures in check.

Conclusions/Things I Have Learned

  • Set your targets/goals early in your diagnosis: It is very easy to put off making a move to insulin, convincing yourself you will move more and eat less and it will all be better in 3-6 months time. I believe a better approach is have your past self set the goals for you when it is less likely emotion will influence the decision. It is also much harder arguing with your past self than it is with an endo who you can dismiss as not knowing your ‘lived experience’.
  • Tread carefully but purposefully: While it took a bit over a month to get near the right dosage, the approach was safe in the short term and set me up well for the long term
  • Continue to monitor, measure and improve: Getting my levels right now, and monitoring for change will set me up well for when I move to a pump and ensure I remain as healthy as possible. Injecting once a day and measuring twice a day seems like a small price to pay to minimise the risk of long term complications and short term hypos.

Insulin Cooling Battles: Breast Pads vs Breezy Packs

This is part of an on-going series where I compare different technologies available for keeping insulin cool so it does not spoil.

Previous battles were:

In this battle I compare Breezy Packs to breast pads.

Why Breast Pads?

It may seem like a curious choice but there is method to it. In “Frio vs Breezy Packs” I mentioned that Breezy Packs use Phase Change Materials (PCMs) to maintain the internal temperature. For a rundown of the physics on how they work, head over to that post.

While the specific material used in Breezy Packs is a trade secret, one candidate substance is octadecane whose melting point is around 28C (82.5F). While not listed on the box, on eBay the listing for the breast pads had octadecane as one of the main ingredients. For $20 it was worth a shot.

Sure enough, on touching the pad there was a cooling sensation so things were promising.

The Setup

For Breezy Packs, I used their smallest size and put one of my Ozempic pens inside with a digital temperature sensor embedded within it.

For the breast pads, I used a mesh pencil case I had picked up and layered the breast pads inside with another pen with a sensor between them.

In the image you only see the pads on one side but I did put eight on one side and eight on the other for the experiment.

A third sensor was used to track the oven temperature.

With the two containers on a rack on an oven tray (I did not want the tray to be in direct contact with the containers) I placed them in the oven and took the temperature around every five minutes until one of the containers went past 30C (86F).

Prior to entering the oven, the breast pads consistently measured a lower temperature than the Breezy Pack. I assume this was because of the higher area of contact between the pads and the insulin pen. However, things changed when the oven became involved.

The Results

While the breast pads initially showed a lower temperature, this soon changed. Both were pretty stable but, at 17:15, the temperature of the oven was continuing to fall and was heading towards 30C so I increased the dial by a small amount. The different response can be seen with the breast pads increasing temperature much faster than the Breezy Pack and eventually hitting 30C. In fact, over 40 minutes, the breast pad temperature went up by 7C (12F) compared to 2C (3F) for the Breezy Pack.

Conclusions

Breezy Packs wins again although I suspect if we used a similar volume/weight of breast pad PCM the result may have been different. This being said, the amount of breast pads needed to achieve this would be excessively expensive. As with previous experiments, the components were fully funded by myself without commercial sponsorship of any kind.

Grieving Change and Adopting Night-time Insulin

I had my six-monthly meeting with my Endocrinologist this week and it was clear the atmosphere was a little more formal than usual. Looking over my blood results he asked “Where do you want to start?”. Getting straight to the point I indicated the HbA1c number to which he replied “6.6%”.

This came as quite a shock as, for the five years since diagnosis, I had been 6.1% or less. The number had drifted up slightly in the last few results but this was quite the jump. “Well that’s it”, I concluded, “it is time to get onto the good stuff” which, in this case, meant insulin.

Set Your Goals and Limits Early

Back in November 2019 I had written a blog on what levels a person must maintain to limit damage and the risk of long term complications. My conclusion had been an HbA1c over 6.4% significantly increased the risk of complications and, once I reached this mark, it was time for insulin. That time had come.

I cannot recommend highly enough setting these kinds of personal limits early in your diabetes journey. Talk to your health team, review the literature as I did and create your own lines in the sand. When the time comes, they will serve you well because it is only natural to try and maintain the status quo when, in fact, change is necessary. Let your past self guide your present self so you can both look after your future self.

Grieving the Loss of Familiarity

I am a firm believer people go through grief when faced with significant changes in their life. The move to using insulin while not a big deal in itself, is such a change. While my other medications are to slow the progression of the disease and will no longer be needed in the future, the move to insulin is, in all likelihood, a permanent one.

The grief felt is, I believe, the grief of losing familiarity, of entering a new normal and the adjustments which come with it. In fact, the Kubler-Ross Grief Stages have been modified for chronic disease to cover this very concept.

In reviewing my HbA1c it was tempting to defend the result by considering the large error margin that is inherent in the HbA1c measurement (Denial) but, thanks to my regular reporting for my endo, I knew this result was consistent with the trend of my numbers heading upward and unlikely to be an outlier.

Without my line in the sand of 6.4% it would have also been tempting to give it another, say, six months, resisting my endo’s recommendation for insulin intervention and see where the numbers landed, doing my best to exercise more and eat less sugar in the interim (Pleading, Bargaining, and Desperation) but past Leon had prepared for this day allowing me to move past the second stage, reconciled by evidence over emotion.

There was a little Anger at myself for not doing more e.g. more exercise and less candy but, in reality, the immune system always wins. Five years of insulin independence was a remarkable achievement and it is mentally much healthier to focus on what was achieved than what was not.

There was also a little Depression that the inevitable had arrived along with small feelings of Loss of Self but, again, equipped with the knowledge that this was always going to happen helped me get past this. While there may still be some lingering feelings of this (while I write this it has been three days since I saw the endo), it is time to accept the next stage of my journey.

Acceptance and the Road Ahead

I had put on a sensor in the weeks leading up to the meeting with the endo so we had good information to guide us on where the high sugars were.

It is clear in the trace that from around 9pm at night my numbers go up and slowly drift down until morning. It is also clear that this drift sits around 7 mmol/L (126 mg/dL) and should probably be closer to 5 mmol/L. I remember when I was first diagnosed my blood sugars would sit in the 4s outside of meals but I have not been there for a very long time. This night-time elevation is where we decided to target the levels.

Long Acting Insulin

I spoke about the two main roles of insulin back in 2019. In short, if you are not eating, your levels should be reasonably flat and towards the bottom on the standard range e.g. 4.5-5.5 mmol/L (80-100 mg/dL). If the levels are not behaving like this, it is likely the body is struggling to keep the liver’s glucose release in check. For multiple daily injection, this is the role performed by long acting insulin.

As neither I nor my endo know exactly how much insulin is needed to flatten the overnight curve, we are starting conservatively: 2 units of Levemir taken at around 9pm and monitored once in the middle of the night (checking I am not too low), and once in the morning to see if I am between 4.5 and 5.5 mmol/L.

After one week I will see how it has gone and, if I am not getting down low enough, I will increase the dosage by another 2 units, monitor for another week, rinse and repeat.

There are a few long-acting insulins available but Levemir is useful for my specific purpose because it has peak activity for 12 or so hours which matches the period of time I need it for.

The New Normal

This is now my new normal; injecting once at night and for now, monitoring levels twice per day until I get the dosage right. My new goal is to reduce my HbA1c to a healthier level (sub-6% without hypos would be ideal) and if I can do this without the need for mealtime insulin, even better. Of course, if I continue to have an HbA1c above 6.4%, additional measures will be required. Again, the measures I have set for myself, informed by my own investigations and supported by discussions with my health care team, will guide me and allow me to keep a level head no matter what happens.

Generating A Report For Your Endo

I thought I would go through the report I generate for my endo before every visit and the tools I use to create it.

Tool 1: Microsoft Word

All the graphs and tables I generate I put into Word and then save to PDF for emailing.

Tool 2: Nightscout (OOB Reports)

If you are unfamiliar with Nightscout it is, essentially, a web site which shows your CGM’s glucose readings. Very useful for allowing others to review your levels, and used in some looping setups.

For more details on Nightscout, go here. It all might sound technical but the automated scripts make things really easy and no coding knowledge is needed. Also, all the tools it uses are free.

It also comes with a report section which can generate a Glucose Distribution Graph. Generally I select three months for my graphs even if I have not been wearing a CGM for the whole time. This is what the graph looks like.

I am pretty happy with this. Using the conventional TIR range (3.8-10/70-180) I am 93% in range. Given I have not been particularly strict over the last three months, I am good with this. My predicted HbA1c is 6.0% which is creeping up but, given my pancreas is slowly being destroyed by my immune system, this is not overly surprising. Hopefully the blood tests will reflect a similar HbA1c when I get the results back.

Nightscout also has a Glucose Percentile report showing the spread of values over the day.

Looking at the highs, the areas of interest are night time (around 8pm – 1am) and lunchtime (2pm). In both cases it is likely poor food choices which are to blame. Maybe choosing less carby options at lunchtime will help and maybe I need to be more judicious in my late night snacking.

Tool 3: Nightscout Reporter (https://nightscout-reporter.zreptil.de/)

For this tool you will need Nightscout set up. Assuming you have Nightscout in place, you go to the Nightscout Reporter site, give it the web address of your Nightscout site and it does the rest. It also generates a table with similar information to the first graph.

To the casual observer, the “Lowest value in the period” at 1.7mmol/L (30mg/dL) may seem something of concern but this was simply a bad reading from my CGM; it is either a “compression low” (sensor giving a low reading by being squashed) or a worn out sensor giving nonsense readings. Being insulin independent it is impossible for me to go that low. The lowest I have ever been is around 3.5mmol/L (63mg/dL).

The Nightscout Reporter also has a Glucose Percentile Report but, as it is essentially a repeat of the same report from Nightscout reports, you only need one of them.

The next report I include in my report to my endo is the Comprehensive Glucose Pentagon. It is a spider graph of five parameters us people with diabetes need to keep an eye on and compares it to the typical values for a Muggle (non diabetic person).

For me, the outlier is the CV %, the variability in my glycaemic values. Again this suggests maybe less sweet treats and more lower GI options.

Finally, the Nightscout Reporter gives us a distribution graph of glucose values.

This also gives us a good indication of where our numbers sit.

Medications and Questions

Finally in my report to the endo I include a list of my medications and supplements, and any questions I have. Given my questions often involve new medications or protocols it seems fair to give my endo some notice before meeting them so they can do some research beforehand.

Longitudinal Analysis

The other benefit of generating these reports is I can review the results over time. For example, here are the results of my glucose distribution for 13/08/20-13/11/20, 17/06/21-14/09/21, and 12/12/21-12/03/22

13/08/20-13/11/20

17/06/21-14/09/21

12/12/21-12/03/22

If we look at the “Values above 10.0mmol/L” (180mg/dL) we see this is slowly increasing but still substantially less than the 25-30% guideline.

While the standard deviation is the same, the GVI is increasing suggesting less blood glucose control, but still in the “good” range.

Average glucose is also rising over time.

All of this is consistent with a LADA’s slowly deteriorating pancreas. The question will be when do I start looking at additional interventions, such as insulin? As per my analysis on when damage starts to accumulate, I am happy to let things progress until my HbA1c gets closer to 6.5% but this is also a good subject to discuss with my endocrinologist at my appointment.

My Fifth Diaversary, Why I Celebrate It, And The Health Benefits Of A Carb Blowout

This week was my fifth diaversary. It is a word you will not find in the dictionary and is used exclusively in the diabetes community. In short, it is five years since I was diagnosed with Type 1 diabetes.

It may seem a strange thing to celebrate, the acquisition of a chronic, damaging, sometimes fatal disease but it is important, at least to me.

To celebrate I went all out with Italian:

  • Half of a 14″ meat-lovers pizza
  • 4-inch square of lasagne
  • half a garlic bread roll
  • single serve of tiramisu

A nightmare to manage for most Type 1s. Being a honeymooning LADA, albeit an insulin-independent one, helped although I still spiked, peaking at around 12.2mmol/L (220mg/dl) and then headed down.

So why subject my body to such a stress? Because sometimes it is the healthiest thing you can you do for yourself.

My Usual Eating Routine

I characterise my diet at “lowish carbohydrate”. Where there is an obvious, practical low/no carbohydrate alternative to a food, I will eat it. I do not drink sugary drinks, opting for the ‘diet’ alternatives. I am very comfortable with sugar substitutes such as phenylalanine and sucralose. As a general rule I try to make sure anything solid I eat has 10% net carb or less and, for liquids, zero carbs. That is it.

The result, when I stick to this, are blood glucose traces like this.

The thing is, even with these relatively light rules, it still requires commitment and effort to maintain. If I am eating out, I need to scan the menu for the friendliest options. I need to make sure, if I order a soft drink, that the diet version has been served and not its sugar-filled cousin and so on.

Other Common Eating Regimens

Other common eating regimens for people with diabetes are even stricter. If we consider Bernstein’s approach we are eating:

  • 30g of net carb or less per day
  • Roughly the same amount of carb every day for breakfast, lunch, and dinner e.g. 6g, 12g, 12g
  • Eating at roughly the same time every day

That is a lot to keep on top of and while I am sure the ‘Gritters’ will say it is not a big deal and worth it because “we deserve normal blood sugar levels” there is no doubt it does require effort and will impact social interactions with those not complying with this routine.

The strictest of all is probably the zero-carb carnivore diet. This pretty much speaks for itself; if it was not once part of an animal (or is a drink with practically no calories) it is off the list.

At the other end of the spectrum we have the Forks Over Knives advocates, where eating involves a “plant-based diet”. In short a “small v” vegan diet where no foods are off-limits but some (those from animals) are to be avoided.

This one is relatively friendly and, for those looking to reduce insulin resistance the benefits of avoiding animal fats may outweigh the additional carb intake.

Whatever system that is followed, assuming a person with diabetes is adopting some kind of food management, rules mean conscious effort.

The Risk To Mental Health

Orthorexia nervosa is defined as “an unspecified feeding or eating disorder characterized by an exaggerated, unhealthy obsession with healthy eating”. “The affected individual might be driven by dietary asceticism, cherry-picked evidence, or even by evidence-based recommendations, leading to a restrictive dietary pattern in pursuit of improved health”. Overly strict diets which individuals religiously follow, and myths about the food we eat feed, reinforce this kind of unhealthy thinking.

Another aspect is willpower (also known as volition) is a finite resource. A person can only perform conscious actions for so long before they need to take a break. A person with diabetes is ‘on’ 24-7 (except possibly the closed loopers but they are still the exception rather than the rule). They know that maintaining their blood sugar is necessary to stay alive and stay healthy. So what happens when they run out of willpower to manage their disease? Diabetes Burnout. They simply stop managing the disease because they need to take a break.

Obviously there is a lot more to managing diabetes than food intake but it certainly contributes and can be overly burdensome when it becomes all-consuming.

Food Myths Which Contribute To Orthorexia And Diabetes Burnout

There are a few myths when it comes to blood sugars and food which focus on 140mg/dl (7.8mmol/L)

“Damage Starts Happening When Your Blood Sugar Goes Over 140mg/dl”

I tackled this in a previous blog. In short, there is no evidence that damage begins over 140mg/dl. There is literally no study which has examined people with blood sugars at 141mg/dl and observed cellular damage occurring. It is a myth used to sell books but has no basis in scientific fact. It is true that having a sustained high blood sugar will do damage in the long term but this is better measured through metrics such as the HbA1c or Time in Range (TIR).

“Muggles (Non-Diabetic Folk) Never Go Above 140mg/dl”

This is simply not true. A recent article gave a great summary of some of the research that has been done in this area. Here are quotes from the studies examined:

  • Muggle Study #1: “On average, their daily glucose levels stayed between 70–140 mg/dl for 93% of the day, with very small portions of the day spent above 140 mg/dl or below 70 mg/dl”
  • Muggle Study #2: “Levels were lower than 70 mg/dl for 1.7% of the time and greater than 140 mg/dl, only 0.4% of the time.”
  • Muggle Study #3: “Participants spent 93% of time between glucose values of 70-140 mg/dl, with 3% of the time below 70 mg/dL on average and 4% of the time above 140 mg/dl on average”
  • Muggle Study #4: “2.1% of glucose sensor values were >140 mg/dl”
  • Muggle Study #5: “Glucose was above 140 mg/dL for only 0.8% of the day”
  • Muggle Study #6: “Participants spent 1.6% of the time above 140 mg/dl”

Literally every study showed that while going above 140mg/dl was the exception, even Muggles do it for short periods of time every day.

In other words, not only are these myths untrue, anyone believing them is putting themselves under unnecessary mental stress for effectively no discernible gain.

Diaversary As A Mental Steam-Release Valve

This is why I celebrate my diaversary. My diaversary is a day when I give myself permission to not to be as concerned with my blood sugars, secure in the knowledge that one day of spiking is going to do little but give me a mental break and help me recharge for the other 364 days. I genuinely believe the one day of poor bloods is a small price for sustained mental wellbeing. While maintaining healthy blood glucose levels is important, so is managing my mental health. My diaversary is a key element in my approach.

Insulin Cooling Battles: Frio vs Breezy Packs

My previous battle, Frio vs Gel, showed that while a gel pack slows down the transfer of heat, it has no power to stop that heat energy eventually reaching the contents of the pouch. In contrast, the evaporation of the water from the Frio pouch actively fights the heating of insulin by redirecting the heat energy to converting the water from a liquid to a gas.

In this battle, we have two related, but different technologies which both redirect the heat energy to perform other tasks than heating the pouch contents. As mentioned, for the Frio pouch, it is the conversion of water to steam and, for the Breezy Pack, it is the melting of a mysterious substance called a PCM (Phase Change Material).

What are PCMs?

We know from high school science that, in the everyday world, matter is in one of three states: solid, liquid, or gas. What we may not know is, to move from solid to liquid, or liquid to gas takes energy. The scientific term for the energy required to melt a substance is the “Heat of Fusion” or “Enthalpy of Fusion” and it is measured in energy per weight e.g. kJ/kg or energy per volume e.g. MJ/m^3.

The energy needed to evaporate a substance is called the “Heat of Vaporization”. It turns out the energy needed to evaporate water is really high. It literally takes five times the energy to get water to turn to steam once it reaches boiling temperature than it takes to take water from ice to that temperature. So, if you have a kettle or heater which can get your water to just under boiling temperature, and that serves your purposes, do so because you will save a LOT of money on energy bills.

So, in the case of our Frio pouch, the PCM at play is water going from a liquid to a gas. While water does boil at 100C (212F), even at 30-40C (86-104F) we get some cooling effect because the water molecules in the Frio pouch are at a range of energy levels so a little heat energy can tip some of these over to becoming a gas at these lower temperatures. This is why we may see a little steam, even before the water is boiling.

In the case of Breezy Packs, the makers do not reveal what the PCM substance is but we can make an educated guess.

What is the PCM in Breezy Packs?

This is what we know:

  • The substance is solid below 25C (77F) and turns to a liquid above this temperature. We know this from the instruction sheet.
  • From the Breezy Pack website, the substance begins to melt above 27C (80.6F)

Going to Wikipedia, we have a range of common PCMs. Assuming the manufacturers have gone for an inexpensive PCM whose melting point is somewhere above room temperature and below the fail temperature for insulin (around 30C/86F) the obvious choice is Sodium Sulfate, maybe with some salt added. At US5c/kg, it is the cheapest PCM in the table, after water. You will notice below that pure Sodium Sulfate melts at 32.4C (90.3F) but, adding a little salt brings this down to a lower temperature. I have bought some pure Sodium Sulfate to experiment with and see if I can replicate the Breezy Pack but that is for another post.

The Experiment

As with the Frio vs Gel experiment, I have enlisted the help of my oven to maintain an even temperature. While I used the middle shelf and the fan forced setting last time, I was finding the oven was going above 46C (115F) which I did not want so I put the Frio and Breezy pouches on the lower shelf with only the top element on. I also put a dishcloth on the middle shelf to act as a shield from the direct heat of the heating element. I also put the two pouches on two plastic cutting sheets to prevent contact with the metal bottom.

The wires were linked to digital sensors so I could monitor the temperature.

The blank one is the temperature of the oven.

The Breezy Packs, at the time of writing come in two versions: Breezy Basic and Breezy Plus. Both of these are the same physical size but the Breezy Plus contains more PCM so it can work for longer. This experiment used a Breezy Basic. The Frio pouch was the same one as I used in the Gel comparison and was soaked in water for the same amount of time prior to going into the oven i.e. 5 minutes. The only difference was the temperature of the water used which, in this case, was room temperature and not, as last time, from the cold tap.

The Results

So, for an oven where we the temperature is between 35-40C (95-104F), we see that the Frio took around 15 minutes to go from 25C (77F) to 30C (86F). In contrast, the Breezy Packs only moved 1.5 degrees Celsius over the same time period.

The rapid rise in the Frio surprised me as it took twice as long to move the temperature the same distance but, even if we use the Frio vs Gel pack results for considering the Frio pouch, we see that it is still out-performed by the Breezy Pack. My guess is the sensor in the Frio pouch was closer to the outside this time around and, therefore heated up quicker. An alternative explanation could be the difference in oven temperature from last time changing the performance of the Frio pouch i.e. the oven ran a little hotter, although more consistently this time around than last time.

Conclusions

To my initial surprise, the Breezy Pack strongly outperformed the Frio pouch. In hindsight, this makes sense. If we think about it considering the PCM in each case, for water, most of the water molecules are still too cold to transition to a gas state and, therefore the heat energy is simply used to warm the material. For the Breezy Pack though, the majority of the molecules are close to melting and will more heat energy can be redirected away from heating the pouch.

Given the Breezy Pack requires no soaking, is not damp and simply works and given the price point for both the Frio pouch and Breezy Pack are similar, it seems clear the Breezy Pack is the superior option between the two when carrying a couple of pens.

Please note: I bought all pouches with my own money and have received no financial benefit in this comparison. This being said, I am very, very open to receiving sample pouches if either Frio or Breezy Pack want me to compare different sized models in the future 😉

Insulin Cooling Battles: Frio vs Gel

David Burren recently put me on to Breezy Packs which, if their claims are to be believed, offer a new way to keep insulin cool in the field. I have ordered a couple of Breezy Packs to put them through their paces but, first, I thought I would try out the existing methods commonly employed to show how they work.

Gel

Gel packs contain gel (no surprise there) which holds its temperature well and acts as an insulator. There is no actual cooling mechanism here other than the gel slows heat passing from one side to the other. So, to use a gel pack, you cool it down in the fridge (not the freezer as insulin does not like to be frozen) and put your insulin inside it to protect it from outside fluctuations in temperature. Outside heat is slow to heat up the gel pack which means the insulin stays cold.

Frio

Frio is, arguably, the most popular brand name for evaporative cooling pouches for keeping insulin cool. There are other brands out there (I even sell a version in my Etsy store) so feel free to shop around. They all work in the same way though. You immerse the pouch in water for, say, five minutes and it puffs up. You take it out of the water, wipe it down and put your insulin inside.

Not only are the pouch contents (generally silica gel beads or similar) an insulator but they are spectacular at absorbing and holding on to water. How Frio bags work is, when exposed to a warm temperature, the water in the beads begins to evaporate but evaporating water molecules takes energy so, instead of the external heat being used to raise the temperature of the water, some of it is used to turn the water to steam. This means the water temperature stays reasonably stable and, in turn, so does the temperature of the insulin inside the pouch. Our bodies use the same trick to stay cool when we sweat.

Breezy Packs

Breezy Packs offer a new way to keep insulin cool, which is similar to Frio bags but, instead of absorbing energy, turning water from liquid to a gas, it converts its active material from a solid to a liquid. No need to soak and wipe down. The physics of Breezy Packs is actually very smart so I will save it for when the pouches arrive and I will write another blog on the subject.

The Cooling Battleground: My Oven

It turns out that I can get my fan-forced oven down to around 30-40 degrees Celsius (104 degrees Fahrenheit) so this was my “controlled environment”. The contestants were a small Frio pouch capable of holding two insulin pens and a massive pillow gel insert.

The insert is 30x40cm with three panels. Both pouches went onto an oven tray with baking paper underneath to try and insulate from the metal bottom.

The gel pad was folded into three with two of the panels at the bottom and both pouches had a temperature probe put in the middle of them. As indicated above, the gel pad had been stored in the fridge whereas the Frio was soaked in tap water.

Once in the oven, I monitored their temperature and the temperature of the oven.

Here the gel pack is 10.7 degrees Celsius, the Frio pouch is 23.8 degrees Celsius, and the oven is 35.5 degrees celsius.

The Results

Thanks to the magic of Excel we can see how the two pouches fared. The oven temperature, which had previously reached the target temperature, was slowly dropping but remained above 30 degrees for the whole time. The Frio pouch, with the oven’s heat being used to turn the Frio’s water to steam, was holding a reasonably even temperature. The gel pouch, with nothing but insulation, slowly increased in temperature, catching up to the Frio after about 30 minutes, despite the 15 degree head start.

To be honest I was not sure the Frio pouch would work as well as it did as the oven was closed and, therefore, once the air inside the oven was saturated with moisture, the Frio would no longer be able to cool but for the 30 minutes it continued to work.

Conclusions

First of all I was really impressed the results came out as well as they did, showing the characteristics of the two pouches. For my money, if I was expecting to carry insulin for an extended period of time in high heat, I would likely look to a pouch that uses evaporative cooling. I would also invest in a MedAngel so I could check the temperature inside the pouch at any time and be alerted if things were going astray. Gel is a much cheaper option, of course, so, for short excursions, it will work fine. You could also, if you had a large enough pouch, put a cooled gel pouch inside a Frio pouch and gain a double benefit. As long as the Frio pouch is on the outside this should work fine.

EASD 2021: Reconciling the International Consensus Reports for LADA and Type 1. Part 2: Treatment

For Part 1, looking at reconciling the reports for diagnosis, go here.

Thanks to the generosity of #dedoc°, I recently had the privilege of virtually attending the world’s largest Diabetes conference: EASD 2021. Arguably the biggest news at the conference was an international consensus on the diagnosis, treatment, and management of Type 1 Diabetes. Interestingly, last year an international consensus was released for the diagnosis, treatment, and management of LADA. In Part 1 I reviewed how the two differed in terms of the diagnosis of Type 1 and LADA. In this second and final part I will look at the two reports’ recommendations for treatment and consider questions such as:

  • Should someone diagnosed with LADA go onto insulin immediately?
  • Are there treatments for Type 1 other than insulin?
  • If I do use insulin what are the pros and cons of the various methods of delivery?

As usual, for those who want the short version, you can go to the tl;dr section at the end.

Where We Landed In Part 1

In Part 1, I concluded the diagnosis flow chart from the Type 1 report was the more detailed and effectively covered LADAs flow chart.

So, assuming someone has LADA or Type 1 diabetes means either:

  • We have some reason to suspect diabetes (unintentional weight loss, ketoacidosis, glucose > 20 mmol/L (>360 mg/DL) etc.)

AND

  • Auto-antibody presence OR
  • Low C-peptide (less than 200 pmol/L (0.2 nmol/L) ) OR
  • No features of Type 2 diabetes (BMI >= 25 kg/m^2, no weight loss, no ketoacidosis, less severe hyperglycaemia etc.)

Treatment According to the LADA Report

The LADA report has a flow chart for treatment which looks like this:

The Type 1 C-peptide limit is different (0.2 nmol/L vs 0.3 nmol/L) but, given there are two other options available which do not consider the C-peptide level in the Type 1 report (auto-antibody presence and no Type 2 features), there is still the possibility that someone with Type 1 could have a C-peptide in any of the above three ranges.

I go through the LADA and Type 2 guidelines in detail in my “Gold Standard” LADA article. In short, if your C-peptide is over 0.7nmol/L (700 pmol/L) options include:

  • Metformin
  • GLP-1 RA
  • SGLT-2i
  • DPP-4i
  • Basal insulin
  • TZD

While part of the Type 2 algorithm, there is a notable exception of Sulfonylureas not being used with LADAs because “The panel concluded that sulfonylureas are not recommended for the treatment of LADA, as deterioration of b-cell function as a consequence of this treatment cannot be ruled out”.

For patients with a C-peptide below 0.7 nmol/L, there are two flow charts. The first is if heart (ASCVD/HF) or kidney (CKD) disease is present with the same medications as before except TZDs which may have been excluded because of the limited evidence of benefit and increased risk of bone fracture.

For patients without heart or kidney disease, we have this chart where the SUs are still not present but which does include TZDs.

What is good is this set of flow charts covers the entire Type 1 C-peptide spectrum which means, even when someone with LADA becomes a “classic” Type 1 because of declining C-peptide levels, we have a prescribed course of action. What is missing is a complete answer to the question “When should someone with LADA start using insulin?” The answer from the above flow charts is “If the HbA1c is above target” but no target is firmly established. Let us move to the Type 1 report.

Treatment According to the Type 1 Report

In fact, the Type 1 report immediately addresses the issue of targets for Type 1 in their first table.

Here the target HbA1c is 7.0% with the caveat that “all glycemic targets should be individualized and agreed with the person with diabetes.” So, unless we have discussed and agreed on a different target with our health care team, achieving an HbA1c equal to or below 7.0% is a good benchmark for considering moving to the use of insulin. This is in agreement in my post where I considered how high someone’s HbA1c could be before a significant risk of long term damage.

For the specific question of when someone with LADA should consider bolus insulin, we also have guidelines for post-prandial (after meal) insulin levels with the suggestion that 1-2 hours after a meal a person’s glucose level should be less than 10 mmol/L (180 mg/dL) and the option of pushing this to less than 7.8 mmol/L (140 mg/dL) if safe to do so.

In contrast to the LADA report, the Type 1 report takes an “insulin-first” approach saying “The cornerstone of type 1 diabetes
therapy is insulin replacement” and providing the following summary of the multi-pronged approach suggested for the newly diagnosed.

Given how difficult it can be to manage insulin therapy in the newly diagnosed, it acknowledges the need to prepare for hyperglycemia (“highs”) and hypoglycemia (“lows”).

The Type 1 report also talks about the relative merits for the different ways of delivering insulin.

Where money is no object, clearly, closed-loop technology is the winner.

Eventually (page 27 out of 37 pages), the Type 1 report talks about “Adjunctive therapies”. In other words, treatments which can be used alongside insulin.

There is common ground between the two reports with both reports mentioning Metformin, GLP-1 RA, and SGLT-2i. It also mentions pramlintide which is an amylin analogue (another hormone produced by the beta cells and, therefore, compromised in Type 1 diabetes). It fails to mention DPP4i and TZD. TZD may be because of the limited evidence but I am not sure why DDP4i’s were left off the list. They affect the same hormone cycle as GLP-1 RAs and therefore have similar effects/benefits.

Reconciling the Two Reports

In contrast to Part 1 where I sided with the Type 1 flow chart for diagnosis, here I am siding with the LADA report for treatment. There are a few reasons for this:

  • It explicitly considers treatment in the presence of heart and kidney disease
  • It offers a more comprehensive range of non-insulin treatment options e.g. DPP4i and TZD (but should likely include Pramlintide as well)
  • It takes the approach that insulin may not be necessary in patients with high C-peptide levels and, given the inherent hypo/hyper risk that comes with using insulin, if target ranges can be maintained, this seems like a sensible approach to me

This being said, the Type 1 report is much more comprehensive in considering the various ways of delivering insulin to the body (injection, pumps etc.) and also has a lot to say about looking beyond medication for individualised treatment e.g. considering lifestyle factors and diabetes education.

One big takeaway for all people with Type 1 or LADA should be that treatment no longer begins and ends with insulin. There are a range of other medications which can help with managing long term blood glucose levels and have other benefits such as helping a patient lose weight or reduce blood pressure.

tl;dr

Arguably, the LADA report’s flow charts for the treatment of Type 1 diabetes are more detailed for treatment than what is presented in the Type 1 report. Not only, does the LADA report consider insulin independence for patients with high C-peptide levels, it considers which medications are appropriate in the presence of heart or kidney disease. However, the Type 1 report fills in a significant gap of providing target values to chase and which help inform decisions such as when to move to insulin therapy.

The Type 1 report also goes into more detail in the areas of:

  • The relative merits and costs of different insulin delivery methods
  • Treatment of Type 1 diabetes beyond medication e.g. lifestyle factors and education