This subject has been bouncing around in my head for a while and came about from an interaction with one of the giants of diabetes research: Professor Chantal Mathieu.
As a textbook LADA, I was constantly frustrated, prior to becoming insulin dependent, that I fell through the gaps on most research. Either the research wanted people recently diagnosed as type 1 or people who were insulin-dependent. Having a 5 year honeymoon insulin-independent honeymoon excluded me from both. In discussions with researchers, a practical limitation of researching LADAs is we progress so slowly meaning to bubble up statistically significant results takes timespans of years, instead of months, which is expensive from a grant perspective.
Perhaps the difficulty is our definitions. If we accept LADA is a form of stage 2 type 1 diabetes, it could be included in research studying the transition from stage 2 to stage 3 which can occupy a time period similar to the LADA honeymoon.
Type 1 Diabetes Stages
A bit of Googling brought up Milk and Honey Nutrition‘s excellent summary of the stages of type 1 diabetes.
In theory, LADA could fit into stage 1 but, usually, it is high blood sugars which leads to a diagnosis of LADA as proactive auto-antibody screening is still rare in most countries.
I fell somewhere between stages 2 and 3 at diagnosis. I tested positive for three auto-antibodies and showed symptoms typical of stage 3 but, with dietary control, I could keep reasonably normal blood sugars and a healthy HbA1c. After five years, my HbA1c began to rise and I moved to insulin before the typical symptoms of DKA showed themselves.
So Why Is LADA Distinct From Stage 2?
According to Wikipedia, LADA as a term was introduced in 1993 and a formal model of the stages came around 2015. So, there was plenty of time for LADA to establish itself as a conceptual sub-type before the stages became part of the academic diabetes zeitgeist.
There have been dissenting voices as to the need for a distinct LADA classification. This particular link makes a statistical argument, rather than one based on observational evidence and, given I tested positive for three auto-antibodies on four separate occasions and yet still had a honeymoon of years, not months, in my opinion, debunks this particular paper. I mention it simply to show there is continued debate on the subject.
Professor Mathieu’s Twitter response at the start of this article, also confirms the distinction between LADA and ‘classic’ type 1 is far from having consensus.
Where To From Here?
To settle the debate needs a few elements. The first would be a large cohort of people with stage 2 type 1 and LADA. Reviewing their characteristics and defining distinct sub-groups based on measurable parameters could tease apart the groups. As mentioned, systematic screening is still not widespread so studies of stage 2 are still relatively limited and studies of LADA are even more so. Until that changes, the distinction between LADA and stage 2 will be conjecture, more than fact.
It is accepted that type 1 is a heterogeneous disease i.e. there is no ‘true’ type 1 but, rather, many, many diseases which exhibit similar broad behaviours so LADA could well be a distinct classification. At this stage we come back to the response I got at ATTD 2023, we simply do not have the data to know and must consider it in a way which suits our purposes.
One of the common reports generated by people with diabetes who use Continuous Glucose Monitors is the Ambulatory Glucose Profile (AGP) graph.
If you are unfamiliar with this graph, it is a “heat map” of your blood glucose level (BGL) sampled from multiple days and put over a 24 hour period. So, for example, in the above which is one of my AGPs from last year, the data were over three months (03/07/22 – 03/10/22) and there are clear spikes around 14:30 and 21:30. These, of course, related to meals (lunch and dinner). Why no breakfast spike? Because, generally, I do not eat breakfast.
What I set out to do (and achieved) is create a bot which can be fed an image like the one above and reply with observations to discuss with your health care team. It works via email and generates replies like this.
If you are interested in trying it out, send an email with a screenshot of an AGP (in JPG, PNG, or BMP format) to AGPReader@hotmail.com and you should get back a response in a minute or two. Do not worry if your AGP does not look exactly like mine, I have trained the bot to review graphs from a variety of software sources.
If you are interested in seeing how I put it together, check out my post on my technical blog here.
Next Steps
While reasonably reliable, I am keen to refine and improve it. To this extent, I am talking to medical academics and professionals to get their input on both the training and the analysis the bot generates. I expect, with their assistance, the bot will continue to improve.
Back in April, I wrote about what I pack on a day trip and promised at the time to follow up with a packing list for longer trips e.g. interstate and international travel for work and pleasure, using my recent trips to Germany and the US as my guide. As before, I will be referring to my reference spreadsheet, which has received some minor adjustments since the last article.
This list is not exclusively for people with diabetes; it covers all aspects of hotel-based travel. As you can see, I break the inventory down into:
Luggage Items
Carry On
Diabetes/Medical
Clothing
While the focus will be on the Diabetes/Medical list, there are a few tips/tricks relevant in the other sections. Let us dive in.
My Diabetes Bag
Thanks to the US trip, I now have a new diabetes bag. This one is much larger and has lots of pockets and sections for the various things I carry. While often unnecessary with modern security scanning equipment, it also folds out to display the more noteworthy diabetes items e.g. needles, insulin etc.
Luggage Items
Here are some tips for both the check-in and carry-on luggage.
Carry-On Quotas
For most airlines these days, medical supplies, such as those needed for diabetes do NOT count towards carry-on quotas. For Australian interstate travel this is handy for Jetstar who are meticulous about carry-on weight quotas, literally weighing carry-on luggage as you board the plane. Having a separate diabetes bag makes that experience so much easier.
It also came up on one of my QANTAS flights: one of the flight legs was particularly full and I had with me a backpack with my laptop and other bits and pieces in it and my diabetes bag.
I put the backpack in the overhead locker and kept the diabetes bag with me under the seat. The flight attendant informed if there was not enough room I may need to put BOTH bags under the seat in front of me and, actually, I was only permitted to bring one piece of carry-on. I replied, curtly, one was with medical supplies. She begrudgingly accepted the response and suggested I consider checking in one of bags in the future (given one had insulin and power banks and the other a laptop this was not possible). I refrained from informing her what I thought she should consider doing. Check your airline to be sure, but the moral of the story is being stressed about carry-on quotas because of diabetes supplies is generally unnecessary.
Storage Cubes/Ziplocks
Storage cubes are great as a general packing tool but the smaller ones are fantastic for managing the various supplies. I use storage cubes and ziplocks for:
The stuff customs may want to see when going to the gates (needles, insulin etc.)
Items which need to be hand inspected, rather than going through the scanning machine
Surplus supplies for set changes
The stuff I use every time I do a set change/sensor change/reservoir change
Power banks and cables
Having things in well organised categories/containers makes them easy to retrieve when the moments arise.
Travel Insurance
If you are travelling overseas, always have travel insurance. If you are travelling for business, confirm your workplace’s corporate policy covers diabetes. Do not take HR’s word for it that you are covered, get a copy of the policy and the contact numbers for when you are overseas.
Tourist Books
More for international travel, having a travel guide can be helpful for saying key phrases (“Where is the nearest pharmacy/hospital/doctor?”, “I am diabetic”, “Do you speak English?”), providing maps of the locale, and for understanding how transportation works.
You may also want to research if the country you are going to has reciprocal health arrangements with your home country, how insulin is obtained etc.
Portable Fridge
While on the list, I have started comparing a well-made vacuum flask to a portable fridge with a decent power pack and finding the vacuum flask, under the right conditions, has superior performance. I will likely write about the findings and comparison in a future blog. It is to be confirmed formally but my belief is a vacuum flask, filled with water just above freezing, will give excellent performance on long haul flights (I managed to keep my insulin between 2-15C/36-59F for 48 hours doing this). If filled with water it will need to be checked in which is a risk but, again, the vacuum flask should protect the insulin if things get too cold in the luggage hold. The alternative is to not fill the flask with water and then it is permitted to be part of carry-on although I expect this will affect performance.
Diabetes/Medical Items
Where I covered an item in the previous day pack post, I will leave it out but here are my tips for extended travel.
The best advice here is take more than you need. In the spreadsheet I have a formulae, based on how long I am going for, to tell me what I need to take plus one or two extras. This is very much a work in progress and quite individual, depending on things like how often sensors fail to insert/work for you. On the trip to the US I actually miscalculated the insulin and cruised on the plane back home on my last reservoir of insulin after being very, very careful on what I ate in the last couple of days to ensure I did not spike and require too much additional insulin. You do not want that. Take more than you need rather than having to use your tourist book to ask for more insulin or pump supplies which may not be available/approved in the country you are visiting.
BreezyPacks
I have written a few blog articles about BreezyPacks in the past and I am a big fan. BreezyPacks have never sponsored or sent me freebies (I am open to it though for ‘review purposes’, hint hint). The fact is their product works and works well. Like a Frio, they work by absorbing heat through changing the phase of a material (changing between solid/liquid/gas). Frio uses water going from liquid to gas while BreezyPacks uses their own material going from solid to liquid. The big advantage of BreezyPacks is there is no soaking required and does not need exposure to the air to work. It works as it is.
If my insulin is outside of a vacuum flask while travelling, I always keep it in a BreezyPack.
Insulin Contingencies and my Diabetes Notebook
Like the airplane you may be flying in on the trip, all aspects of your diabetes management should have a backup system which can take over in case of total failure. While I use a CGM and pump, looped with CamAPS to manage type 1, I also take:
A spare pump
Injectable pens
Needles
A finger pricking device and test strips
I also have a notebook with my basal settings and a bunch of other notes, tips and tricks. If the pump fails, I have the choice of booting up the spare pump or, if towards the end of the trip, doing multiple daily injections until my return.
I also make a point of identifying other people with type 1 diabetes, who I know, where I am going. This way even if I lose all my luggage, I can hit up a local for assistance.
Glucagon Pen
While I rarely hypo, if ever (looping means I never over-correct), I do carry a glucagon pen on me. I have never needed to use it and it is largely there at my endocrinologist’s behest but, if you tend to go low, having one may bring peace of mind.
Charged Power Banks, Cables, and Power Adaptors
If you have a mobile phone or receiving device for your diabetes technology, you will want it powered up at all times. Therefore, you need to have backup power supplies in case that long plane flight does not have power in the seat. In my case, my mobile phone is the brains of my looping system so if the phone goes dead, the pump will default to its basal profile and rely on me for bolusing. Clearly my non-looping pump has more faith in me than I do. To ensure my mobile phone lasts for the longest of flights, my carry-on always has power banks and charging cables. Many airlines have strict rules which prevent putting power banks in check-in luggage so these usually have to be in your carry-on and, as they are a medical necessity, they should be in your diabetes bag not counting towards your carry-on quota.
Assuming you will also want to charge up your technology at the hotel, you will also probably need to bring plug adaptors and ensure your chargers are compatible with the local voltage. Most devices these days work between 100-250 volts which covers you for the world but check so you do not fry your charger or the receiver.
Prescriptions for all of your Medications
There appears to be an unwritten rule with chemists/pharmacists around the world that if you use a life-saving medication such as insulin, as long as you have a prescription from your country of origin, you can get it over the counter while overseas. Therefore it is necessary to always have prescriptions for your insulin and whatever other medications you need to manage the disease. For Germany, as my prescription was on file at my local pharmacy, I needed an extra prescription for the trip which I got from a local general practice doctor before I left. My experience has been that, if you explain the situation, most doctors will give you a script, even if they have not had you as a client before.
As well as a letter from someone in your medical team explaining you need to carry insulin, needles, hypo treatments etc. for airport security, a prescription can also help in convincing overzealous security officials you are a person with diabetes.
Needle Clipper and Sharps Container
If you need to inject or do a set change on the plane (more likely for longer trips), it is responsible to carry a sharps container with you or, if you are only disposing injection needles, a needle clipper. The BD Safe-Clip is the one I carry. This allows you to clip off the sharp part of the needle, which is then held securely in the body of the clipper, and throw away the rest of the pen in normal garbage. If you are also disposing of things like pump supplies, a sharps container may be a better option. I have a little one you can see in the diabetes fold out picture above which I use when on the plane.
Carrying the sharps container did raise questions when I went to the Seattle Space Needle but, after I declared I was a person with type 1 diabetes (annoying that I needed to declare my medical status to let through a sharps container!), they let it though.
Aussielent (QOTA) Power and Olive Oil
As mentioned in this other article, I saw potential in taking individual ziplocks of AussieLent and a bottle of olive oil on the trip for when I was hungry but food options were limited. In the case of the trip to the US, this was usually due to jetlag meaning I was hungry at a time when most food outlets were closed. The AussieLent was invaluable at covering the hunger pangs in a controlled, non-spiking way.
Conclusions
So far the above scheme has worked for the two overseas trips to Germany and the US, as well as multiple work trips interstate. As with the day pack, I expect it will get adjusted over time but, for now, it serves me pretty well. If you have items you do not travel without, feel free to add them to the comments.
I have written before about taking insulin through customs but, with a trip to the US happening tomorrow and a trip to Germany completed two months ago, I thought I would pass some thoughts on about travelling as a pumping and CGMing type 1. This is part one (Day Pack) with part two (interstate and overseas travel) coming after my trip and with the wisdom gained.
The Spreadsheet
This spreadsheet removes a lot of the thinking when it comes to packing. The Day Pack list is in the top right.
Day Pack
My Diabetes Bag
My Day Pack is the conference bag from the Berlin trip. I also use this as a bag for all my carry on medical supplies when travelling interstate or overseas. Why a bag just for medical supplies? Because most airlines these days do not count medical supplies towards carry on quotas so it is easier to show them what is being excluded if it is all together. For the local Jetstar airline, who weigh carry-on luggage, this makes the process slightly less excruciating. The bag is also easy to locate when I need to do a set change mid-flight. This also means less bag swaps whenever I travel for the day/interstate/overseas as the core set of stuff in this bag never change.
Here are the contents of the bag:
Going from the top we have:
Diabetes kit with finger pricker, glucose tabs, lip balm, Splenda tabs, lancets, batteries, prescriptions, business cards of my health care team, and blood/organ donor cards
A USB fridge (a new addition yet to be tested in the wild)
Spare prescription glasses
N95 mask
Tissues
Sharps container (for those mid-flight set changes etc.)
Hayfever/cold nasal spray
BreezyPack with MedAngel inside (NB: I could not find a reliable link for buying MedAngels but it is a great Bluetooth temperature monitor)
Glucagon pen
Needles for emergency
COVID testing kit (just in case)
Hypo snacks
Power banks and cables (when you rely on technology to keep you alive 24-7, you want backup power sources and the ability to charge devices)
A spare pump
A transparent packing cube for needles and insulin so it can be easily pulled out at security
FlexPen(s)
I use Novorapid FlexPens cartridges to refill my pump and this also means I have the FlexPens on hand if the pump has a catastrophic failure so, for day trips, I carry 1-2 NovoRapid pens in the BreezyPack in case I need a refill or if I need to fall back to multiple daily injections.
Diabetes-Compatible Watch
My watch is a cheap TicWatch but, with xDrip+ as a companion app to CamAPS FX, I get access to my CGM data and have it appear on my watch. Very useful when you want to quickly check your BGLs but you are in a tiny economy class seat and your phone is in your pocket or when you are in a business meeting and it might be considered a step too far to pull out the phone and start swiping.
Medi/Emergency bracelet
A medi/emergency bracelet is a must for me, especially if I am travelling solo.
Mobile Phone
Being the brain of my CamAPS looping application, my phone comes with me everywhere.
Pump Consumables
In terms of pump consumables, for day trips, I generally carry a spare infusion set and cartridge set in case I am caught unawares while out and about. In a pinch, I can make a full set change without drama.
While I could also carry a spare CGM sensor, the applicator for the Dexcom G6 is so large, I generally do not bother as, at worse, it will mean a few hours with looping off and no CGM data (for the pump the default basal settings will take over and, for me, they are well tuned so it will keep me going until I get home.) I also have the finger pricker in the diabetes kit if I want to double-check.
Snacks and Water
While my bag has snacks inside for hypos, this entry is a good reminder to put in a water bottle and check expiry dates.
Masks
Not strictly needed for diabetes management but good to carry in case you go to crowded places with people coughing or if you are travelling and mask wearing is required. I generally carry N95 or equivalents and, as mentioned above, normally have a spare in the bag.
Diabetes Book
This contains a wealth of information including, as can be seen above, step-by-step instructions for essential tasks like set changes and cartridge swaps. Some of the veteran type 1 folk laugh at the fact I rely on a book for, what is to them, second nature but, frankly, if I am jetlagged, half-asleep, half-drunk, and/or in some other compromised state, I would much prefer to trust the book than my foggy head.
Other information it contains are my profile settings, an on-going list of foods I discover I can snack on without spikes, support numbers for equipment, and miscellaneous diabetes thoughts or ideas jotted down on the run.
Set Change Ziplock
This is a bag of “stuff” I need to do set changes (cartridges and infusion sets). This does not sit permanently in the diabetes bag as I use it all the time.
We have:
Emergency antiseptic gel (in case I run out of wipes)
Ypso cartridge box (which I also use to store the Ypso coin, batteries, and other Ypso-related set change stuff)
Ypso cannula inserter
Safety razor (for shaving a spot for the cannula to go)
Jar grips for pulling FlexPens apart to get to the insulin
Conclusions
That is my current kit. It does evolve over time but is relatively stable at the moment. If you have other items you carry with you on day trips, feel free to add a comment.
Just after we got married, my wife and I embarked on an MBA (Masters of Business Administration). Along with teaching how the organs of business work, there were some interesting electives to choose from. One of the ones I chose was “Leadership and Motivation”. It provided guidance of how to lead people (as opposed to managing them), and how to motivate people. Obviously, in the context of an MBA, it was to help employees stay motivated to work on tasks deemed important to their employer, but I see parallels in the management of diabetes as well i.e. working on tasks deemed important for survival. For those not interested in the details, you can skip ahead to the tl;dr.
The 3C Model
The course was taught by Professor H.M. Kehr, formerly of UC Berkeley who created what is now called the “3C Model“; the Three Components Model.
I find it easier to remember it as the “Head, Hearts, and Hands” model. While relatively simple, the model brought together various motivational models of the time e.g. Csikszentmihalyi and Rheinberg. In this case the head, heart and hands are:
Head: Our logical thoughts regarding the task at hand
Heart: How we feel about the task at hand
Hands: Our ability to perform the task at hand
Other key concepts with the model are “volition” which, for the rest of us, is willpower and “flow”, a state of “effortless achievement”, which is sport is sometimes referred to as being “in the zone”. In short, when the head, heart, and hands are aligned, achievement is effortless.
Another key aspect of the model is the understanding that willpower is a finite resource which cannot be called upon indefinitely and, if pushed to its limit, leads to burnout. Burnout, of course, is a term familiar to many of us who manage diabetes meaning a complete abandonment of diabetes management.
Misalignment and Intervention
While alignment of the head, heart, and hands leads to a “flow state”, misalignment means willpower will be needed to achieve the task. For a task, such as diabetes management which is relentless, it is clear, without intervention, burnout is inevitable. Ideally, the intervention will either give the person a break from the task, allowing willpower to recharge, or make the amount of necessary willpower so small as to prolong burnout practically indefinitely.
Depending on which component is not aligned to the task, this dictates the kind of intervention to use.
When the head is the problem i.e. the person is emotionally aligned and has the skills, but there is a logical conflict, the person may need further convincing, have additional incentives put in place, or have the goals adjusted.
When the heart is the problem i.e. the task makes logical sense and they have the skills but it does not feel right, or they fear the task, emotional support, redesigning the approach, or focussing on the eventual outcome may help.
When the hands are the problem i.e. the person does not have the skills or knowledge to achieve the task, the answer may be education/training, coaching, or having others provide assistance.
Again, we start to see how this model could be overlay onto diabetes management and ensuring a specific approach is a good fit to the individual.
An Example of the Application of the Model
A classic example is the case of someone wanting to give up smoking. They know logically is makes sense (head), and may well have the skills to do it e.g. employing patches (hands), but their heart may not be in it or they fear failure. In this case we see suggested interventions which are often applied to help people give up smoking e.g. in New South Wales we have the ICanQuit web site and Quitline where people looking to give up smoking can call and get support and encouragement to help them on the path.
Application to Diabetes Management
The model provides insight into why intensive lifestyle interventions fail so often. While radical changes to diet or exercise in the management of diabetes frequently address the head and hands, the heart is almost always ignored and is the key point of failure. Very few of us deny the health benefits of exercise and most of us are capable of walking/running yet, like smoking, many of us fail to incorporate it into our lives. Simply put, our heart is not in it. Options to make exercise more palatable could be engaging a physical trainer to provide motivation (support), entering a charity fun run and then training towards the goal for the greater good (new motivators), or changing the type of exercise to something more enjoyable or aligned to the person’s lifestyle (redesigning the work).
In the case of Weight Watchers, the success rate is quoted at 11%. Even with intense coaching on top of lifestyle changes, one study showed remission for Type 2 was only achieved in 3.5% of participants. In the case of the Dr. Bernstein diet where the logic of the benefits of lowering dietary carbohydrates is sound (head), and there is no doubt, once the book is read, someone with Type 1 is equipped to undertake the program (hands), the majority of the strongest adherents, who literally commit to following the program to be part of the “international social group”, failed to meet the basic premise of sticking to 30g of carbohydrates per day. This is not the fault of any one program; the fact is changing habits and maintaining that change is hard and we need to consider the whole person to be successful. We must align the head, hearts, and hands for each person and provide the support that person needs. There is no “one size fits all”.
We also see this with diabetes technology. While the clinical studies speak at the benefits of, for instance, looping systems at improving outcomes (head), there may be a fear of using the technology due to a lack of skills/knowledge (hands) or the person simply does not like the idea of permanently wearing something on the body (heart). Professor Katharine Barnard-Kelly presents on this often at conferences and passionately believes “heart interventions” are effective at improving outcomes.
Professor Barnard-Kelly has also developed the Spotlight-AQ system which facilitates pre-clinic assessments to ascertain where interventions may be required e.g. the need for structured education (head/hands).
Putting the spotlight on my “Practical Diabetic Solution”, I think, if someone commits to replacing all meals, as I did, this would usually not be sustainable because the conflict with the heart e.g. no longer sharing food with family/friends would be simply too great. However, replacing non-social meals would not require the same level of willpower and the use of looping technology would greatly reduce the mental burden of daily management, assuming the person has the skills to use the loop (hands) and understand the benefits (head). To put it simply, the level of commitment and tool emphasis would be different for each individual, but a sustained improvement is better than one which fails to be maintained, however successful in the beginning.
How Can We Use This Model?
My vision is this could be used for self-assessment but also as a framework for the discussion between the health care team and the person with diabetes. For example, by considering why exercise may not work in the context of the three areas, a plan to address the disconnect can be intelligently devised. In the case of technology and medication, if one tool is not aligned, other tools can be considered instead with a closer fit, or other appropriate interventions considered.
tl;dr
The 3C Model of motivation, primarily used in the context of motivating employees, can also be applied to the management of diabetes and to frame conversations between health care professionals and their clients (people with diabetes).
The model focuses on three aspects of the individual, their:
Head: logical thoughts on a diabetes management approach
Heart: their emotional response to a diabetes management approach
Hands: their skills and knowledge regarding a diabetes management approach
When all three are aligned with the approach, its use as part of the diabetes management plan is effortless. When one or more are not aligned, interventions are required to reduce the excessive need of willpower to use the approach which could lead to burnout. Interventions may include:
Head: Education, adjustment to goals
Heart: Support, redesigning of the approach
Hands: Training, assistance
With a framework in place, it will be easier to identify appropriate interventions and optimise outcomes.
Not all medical information is equal, even if it comes from a reliable source. To help me filter the wheat from the chaff, I created these ten levels ranging from Idle Speculation up to verified Medical Fact. Let us get into it and, as is often the case, we have the tl;dr at the end.
Level 1: Idle Speculation
The least reliable medical fact, this is conjecture with literally nothing to back it up. An example might be “I reckon lies cause head colds”.
Level 2: Secondary Source Anecdote
Something someone has heard from somewhere else. The evidence is a “friend of a friend” who had success with the approach. An example might be “Yoga cured my aunt’s diabetes”. Perhaps she was cured, perhaps her management improved. Perhaps she was pre-diabetic or, perhaps, it was gestational diabetes which went away after pregnancy.
Level 3: Primary Source Anecdote
It worked for the person telling you. A good example of this is my “Practical Diabetic Solution”. While, since publishing the article, many people have said things along the lines of “I have a similar approach which works for me”, the fact is, at the time of writing this article, the only person to try the Practical Diabetic Solution is me because I literally wrote about it seven days before writing this article.
Level 4: Multiple, Corroborating Anecdotes
Many people have tried a similar approach and claim to have success. The quotes you see on dodgy supplement sites or on the back of books fall under this category. While the quote may be genuine, sample selection is often biased (when was the last time you saw a bad review on the back of a book?).
Level 5: Observed Under Controlled Conditions
Social experiments often fall under this category; the rules are set and then let to play out to see what happens. The movie “Super Size Me” is a good example of this where the movie’s maker followed a set of rules for engaging with the fast food restaurant, McDonald’s, and monitored his health to see the effects.
Level 6: Observed and Confirmed Independently Under Identical, Controlled Conditions
By Level 6, we are starting to see some rigour in the analysis. An example might be Alcoholics Anonymous (AA) if they released their statistics. As an aside, a Stanford researcher did confirm in 2020 that AA is more effective at keeping people sober than therapy.
Level 7: Published in a Peer-Reviewed Journal
Even when a study is peer-reviewed and published, it can be wrong or misleading. A great example is the Wakefield Vaccine-Autism study published in The Lancet in 1998. With evidence of fraud, the paper was retracted in 2010. Dr. Bernstein’s Diabetes Solution meets this level because of its publication of results in Pediatrics.
Level 8: Published in a Peer-Reviewed Journal, Conducted in a Double-Blind Study and/or with a Control Group (When Ethical/Appropriate)
Let us explain some of these terms by pretending we are testing a new drug. A control group is a group of people, similar in characteristics to the active group who do not receive the drug (or a placebo, explained below). The control group allows us to compare the fates of the control group to the group receiving the drug.
A double-blind study is when the subjects of the study AND the people conducting the study do not know if the subjects are receiving the drug or a fake version (sometimes called a placebo). Why such extreme measures? To remove bias from the experiment and, in the case of a triple-blind study, from the analysis of the data afterwards. The “placebo effect” is probably the most famous form of bias being addressed in this kind of setup.
Generally, if a paper is published following this level of protocol, it likely has medical findings worth further investigation.
Level 9: The Same as Level 8 Plus the Results are Statistically Significant
Claims are often made in science but they do not always have a necessary level of statistical significance to back them up. Understanding p-values and confidence intervals are key in seeing what data are valid and which are not. Often journalists are not well versed in such things and will publish “breakthroughs” where there are none.
Level 10: The Same as Level 9 Plus Verified By Independent Third Parties
Anything meeting this standard can be considered, in my opinion, medicine. One study is compelling but multiple independent studies, being conducted under the strictest of conditions is more compelling. In most developed countries, all vaccines and medications have achieved this level of scrutiny, as a minimum, before being released onto the population.
Using the Levels
Pharmacies (chemists) sell pretty much anything from Level 2 or above e.g. ear candles. Alternative medicine generally gets up to Level 6 or 7 because, beyond that, it starts becoming actual medicine.
This is not to say alternative medicine or diets are bad or wrong, they are just not scientifically proven to the level of other potential treatments. In the absence of other verified treatments or as an adjunct to other therapies, they may be worth considering.
Journalists/mainstream media generally publish “breakthroughs” down to Level 7 but, I would argue it is only in the public interest at Level 9 or 10. Wakefield’s autism claims are the poster child for why this is the case.
Medical research can get to Level 9 and then hit a dead end because it cannot be easily replicated. The famous Rat Park experiments of the late 70s is a good example. While linking environmental conditions to addictive behaviours, the results proved difficult to replicate elsewhere.
In terms of general science, the same ten levels apply although the need for control groups and double blind studies are less important in other science areas. A good example of a Level 9 physics error was the 1989 cold fusion hoax highlighting that science is indeed fallible, at all levels, and before embracing something you read on the internet, ensure it meets the highest possible standard.
tl;dr
Here I present ten levels for assessing medical information. The ten levels are:
Level 1: Idle Speculation
Level 2: Secondary Source Anecdote
Level 3: Primary Source Anecdote
Level 4: Multiple, Corroborating Anecdotes
Level 5: Observed Under Controlled Conditions
Level 6: Observed and Confirmed Independently Under Identical, Controlled Conditions
Level 7: Published in a Peer-Reviewed Journal
Level 8: Published in a Peer-Reviewed Journal, Conducted in a Double-Blind Study and/or with a Control Group (When Ethical/Appropriate)
Level 9: The Same as Level 8 Plus the Results are Statistically Significant
Level 10: The Same as Level 9 Plus Verified By Independent Third Parties
Using these levels as a guide we can assess the medical information we receive and how reliable it may be.
This week I underwent an experiment to see what would happen if I combined a very low carbohydrate meal replacement, a commercial looping system, and snacking to cover hunger pangs. The results were better than I expected and, over the four days, I was seeing normal, non-diabetic blood sugars. Unlike other regimens, I did it with:
No exercise
No bolusing
No hypo treatments
No meal plans
With insulin resistance and a daily insulin requirement of over 70 units per day
You can see the details of the setup here but, in this post, I thought I would go through the results and, now I am on the other side, reiterate why I believe it is a superior approach to Dr. Bernstein’s.
Before and After
So, before the four days, I had:
Average Glucose of 7.2 mmol/L (130mg/dL) (over 14 days)
Average Glucose of 6.5 mmol/L (117mg/dL) (over 2 days)
Standard Deviation 1.9 mmol/L (34 mg/dL) (over 14 days)
Standard Deviation 2.3 mmol/L (42 mg/dL) (over 2 days)
Median 6.2 mmol/L (112 mg/dL) (over 24 hours)
Coefficient of Variation 35% of Mean (over 2 days)
Time in Tight Range (3.9 – 7.8 mmol/L aka 70 – 140 mg/dL): 65%
Highs: 7 Lows: 11 (over 2 days)
GMI of 6.1% (over 2 days)
Let us now look at the results at the end of each day (screenshots taken just after midnight each night)
Day 1
Day 2
Day 3
Day 4
For the totals above, as can be read with a keen eye, all graphs are for 24 hours. The range is the Time in Tight Range (TITR) (3.9 – 7.8 mmol/L aka 70 – 140 mg/dL).
Comparing we see every measure (except the Median, especially on Day 3) has significantly improved. Highlights include:
Halving the Standard Deviation and Coefficient of Variation.
Taking my TITR from the mid-60s to the high 90s
Eliminating my lows (although I suspect they were calibration errors from a new sensor) and significantly reducing my highs (these were real).
For completeness, my weight stayed about the same, and my daily insulin requirement stayed about the same (84-79 units) as well. This second result genuinely surprised me as I assumed the sudden drop in dietary carbohydrate would lead to a much lower insulin need. I assume the difference in carb was offset by the increased protein and further amplified by the increased consumption of animal fats, raising my insulin resistance.
Did You Really Achieve Normal Blood Sugars?
Let us consider a study of the blood sugars of non-diabetics I mentioned in another recent post.
Lots of numbers here, so let me translate the key points for the average participant:
They had a mean value of 99 +/- 7 mg/dL (5.5 +/- 0.4 mmol/L)
Their standard deviation was 17 +/- 3 mg/dL (0.9 +/- 0.2 mmol/L)
Coefficient of Variation was 17 +/- 3 %
TITR was 93-98 %
Time in Super Tight Range (TISTR) (70 – 120 mg/dL aka 3.9 – 6.7 mmol/L) was 82-92%
Time below range was about 1.3% of the time
I only measured TISTR once during the four days which looked like this:
Where I measured 92% TISTR, beating the non-diabetic value of 90% and hit every range on the non-diabetic normal blood ranges.
The only measure I did not consistently hit was Mean Glucose on days two and three due to my morning coffee throwing out my values. By day four I had adjusted the coffee not to spike me so I think it is fair to say that, with improved experience managing the snacks and setting my pump to a more aggressive target (it was set to 5.4 mmol/L aka 98 mg/dL for the experiment but can be set as low as 4.4 mmol/L aka 80 mg/dL), given I had zero lows during the four days, it would not be hard to consistently hit this range as well.
Why Do You Say It Is Superior To Dr. Bernstein’s Approach?
In terms of the results I expect it is possible to get similar results with Bernstein but where I see this approach having the edge is:
Food management is MUCH simpler: Aussielent takes care of the main meals and you simply choose snacks which you like and which work for you. Compare this to Bernstein where you have to craft meal plans (he literally wrote a nearly 300-page book just on this topic alone), have no snacking, have to consider “forbidden” and “allowed” foods; it is a lot more work
Insulin management is MUCH simpler: Getting the looping pump to do the heavy lifting means I literally go for hours a day, not thinking about diabetes and I never need to “sugar surf” my way down. For the above results I did not even declare carbs or bolus; the loop took care of it. In the case of Bernstein, from Dave Dikeman’s video which I mentioned in my preparation blog, we learn he treats lows with glucose 1-2 times a day and, if he goes above 110 mg/dL (6.1 mmol/L) he uses an intramuscular shot of rapid acting Novolog. This is not including any R-insulin injections he does to cover meals, plus injections for basal and dawn phenomenon management.
Hormone fluctuation management is MUCH simpler. A good example of this is dawn phenomenon. For someone who is looping, the pump manages it overnight with no human intervention required. Here, Dr. Bernstein admits he and most of his Type 1 patients go up overnight and his solution is getting up, every night around 4am and doing multiple injections of different insulins which, to me, is a recipe for disaster.
The fact is the most recent edition of Dr. Bernstein’s book was written over ten years ago and a LOT has changed since then. It make sense the innovations which have come over the last decade, such as looping systems, can help us manage diabetes better and remove some of the mental burden of managing the disease.
The other big advantage of the Practical Diabetic Solution is there are still plenty of levers to pull for even better results e.g. the inclusion of exercise, bolusing and declaring if required, flexibility in snack strictness to suit the individual, augmentation of pump delivery with needle delivery etc. whereas, with Bernstein, it is so strict, there is, in my opinion, little room to move or to be creative.
Will I Be Continuing The Practical Diabetic Solution?
My position has not changed. To explain my position, I will again quote Dr. Bernstein adherent, Dave Dikeman: “I want to be normal…Not normal in that I can eat a birthday cake with everybody else but normal in that I want to have the same blood sugars as everyone else”. I respect this position but I simply do not share it. I see no reason why I cannot have a small slice of cake at the occasional birthday party, estimate the bolus and have the loop soak up the rest and my Solution allows for that. My goal is to minimise maintenance and maintain blood sugars enough to minimise the risk of complications, helped by regular check-ups.
Similarly, if I go to a restaurant, I do not want to pull out a meal plan meal and eat it while my family orders; I want to share in the experience with my family and experience the food as the chef intended. Food is an integral part of human social interaction, it is even in our language; the word “companion” comes from “someone who you break bread with”, “mate” comes from “someone you share your food (meat) with”, and to nurture comes from the concept “to feed”. To shun this link is to shun who we are.
Where I am likely to embrace the Solution is at breakfast, lunch and while travelling. Morning is a rushed affair in our house so a quick meal shake which I do not need to think too hard about is perfect. As I mostly work from home, I usually eat lunch alone so, again, a shake which will not spike me and make me a zombie in the afternoon, which is perfect. Conversely, if I go into work and my colleagues go out for lunch I will join them and leave the shake in the locker. Dinner is around a dinner table and shared with the family. This is sacrosanct for us and the Solution will not be part of it.
For travelling, the Solution is perfect. At conferences or, for example, all day workshops, there is often limited eating options and the options provided are often carby. A meal replacement shake is easy to carry with me and removes the issue.
What About You?
For someone looking for some stability in their numbers and piece of mind, consider the Solution. As mentioned here, the latest clinical thinking is an HbA1c below 6.5% or a TITR of greater than 50% is sufficient to avoid the risk of long term complications. Even if you just replace breakfast, you will likely be gluco-normal through the night (thanks to the loop) and up to lunchtime, which is already more than half the day i.e. more than 50% TITR. Anything above and beyond this is a bonus.
For the person aiming for normal blood sugars, the plan, as I followed it, is worth considering and the barrier to entry and exit are quite low as it does not require exercise, food plans, and kitchen overhauls (other than waiting a few days for the Aussielent or equivalent to turn up). If, like me, family dinner is important, you can “snack” on the elements which will not spike you which they are eating, while drinking your meal replacement (which is what I did this week). I literally saw stunning results by the first day so try it and, if you do not see improvement, move on.
Let me start by making it clear I am quite the fan of Dr. Bernstein. I have his books and have watched all of the Diabetes University videos on YouTube. If you are new to diabetes and want a foundation on the disease and how it works, his videos are a great place to begin. Dr. Bernstein took responsibility for his disease and came up with a solution which worked really well for him. He then published his method and a lot of people have success with it. However, the last version of his book published was over 10 years ago. A lot has happened in regards to technology, medications, and food options in that time so I thought it was worth exploring how to improve on his work for my own personal benefit and that of the diabetes community.
What Is Dr. Bernstein’s Diabetes Solution?
I had a quick browse through my copies of “Dr. Bernstein’s Diabetes Solution” and “The Diabetes Diet” but could not find a good summary of his approach. Diabetes Daily give some good context on the man and the solution which may be worth a read. In short, Dr. Bernstein’s goal is for people with diabetes to have “normal” blood sugars i.e. blood sugar levels indistinguishable from non-diabetics. His approach involves:
Low Carbohydrate (less than 30g/day) and high protein/moderate fats
Three meals per day, no/limited snacking, with each meal having effectively the same macronutrient profile each day
His starting suggesting is a breakfast with 6g carbohydrate, lunch with 12g carbohydrate, and dinner with 12g carbohydrate
He advocates regular exercise which promotes muscle growth, weight loss, and improves insulin sensitivity
“Insulin Hacking” i.e. intramuscular injections using rapid insulin
He is generally against the use of technology in his book, preferring multiple daily injections although concedes Continuous Glucose Monitors (CGMs) may have their uses (“If I were living alone, I’d use a CGM to protect from nighttime hypoglycemic episodes” – Diabetes Solution, p357). For pumps, Bernstein lists a range of advantages and problems on pages 330-332. Quotes include:
“Corrective injections are elegantly simple” – Diabetes Solution, p331
“Pumps can be set to automatically increase the basal delivery rate shortly before arising in the morning, thereby circumventing problems associated with the dawn phenomenon” – Diabetes Solution, p331
“Insulin pumps cannot be used to give intramuscular injections for more rapid lowering of elevated blood sugars” – Diabetes Solution, p331
“Contrary to a common misconception, they do not measure what your blood sugar is and correct it automatically” – Diabetes Solution, p332
If you have the book, check them out. For me, many of the criticisms of pumps equally apply to multiple daily injections over a prolonged period but decide for yourself
To see Dr. Bernstein’s Diabetes Solution in action, Dave Dikeman is a great example. He has been living with type 1 diabetes since the age of nine (he is now around 18 years old) and has worked closely with Dr. Bernstein, (I believe assisting with his YouTube channel) for many years. He presented his approach to Low Carb Down Under about a year ago. It is a great summary of how the solution works and shows someone achieving great success with it.
What Results Can We Expect From Dr. Bernstein’s Diabetes Solution?
A survey was conducted on members of the Facebook “Typeonegrit” group with 316 respondents, a group of “type 1’s and parents who follow Dr. Bernstein”
Average time following Dr. Bernstein’s Diabetes Solution was 2.2 ± 3.9 years
Mean daily carbohydrate intake was 36 ± 15 g
Average HbA1c was 5.67% ± 0.66%
2% of respondents reported diabetes-related hospitalizations in the past year
My Current Approach And How It Compares
Using the Bernstein summary as a prompt, here is my current approach:
“Low-ish” carbohydrate: I do not count carbs but estimate I eat maybe 100-150g per day
I generally have a white coffee for breakfast, nothing regular for lunch (sometimes food, sometimes snacks, sometimes nothing), and dinner with the family which usually has no more than 50g per serving, but this is not a hard rule
Snacking happens when I want. It is small and I do not give it too much consideration
Little to no exercise
I use a commercial looping pump/cgm. No injections, no finger pricks
I do not declare any carbohydrates, do not bolus or boost; the loop takes care of it
In terms of the results I am getting, I have been looping for close to 12 months and my last HbA1c was 5.5%. Given I am not following Dr. Bernstein’s Diabetes Solution at all and getting superior results to the average participant in the Typeonegrit survey, over a shorter period of time, perhaps there is value in assessing a hybrid approach for even better results.
Simplifying Food
A big part of any summary of Dr. Bernstein’s Diabetes Solution involves the listing of forbidden and allowed foods. In the Diabetes Daily summary mentioned above, of the 5,700 words, 4,500 describe which foods can and cannot be eaten. That is over 3/4 of the description. In Dr. Bernstein’s Diabetes Solution, chapters 9, 10, 11, and 25 (roughly 120 pages out of 460 pages or a quarter of the book) cover food and its management. I think it is fair to say food management is a big part of Dr. Bernstein’s Diabetes Solution.
Two years after the last version of Dr. Bernstein’s Diabetes Solution came out, a company called Soylent appeared offering nutritionally complete meal replacements for time-poor people who do not like cooking. Other companies offer similar products, including Aussielent which also offer a low carbohydrate alternative (shown below).
A serving provides about a quarter of the body’s micro-nutrients. For macro-nutrients a serving provides:
1700kJ (406 Cal)
30.4g Protein
26.9g Fat
7.1g Carbohydrate (excluding fibre)
5.4g Fibre
So, in theory, four servings a day will provide all the micro-nutrients the body needs. It passes the “less than 30g of carb per day” test of Bernstein and gives a total energy of 6,800kJ (1,624 Cal). The average adult requires between 8,700kJ – 10,500 kJ (2,000 – 2,500 Cal) per day to maintain a healthy weight (https://www.healthdirect.gov.au/kilojoules, https://www.nhs.uk/common-health-questions/food-and-diet/what-should-my-daily-intake-of-calories-be/) so we have a deficit of at least 2,100 kJ (500 Cal). Also, the packet is clear in saying “Not to be used as a sole source of nutrition”. So, we can embrace the energy deficit and lose some weight or use it for snacking. As long as the snacks do not spike us we are good to go. There are plenty of foods which, as people with diabetes, we know we can eat without spiking. For me, I will be eating things like:
Home made protein balls (about 735 kJ/175 Cal each)
Cheese and crackers (516 kJ/125 Cal)
Water Chestnuts and Soy Sauce (about 190 kJ/45 Cal)
Drinks will be sugar free so it will be diet soft drinks, mineral water (soda water), sugar free cordial, and tea/coffee.
I also only have enough Aussielent for four days so this will be the length of the experiment.
Exercise
There is no doubt exercise is good for anyone. I will not be changing my routine for the next four days though. Clearly, if there was a desire to make this a long-term venture, introducing exercise would be good. Keeping this as=is also removes it as a confounding variable in the results.
Measuring and Administering Insulin
I have no doubt the use of a CGM and a Pump, with looping, have been a big part of my success to date. The pump is watching my blood sugars every five minutes and making adjustments to move my levels towards my target (currently 5.4 mmol/L or 97 mg/dL). Unlike Dr. Bernstein’s Diabetes Solution, which relies on basal insulin (sometimes delivered in the middle of the night to counter dawn phenomenon), and injecting insulin into muscles, my loop has no reliance on me being awake, or “insulin hacking”.
Looping was not available when the last edition of Dr. Bernstein’s Diabetes Solution came out which is why he says “they do not measure what your blood sugar is and correct it automatically”. Today, they can, and are very, very effective at managing overnight and hormonal fluctuations.
How Will I Measure Success?
My plan is to document my baseline in this blog and then review afterwards and see what has changed.
Time In Range (4.0 – 10.0 mmol/L aka 72 – 180 mg/dL): 88%
Time Above Range: 9.3%
Time Below Range: 3%
Average Glucose: 7.2%
Standard Deviation: 1.9 mmol/L aka 34 mg/dL
Notes:
The lows are due to poor readings of the CGM on insertion, as confirmed by finger pricks (the only time I do them). For me, the G6 sensor reads low for the first few days after insertion
Variation between the reports is generally due to differing periods of review. For Diasend it was the last week of data, for Sugarmate it is written on the measure (some say 2 days even though I specified 3, I am not sure why this is the case), and Tidepool was one week.
Are You Planning To Continue With This Approach?
Only so much can be demonstrated over four days. My primary reason for doing this is to see if Aussielent meals are a viable option when I am travelling for work as I have less control over what I eat when at conferences or onsite with clients. Carrying some powder and olive oil while travelling is a relatively simple solution. However, if I can also develop some preliminary data combining looping technology and a very-low carbohydrate diet, this may be worth more analysis later either by me or other people curious to try different approaches.
I actually have no interest in pursuing a very-low carbohydrate regimen long term. The primary goal of Dr. Bernstein’s Diabetes Solution is normal blood sugars. My goal is to minimise maintenance as much as possible to reduce the risk of burnout i.e. a sustainable approach, and to minimise the risk of long term complications (which is not quite the same as normal blood sugars). What I mean by this is maintaining a sufficiently low HbA1c that clinical evidence suggests I am close to the same risk of long term complications as a non-diabetic and getting regular check-ups is enough for me; I do not need to obsess about every spike or deviation.
Also, I like going out to restaurants and eating meals as the chef intended; I enjoy eating in moderation, rather than fixating on forbidden and approved foods; I enjoy spending literally hours a day not thinking about diabetes management. I see no compelling reason to change any of this.
Where To From Here?
For the next four days, I will be following the “Improved Solution” and writing about it next weekend. I will also be getting blood work done towards the end of this week as I am seeing my endocrinologist soon. This will give me additional results which I will publish later.
I had the privilege of being a Dedoc Voice in Berlin at ATTD 2023 this year. While there were many fascinating discussions (many of which I Tweeted about at PracticalDeeb) there was one in particular that really stood out and that was a frank and open discussion on the clinical relevance of Time in Range and whether it needs revising.
For those who want to cut to the chase, there is a tl;dr at the end.
What is Time In Range (TIR)?
Before launching into the presentations at ATTD, it is probably best to explain the term Time In Range. Thankfully, I have already written a piece explaining it, using a presentation from EASD 2020 by Professor Pratik Choudhary (who was my t-shirt hall of fame recipient for the conference).
In short, the default standard is the range 70-180 mg/dL (3.9-10 mmol/L) and the traditional target was to reside within this range for more than 70% of the time, as measured by a Continuous Glucose Monitor (CGM).
This presentation at ATTD 2023 put the target under the microscope to see if it needed revising.
Time in Tight Range: The New Standard?
Professor Thomas Danne introduced a concept of a Time in Tight Range (TITR) which reduces the range to 70-140 mg/dL (3.9-7.8 mmol/L). Why a new range? Because Professor Danne literally said “I don’t want to lie any longer”.
The suggestion was, to live a normal, healthy life, 70% TIR was not enough but to give truth to what needs to be achieved would discourage when encouragement was needed so a “soft target” was given instead. This admission will vindicate many online pundits who rail against TIR as insufficient to avoid complications. In essence, this has now been confirmed.
An advantage of considering TITR is spikes, which may remain within TIR but not TITR, can be identified and worked on, assuming managing levels within TIR has been achieved.
It is interesting to note that Professor Danne considered 70-140 as “normoglycemia” i.e. normal blood sugars and above 140 as “dysglycemia” (not normal blood sugars) and therefore concluded TITR can also be used as a range for early detection i.e. Stage 2 Type 1 Diabetes (when blood glucose levels are not normal but insulin is not yet being used). Professor Danne also cited a paper that concluded that time above the tight range predicted the progression to Stage 3 Type 1 Diabetes i.e. when insulin is required.
Professor Danne went further and stated he felt the latest ISPAD Time in Range guidelines do not go far enough, claiming the life expectancy of a child with type 1 diabetes will not be the same as a child without type 1 diabetes using these targets.
His preferred goal? An ambulatory glucose profile characterised as “Flat, Narrow, and In Range” (FNIR).
The Gritters can raise a glass of alcohol-free, non-fizzy coconut milk and celebrate that academia is beginning to align to their strict goals. So did Professor Danne go on to talk about all people with type 1 diabetes adopting an ultra-low carbohydrate diet, and eating a strict three meals a day? Well, no.
As alluded to earlier, his goal is to provide guidance to people with diabetes and their carers which is considered achievable and sustainable, even if this means historically softening the targets. Also, Professor Danne made it clear a qualitative daily target was insufficient but a SMART (Specific, Measurable, Achievable, Relevant, and Time-Bound) goal was also needed i.e. quantitative as well as qualitative. His solution? Automated Insulin Delivery i.e. Looping.
His evidence that AID leads to improved results? A comparison across countries of HbA1c pursued through various means compared to Time in Range pursued through AID. Even in the best performing country (Sweden) people with type 1 diabetes struggled to get an HbA1c below 7% (50 on the scale). However, all countries consistently achieved a TIR above 70% which is broadly equivalent to an HbA1c of 7% using AID.
But are we not considering TITR, not TIR? Alas reporting on TITR is still quite limited but Professor Danne is hopeful. On top of using AID, he also mentioned the results being achieved with SGLT2i drugs (which basically redirect glucose in the blood to the bladder, keeping blood glucose levels low).
The jury is still out on the use of SGLT2i’s in people with type 1 diabetes because of the increased risk of eDKA but Professor Danne is hopeful, the rise of continuous ketone sensors will address this. For someone like me who still has residual pancreatic function, the use of an SGLT2i is more compelling because the residual insulin means any form of DKA is extremely unlikely.
More evidence of the superiority of AID over other methods came from a Cambridge study which showed improved sustainable performance over two years.
Doctor Peter Adolfsson continued the story by presenting on the specifics of what those SMART goals should be.
First he talked at what normal blood sugars in children look like where the TITR is close to 90%
A more recent study with more accurate CGMs puts the number at 96% TITR
Doctor Adolfsson then moved the discussion to what target do we need to achieve, not to match people without diabetes, but to reduce the risk of complications to match the non-diabetic population and suggested an HbA1c of 6.5% was sufficient for this which corresponded to a TITR of 50%. This comes close to the conclusions I came to a while ago that an HbA1c under 7.0% is good but, if it can be achieved without severe hypo risk, an HbA1c of 6.4% is better.
tl;dr
Professor Danne acknowledged that, historically, advice to people with type 1 diabetes had been targets which still exposed them to long term complications because it was simply too hard and arduous for the client to achieve tighter targets i.e. the goal was harm minimisation rather than elimination. However, the advent of Automated Insulin Delivery (AID) / Looping has meant it is much easier to achieve superior results with minimal additional effort.
This has led to the consideration of the Tight Time in Range (TITR) which puts the goal for glucose levels to be between 70-140 mg/dL (3.9-7.8 mmol/L). This new range has the potential to be diagnostic of the stages of type 1 diabetes as well as provide improved guidance for glucose control.
In terms of the percentage of time to aim for in the new range, for truly normal blood sugars, the target is 96% of the time. However, there is no evidence that can be achieved through AID. The compromise target is to aim for a percentage which reduces the risk of complication to that similar to the non-diabetic population. Research suggests this lowers the target percentage to 50% TITR which corresponds to an HbA1c of 6.5%.
In other words, rather than pursue the goal of “normal blood sugars”, the goal is “free of long term complications”. What I personally like about this approach is TITR can be measured, at home, by anyone with a CGM (unlike HbA1c). Also, the individual can choose how strict they want to be in pursuing “normalcy” i.e. sit at 50% TITR and minimise the risk of complications or go harder to achieve the blood glucose levels of a person without diabetes. This latitude in the percentage allows flexibility in terms of the individual’s personal circumstances which, in turn, minimises the risk of burnout.
Last year I wrote about giving myself permission to let my hair down and the risk of mental stress and burnout which can come from obsessing with food. Today is again my diaversary and I write this in the early hours (travelling to ATTD 2023 in Berlin last week has made me an early riser) with the day ahead of me. Am I going to go big this year and “release the steam valve”? Actually, no.
A Year Is A Long Time In Diabetes
A lot has changed in the last 12 months. A little under a month after writing last year’s article I got my HbA1c results and they were trending the wrong way. While my HbA1c was “only” 6.6%, I had already drawn my line in the sand as 6.4% with 7.0% at the outside so I began using insulin. I went through the usual process of working out my “numbers” but really did not find success in multiple daily injections and, by the start of August, began looping via AndroidAPS. Today I am using a Dexcom G6 and an Ypsopump, connected via CamAPS. It has been quite the journey.
So Why No Blowout?
The fact of the matter is, for me, the looping rig has removed almost all the management. Pre-insulin, especially towards the end of that phase, every meal had an element of stress to it. I follow a lowish carbohydrate regimen (I do not carb count but avoid the foods which will spike me or eat them in moderation) but, despite this, was seeing big numbers. Using multiple daily injections was not much better. Estimating carbs was not a big deal but getting enough insulin in to get past the insulin resistance AND keep the numbers flat was difficult with lots of sugar surfing.
Looping has addressed all of this. With some residual pancreatic function still in play I can set the pump looping and do not even have to declare meals. If I stray from the path of lowish carbohydrate my numbers go up but the loop responds and they soon come down again relatively quickly. The only management I do is an insulin cartridge change every couple of days and an infusion set change every 3-4 days. I check in on my glucose levels throughout the day but this is more curiosity than anything else.
I literally go for hours every day without thinking about diabetes, seriously.
Without the shadow of diabetes hanging over me, the latent stress is gone and, while a milestone of sorts, today is just another day. I imagine, as it is Friday, we will go out for a nice meal but I doubt I’ll go much more wayward than having a cheeky dessert.
What About Your Numbers?
It is well and good lauding looping but the proof is in the low-carb pudding. How are my numbers holding up? I had an HbA1c test a couple of weeks ago and it came back as 5.5% which is a great turnaround. My Time in Range (70-180mg/L 3.9-10 mmol/L) moves between 90-95% and my Tight Time in Range (70-140mg/L 3.9-7.8 mmol/L) generally sits between 75-80%. I will be writing a separate article on Tight Time in Range which was a big topic of conversation at ATTD 2023.
Is there room for improvement? Absolutely, and with zero hypos (I did stray a little low once with all the walking around Berlin but generally none ever) I am slowly making the loop more aggressive by setting a lower target (currently 5.4 mmol/dL) and adjusting the IC ratio.
Why Looping Is So Exciting
Burnout is a big deal for people with diabetes. Suicide is a big deal for people with diabetes. I could quote numbers but you can Google just as well as I can.
While it should be noted that there was much talk at ATTD 2023 of the next generation of looping eliminating the need to bolus for food, I am an exception. The majority of the loopers I know, who have little to no pancreatic function, still need to declare meals/bolus. Nonetheless, if looping can bring some of the mental relief to others as it has to me I have no doubt it will impact suicide rates, meaning less dead people with diabetes and also impact burnout rates meaning better control/management and less long term complications. The jury will be out for literally decades on whether my hypothesis is true or not but I am hopeful.
Next Year?
It is hard to say. I have no doubt my residual pancreatic function will dwindle over time but with the pump pouring insulin into my body, my pancreas is working a lot less than it did a year ago which should help maintain it. Assuming my pancreas holds up, my seventh diaversary should be similar to this one. If not, by then the looping algorithms will have improved and, as I am still using Novorapid, there is also the option of the faster acting insulins to assist. I am hopeful for my future and the future of all people with diabetes.
The Practical Diabetic 