It is often said that every diabetic’s journey is unique and it is true. While many of us have similar, isolated experiences, no two journeys are the same.

Paradoxically, the diabetic community can be quite tribal with groups excluding those who diverge from the ‘norm’. As a Type 1 LADA I see this a lot. As an example, when it is said ALL Type 1s use insulin and I have the temerity to point out I do not, I am dismissed as not being a ‘true’ Type 1. Only when my honeymoon ends, it seems, will the LADA be accepted into the tribe as a ‘real’ Type 1. I see little value in this dismissal of diversity.

Is LADA Really Type 1 Though?

If we define the Types by etiology (cause) then LADA falls squarely in the Type 1 camp. Both are auto-immune and, at a point in time, there is literally no test that can be performed to distinguish a LADA from a honeymooning Type 1. The only difference between someone with LADA and someone with ‘classic’ Type 1 is the rate of progress of the disease. While the honeymoon period of a ‘typical’ Type 1 is, at most, a few weeks, a LADA can be insulin independent for up to decade. It is a long time to wait for acceptance.

The other option would be to define the Types phenotypically (how it presents) but it is hard to derive an adequate criteria to separate Types 1, 2, and LADA (or any other Type) on this basis. As alluded to above, the dependence on insulin is often suggested as the distinguishing factor but there are many Type 2s/MODYs/Gestational diabetics who use insulin and all LADAs eventually progress to insulin dependence meaning, by this paradigm, LADAs gradually transition from one Type to another which, in itself, is problematic.

Diabetes UK unambiguously consider LADA as a form of Type 1. Similarly JDRF Australia say “A slower onset form of Type 1 diabetes, known as Late-onset Autoimmune Diabetes of Adulthood (LADA) generally presents with milder symptoms of hyperglycaemia, and insulin therapy may not be immediately required at the time of diagnosis.”

The Struggle for Recognition for all Diabetics

The concept of the only ‘true’ Type 1 being one which uses insulin is a fallacy and is akin to the ‘No True Scotsman’ fallacy.

Person A: “No Scotsman puts sugar on his porridge.”
Person B: “But my uncle Angus is a Scotsman and he puts sugar on his porridge.”
Person A: “But no true Scotsman puts sugar on his porridge.”

This struggle is not unique to LADAs though; all Types have their frustrations when it comes to recognition. This became clear to me at ‘docday’. Docday was a gathering of the dedoc Voices with presentations by some of the Voices on their advocacy work. Ken Tait presented on his frustrations as an insulin dependent Type 2. It was Ken’s talk which inspired me to write this post.

So often Type 2s are assumed to have brought the disease on themselves and that it is a ‘lifestyle’ disease. It is also often assumed that if they changed their ‘lifestyle’ the disease would go away. While there are lifestyle ‘risk factors’, there is no known cause of Type 2 diabetes and many Type 2s simply do not fall into any of these ‘lifestyle factors’. No amount of sugar eating gives you diabetes, there are plenty of overweight people who are not diabetic (and skinny ones who are), and while Type 2 can go into remission through a low calorie diet or gastric surgery, this is only effective in something like 70% of cases. Just as it would be foolish to assume someone from Australia has blonde hair and blue eyes, it is equally as foolish to assume the journey of every Type 2 is the same.

For Type 1s, the struggle is often to be seen as separate from Type 2s. While the cause of Type 2 is unknown, Type 1 is auto-immune (the reason for the immune system going haywire is still unknown but I digress). Type 2s represent around 90% of all diabetics so a lot of research and a lot of articles in the popular press focus on Type 2s almost exclusively. Frequently Type 1s are told that they can put their disease into remission. While this is only partially true for Type 2s, it is completely untrue for Type 1s. Short of a pancreas/islet transplant and immune suppression drugs, there is no remission for Type 1 diabetes.

As mentioned, for LADAs we are rarely seen as ‘true’ Type 1s. We are either labelled as ‘self-loathing Type 2s’ or ‘honeymooning Type 1s’. With a honeymoon that can last up to a decade, for me, dismissing their voice as meaningless is short changing 10% of the Type 1 community. If we can accept other diseases as having stages/progression, why is this so hard for Type 1 diabetes?

Clinical Consequence

Where the issue becomes a little more serious is in the consideration of treatment for the various Types. According to the NDSS (registration database for all diabetics in Australia) there are literally no Type 1 diabetics in Australia who are insulin independent. Given I am one, how is this possible? Like with the registration forms of many diabetes associations, it is simply assumed that if you are Type 1, you use insulin.

To make matters worse, subsidies for medication and equipment is often separated down Type lines. The medications I use to help preserve my beta cells and maintain my insulin independent honeymoon are considered ‘Type 2’ medications so I receive no subsidy for these and obtain them through a ‘private prescription’ at full price. While proven to be effective and safe, this means there are many LADAs who, for no good reason, cannot access the medications they need to remain healthy and live to their full potential.

The notion of Type 1 and Type 2 medications is problematic, not just for LADAs. The same drugs which help me, can help insulin dependent Type 1s with insulin resistance (yes, some Type 1s are insulin resistant) and satiety (one of the hormones which make you feel ‘full’ after a meal is missing in Type 1s i.e. Amylin). This notion of feeling full can also prevent Type 1s over-eating, reduce the amounts of insulin they need, and ameliorate weight gain which is often associated with insulin when it is first used.

Strength in Diversity

Accepting that not all diabetics are the same, even within a Type, does not diminish the journey of any one individual. What it does do is give a voice to all and give other diabetics and health care professionals a more nuanced understanding of this heterogeneous disease. With diversity of experience comes diversity of thought and better solutions to the problems we all face. Every diabetic’s journey is different but we can still walk together and exclusion simply means we walk alone.

It is always humbling when strangers puts their faith in you. This happened to me this week when I was accepted as a dedoc Voice. Dedoc is an international network of diabetes advocates. What is more, it is Type agnostic: all are welcome.

Dedoc also paid for me to virtually attend EASD 2020 (the annual meeting of the European Association for the Study of Diabetes). Usually such conferences are exclusively for medical professionals but dedoc negotiated to allow their ‘Voices’ to attend with a view of socialising the research for a wider audience. Scientists are not always the best at communicating their discoveries so I believe this can only be a good thing.

There was way too much for me to communicate in one blog post so I will be posting a few. For some of the ‘soundbyte’ discoveries, check out my Twitter feed.

I mentioned in the article comparing ketosis and diabetic ketoacidosis (DKA) that, in DKA (Diabetic Ketoacidosis), the liver floods the bloodstream with fuels, such as ketones which makes the blood acidic. However, the usual way a diabetic tests for DKA is to see if there are ketones in the blood. The problem with this approach is ketosis also releases ketones into the blood but ketosis is not dangerous. If we find our blood has ketones how do we know if we are in ketosis or DKA?

As usual, for the quick answer, head over to tl;dr.

The other measure often applied is to test the blood glucose level. With the liver flooding the blood with fuels during DKA, including glucose, it makes sense that the blood glucose levels will rapidly rise. This is usually true, unless the liver’s glucose stores are depleted. This situation leads to a condition called eDKA (Euglycemic DKA). This is a big problem for diabetics who follow a low carbohydrate diet as this can put the person into ketosis but can also deplete the glycogen stores of the body which means, if they do head towards DKA, there may not be a corresponding rise in blood glucose levels.

How is DKA Medically Defined?

DKA is not defined by ketone levels, even though this is often the measure used by diabetics to check. It is actually defined by the pH (acidity) of the blood and the amount of bicarbonate in the blood.

The normal pH of blood is between 7.35 and 7.45 and the body goes to great lengths to keep it in this range. In DKA this goes below 7.3. If only there was a way for diabetics to directly check what the pH of their blood was, this would remove the ketone-confusion. I am happy to say there is a way to check.

The Magic Meter

It took some finding but I have found a pH meter which can measure pH levels to one hundredth of a pH (pH is unitless). The meter is the LAQUAtwin-pH-22 by Horiba Scientific.

The tapered end has a flap which lifts up and a liquid sample is placed on the ISFET sensor underneath (0.1 mL or more). This meter costs around $200 so it is not cheap but cheaper alternatives, such as testing strips and immersive meters, simply do not have the accuracy needed.

To set up the meter ready for testing, you need to calibrate it with the provided solutions. Once this is done (and if you follow the instructions it really is quite easy) you are ready for your blood.

Getting a Blood Sample

It turns out getting blood out of the human body was a lot harder than I realized. I initially tried finger pricking but generating 0.1 mL of blood this way proved painful and futile as I struggled to get a reliable reading. In the end I used butterfly needles and vacutainers ordered online. This combo is what the blood collection folk use to collect blood for analysis.

To get the blood, you remove the needle cover, put the needle into your arm and then push the green end of the butterfly needle through the hole in the top of the vacutainer tube. For tips on technique, I highly recommend searching YouTube (this is what I did).

The end result was a vial full of blood.

I did also consider using syringes, given diabetics (or, at least, insulin dependent ones) have easy access to them but this way looked the simplest given I only had one free hand during the process.

For the curious, the vacutainer tube has a vacuum inside and so when the green end of the butterfly needle is pushed into the tube, the vacuum draws the blood out of the arm.

If you intend to try this at home, one other tip is to use the sample quickly. In my case, if I left it too long, the blood in the tube began clotting so get the blood into the meter quickly before coagulation.

The Result

The meter lived up to its promise and I got a reading of 7.48. This is a little on the alkaline side of the normal blood range but may have been a minor calibration error. Even accounting for the calibration, this is much higher than the 7.3 ‘danger zone’ so no DKA for me today.

tl;dr

Using the LAQUAtwin-pH-22 you can measure the pH of a liquid down to a sample size of 0.1mL and to an accuracy which is meaningful for checking for DKA. Using a butterfly needle and vacutainer I obtained online, I extracted blood from my arm and, using the meter showed a sensible result, consistent with someone who is not in DKA.

This opens up a new way for diabetics to check whether they are in DKA and is also a way aligned to the actual medical definition of DKA.