In my second blog I have covered some of my personal memories of the 35-year period using an insulin mix of short and long-acting insulin. In this third blog I will tell you about a more recent and impactful change. The switch to another insulin therapy, also changing my lifestyle.

A modern diabetic after all

Upon my relocation from Austria to Germany in 2017, again I soon was on the look out for a general practitioner to subscribe my medication Novomix and Candesartan (blood pressure drug), pen needles and test strips. In all honesty, I used to be under the care of an internist for a relatively short period after my diagnosis. After my first relocation (away from my place of birth) I have always had general practitioners for the HbA1c assessments and for the prescriptions. In my previous blogs I have told you about my disciplined life on 2 daily injections and 6 meals. 35 years, with sporadic searches for potential new developments in diabetes treatments. In Vienna I had a fellow-diabetic in my team, who, in my opinion, tested her glucose level quite often and gave an extra injection as a result of it. She would join the rest of the team eating cake that was brought in by another colleague, whereas I would always say ‘thank you, but no thanks’.

The assistant of the targeted general practitioner in Germany (conveniently close in the same street!) informed me that the practice did no longer accept new patients. I did not want to leave without a ‘fight’ and started a friendly chat about how difficult it is to find your way having moved from abroad and that my search for a doctor was on the top of my list. She started apologizing and mentioned that the practice had specialized on treating diabetes patients, …. Bingo! And maybe she was a bit resentful, but she could not refuse diabetics, and for the first time in a very long time I had an appointment with a diabetes-expert.

After two weeks, holding the letters from my Austrian practitioner (list of HbA1c values and medication I was on), I was first examined by a nurse. Potential nerve damage was assessed with a feather tickling my feet: all was fine! HbA1c was determined on the spot using a finger prick test – thusfar I was used to giving up a vial of blood to be sent to the laboratory for analysis. The result was 5.8%. Excellent! Weight 85 kg – also fine with my 6’4 height. Blood pressure was despite my medication (Candesartan) somewhat high: 160/110. In the morning I had had a rather unpleasant conversation with my supervisor; after only a few weeks I was sad to realize that the company culture was not like what I had anticipated – maybe that had resulted in elevated blood pressure values.

At the doctor’s I was asked to handover my glucose meter (OneTouchVario), which he connected to his computer. He mainly observed relatively high and low values – I tried to explain that I do not test at regular intervals but tend to only test when I suspect either high or low blood sugar levels. He then wanted me to prepare day curves over the next weeks, testing every 2 hours, and writing down how many bread units I consumed during the day. He sent me home and to consider a new insulin therapy, more contemporary and not as old-fashioned to only use mixed insulin.

Two weeks thereafter back at the doctor’s the curves looked reasonable well, including the registered meals and carbohydrates transferred into Bus (bread units: 1 BU = 10 grams carbohydrates). From the still significant number of low glucose values he concluded that I would have had more and lower values in case I had not consumed additional food – I explained that for 3 years I was used to eat in-between-meals/snacks. Personally, my lesson was that frequently testing blood sugar helped me to prevent too low levels; in that respect I agreed with the doctor that I used the tool food to compensate. He went on to tell me that, though a relatively well-established diabetic, nowadays most diabetics are treated with two types of insulin. One injection with long-acting insulin and several injections with short-acting, depending on how often you eat and what. He asked me to consider (I am sure he had been attending a “change-management-course”), but I immediately agreed. The only thing I proposed is to start if and when I could monitor my blood glucose continuously without having to damage my fingers; the previous year I had, at my own expense, tried the FreeStyleLibre sensor from Abbott. I still had the reader so I only needed to order a few sensors for this experiment. And then it started.

With the arrival of the sensors, the doctor prescribed Toujeo as the long-acting and Fiasp as the short-acting insulin. We had some debate about the tie of the Toujeo injection, because the doctor preferred injection in the evening in the belly area, always at the same time. My preference is to have this injection in the morning in the upper leg; it was akay. I planned to use the belly skin for the Fiasp injections. He also prescribed pen needles, much shorter than the 8 mm that I was used to. The 4 mm needles would allow for 90-degree angle injections into the skin, whereas with the 8 mm needles I had been used to 45-degree angle injections into a fold of skin and use a cotton swab when pulling out. Wow, this would take some time getting used to!

The change was and still is enormous! The doctor had given me an initial scheme with a fixed dose of Toujeo and several different doses of Fiasp depending on what he called the bread-unit-factor (BUF). During the first two weeks, using the FreeStyleLibre measurements, I have been having quite a few correction injections, but with the new 4 mm needles that was no problem for me at all.

I finally nailed the dose of Toujeo refraining from food and Fiasp injections after the morning injection. I am currently using 14 units that ensures my blood sugar to be in a steady state, day and night.

Having switched from 6 meals at regular times to 3 (relatively larger) meals I no longer have to stick to a schedule. Depending on the blood sugar values I inject Fiasp; with values between 5 and 8 mmol/l there is no correction required and I inject 1 unit for every bread unit I plan to eat; this so-called BUF may differ per person and over the day. In case of values >8 I add a correction-dose in order to bring the value down to 7: 1 unit to reduce 2 mmol/l. For example, I eat 5 sandwiches (5 BU) and the meter indicates a value of 11 mmol/l (200 mg/ml) then I calculate: to bring the value down from 11 to 7 mmol/l it needs to reduce with 4 mmol/l for which I need 2 units; for the 5 sandwiches I need, with my BUF (of 1) 5 units: I therefore inject 7 units in total right before this meal.

What a difference when compared to how I dealt with this before – I simply would not eat with a blood sugar of 11.

In case the meter shows a value below 5 mmol/l (90 mg/ml) then I start eating first, before injecting Fiasp after approximately 10 minutes.

It appeared to be an enormous lifestyle change, after 35 years as a disciplined diabetic on mixed insulin, to switch to one daily injection with long-acting insulin and several meal-depending injections with short-acting insulin. Because of the new, short pen needles, the discomfort of the increased number of injections is low. It definitely provides for more freedom – for sure that there is no longer a need to eat at scheduled times is ‘liberating’. Also, the principle that I can actually eat what and how much I want (from a sugar/carbohydrates-perspective) is an advantage – if I want I can simply use my Fiasp-pen in case I choose to eat a piece of cake.

Previously, when people would ask about my eating habits (I used to bring a bag of bread to work – that is without any filling) I would reply that I simply eat to keep my blood sugar in check, but that dinner was the time to really enjoy. Nowadays I am also looking forward to lunch time! Nice!

In my ‘former’ life I have controlled my diabetes, mainly by feel and infrequent finger prick tests, beside the more regular HbA1c assessments, using the increase/decrease of food as a tool. As mentioned before, the new insulin therapy has resulted in a lifestyle change in a short time. This new lifestyle, however, kind of made me addicted to continuous monitoring of my blood sugar values. I honestly don’t know if I could have successfully made this switch without the FreeStyleLibre. I learned, for example, through constant monitoring, that now and then I injected too little Fiasp – a new pen would inject some air before insulin; that certain sports activities are affecting/draining my muscles the night and even the next day after the activity, and send my blood sugar levels toward 2-3 mmol/l; and there are more examples of how continuous monitoring allows you to intervene and control blood glucose.

In the Netherlands CGM (continuous glucose monitoring) devices are not reimbursed, so you either stick to finger pricks or to personally pay for the costs. Like I said before, I currently live in Germany and my ‘Kranken Kasse’ pays for the FreeStyleLibre sensors.

To conclude:

In my work, but secretly also privately, I am fascinated by managing changes. To make people realize that the change will have not a negative but a positive impact. Moreover, the next step-by-step process to actually implement the change.

But why, and this question keeps bugging me, is it that I have opened up so late to this change to my insulin therapy? Why did I not hear this before, or did not want to hear?

This question is also at the centre in one of my next blogs, about a sudden change to my lifestyle with respect to food and nutrition.


FURTHER READING

Toujeo

This is a long-acting insulin, glargine, from Sanofi, that is delivered to your body slowly and continuously over 24-30 hours resulting in a steady-state.

Fiasp

Fiasp, from Novo Nordisk, is also called a mealtime insulin, to be injected right before or up to 20 minutes after the start of a meal. Maximum activity is reached somewhere between 1 and 3 hours after injection and it wears off after 3-5 hours. Fiasp = Fast-acting insulin aspart (NovoRapid).

Candesartan: Angiotensin 2 antagonist inhibitor resulting in relaxation and dilatation of vessels; it also stimulates excretion of natrium (salt) via urine. Both effects help to lower blood pressure.

In this blog I will take you to the specific period of my life being diagnosed with diabetes at the age of 15. Today, after approximately 35 years, I still vividly remember certain details. Funny enough, one of the first things is that the tennis tournament at Roland Garros’ was ongoing and that I was watching the finals from the hospital bed: Mats Wilander, the Swede, beat Guillermo Vilas, the Argentinian predecessor of the Spanish Rafael Nadal. Vilas’ dedication – he trained 6 hours per day on average, and it was fascinating to observe that, being a lefty, his left arm was twice as thick as his right one.

I don’t know if this is a tell of how the lifestyle change has been communicated to me, but apparently, I have digested the diagnosis and proceeded with the important things in life – likely, tennis was one of these at my age of 15.

What were the indicators of diabetes?

Going back in time I can actually experience the taste of bitter lemon, the soda. Thirst and the urgency to go to the loo. At the same time. And a lot and often. Like most 15-year olds, I lived with my parent, together with brothers and sister. We had a lavatory that I frequented on the ground floor, next to the storage closet with bottles of soda. At night, and sometimes several times, I would jump out of bed, go down to get a bottle of bitter lemon. I would sit down on the loo and urinate, while drinking from the bottle. Hell was I thirsty!

Second signal: “what about some more exercise?” well-intended remarks from parents and brothers looking at my body that, despite a reasonably sporty life, looked kind of skinny. My elder brothers were already using some kind of fitness instruments, like hand and chest muscle exercisers, and I was given an arm-force-controller to strengthen my muscles.
Still, I kept losing weight which dropped to around 59 kg, which is not a lot for a 15-year-old with a height of 6’4. The so-called body-mass-index (BMI) of 15.7 (weight divided by (height times height) in kg/sq meter indeed suggested underweight.
A visit to the general practitioner was quickly made, and a blood test revealed an elevated level of glucose in my blood. An appointment was made with a befriended internist and from that moment on I was officially announced diabetic.
I was hospitalized for a week, receiving lots of information. Practicing injecting, using syringes on oranges, blood sampling for all kind of tests, and of course fingerpricks to measure blood glucose; these were the eighties and at that time still triangulated lancets were used, which were actually cutting your skin and hurt really badly. To the eye doctor, to the dietician, and to other doctors I do no longer see to remember. Every time I was told the same story, that the absence of insulin not only prevented the uptake of sugar by the cells of the body (and consequently the generation of energy for proper functioning of cells and the body), it would in the long run have all kind of nasty effects on the heart and vascular system. Nice to hear. Not! Especially not for my parents. As a 15-year-old I did not care much. An adolescent, having arrived at puberty, typically does not look ahead much further than a few hours. All the attention, initially, was not all too bad.

But then you also get a lot of attention that, as an adolescent, you really could do without. Everyone seems to know someone diabetes. My teacher French said that she had an uncle who lived with diabetes to become 90: “so you can grow old having this disease”. As if I had any concerns about old age at that time. Or horror stories about amputations, caused by poor blood vessels. Or my first visit to the Dutch Society Diabetes (DVN): I am sure well-intended advice has been given, but I remember coming home that I said that every was wearing glasses, with thick glasses like jam jars.
Me, I thought it was all very simple: same life as before, just stay away from sweets, count your carbs, and inject the missing protein (insulin). Other than that, keep doing like before, in and outside of school. To my environment I was undergoing an enormous lifestyle change. For me, I was not really aware and continued to be a happy adolescent having reached puberty.

Change-management plan

In my professional life I have been subject to and have organised several changes, for instance to improve processes, to replace certain internal positions by external ones, to start using new procedures, and so on. Beforehand, a detailed communication and implementation plan is made. The reason for the change and the implications for the organisation and the individual. The latter can be a hot topic for those affected by the change, and the supervisor can take away some of the tension by saying it is okay to be afraid of the upcoming change. That the change beside advantages can potentially have some negative aspects as well. Or provide examples of how other companies or persons have dealt with similar changes.

I doubt it, that at my diabetes diagnosis a detailed change management plan was in place.
I find it interesting now, in hindsight, to think about it; about the advantages and disadvantages of the disease, for instance. The major disadvantage, of course, that the body is no longer capable of producing insulin and that, in case your cells and organs want to keep on functioning, you need to daily self-inject the protein. With 35 years’ diabetes experience I also see the advantages that coincide with this lifestyle change: a focus on healthy living, having my blood glucose values as reminders: regular and proper food low in sugar and fat, regular exercise.

I will tell you more about this in my next blog.

 


 

FURTHER READING

Insulin
“you only know that you miss it when it’s gone” is an appropriate saying considering diabetes, missing insulin. In case your body does not produce insulin, your diabetes is called diabetes (mellitus) type 1; in case your cells have become insensitive to the insulin your body produces then your diabetes is called diabetes type 2.
Insulin is a hormone produced by the pancreas and secreted into the blood (by a group of cells belonging to the pancreas (islets of Langerhans)). Hormones are signal compounds/proteins that reach the target cells in the body via the bloodstream.
Your cells need to take up sugar as fuel. Without it no energy is produced, and cells will fail to grow or function. Normally insulin is being secreted in case of a rise in blood glucose levels – this because of mono-saccharides (glucose) that have entered the blood for example after drinking soda; a sandwich contains poly-saccharides (carbohydrates) that are being degraded into mono-saccharides first before entering the bloodstream and giving rise in blood glucose level. When the pancreas secretes insulin into the blood it stimulates the uptake of sugar (glucose) by the cells from the blood and inhibits the breakdown of fat and polysaccharides.
When you are not diabetic then your glucose levels are stable around 5 mmnl/l or 90 mg/ml. In case insulin is not around the glucose levels in the blood go up, the cells in your body will no longer take up glucose to produce energy, breakdown of fat and glycogen is no longer inhibited. You will get tired as a consequence; also, you will drink more and secrete more urine, because of the kidneys’ efforts to get rid of the surplus of glucose from the blood. Your body cries out for energy and start burning what is available, starting with fat, with muscle mass next. You will start losing weight.

Of all countries I have lived in the glucose levels are expressed in mmol/l in the Netherlands and Eastern-Germany; the unit mg/ml is used in the USA, Western-Germany and Austria. Glucose is a mono-saccharide consisting of 6 carbon atoms, 12 hydrogen and 6 oxygen atoms (C6H12O6). 1 mol glucose has a weight of 180 grams, with a mol being a huge number often used to indicate the quantity of a compound; in analogy to a dozen (being 12 pieces) a mol indicates 6,022 14 × 1023 particles/molecules. A millimole, mmol, is one thousandth of a mol (10−3 mol).
It may suffice to remember that 1 mmol/l glucose equals 18 mg/ml glucose; the norm value of 5 mmol/l therefore equals 90 mg/ml.