The story of my life: not normal but not too abnormal

Low BSL's

The Annual Review is an institution in CF care. Because CF affects a heck of a lot a huge amount of data is produced during annual review tests. It’s common to check up on bone density, fat-soluble vitamin levels, kidney function, liver function, hormone levels, auto-immune markers, X-ray, CT scan, Cystic Fibrosis related diabetes (CFRD) status, lung function, weight, what bacteria are burgeoning and what antibiotics they are sensitive to, and if the person is having an allergic response to any fungi. They are in essence a report card for all parts of the body.

My favourite conversation happens with my endocrinologist. Each year I see my oral glucose tolerance test (OGTT) results get worse and we revisit the fact that I am yet again more insulin resistant and more glucose intolerant. Last year I was almost in the straight-out-abnormal category.

The OGTT is the very definition of an artificial situation so my endocrinologist wanted to get a handle on what my blood sugar levels (BSL’s) did in a “real world” situation before we decided upon any treatment plans too hastily. I was tasked to take my BSL’s at the beginning of a meal and then at one hour and two hours post-meal.

Easy, right?

Not so much.

Example #1

On a couple of occasions we ate dinner later than usual which meant I would need to check and record my BSL’s after 10pm. When I was going to be in bed. Asleep. Mission aborted. Fail.

Example #2

On the weekend there were a few times where I had an unplanned gelato, iced mocha or choc top at roughly forty minutes post meal. Which meant it would affect my one hour BSL’s, and possibly my two hour readings as well. In the rigorous scientific pursuit of a real “real world” situation I thoroughly enjoyed each sweet treat and set the bar extra high for my mostly-absent pancreas. Potential fail.

Example #3

Let me just say that two people checking their BSL’s twice in a darkened cinema is tedious. It takes a coordinated effort, liberal use of the iPhone torch and much annoyance for our fellow movie-watchers. Mini fail.

To my educated-but-not-professionally-trained eye my results were a little mixed.

BSL’s in the green zone would elicit an exclamation: “Ha! There is no way I have diabetes. My pancreas totally rocks!”

BSL’s in the red zone were accompanied by a lament: “O. M. G. I have diabetes. I completely do. Let the lifelong stabbing begin.” Cue Shakespearean-esque enactment of me stabbing myself to death.

After considering the data my educated-and-professionally-trained endocrinologist toed the party line: “You are not normal, but you are not too abnormal so we are just going to keep monitoring you – possibly until the very end of time. Let’s schedule a verbatim repeat of this conversation in twelve months.”

I happily cancelled my lifelong stabbing plans.

My mostly-absent-and-not-normal-but-not-too-abnormal pancreas does challenge me sometimes. I’m sure there are moments where my sugars are too high but I currently live in blissful ignorance of this. There are definitely moments where my sugars are too low because, one presumes, my blood sugar homeostasis is just a smidgen out of whack. I feel hungry, shaky, super hot and sweaty, cannot make sensible decisions and am likely to get into an argument with the nearest person (ie: Dave).

I recently carried out an internet search about CFRD to educate myself a little on this tricky subject. I stumbled across a journal article published this year by my endocrinologist, Dr Steinbeck, and Dave’s endocrinologist, Dr Markovic. They reviewed the literature about why PWCF can experience low blood sugar in the absence of a diabetes diagnosis and insulin therapy. The short answer is: no one knows. So whilst no one knows is not comforting, the fact that both of our endocrinologists know that no one knows is comforting, albeit in a slightly odd kind of way. We are all completely clueless together.

The last time I was at clinic I was approached about taking part in yet another clinical trial to try and unravel the reason(s) for the above medical mystery. I was a tad irritated because I had basked in the glory of not being enrolled in a clinical trial for all of twenty seconds after receiving my, you guessed it, not-normal-but-not-too-abnormal sleep study clinical trial results. I huffed and puffed and yet consented to reading the patient information sheet, talking with the investigator and completing a preliminary survey. I said yes (which we all knew was going to happen if they gave me long enough to ponder the greater good). Thus, in a couple of weeks I will be doing an extra long OGTT. Three hours of rollercoaster fun! Yipee! I can hardly contain my excitement!

I will start the test hungry, dehydrated and with slightly low sugars. I will be cannulated (eventually, one heartily hopes). I will drink 100% pure glucose and experience the sleepiness and nausea that accompanies soaring sugars. My mostly-absent pancreas will finally realise it has a job to do and begin releasing insulin into my blood stream – too late and too much. My sugars will go down and down and down until they reach 3.5 whereupon they will halt the study and give me another sugary drink to bring my sugars back into the normal range. I will need to steadily eat a variety of food for roughly an hour before my sugars decide to play nicely. My mostly-absent pancreas and I will exit the test in a state of exhaustion.

But, I will have contributed to science. So, there is that. Totes worth taking the day off work for, am I right?

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4 thoughts on “The story of my life: not normal but not too abnormal

  1. Pingback:  Physio differences | capturing cf

  2. Pingback: Rollercoaster ride | capturing cf

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