How I Diagnosed Myself with CF-Related Diabetes

I was diagnosed with cystic fibrosis-related diabetes (CFRD) in the summer of 2018. I think the official diagnosis came late August when I was first prescribed insulin, though it was my glucose tolerance test at my annual review appointment in April that first hinted at the diagnosis.

It was really my own self-awareness that ultimately resulted in me asking for insulin when I needed it, as I felt I couldn’t wait any longer for someone else to make that call. Knowing my body as well as I did, meant that I was making correlations that my Drs weren’t, and it may have saved my health from getting a lot worse. So, I wanted to share the things that led to me pushing for a CFRD diagnosis and the insulin prescription that I needed.

In no particular order...

The blood tests

At my cystic fibrosis annual review appointments, I always had a glucose tolerance test. I arrived fasted, had a blood test, and then drank a pint of glucose. The most sickening breakfast imaginable. I then had regular bloods drawn for a few hours following this, to see how my body responded to all of that sugar.

My results from this came back around 1-2 months after my test.

My HbA1c was normal. My fasting blood sugar (prior to drinking the glucose drink) was 6.1. This was ok. Diagnosis is typically made when this is 7 or above. My blood sugar 2-hours post-glucose was 12.9. Diagnosis is typically made at 11.1 or above.

Based on this, I sort of had a diagnosis of CFRD, but not really. Noone explicitly said that until a couple of months later when I was already on insulin.

Instead, in the meantime, I used a couple of methods to continue monitoring my blood sugar. I was given a FreeStyle Libre continuous glucose monitor sensor (these are AMAZING!). During the 14 days that I wore this, I noticed that my blood sugar spiked after eating but would come back down to a normal level on its own. I was also asked, for a week, to take my blood sugar before and one hour after each meal and to jot this down.

It seemed pretty convincing that I wasn’t managing my blood sugar well, but apparently not convincing enough…

Recurring thrush infections

For months before my diagnosis, I was suffering with recurring thrush infections and no one could work out why. I would have various forms of Canesten what felt like every couple of weeks. And then increasingly long-duration courses of oral antifungal drugs.

I noticed that I just couldn’t tolerate sugar. Every time I ate something high in sugar, symptoms of thrush would soon follow. I remember being at a friend’s wedding and eating a piece of wedding cake. And I hate that I had to weigh up the risk of eating a slice of cake. I knew the chances are that if I ate it, I would get a flare up of thrush, but I really wanted to enjoy the moment with everyone. Unsurprisingly, worsening thrush symptoms followed.

For a long time, I wondered if I had some kind of candida overgrowth in my gut. I wondered if I should cut out entire groups of foods that contained yeast. I wondered if I would always have to avoid anything sweet. I tried different probiotics and different thrush treatments. But nothing worked effectively and consistently for long-term relief.

Weight loss

I lost a LOT of weight in the summer of 2018. Maybe around 5 or 6 kilos. My weight is pretty stable, not really fluctuating more than 2 kilos at any point in time, so this was a lot for me. I looked thinner and people noticed. My clothes fit differently. And the clothes that I bought that summer no longer fit over my bum or around my waist (I have some AMAZING Vintage Levi jeans and shorts to sell if anyone is interested...). I feel like I’m in pretty good shape now, so I can’t even imagine how I must’ve looked back then.

I wasn’t sure for a long time what had made me lose weight. I was going through a LOT that summer though. A break up, a house move, a new work contract… I sort of figured it was the stress. I also wondered if it could have been that a loss of appetite was a side effect of the antibiotics or antifungals that I was taking almost back to back.

But it was extreme. I remember absolutely packing in the calories with high fat foods all summer and my weight barely shifting. I remember making myself breakfasts of scrambled eggs with more cheese than egg plus a whole pack of bacon, along with a bowl full of full-fat yogurt topped with nuts and seeds. There was so much food. But I never saw the weight increase (or even stabilisation, for a while) that I’d hoped I would.

Increased cough

For someone with CF, I used to be pretty proud of the fact that I hardly ever coughed. Well, over this summer, my cough increased exponentially.

I also rarely needed antibiotics.I would have a standby course perhaps once a year, if that. And at this point in time, I’d only ever had IVs once in my life. So needing a lot of additional treatment for exacerbations or lung changes was pretty rare.

And yet, I was taking a load of extra drugs. My CF team tried antifungals for suspected aspergillus despite negative tests (which did nothing besides cause hair loss). I also took Ciprofloxacin, which caused me to have crazy anxiety, mood swings, paranoia and costochondritis (inflammation where your ribs join your breastbone) that led to me being taken off it. This was followed by co-amoxiclav, again, to no real effect.

Nothing worked.

Given the season, I figured (and sort of tried to convince myself, if I’m honest) that it was just allergies, but I knew that there were changes in my lungs that I had never felt before.

MRI scan

MRI scans are pretty commonly carried out at regular intervals to visually monitor changes in the lungs with CF.

My scans - whether X-ray, CT or MRI - typically stayed pretty stable over the course of months and years. But the MRI scan that I had in the summer of 2018 showed something that honestly shocked and scared me. In just a few months since my last one, it was possible to see significant changes in my lungs - something that I’d never been told before. I was used to hearing that there were ‘small changes consistent with the progression of CF’, but never anything as major as I heard at this point.

In my right lower lung, a 7mm cavity had formed. To me, that sounded absolutely terrifying. No just the nature of what it was, but the fact that even small changes seemed uncharacteristic, and then all of a sudden, an actual hole in my lung?!

How did this call come together?

I sort of remember, and sort of find it to be a blur… What I remember clearly is standing in the lobby of my coworking office in London, on the phone to my CF clinic and the Diabetes Nurse back to back, pretty much begging them to prescribe me insulin.

Here’s what else I pieced together to make my case:

The MRI scan and infection symptoms: a cause/effect argument

It was clear I had an exacerbated infection. NTM (non-tuberculosis mycobacterium), actually - so a really, really hard one to treat.

My Drs and the diabetes nurse argued that infection can make blood sugar run higher and that maybe if they treated the infection, my blood sugar would be more manageable. While this is absolutely true, I never really had exacerbations until my blood sugars started to go high. It was a dispute of cause and effect.

I wasn’t willing to go through gruelling and aggressive IV antibiotic treatment for NTM if my high blood sugars would only undo all of that effort. I knew that my blood sugars needed to be controlled. I just knew in my body that the high blood sugars had caused the infection and the changes that were showing on my scans, and not the other way around. I just knew what my intuition and my self-awareness was telling me.

Increased infection and thrush.

I figured out that high blood sugar was proliferating my lung infection, just as it was feeding the candida that was causing thrush. It was too much of a coincidence not to be caused by the same thing.

The blood glucose test readings

Kind of a no brainer...

Transitioning to insulin

I think it was the MRI scan results that really convinced me that I needed it. I knew I needed something - ANYTHING - to stop the high blood sugars before I had to deal with even more issues and more damage.

I know that most people would delay or avoid having to literally inject something into their body multiple times a day, but there came a point where I knew that nothing else was working, and everything was only seeming to get worse. I honestly started to fear for my health and my future. So, I begged my Drs and nurses to let me come to clinic that week and to be introduced to insulin.

I’m so glad I trusted my intuition.

It was a smooth process to start taking insulin and I've learnt so much over the last couple of years that I'll shortly be writing another article to showcase some key learnings and some resources/tools that really helped me.

If you have a CFRD experience to share, please comment below or drop me an email. Everyone's experience is very different and we still have so much to learn about this particular type of diabetes.