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Living with Acromegaly: My Condition in Snapshots

Reading time | 5 mins

After receiving my acromegaly diagnosis, I eagerly looked forward to the day I could fit rings onto my sausage-fingers again.

Sadly, I had no idea what lay ahead of me, and rings should have been the least of my worries. It's astonishing how much we sweat the small stuff when something turns our world upside down.

I'd been denying my acromegaly symptoms for years at that point, tricking my body into accepting them as they came. When I was finally diagnosed, I thought a pill would iron out all my problems.

That idea didn't go to plan.

At this point I am currently six years post-diagnosis, surgery, and radiotherapy. I live a somewhat "normal" life, working part-time at the salon and studying to become a nurse.

Frequent trips to the hospital are nothing new

These days I visit the hospital about five times a year. That’s a massive contrast to a few years ago, when I was going at least twice a month for tests and treatments.

Now, I make my hospital days into enjoyable little trips. The journey takes about two hours each way, so you can bet I'm going to get myself a nice coffee and take a look at the shops. Otherwise, blocking out the whole day can feel like a waste of time.

My growth hormone and insulin-like growth factor one [IGF-1] are consistently in range. The tumour behind my nose has massively shrunk. Still, my superficial symptoms are persistent and haven't changed a jot since the medical intervention. This makes for an interesting acromegaly life!

It can make work difficult at times

In the salon, where I work as a hairdresser, I tend to favour the corner by the window. The cool breeze stops me from looking like I've just climbed out of a swimming pool. Yep, the sweats are real.

It's embarrassing, especially when it's a mere 8°C (46.4°F) outside. Some of my clients look at me like I've grown a second head as they sit there shivering.

My endocrinologist says the sweats are due to hypothalamic damage caused by the tumour. But the embarrassment doesn't always stop there. Recently, a new client asked me why my hands are so big. After I told them about my acromegaly, their mind was completely blown. I bet they wished they'd never asked.

My ever-growing hands and feet are, and always have been, a standout acromegaly symptom. My ring size went from a size L to Z+8, while my feet went from a reasonable size 6 to a huge 10.

Unable to wear my grandmother’s ring

When my grandma gifted me her beautiful ring, I desperately tried to squeeze it onto my fingers. I pushed a bit harder, then gave up. I was stunned to find out that my ring size had increased so dramatically.

I managed to get the ring enlarged to fit but, sadly, I've had to take it off due to it getting too tight. This is despite my bloods being in range. It seems like my acromegaly struggle is never-ending.

Outgrowing shoes month after month was another side-effect I'd ignored for years. It was so bizarre I actually managed to trick myself into thinking it was fine!

I would browse the wide-fit aisles in shoe shops looking for size 10s. Of course, everything looked like something a 70-year-old would reject, never mind a woman in her mid-20s. But I didn't have a choice. The dainty size 6 shoes that used to fit now barely encase my toes.

Carpal tunnel syndrome

Carpal tunnel syndrome is another glorious side-effect of my acromegaly. It started about five years before my diagnosis.

I would often be mid-haircut and have to stop because I couldn't feel my hands. This numbness in the early days would lead to excruciating pain at night as if my hands and forearms were on fire. I would fight daily battles carrying shopping bags and continuing my work. Sleep almost became impossible.

Six years on, and several steroid injections later (the standard treatment for carpal tunnel syndrome), it still continues to challenge me. In fact, it may be high time for another steroid injection to help ease my symptoms.

Acromegaly has affected my eyesight

My biggest struggle is caused by the tumour behind the bridge of my nose. It grew around my optic nerve, leaving me blind in my right eye. The tumour also damaged my trigeminal nerve, which transmits sensation in the eyeball. I have absolutely no feeling in my blind eye, which leads to my eyeball becoming scratched to the point that it perforates. I've had two corneal transplants as, without them, my eyeball would have to be removed. When my eye gives me trouble, I have to visit the hospital at least once a week.

Unfortunately, there is currently no treatment to rejuvenate the trigeminal nerve. I hope this changes in the future, as it is incredibly disruptive to my life.

I try to live life to the fullest

I try to make the most of each day and live my life to the fullest. I don't often tell new people about my acromegaly, as I'm worried about judgement or misunderstanding. That said, I don't expect anyone to understand acromegaly. Some medical professionals barely understand it!

If I do decide to share my diagnosis, it's mainly due to fatigue. I don't remember when I didn't feel tired; it's just another symptom I've learned to live with.

I remember sneaking off with friends and quickly getting too tired to carry on. Occasionally, I was so shattered I would call in sick to work or go to bed straight from school.

I'm not sure when my acromegaly actually began. If I look at old pictures, physical symptoms are noticeable when I was around 18 or 19. With treatment, the fatigue has gotten better, and my energy levels have improved. I'm drinking far more coffee than I used to, though!

The takeaway

In short, I've learned to live with acromegaly. I sometimes feel like having acromegaly for my whole adult life has worked in my favour, in a twisted kind of way. I wouldn't know any different.

I have learnt what works well for me. I do not tolerate unnecessary stress, I spend time with people I love, and I do what makes me happy.

I also have a fantastic team of healthcare professionals that monitor my condition. Trusting people who can help is absolutely vital, and it makes managing my acromegaly so much easier. We work together as a team, and I'm truly grateful for that.

NPS-IE-NP-00270 May 2021