The question came in July 2004 from the consultant who had been trying to treat my high blood glucose levels and sudden very high blood pressure. I didn’t know that adult feet do not continue to grow.
He ordered a glucose tolerance test and an MRI scan. Together, they confirmed the diagnosis – acromegaly caused by a growth hormone producing pituitary tumour – an unusual condition, very well spotted. The internet told me all about it.
Three months later I had two consultants at a tertiary referral centre, an endocrinologist and a neurosurgeon. My initial appointments with them were both scary and reassuring. I had a macro adenoma which would need to be shrunk before being removed through my nose, but it was in an accessible position, not too close to my optic nerve.
A barrage of tests followed to check for related conditions and to connect symptoms. Acromegaly causes extra soft tissue to grow throughout the body. My heart was enlarged, my spine curved, my front teeth forced apart. My tongue seemed larger. I already knew my voice had deepened as telephone callers often assumed I was male. For 12 years I had had obstructive sleep apnoea due to the extra tissue around my throat and was wrestling with a CPAP (Continuous Positive Air Pressure) machine at night. My fingers had developed lumps around the joints and had begun to ache as the extra tissue pressed on the carpal tunnels.
And yes, my feet had grown, gradually increasing from size 5½ when I was 20 to size 8 in my late 50s. Clearly the tumour too had been growing slowly over many years.
In December I began a course of octreotide to target the growth hormone producing cells, to shrink the tumour to make it easier to remove. At first I self-injected three times a day, but after a month with no adverse side effects, injections became monthly. The hospital’s endocrine nurse specialist visited my rural health centre to demonstrate how to make it up from a powder and inject with a huge needle. This designer drug, achieving slow release though “biodegradable microspheres”, was £600 a dose, so getting it right was important.
I became a familiar face in the bleak, hospital endocrinology day room for regular growth hormone checks. By May, my levels had dropped and the tumour was considered safe to remove. The transsphenoidal operation was done on 7/7, the day of the London bombings, unforgettable for me and my family 200 miles away too. Apart from a few days of diabetes insipidus which was swiftly dealt with, all went well. I left hospital a week later on hydrocortisone in case my endocrine system stopped functioning. It didn’t, but my weight rocketed and took years to go down.
Now, 7½ years later, I feel I’ve been incredibly lucky and I’m grateful to the NHS for my excellent care. There are long term effects but it could all have been so much worse. The lingering, unpleasant reminder is constipation as my colon is still 10% longer than the norm. I am monitored annually. My growth hormone level stays within the normal range; blood sugar and hypertension are under control. My enlarged heart has stopped growing. The sleep apnoea has disappeared; my hands, tongue and voice are back to ‘normal’. But not my feet……