It’s been a weird six months. What started as investigation into a flashing light in my left eye has devolved into a general decay of my body. I went to my doctor a couple of months ago because I had weird hot patches on my legs. Not actual hot patches. They weren’t hot to the touch, my brain just thought they were hot. Then I started to have sharp pin-prick pains in my toes, and numbness in my skull. Muscle weakness. Headaches above my eyes. Muscle spasms. Pain in my neck. Blurred vision. Then I became so fatigued that I was napping on the side of the road on my way to work and sleeping 10 hours a night.
So we did some blood tests. Heaps of them. Upwards of 20 different tests.
Yesterday I went for a follow up with my doctor. He said to me: “Your kidney function is normal. Your thyroid is normal. Your iron is normal.” but he didn’t say “Everything was normal.” And everything isn’t normal.
My brain is releasing excessive amounts of prolactin. That’s the responsibility of the pituitary gland, which is right at the bottom of the brain in the middle of the skull. It’s kind of the boss of the hormones. Sometimes, people get pituitary tumours. They present with things like vision issues, fatigue, weird body sensations.
Twelve years ago, I gave birth to a tiny little baby. She was perfect. I’d never had a tiny baby before so I spent most of my time sitting on my couch, just watching the way her mouth moved. When she was five days old, I went blind. The hospital sent me for an emergency MRI, where again, everything was normal except didn’t my pituitary gland look a bit tumourous? But they didn’t follow it up, and I assumed it was a smudge on the scan. They put it down to ocular migraines brought on my an influx in hormones. It happened a few more times after that, and once when I was pregnant with Lily.
I’ve spent the years since then living with a variety of funky symptoms. About six years ago I realised I couldn’t really smell anymore. I can smell what I’m cooking, if I’m standing right next to it and it’s full of garlic. I can tell, when I open the front door, if next door has a fire going. But I never know when the cat litter needs changing, or if a shirt needs to be washed. My kids have become very adept at sniff testing things for me. I have lots of eye issues, like diminished peripheral vision, blue flashes, stars. Sometimes I have days when I have double vision, sort of. It’s as though the image is duplicated when my brain processes it, but I don’t actually see double. And obviously there are the years of mood fluctuations, depression, anxiety, general misery and fear.
The combination of all of these things means my doctor thinks I have a pituitary tumour. A brain tumour. “It’s really the only explanation,” he said, because he likes to make sure I have all the information but also that I expire from worry. I have a list of people to see next: an endocrinologist, an ophthalmologist, a neurologist. There are good news bits: pituitary tumours are almost always benign; they can almost always be removed with surgery. I mean, you have to be awake for the surgery so they can ask you questions like “can you still see the colour blue?” and “can you feel your fingers?” but it’s usually operable nonetheless.
It’s a lot to process, and I feel strongly conflicted. On the one hand, maybe I don’t have to be quite so depressed, tired, moody. Maybe I’ll get back my sense of smell! Maybe my vision will improve! There are ways in which the idea of it is even intriguing. But on the other hand, if I have had this since the original scan 12 years ago, how much of what I know about myself is me, and how much of it is this cloak of hormone imbalance and pressure in my brain? I feel totally ill equipped to understand the impact this might have – not just on my body, but on my identity.
They take pituitary tumours out through your nose. Your nose.