Louise Glazebrook: Woman had no idea what was making her tongue & nose grow

For the first seven years of her now nine-year-old daughter’s life, Louise Glazebrook’s body revolted.

It began months after her daughter was born when her hands started swelling – ‘I had to remove the rings on my fingers because they were so tight and painful,’ recalls Louise, one of the UK’s best-known canine behaviourist and dog trainers.

Then her feet began to hurt so badly that when she got out of bed in the morning and put her feet on the ground, ‘the pain was indescribable’. ‘I couldn’t understand why this was happening,’ she says.

There were other symptoms: ‘I felt disconnected and sad most of the time. When my daughter was three, and I was around 37, I went to my GP, and he said my mental state was probably down to the fact I’d had two children in quick succession [Louise’s son is two years older than her daughter].

‘When I described the pain in my hands and feet, he sent me for rheumatoid arthritis scans.’

But these came back clear – and Louise found herself ‘more or less dismissed’. ‘What still angers me is that male GPs fob women off because of having children,’ she says now. ‘Would I have been taken more seriously, I wonder, if I’d been a man?’

Then, gradually, her ankles started to swell. ‘I looked like an elephant.’

She consulted her GP again, this time via Zoom, as it was during a Covid lockdown. ‘I was told to press my leg with my fingers, but there was no evidence of water retention. And yet, my jeans were so tight around my ankles that there had to be some explanation.

She barely recognised her own appearance, she says. ‘I’d look in the mirror, and I didn’t look like me any more. My nose was bigger; my hair, which had always been quite thick, began to grow like a bush. And I was struggling all the time with tiredness. I wasn’t sleeping properly.

‘That was because my tongue had swollen and blocked the airways. I later discovered I had the equivalent of sleep apnoea [a condition where the tissues in the airways collapse, causing sufferers to temporarily stop breathing]. It would wake me up, and I’d choke so violently it made me vomit. My swollen tongue was also beginning to impede my speech.’

What Louise also couldn’t understand was why she felt so angry all the time. ‘It was like a filter had been removed,’ says the 43-year-old who lives in East London with her husband, Kyle, 44, who runs a building firm.

‘I now know that my adrenal glands were producing excess cortisol, which regulates stress in the body.

‘I was horrible to my children and Kyle – the man deserves a medal – but I couldn’t seem to stop myself. I was cross and crying by turn. I also felt completely burnt out. And yet, I’d always been cheerful and funny. What was happening to me?’

Looking back, she says, if she hadn’t eventually been diagnosed, she’s sure she’d have had a nervous breakdown.

‘I got to the point where I could barely function. I went back to my GP, and I was prescribed oestrogen patches. My periods had stopped – I was 40 by then – and they thought I was premenopausal.’

In fact, Louise had a benign tumour growing on her pituitary gland, located at the base of the brain, which is both the repository and supplier of the body’s hormones. ‘It was growing, very slowly, in the gap next to the optic nerve,’ she says. ‘Had its growth been any swifter, it would have cost me my sight.’

It also meant that Louise’s body produced ten times the normal amount of growth hormones.

At the time, Louise was running her dog behaviourist business and writing her first book, The Book Your Dog Wishes You Would Read, which was published in 2021 and was a subsequent bestseller.

So she was invited to share her canine wisdom with Steph McGovern on her Channel 4 weekday magazine show, Steph’s Packed Lunch.

‘On the train home, I received an email from a viewer who said she thought I had a rare hormone condition. She gave me a list of symptoms, and every single one was what I’d been to the doctor about four or five times.

‘So, I got in touch with her – and she said she didn’t want to scare me, but she’d had what she thought I was suffering from a condition called acromegaly, and I should go as soon as I could and get something called an IGF1 blood test to measure my growth hormone levels.’

Acromegaly results in excess growth of certain parts of the body — typically, hands, feet, jaw, and nose — and affects between 100 and 200 women a year (and slightly more men).

It is usually caused by benign growth on the pituitary gland, which is the ‘master gland’ of the body, explains Ashley Grossman, a professor of neuroendocrinology at Barts and the London School of Medicine.

‘The body naturally produces growth hormones to help with building muscles and tissue repair. Excess amounts will cause tissues and bones to grow.’

As well as abnormal growth, symptoms can include headache, loss of vision (if the growth touches the optic nerves) ‘and a depletion of other hormones’, says Professor Grossman, who is also a consultant endocrinologist specialising in neuroendocrine tumours (such as those that affect the pituitary gland) at the Royal Free Hospital, London.

‘There are various other problems [high blood pressure, a tendency to type 2 diabetes], but patients often especially note excessive sweating,’ he adds.

However, as these changes often occur very slowly, it can be years before they are picked up, says Professor Grossman, which is why ‘sadly, a delay in diagnosis is all too common’.

‘The good news is that the only remedy – surgery – is very effective in removing the tumour and normalising the excess growth hormone, although sometimes supplementary medical therapy may be needed.’

Normally, this involves cabergoline (tablets), octreotide or lanreotide by monthly injection or daily injections of pegvisomant. Some patients may need radiotherapy to stop tumours growing.

Louise paid for a private test, which revealed she had much higher growth hormone levels than normal. She then saw an endocrinologist at Addenbrooke’s Hospital in Cambridge on the NHS on Christmas Eve, 2021.

He took one look at her and immediately announced: ‘Yes, you’ve got acromegaly,’ recalls Louise, adding: ‘I was so relieved my condition had been identified that I burst into tears.’

A subsequent MRI scan revealed a 2.5cm tumour.

The lack of beds due to the pandemic resulted in yet another delay – ‘I had to wait a further two months. I looked and felt horrific. I couldn’t work, but my self-employment insurance company wouldn’t pay out because the tumour wasn’t cancerous.’

Louise underwent a five-hour operation to remove the tumour in May 2022, performed by a neurosurgeon and an ear, nose and throat specialist working together.

Less than 24 hours later, her hands and feet had reduced, and her tongue was no longer swollen. ‘I looked normal again. And, at last, I could enjoy uninterrupted sleep,’ she says.

Before the operation, she’d booked in dog clients for two weeks later. ‘When the surgeon came round afterwards and I asked him how long before I could return to work, he said: ‘Four or five months.’

Before the operation, she’d had to run her canine training classes online because her condition had become so debilitating: the silver lining was that she could continue with her online business, The Wonder Club, as she recovered from surgery and beyond.

‘I felt I’d been given another opportunity at life,’ she says.

As well as writing a second book for puppy owners (published earlier this month), ‘more importantly, Kyle had got back the woman he’d fallen in love with. And I’d got Louise back. I was me again.’