Sports fanatic Liz Douglas, 47, from Bolton, became a recluse who suffered hallucinations and slept for 36 hours at a time when she developed a rare thyroid condition dubbed “myxoedema madness”. Her illness went undiagnosed for months and she has been left with life-limiting effects. But, as she explains, she feels lucky to be alive.
“The voice in my head was loud: I should pick up a knife and stab myself. It felt so real I nearly obeyed, but I stopped myself from carrying out the command. Was I going mad?
For six months I’d been experiencing terrifying hallucinations, too. I thought someone was trying to choke me to death as I lay in bed. I’d bang on the bedroom wall, hoping someone in the family would save me.
It was so scary but it was happening in my sleep. My daughter would rush into my room, saying, “It’s OK Mum, you were asleep.”
I didn’t know it then, but I was suffering from myxoedema madness, a severe form of underactive thyroid. A single mum for many years, at the time I was bringing up my two young girls, Jenny, now 26, and Annabel, 18, while working full-time as a business developer.
I was always really active and took part in triathlons, cycling, running and swimming several days a week. But in mid-2014, I started to feel constantly tired.
Not just a lack of energy, but so exhausted I just had to sleep – wherever I was. I’d go to bed earlier and earlier and never heard the alarm clock in the morning.
I’d only wake up if my daughters shook me awake. Things got so bad that I had to pull over while driving, twice.
My eyelids felt so heavy I knew I’d fall asleep at the wheel. So I’d park in a layby, rest my head on the steering wheel and sleep for hours at a time.
On one trip to the pool, I suddenly felt so tired I put my head down at the edge of the jacuzzi and fell asleep. I knew I wasn’t OK, but my GP couldn’t find anything wrong.
He thought it might be the pressure of work and looking after my girls on my own. That’s when the migraines began, some lasting for a whole week.
I felt dizzy and bloated. I was starting to sleep longer, sometimes for 36 hours at a time. My whole body was in constant pain and I always felt freezing cold.
I went back to my GP four more times. He even sent me for a brain scan because of the migraines, but nothing was found.
Soon I had to give up the job I loved because I just didn’t have the energy for it. Jenny had to come back from uni to look after me, as well as her younger sister who’d just started secondary school. She’d take Annabel to school and do the things I should have done.
Lost Consciousness
One day, my sister took me for a coffee. The lights and the noise were excruciating and I lost consciousness. I felt too ill to be embarrassed as she helped me to my feet.
The hallucinations were getting worse and more frequent. I had to remove all the knives from the kitchen in case they urged me to use one to harm myself. To this day the sight of a knife gives me awful flashbacks.
I knew my family and friends were worried about me, but what more could I do? The doctors couldn’t find anything wrong. I had a strong Christian faith and I remember praying a lot. I thought I was going to die.
Finally, after going to my GP for the sixth time, I was given a blood test to check my thyroid hormone levels. My TSH level – used to measure thyroid function – was 88, when it should be between 0.5 and 5.0.
My thyroid wasn’t functioning at all. My GP said, ‘No wonder you’ve been feeling so ill!’ Ten years earlier, when Annabel was born, I’d been diagnosed with hypothyroidism, otherwise known as an underactive thyroid.
The thyroid is a vital hormone gland responsible for metabolism, growth and development. I’d taken pills for a few months but it corrected itself so I stopped taking them. It must have been in my medical notes so it’s very surprising this wasn’t looked at.
I was admitted to hospital for treatment immediately and stayed there for a couple of weeks. Some of the staff said they’d never seen such a high TSH level. The consultant said it could take 18 months before my body recovered enough for me to feel better.
Yet after six months of treatment, my thyroid still wasn’t working properly and that’s when I was diagnosed with myxoedema. I was told it’s extremely rare – and that it could kill me.
I was horrified, but it was also a relief to know there was a reason for what was happening to me.
(Image: Andy Stenning/New Magazine)
Multiple Setbacks
Recovering is a long process and I’ve faced multiple setbacks. When I finally felt well enough to return to the pool where I used to swim dozens of lengths at a time I had to be hoisted in and could only manage
a few minutes in the water.
I couldn’t walk more than a few yards before giving up and I was still sleeping a lot. Slowly things have improved. I can now go for short walks with the dog on the nearby moors and I’ve gone back to work part-time.
My lower right leg is partially paralysed, so my triathlon days are over and I’ve developed fibromyalgia, so I’m still in a lot of pain. I have three-monthly check-ups and I’ll be on medication for the rest of my life.
Some of the medical staff I see have to google myxoedema because it’s so rare, and it’s been hard to find other sufferers of the condition on support forums. But I’m a survivor and I feel very lucky to be here.
I’d urge anyone who has these symptoms to ask their doctor for a thyroid blood test. That is all it would’ve taken for me not to have gone through the misery of myxoedema”.
What is myxoedema madness?
It’s very rare but can develop after an infection or severe illness, during pregnancy or after taking medicine for an underactive thyroid incorrectly. It’s also known as myxoedema coma and can lead to severe complications and even death.
Symptoms include fatigue, cold intolerance, menstrual abnormalities, decreased appetite, constipation, bradycardia (slow heart rate) and facial puffiness.
In severe cases, it can cause hallucinations, delirium and coma. It’s treated with thyroid hormone replacement medication. Patients can be left with organ damage, such as heart and kidney damage.
It’s thought to be fatal in anything between 25% to 60% of cases.
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