I never appreciated what wellness was until I felt unwell. And I ever knew what good health felt like until I developed a lifelong chronic illness.
Around eight years ago, I was living in London and engaged to be married. Despite being so happy I could explode, I always felt drunk: my physical body, aged 29, was heavy, clumsy and exhausted.
I experienced several bouts of psoriasis: at one point I had scales on my face, extending from my hairline to my eyes. I had four severe flu episodes in one winter season. And although I wasn’t eating more than usual, my weight ballooned by over 20 kilograms in a matter of months (my face and neck looked like it had given birth to a pack of marshmallows).
Then one day, the European party I thought I was living shut down abruptly.
My fiancé admitted the novelty of marriage had worn off, as had the idea of an Australian home and me. Accepting the decision he made, I threw his cheap engagement ring at his head and kicked a few inanimate objects that couldn’t kick me back. Our marital deal was off, our vineyard wedding vanished, and now both my heart and body felt tortured.
Over the course of the next few months, my low state of ‘wellness’ declined. I experienced regular severe migraines and was blacking out almost weekly. It seemed that my brain just couldn’t compute simple tasks or ideas: I recall asking a colleague to distract the boss if she noticed I wasn’t doing much at the desk because I couldn’t coordinate my fingers to type.
I couldn’t walk for long periods of time, as my feet blew up with fluid. I was urinating clear water, not long after drinking it from a bottle or tap, a number of times a day on top of my regular toilet habits. I didn’t menstruate either. But then again my period had never been regular so I wasn’t alarmed.
I consulted a number of GPs to find out what was wrong. No explanation ever restored my sense of wellness, mostly because each clinician seemed to look at each concern separately – I had the flu and my skin was deteriorating because it was an English winter. Maybe I was fat because I ate too much?
Until one day, a doctor ordered a blood test to check my thyroid levels. The GP later reported that I had a strange Japanese-sounding disease that had taken up residency near my throat. Hashimoto’s disease (or chronic lymphocytic thyroiditis): an autoimmune condition where my body attacked itself and in the process of doing so, destroyed most of my thyroid gland.
It all sounded so serious. ‘Hashimoto’s thyroiditis is not like cancer or heart failure’ I thought. ‘And doesn’t every second overweight woman have a thyroid complaint? So what’s the problem?’
Endocrinologist and head of the Australian Thyroid Foundation’s medical advisory board, Professor Creswell Eastman AM, explains that the thyroid gland, shaped like a butterfly, releases thyroid hormone, which “works on every tissue in the body”.
“It is an essential ingredient from conception right up until the time you die. It works on all tissues throughout all of the body, at all ages,” he says.
I experienced regular severe migraines and was blacking out almost weekly. It seemed that my brain just couldn’t compute simple tasks.
Prof Eastman adds that most people like me carry a genetic predisposition to Hashimoto’s disease (my aunties and mother have since developed it in older age). “If you are pre-disposed to the condition, it’s only a matter of time.”
Once my body switched on autoimmune thyroiditis, it caused hypothyroidism, and an underactive thyroid gland which produces too little thyroid hormone. If left untreated, Eastman says, you could gain weight and fluid, not menstruate and miscarry in the event of a pregnancy.
“You won’t think as well as you should and you don’t perform as well as you should. You just generally slow down: it’s almost like a premature ageing process.”
Although rare, an undiagnosed and untreated hypothyroidism and chronic autoimmune thyroiditis can result in myxedema coma: an altered state of consciousness caused partly by a reduction in oxygen delivery to your brain. It can also compromise your kidney and heart function, bone quality andgastrointestinal tract.
“A lot of older people are put away in nursing homes with an [inaccurate] diagnosis of dementia as they slow down when they have a thyroid concern. Their mind doesn’t work, and they just waste away and die.
“It can happen to you or me. You can’t live without thyroid hormones as they are essential for life.”
The problem with overlooking the butterfly gland
The true incidence of Hashimoto’s or other related thyroid conditions is unknown, but it’s estimated that 850,000 Australians live with a thyroid issue: 7.5 per cent of women and 1.5 per cent of men.
But the problem for me, and thousands of other people like me, wasn’t just that I had Hashimoto’s disease. The issue was that I received a late diagnosis and by the time it was picked up, Hashimoto’s had caused irreversible damage to my thyroid.
President of the Australian Thyroid Foundation, Beverly Garside says unfortunately, she hears stories of doctors misdiagnosing thyroiditis symptoms as ‘something else’ all the time.
“It’s very heartbreaking from where I sit to hear that people’s conditions aren’t being investigated more,” explains 63-year-old Garside.
“Doctors will say the person is depressed and needs to lose weight or exercise. If your hair is falling out, it’s probably menopause. They say all of this without even getting off their chair to look at your neck and order a blood test.”
It’s estimated that 850,000 Australians live with a thyroid issue: 7.5 per cent of women and 1.5 per cent of men.
This is a problem Garside experienced first-hand. “When I was diagnosed, I was 33 and I had just had my third baby who I nearly lost twice. It wasn’t picked up ever in my life but when I think back, I had all the symptoms: period problems as a teenager, I was tired all the time and couldn’t concentrate. And I had lots of miscarriages.”
As it turns out, she had a rare version of events, having both Hashimoto’s and Graves’ disease – an autoimmune condition at the other end of the spectrum causing an overactive thyroid. “It was five years later that I got my thyroid out, and I had to beg to get it out.”
Once diagnosed and put on synthetic thyroxin medication, Garside explains, some people will ‘feel well’ again.
“The earlier you get diagnosed with the disease, before it really takes hold and you’ve got nodules and are dealing with the symptoms of that, the better for your whole body.”
Since my diagnosis in 2008, my body’s systems have gotten back to working ‘mostly’ as they should. My brain isn’t constantly escaping the fog it was once clouded within, I never faint and migraines are few and far between.
Although I have a few other minor offshoot autoimmune issues from the disease, right now, I feel well. I’ve learned how to ‘feel’ wellness and recognise the intricate signals my body sends me when my thyroid levels are starting to fall out of whack (my levels fluctuate whenever I experience shock or severe stress, even though there’s no evidence in western medicine to say this is true).
I now understand what foods work for and against my thyroid health, why finding the right specialist can change everything and the importance of taking my medication on an empty stomach in the morning (with water only) at least 30 minutes before food and four hours away from vitamins or other interacting drugs.
However, there is one lingering concern: pregnancy.
“When you are pregnant you have to increase your thyroid production by 50 per cent in the first trimester,” explains Prof Eastman.
“If your thyroid is damaged you can’t do that naturally so you have to up your medication. If you don’t there is a very high risk of miscarriage.”
He adds that if women on thyroxin don’t know they are pregnant and don’t increase their dosage at conception, the baby’s bone and muscle growth could also be stunted.
“If you don’t have enough thyroid hormone, the foetus’ brain won’t develop properly and it can be severely mentally disabled… So this means you shouldn’t have an unplanned pregnancy, if you can avoid it.”
On the upside, if I do fall pregnant, the baby survives and all turns out as ‘planned’, there’s a strong likelihood that my child (especially if it’s a girl) will inherit my thyroid issues. But, I’m ever lucky enough to be a mum, I promise to educate that child about the importance of preventing disease that can be avoided and diagnosing irreversible illnesses as early as possible.
I’d stress why wellness matters and what a positive state of wellbeing actually feels like, so if they are unwell, they will know it and persist with getting a medical explanation that fits.
And, just as I plan to teach them about the alphabet, the workings of the schoolyard, and the birds and the bees, I’ll also be telling them my story about the butterfly at my throat.