'My symptoms engulfed me': one woman's struggle with thyroid cancer

Niamh O'Donoghue wasn't concerned when she found a small lump on her neck — she was a young, healthy woman. But then her body went rogue  

Niamh O'Donoghue, journalist and social media editor. Photographs: Moya Nolan

When I first found a lump on my neck — slightly off to the right of my thyroid gland — it was unsuspecting. Small in size, to begin with, the lump accompanied a general feeling of unwellness and fatigue that lasted for the entirety of winter.

At one point I was overcome by a slew of drenching night sweats and my voice developed a slight hoarseness to it. The lump had also levelled up in size from pea-shaped to gob-stopper and the fatigue I felt made a dilemma out of ordinarily simple, painless tasks. My symptoms were ubiquitous and heterogeneous (after all, I was a young and healthy 22-year-old), so making a diagnosis became murky and problematic.

I was asked if I smoked (no), drank alcohol (wine, red) or if I was potentially exposed to high levels of radiation (X-rays, a few of them) or in close proximity to Chernobyl (thousands of victims of the 1986 accident developed radiation-induced thyroid cancer).

The thyroid gland is a small, butterfly-shaped organ found at the front base of the neck and is one of the largest hormone-producing glands in the body.

Although most women are already aware of certain hormonal shifts within their bodies from the time puberty starts, changes and imbalances can be triggered further by chronic illness, hectic lifestyles, and emotional stress as well as, more recently, social media and even climate change-related anxiety. To add insult to injury, hormone-related illnesses are particularly difficult to diagnose in women, because symptoms are often those that also relate to other health problems and the menopause.

By the time of my cancer diagnosis in September 2015, the disease had spread outside the thyroid gland to my surrounding lymph nodes. What followed was extremely invasive surgery — a wound from ear to ear — to remove my entire thyroid and the surrounding lymph nodes.

Thyroid cancer affects about 255 people in Ireland each year, according to the Irish Cancer Society, or about 1% of all diagnosed cancers in the country. The typical patient profile of a thyroid cancer patient is middle-aged or older, making me the extraordinary case, as luck would have it.

“There is undoubtedly an increase in the number of people presenting with thyroid cancer,” says Fergal O’Duffy, UCD professor of otolaryngology and head and neck oncology, and an integral part of my joint-care team at The Mater Hospital.

Professor O’Duffy believes the increase in thyroid cancer cases is not due to our environment, but rather by the development of medical imaging – and chance.

“What’s happening now is that people are having scans for various other reasons and scans are becoming increasingly sensitive,” he says.

“It’s really reflective of how imaging has changed over the last 20 or 30 years.”

Reminding me of my luck, he says, I am a rare case. “You would not represent the typical patient that would come to us with a thyroid cancer because it usually happens in patients older than you. You presented at a late stage with an aggressive disease that had spread to your neck, which we rarely see.”

It should be stressed that 50% to 70% of the population will have a nodule on their thyroid gland, and it’s normal to have thyroid nodules. I am on the extreme end of the spectrum.

Niamh O'Donoghue, journalist and social media editor: "The fatigue I felt made a dilemma out of ordinarily simple, painless tasks"

Stop being so hormonal

Thyroid dysfunction is five to eight times more common in women than men, and studies show that 80% of women will experience a hormonal imbalance in their lifetime. There is not enough clinical evidence yet as to why this is but theories point to the different roles hormones play in men versus women.

Thyroid cancers only make up a tiny fraction of thyroid-related illnesses, and the vast majority of people with thyroid dysfunction issues fall into two camps: hypothyroidism (underactive) and hyperthyroidism (overactive).

“There are huge psychological symptoms in both hypothyroid and hyperthyroidism,” says Professor O’Duffy, reciting a Rolodex of pervasive clinical symptoms not too dissimilar from my own.

“If you’re hypothyroid you have trouble sleeping; you’re tired and fatigued; your concentration goes down; you get depressed; you get cold sensitivity; your menstruation can change and become quite heavy; you have muscle and joint pain; you get dry hair and skin, you lose your libido.”

The opposite is true if your gland is overactive. “You get anxiety; you can’t sleep; you get irritable and moody; you get nervous; you can have nervous trembling hands; hair loss; your periods will change and they can be light or missed; you also lose your libido and you can get diarrhoea; your skin can change; you can experience an altered heart rate; your reflexes change; and you can get puffiness around your face, thin eyebrows and a hoarse voice,” says Professor O’Duffy.

The thyroid gland is – in every sense of the word – a driving force to every single cell in your body. Without this gland, my body went rogue and symptoms engulfed me: my skin erupted in pimples; I gained weight and lost it rapidly; my hair thinned and my nails broke away like paper; my relationships suffered because I couldn’t control my shifting mood swings; I had no desire for intimacy and I found myself in a permanent state of misery that no medication, meditation or exotic elixir could fix.

Then there was the psychological warfare of dealing with a cancer diagnosis at a time in my life when self-exploration was high on my agenda list and hospital visits were not.

Having spent more than half of my life in and out of hospitals and theatre rooms for various other defunct body parts, I would have considered myself to be body smart, to be wise of any changes or strange twinges. But the body is sneaky like that, and until my hormones were sent into a permanent state of disarray I was blindly unaware of the critical role they played in my day-to-day life.

In most cases, a hormone imbalance can be supported simply through diet and lifestyle changes. That is unless your thyroid has been commandeered by cancer, in which case chemical intervention is a likely option. A daily dose of Levothyroxine – or Eltroxin as it’s commonly referred to – has helped to keep my hormones in the best shape possible and greatly increased my quality of life. My fatigue is manageable and I have more control of my temperature, weight and general disposition (I can now control my temper). A missed dose results in headaches, changes in mood, weight gain, brain fog and forgetfulness.

“‘Hormonal’ is a familiar label for any women exhibiting less than maximum self-control,” writes Eleanor Morgan, whose book Hormonal: A Conversation About Women’s Bodies, Mental Health and Why We Need to Be Heard, offers a fascinating insight into the topic of womanhood. It’s the type of book I wish I’d read when I had my first period, or first post-surgical endocrine meltdown. Above all, Morgan’s writing explores why so much stigma and misinformation still exists around hormone health and how, by learning and understanding how the chemical signals in the body function, we can also learn to better accept and love ourselves as we are.

Niamh O'Donoghue, journalist and social media editor. Photograph Moya Nolan

Striking the balance

In conjunction with the right amount of medication (if and when needed) diet and exercise are also critical for thyroid health.

“The keystones to everything are mindfulness, sleep, nutrition and exercise,” says Dr Sohere Roked, a London-based GP with a special interest in integrated medicine, whose clients call her “the hormone whisperer”.

She notes the increasing correlation between hormone health and gut health: “We’re learning more about the importance of the gut all of the time and how important it is for things like weight, and [the] skin and how it absorbs nutrients. If your gut isn’t healthy, then you may not be processing and detoxifying your hormones as well, resulting in imbalance. All the systems are interlinked.”

Dr Roked says selenium is an important mineral for thyroid function “as it helps T4 convert to T3”.

Sufficient amounts of selenium can be obtained from the diet by having one or two Brazil nuts a day or by eating garlic. “Magnesium is also important for the proper absorption of iodine and can be found in leafy green vegetables and whole grains. B vitamins, specifically vitamins B2 and B3, are needed to help the body use iodine at a cellular level. Vitamin D is important for the immune system so is very important in Hashimoto’s and Graves’ disease,” says Dr Roked.

Professor O’Duffy also highlights dietary iodine deficiency as a threat to thyroid health and adds that when buying salt, it should be iodised table salt.

Ireland and Britain are the only EU countries not add iodine to salt which poses a risk for women — especially during pregnancy. People who follow a vegan diet or who have a low dairy, seafood or egg intake are at a greater risk of iodine deficiency. Foods like soya and cruciferous vegetables can block the update of iodine.

Exercise is the most natural way to stimulate endorphin release to help improve your mood. Training when your energy levels have hit rock bottom or you’re not sleeping and your muscles are sore, however, is an uphill battle.

I’ve learned to listen to my body and to know when 10km is enough or if I can push a bit harder. Exercise, specifically weighted training, also aids in the release of testosterone which can help to offset the decrease in libido often experienced as a symptom of a thyroid disorder.

In the rush of modern life — indeed in the age of coronavirus — achieving a hormone balance can seem like a hopeless task. Now five years into my thyroid (or lack of) journey, I’ve learned to better understand my triggers and monitor my menstrual cycle so I can keep an eye on symptoms and reduce their impact.

One of the most effective ways I’ve found to minimise the imbalance is to reduce stress, so I practice yoga and take a variety of CBD oils.

As a society, we have to talk more openly and honestly about hormone health – and indeed female health. We need to equip women with tools they need to navigate and manage their bodies, not just when faced with a diagnosis.

Knowledge is power, and you can’t change something you aren’t aware of. If you are worried about your thyroid or hormone levels, ask your GP for a thyroid test. The standard way to check thyroid function is by checking hormone levels via a blood test, and it can determine where you lie on the spectrum and help you get the best course of treatment to restore balance.

As with all cancer patients, there is always the threat of recurrence, but thankfully thyroid cancer is extremely treatable and curable and I continue to receive superb care from my teams at The Mater Hospital and St Luke’s Hospital.

In December, I had my third bout of radioactive iodine-131 treatment. This was advised following a rise in a specific type of tumour marker found in my blood, which, have become very familiar with since my diagnosis.

The treatment involves hormone injections and a five-day stint in an isolation chamber, followed by a repertoire of scans. Unlike conventional beam therapy, it takes anywhere from three to six months for the radiation to destroy any remaining thyroid or cancer cells. 

In the meantime, I’ll have regular blood tests to determine whether or not the silent SOS signal in my blood has depleted and I will, simply, get on with life once again. 

To borrow Professor O’Duffy’s description: “Thyroid cancer is a disease that a lot of people die with, but not from.”

Finely tuned orchestra

The endocrine system can be thought of as a finely tuned orchestra: when hormones are functioning as they should, the body works in harmony. But when just one of the hundreds of the hormones in the body plays out of tune, it triggers a knock-on effect, impacting every other bodily system in its wake.

The thyroid gland — the conductor of the orchestra — is a small, butterfly-shaped organ found at the front base of the neck and is one of the largest hormone-producing glands in the body. It works by releasing hormones that control how the body uses energy and produces thyroid hormones which act as tiny messengers whizzing from blood vessel to organ, signalling for heart rate to increase or decrease, determining how fast intestines process food and speaking to the central and peripheral nervous systems. 

Without thyroid hormones, the body would be starved of hormones responsible for controlling breathing, heart rate, metabolic rate, body temperature, kidney function and hair and nail growth — something I knew too well.

The thyroid gland works by receiving messages from the hypothalamus – the part of the brain linked to the nervous system and the endocrine system — via the pituitary gland. The pituitary gland produces thyroid-stimulating hormone, TSH, which is then sent to the thyroid gland where it is converted into T3 (tri-iodothyronine) and T4 (thyroxine). Together, these hormones whizz around the body to regulate temperature, metabolism, heart rate, digestion, libido and menstruation among myriad things essential to living a healthy life.