“The palpitations were constant day and night. It felt like a flock of birds flapping in my chest.”

Leisa’s symptoms of hyperthyroidism were initially put down to perimenopause by her doctor. However, feeling something more was wrong, Leisa pushed for a blood test and was diagnosed with Graves’ disease. After experiencing a relapse, Leisa opted for thyroid surgery to remove her thyroid (total thyroidectomy) which she describes as ‘life changing.’

Leisa’s shared her story to help others get prompt diagnosis and treatment, as well as highlight how stress potentially triggered her Graves’.

What condition were you diagnosed with?

Thyrotoxicosis* caused by Graves’ Disease.

The context

In February 2023, I began to think something might be seriously wrong with my health. It started shortly after a water pipe burst in our loft a few days before Christmas in 2022. Our house was completely flooded – the ceilings had collapsed, the furniture was destroyed, and the electrics were blown. The damage was so extensive we had to uproot to temporary accommodation with only the dry clothes on our backs and the Christmas tree unceremoniously slung into the car boot. It was a great shock; one that in the weeks to come would be compounded by the stress of a horrendous experience with our insurers.

What symptoms did you experience?

The first physical symptoms that all was not right was that my heart rate was climbing. My smart watch showed my resting heart rate was 30 beats per minute faster than usual. This made me breathless, and the palpitations were constant day and night. It felt like a flock of birds flapping in my chest. I developed a pronounced tremor in my right hand; I couldn’t hold a cup of coffee without it sloshing over the sides. Then came the weight loss –  I dropped three stone in a matter of weeks, and by the end was shedding a pound a day. The heat intolerance made it feel like my skin was on fire. On the upside, I had manic bursts of energy that helped me in those long days of gutting my destroyed home on my own. I moved a fridge, lifted a wooden floor, and ripped out a kitchen!

How were your symptoms picked up on?

I relayed it all to the GP and was promptly told it was probably perimenopause, after all, I was ‘a woman of a certain age.’ I couldn’t accept that, and felt my symptoms deserved a closer look, so I lobbied for a thyroid function test. Within days, I was referred to an endocrinologist to investigate for hyperthyroidism. This was unexpected given generations of women in my family had been hypothyroid – they produce too little thyroid hormone. How was I the complete opposite?

What treatment were you given?

Further tests revealed that it was, in fact, Graves’ disease – the endocrinologist believed it was likely triggered by recent stressful events. I started taking carbimazole to suppress my overactive thyroid function and waited. The effect on my hormone levels was immediate – the heart took much longer to settle down. However, artificially suppressing the thyroid hormone in this way is a delicate balancing act. After nine months, I had tipped the other way and become hypothyroid, quickly gaining back weight despite closely monitoring my thyroid levels.

The relapse

By February 2024, within 12 months of taking carbimazole, I was euthyroid**. I was no longer hypo or hyper – everything was back to normal, and I came off the medication completely. But the freedom was short-lived. Within five months, my symptoms returned with a vengeance – I had relapsed. This time, everything was worse – the tachycardia, the tremor, the anxiety.

What treatment came next?

As the endocrinologist put it, we now needed ‘a definitive solution’. Long-term carbimazole wasn’t for me – it gave me night terrors and made my fingers swell painfully. With young children, radioactive iodine wasn’t going to suit us either. I decided to have my thyroid completely removed. In the time it took to have these discussions and run more blood tests, my condition quickly deteriorated. There were days when I didn’t have the energy to get off the couch. The surgeon said my blood results were some of the worst he’d seen, and so he operated within a fortnight of meeting me.

As it turns out, my thyroid was twice the average size and ‘a bit lumpy’; I was glad to be rid of it! The operation went smoothly, though the intubation gave me pneumonia. Coughing with a neck wound is brutal. My wound site then became infected – I was allergic to the glue. It was a rough few weeks. As Macauley Culkin put it in Home Alone: 'Another Christmas in the trenches!'

How are you feeling now?

It took a few months for my vocal cords to recover and for my parathyroid glands to wake up. These glands regulate calcium in the blood, and when the calcium levels are low, you get a tingling sensation in your fingers and lips. I had to take calcium tablets to supplement this. Thankfully within four months, everything had settled down and I felt like a new woman. I now wake every day feeling the best I’ve felt in years.

What have been the most difficult parts of your journey?

Around (2% of women and 0.2% men, approximately 650,000 people) people have Graves’ disease in the UK – significantly less than the estimated 2.2 million people living with hypothyroidism. Because Graves’ disease isn’t as prevalent, people around me with hypothyroidism struggled to understand that my diagnosis wasn’t the same as theirs. That it couldn’t be solved with a pill. It made it a very lonely experience.

The recurrence of my Graves’ disease was also very sudden, coinciding with my now renovated house failing building compliance as a result of the builder not completing it to code. I sometimes wonder if the stress of the ongoing house dramas triggered the relapse too.

Did you manage to find some support?

In the absence of any family, my friend swooped in when I was at my lowest and was there for my kids. It meant the world to me. My surgical aftercare was next level – with the surgeon texting daily to check on my healing. He is my hero! I also connected with other women who had gone through a total thyroidectomy to help me mentally prepare for suddenly losing an organ – they generously shared their stories, which has prompted me to share mine.

What would you say to anyone on their own thyroid journey?

If you are also ‘a woman of a certain age’ and something’s not right – trust your gut. The average age perimenopause starts is 47 – I was only just 42 when my symptoms were initially dismissed as perimenopause. The NHS is on its knees – you have to advocate for yourself. There’s no harm in asking for more, for asking to be heard.

*Thyrotoxicosis - an excess of thyroid hormones in the bloodstream.

** Euthyroid – normal levels of thyroid hormones in the blood

Medical advisor comment

Leisa’s experience touches a few areas that patients often ask about and I will attempt to explain these in turn.

We’re sorry that Leisa’s symptoms were initially attributed to perimenopause. Symptoms such as sensitivity to heat, sleep disturbances and anxiety, can be common to both conditions. So, this can sometimes make it difficult to determine which symptoms are related to which condition. Doctors can diagnose for thyroid conditions by doing a blood test to check for thyroid function, in conjunction with looking at symptoms.

Leisa refers to being surprised by her diagnosis of hyperthyroidism (overactive thyroid) as other family members have hypothyroidism (underactive thyroid). Thyroid conditions do run in families and are much more common in women than in men. In the majority of people, both hyperthyroidism and hypothyroidism are autoimmune conditions. This means there are immune attacks against the thyroid gland. In autoimmune hyperthyroidism (Graves’ disease) TSH-receptor (TRAb) antibodies generated from the immune response stimulate the thyroid to produce too much thyroxine (thyroid hormone). In autoimmune hypothyroidism (Hashimoto’s thyroiditis) the immune attack against the thyroid gland making it produce too little thyroxine, thyroid peroxidase (TPOab) antibodies are commonly present in majority of people with Hashimoto’s thyroiditis. In short, it is possible for people in the same family to have autoimmune thyroid conditions manifesting as either hyperthyroidism or hypothyroidism.

Leisa’s endocrinologist believed it was likely the stressful episodes preceding her initial diagnosis and relapse may have triggered these. It is not fully clear what role stress has in Graves’ disease; however, it is thought that stress can trigger the onset of Graves’ disease in people at risk of developing autoimmune thyroid conditions.

Further information and support

Living with hyperthyroidism

BTF article on thyroid conditions and menopause