“Graves’ disease has a way of convincing you that you are functioning, even as your body moves into extreme physiological overdrive.”

When people talk about Graves’ disease, it is sometimes described as ‘just a bout’ – a temporary illness, inconvenient but manageable. That phrase never sat comfortably with me.

Graves’ disease is not small or easily contained. For me, it was life-threatening, disorientating, and profoundly disabling – long before I understood what was really happening to my body. I was a senior professional when I was first diagnosed in 2020. Like many people, I followed the medical advice to take antithyroid medication and carried on.

Graves’ disease has a way of convincing you that you are functioning, even as your body moves into extreme physiological overdrive. I slept very little, exercised excessively, and worked at a pace that felt normal to me at the time – though it wasn’t. I was taken off medication in early 2022 as I was in remission and was discharged from hospital care.

Several years later, my condition relapsed, and this time it was far more severe. In the months leading up to my hospital admission in April 2024 with agranulocytosis* and neutropenic sepsis**, my health deteriorated steadily. In February 2023, I was admitted to hospital with chest pains but my blood tests came back fine and I was told to reduce my stress at work.

By June 2023, I saw my GP as I was experiencing significant mental health trauma. I experienced violent shaking episodes and periods of extreme emotional distress that grounding techniques couldn’t touch. As my thyroid levels had been normal a few months earlier, it was thought my symptoms were related to the significant stress I was under at work.

As the year went on, I developed a rash that was initially attributed to a virus. The headaches were unbearable – so intense I couldn’t lift my head – accompanied by a frightening sensation that my brain might explode.

By early 2024, I remember going into a pharmacy to buy pain relief, gripping the shelving and my head at the same time, struggling to regulate my body in public. At the time, I didn’t have the language to explain what was  happening.

Looking back now, I understand this as severe thyrotoxicosis*** – a state where excess thyroid hormone affects not only the body, but judgement, inhibition, and insight itself.

By March, I was referred back to an endocrinologist. A blood test confirmed I had relapsed and I started back on carbimazole. As the relapse progressed, my body entered a state of extreme physiological overdrive. My blood  felt as though it was boiling. These episodes were not driven by anger or emotion – they were involuntary surges that I could not bring down. Once triggered, often at stressful times, they could take days to settle and, over time, became more intense and more frequent.

One of the most distressing changes was my voice. It deepened and became harsh, sometimes unrecognisable even to me. On rare occasions, during intense physical pain or distress, my voice would raise. These moments  were entirely out of character and left me ashamed and confused.

What people often don’t realise is that with severe Graves’ disease, emotional and physical overdrive doesn’t resolve quickly. During those periods, I couldn’t access the calm, reflective state needed to repair or explain – even though I desperately wanted to. I instinctively tried to keep distance, knowing I was not myself and wanting to protect others from my volatility. But the illness showed itself anyway.

None of it was deliberate. Six weeks after starting on carbimazole, I had another blood test at my GP because I was feeling so poorly and I developed lesions on my face. By that point, my immune system had become critically compromised. When my GP saw the results she stopped the carbimazole.

A week or so later, I had another test to see if there had been any improvement but when she looked at the  results in fact it was much worse. That’s the day she phoned me and I shared that I was feeling very unwell with  a sore throat and I was admitted to hospital.

I had developed agranulocytosis as a side effect of my treatment with carbimazole. My bone marrow stopped producing white blood cells, placing me at serious risk of infection. The illness had moved beyond relapse into a life-threatening state. I was admitted for emergency treatment, and surgery followed. A thyroidectomy ultimately saved my life.

Even on the day I was admitted to hospital, I mistakenly believed I was well enough to attend an occupational health meeting to confirm that I was fit for work. This is one of the most deceptive aspects of Graves’ disease: it  can remove the ability to recognise danger in yourself. Determination to ‘carry on’ is not evidence of wellness. In my case, it was a symptom of the illness itself.

Recovery from surgery was not immediate. Only after my thyroid was removed did I begin to understand just  how unwell I had been. My tremor disappeared. I could write legibly again, hold a cup of tea without spilling it,  and feel my body returning to a human pace.

But recovery doesn’t end when blood results normalise. There is a long tail – physical, cognitive, and emotional  that often goes unseen. Fatigue lingered. Emotional regulation took time. Graves’ disease leaves a surplus: surplus exhaustion, vulnerability, and recovery time.

I see the contrast most clearly now in ordinary moments. When I was unwell, even swimming became rigid and
confrontational without me intending it – only urgency. Now, in recovery, that feels alien. You adjust, you wait, you share space. That difference tells me everything I need to know about what the illness was doing to my  nervous system.

When an illness substantially affects how you think, sleep, regulate emotion, or function day to day, it is a  disability – even if it is temporary or invisible. That reality is often missed.

I’m writing this for anyone reading from a hospital bed, frightened by symptoms that don’t yet make sense. You are not weak. You are not imagining this. And you are not failing because you can’t push through.

Medical advisor comment

Thank you for sharing your story to highlight how Graves’ disease can affect both our physical and psychological wellbeing, and to raise awareness of these very rare complications. We would like to reiterate to anyone reading  this that agranulocytosis is an extremely rare side effect of treatment with antithyroid drugs. Symptoms are fever, sore throat and mouth ulcers. As your GP did in your case, if patients develop any of these symptoms whilst taking antithyroid drugs, they must stop taking them immediately, and urgently go to their nearest Emergency Department and ask for a full blood count, including white cell count.

You should also tell the medical team that you have been taking antithyroid drugs. Once the white blood cell recovers, patients can usually restart on carbimazole, although the severity of your case made it necessary for you to have a life-saving thyroidectomy.

We understand that when you were admitted to the hospital in spring 2024, you had experienced a mental health crisis in 2023 precipitated by severe workplace stress. While we do not know what your thyroid levels were doing at the time, it is certainly known that episodes of illness or severe stress can trigger Graves’ disease. So it is likely this was a contributing factor to your relapse.

We wish you well for your continued recovery post-surgery.

*agranulocytosis is an extremely rare, but serious potential side effect of antithyroid drugs, both carbimazole and propylthiouracil (PTU). In this condition, the bone marrow becomes suppressed which causes the white blood cells to be lowered (neutropenia). This makes it harder for your body to fight infection.
**neutropenic sepsis is a life-threatening emergency that occurs when a person with neutropenia develops a severe, systemic infection (sepsis).
*** thyrotoxicosis is an excess of circulating thyroid hormones due to any cause, including hyperthyroidism.

Further information

Our antithyroid drugs alert card acts a a handy reminder of these rare side effects and outlines what to do if you develop symptoms.

Download our antithyroid drugs alert card 

Living with hyperthyroidism

The University of Aberdeen has produced a Workplace Thyroid Toolkit together with
The Thyroid Trust. This aims to raise awareness of how thyroid conditions can affect
employees in the workplace and shares tips for employers and employees.
Download the toolkit