My name is Gemma. I was diagnosed with Graves’ disease at the age of 22 in September 2022. 

I had just graduated from university and I was working a summer job before returning to university for further studies. I remember beginning to feel extremely exhausted and unwell after every shift, but I ignored these symptoms. It wasn’t until I began my further studies that I suddenly felt extreme anxiety. I started to feel anxious in social situations, began struggling with the idea of leaving my home and quickly got myself into a panic. 

A few weeks passed and I noticed my neck was slightly swollen on the right side so I decided to go to the GP. After some blood tests, it was revealed that I had Graves’ disease. 

I remember my GP phoning me in a panic telling me I needed to go to A&E as soon as possible as my results were bad and I needed treatment. Feeling clueless as I had never come across Graves’ disease before, I began my own research to start understanding the autoimmune condition. When researching the condition I was presented with long lists of potential symptoms, I remember thinking to myself “I can’t be that unwell, I don’t have most of these symptoms!” 

Very quickly I became unwell and that’s when Graves’ disease took over my life. My anxiety worsened and I became irritable. I had a tremor in my hands, heat sensitivity, issues with sweating, fatigue, a rapid heartbeat, shortness of breath, muscle weakness, loss of concentration and my goitre became extremely enlarged. Every symptom I had read about and dismissed became reality.

I found it hard to carry out basic tasks such as going to the supermarket to do food shopping and cleaning the house. Even something as simple as walking up the stairs in my own home became difficult. My body felt like I had run a marathon when in reality I had only walked a few metres. 

I had to stop my university studies as I could not keep up and got myself a job instead. It soon became apparent that I was simply too unwell to work so I had to leave my new job. 

I was placed on a variety of medications and doses over many months, none of which worked. My endocrinologist told me he only sees someone with severe Graves’ disease like me once every 10 years or so. After multiple appointments, A&E trips, hospital admissions and medication adjustments by my endocrinologist, we decided that a total thyroidectomy would be the best way to proceed. 

Due to being extremely overactive, my doctor started me on Potassium Iodide (KI)* in preparation for my planned surgery in an attempt to lower my levels for a safer surgery. The iodine did not work and my surgery was cancelled. After waiting a few more months we started the iodine again ready for my next planned surgery, but this surgery was also cancelled due to the potential risks and complications. It became apparent that I would not respond to the iodine, so the next plan of action was lithium. We had already at this point tried every medication possible and the lithium was my final chance for a safer surgery. 

I was admitted to the hospital while being administered the lithium. After a week I received the news that the lithium was working and lowering my levels. I remember the overwhelming feeling of a sense of relief that my surgery would be less risky and complicated. 

In July of this year I received the total thyroidectomy surgery. I was put to sleep and the next thing I knew I was awake with two large drains coming out either side of my neck and a large incision which was extremely bruised and painful. On the ward I began suffering with pins and needles in my hands and feet, facial twitching and cramps. My calcium levels had dropped and I ended up remaining in hospital for one week until my calcium levels were safe enough to discharge me. 

Since the surgery, I have been diagnosed with hypoparathyroidism. My calcium levels are still an ongoing issue and I struggle with cramping day to day. Despite this, my neck has healed incredibly well and I no longer feel any symptoms I had as a result of Graves’ disease. 

I am so incredibly grateful to now wake up every day without being in pain and suffering. The surgery was the best decision of my life. Despite the ongoing problems I am experiencing now, my quality of life has improved massively since the surgery and I am able to do things I couldn’t do for a very long time. 

I am working to raise awareness for Graves’ disease and to express the impact that it can have on your life. As a young adult, this experience has really taught me a lot and I do not want any other thyroid patient to feel as though they are alone! 

BTF medical advisor comment

We are sorry to read about the long journey Gemma has been on with her Graves’ disease. It is good to read her symptoms are greatly reduced following her surgery.

Patients undergoing thyroidectomy (surgical removal of the thyroid gland) to treat Graves' disease are usually treated with antithyroid medication initially to bring their thyroid hormone levels under control. This is important as an enlarged overactive gland is a challenge for the surgeon as surgery can be difficult; with the potential for higher blood loss and a greater risk of complications. In the majority of patients, antithyroid drugs are effective and surgery can proceed safely once thyroid hormone levels are normal. In some patients, however, antithyroid drugs are not suitable (for instance if the patient has had a reaction to the drugs), or, as in Gemma’s case, the drugs may be ineffective in normalising thyroid hormone levels. Gemma was given Lugol's iodine (also known as potassium iodide) to normalise her thyroid levels. Short-term (usually 10 days) treatment with iodine blocks the release of thyroid hormone from the thyroid gland and also reduces thyroid blood flow. When this approach did not work, doctors gave her lithium to achieve this. Lithium can also reduce the thyroid gland’s iodine uptake and subsequent hormone production.

During thyroid surgery, the parathyroid glands (which surround the thyroid gland and are responsible for regulating blood calcium levels) can become damaged and produce too little parathyroid hormone. This condition is known as hypoparathyroidism. This can cause blood calcium levels to fall and blood phosphorus levels to rise. This can cause a wide range of symptoms including muscle cramps, pain and twitching.  In most patients, parathyroid levels will recover in the first six months following surgery. A small minority will; however, have permanent hypoparathyroidism. At two months post-surgery, it is too early to tell whether Gemma’s hypoparathyroidism is temporary or permanent but her doctors will be monitoring this closely for her.

Further reading

Information about thyroid surgery

Parathyroid UK

More information

Living with hyperthyroidism 

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