Graves’ disease and thyroid eye disease

“I'm sharing my story to raise awareness for what is a very ‘invisible’ diagnosis but completely life changing.”

In May 2022, I gave birth to my first child Austin. After having a wonderful pregnancy with no complications, sadly I experienced a very traumatic birth ended in an emergency C-section under general anaesthetic. 

In December 2022, I started to experience high anxiety, dizziness and drastic weight loss. I put all my symptoms down to a decline in my mental health following difficulty recovering from my birth physically and emotionally. I ignored my symptoms until March 2023 when I finally contacted my GP regarding my symptoms. 

My blood results showed hyperthyroidism and I was told to wait another four weeks to retest before actioning any medication. Over this month, my symptoms increased, and I began experiencing a very high heart rate, which ended in me going to my local A&E. After tests, I was started on the antithyroid drug, carbimazole, and betablocker, propranolol, while waiting for an appointment with an endocrinologist.

I was seen in June 2023 for my first appointment and the appointment began with ‘we’re here to talk about your Graves’ disease’. This was a huge shock, as I had not been told I had been tested for this and that I was positive. I felt completely alone, walking out with little information and a leaflet about Graves’ disease.

After months of endless blood tests, changes to medication and difficulty getting my bloods levels within the best ranges, I had joined a number of support groups, followed The British Thyroid Foundation and started sharing my story within my own social media to raise awareness for what is a very ‘invisible’ diagnosis but completely life changing.

In July 2023, I was admitted to hospital again after experiencing symptoms of a thyroid storm. My body was shaking, I was sweating profusely,  feeling faint and had a rapid heartbeat. Again, I wanted to ignore this but I was taken to A&E and given the appropriate treatment. Luckily, I was not having a thyroid storm but a rise in my levels again. This incident made me realise I needed to listen to my body and understand my symptoms and make sure I reach out when my body doesn’t feel right.

In December 2023, my levels were very high again and I was seen urgently by my consultant and told I had limited options to continue controlling my Graves’ Disease. I am not suitable for radioiodine (RAI) due to having a young child to care for. I was told I needed to start considering surgery to remove my thyroid. Again, I felt completely unprepared for considering a huge decision regarding my health.

The same month, I had also started to develop symptoms of Thyroid Eye Disease (TED) and this was becoming more evident in my physical appearance. This was something that had affected me more than I thought as my confidence began to dip.

After several appointments with surgeons, endocrinologists, and ophthalmologists, I was diagnosed with TED but with no planned treatment at this time. I decided I did not want to undergo surgery in the hope of achieving remission.

I am currently on Block and Replace* treatment for my Graves’ Disease (30mg carbimazole and 75mcg  levothyroxine) and this thankfully has got most of my symptoms under control. I am waiting to see the ophthalmologist next month to discuss possible steroid treatment for my TED as my symptoms continue.

I am not the same person I was before my diagnosis. It has changed me, changed my life and how I see the future. From the outside, I appear well, and I try to walk around with a smile on my face but on the inside, it is all consuming. It is something I have to always consider; I don’t have the confidence I once had and it can be hard to see myself as the person I once was.

I had never heard of Graves’ disease prior to my diagnosis and did not know the extent of how much it can affect your life, mental health and people around you. I do believe that my Graves’ disease developed in direct correlation of my traumatic birth and the stress my body was put under.

I am lucky enough to have a wonderful husband, supportive friends and family and a great workplace who have made reasonable adjustments for me. Without that, I don’t think I could have made it through it all. My son Austin has been my light and he has given me purpose, for him I will continue to fight for the right treatment, advocate for myself and share my story with others so we don’t feel alone with our diagnosis.

*Block and replace involves antithyroid drugs being given at a higher dose to ‘turn off’ the thyroid hormone produced by the body’s own thyroid. Levothyroxine (a synthetic version of thyroxine) is then given to replace the thyroid hormone at the right amount.

Further reading

Living with hyperthyroidism

Living with thyroid eye disease