I couldn’t do the things I was once able to do without feeling like my body was ready to give up.

Shalia’s anxiety, palpitations and shaking were initially put down to poor mental health. After a long journey with Graves’ disease and Thyroid Eye Disease (TED), she’s sharing her story to help others recognise symptoms and seek help. She also wants others to know they are not alone.  

In October of 2022 I was diagnosed with Graves’ disease at the age of 17. This was after having been undiagnosed for many years and my symptoms being put down to mental health issues. 

I realised something wasn’t right in school around about 2019, when I was experiencing uncontrollable anxiety, heart palpitations, shaking, sweating, constant urinary tract infections and even vomiting at times. I couldn’t do the things I was once able to do without feeling like my body was ready to give up.  I would often sit and tell my mum it felt like ‘I was dying’ and I knew something far deeper was wrong. All my symptoms were put down to a decline in mental health. I had never even considered that my thyroid could control so much and that it could be the problem. I went along with the doctors until August of 2022 when my family noticed a significant swelling in my thyroid gland.

After contacting my local hospital in September, and having an ultrasound on my thyroid gland and a blood test I was later diagnosed in October. This meant I was put on carbimazole to control my high thyroid hormone levels. I was robbed of all confidence and control. I was stuck in what to do or where to go and I would often sit and pity my future. I deprived myself of friends and loved ones due to feeling like a burden, and not having the energy to fulfil relationships anymore.

The carbimazole worked until July of 2023, when I started to experience a whole new set of symptoms and it was out of control. After a blood test and an emergency visit at the hospital I was told my medication had ‘worked too well’ and my body went into shock causing a thyroid storm. I was told this was because my thyroid had released too much hormone for my body to cope with, causing my thyroid levels to dip extremely from high to low, the main symptoms I was experiencing at the time of the storm were: neck swelling and tenderness, loss of balance and co- ordination, brain fog, heart palpitations and high heart rate, dizziness, loss of mobility and the feeling of ‘impending doom.’

It nearly cost me my life as it brought me into a coma. It also led to me being diagnosed with hypothyroidism, Hashimoto’s disease and thyroid eye disease. I was then treated with ‘block and replace’ which involves taking both carbimazole and levothyroxine. So far has been successful.

It was a massive shock and I felt like my life was over at the age of 18.  It terrified me that something so harsh could happen so suddenly. I had to make huge changes and sacrifices in my life that I never thought I’d have to face. I was also told several things I never thought I’d even have to consider, such as being medicated for life or potentially going blind, even never being able to have children.  I felt isolated and unbelievably vulnerable and lonely. I spent most of my time with endocrinologists and my GP having blood tests every four weeks to keep an eye on my thyroid levels due to the sensitivity of the medication. I also tried to educate myself about my thyroid. The biggest shock through all of this was just how much your thyroid controls your body’s functions. I just couldn’t accept the fact that I was 18 and not like a ‘normal person’ and having to live with debilitating symptoms was a constant reminder even to look in the mirror and realise I am not the same. It felt unfair and discouraging.

I am now looking forward to turning 20 this summer. This is something at one time I never thought I’d be able to say.  I am still on carbimazole and levothyroxine together, to counteract hypo and hyperthyroidism. According to my latest blood test I could be in remission by the end of this year. I am a different person since my diagnosis, however, I do not let it stop me anymore. Living with an autoimmune disease you have to wake up with the symptoms every day that if a ‘normal person’ woke up with suddenly, they would attend A&E to get help for. I’ve learnt to be kind and more gentle with myself through this journey, and time has definitely helped me accept and realise that there are still opportunities and a life for me. I still face symptoms every day; however, with time these have eased.  I have almost learnt to accept that this is how it is, and I have to make the most of it.

The one message I have for younger people like myself who have been diagnosed,  or are in the process of being diagnosed,  is never give up and never let anyone tell you what you’re feeling is wrong. Be consistent with medication and never think of yourself as ill, you can never be too educated about this journey. Also just be kind to yourself in a life that forces you to face challenges. Never judge someone for what they’re facing invisibly. Be brave and remember that no one is ever alone in this life.

Comment from BTF medical advisor

Thyroid storm is a rare, serious and potentially life-threatening condition which can occur in undiagnosed or poorly controlled hyperthyroidism. A sudden increase in thyroid hormone levels can cause a rapid flare-up of symptoms, which are usually more severe than in hyperthyroidism. The diagnosis of thyroid storm rests on the presence of significant overactivity of the gland and evidence that this is affecting multiple organ systems.   Effects include high fever, fast heart rate, liver dysfunction and neurological symptoms like confusion and agitation. The term ‘thyroid storm’ is sometimes loosely used to denote a significant swing in thyroid hormone levels which makes someone feel significantly unwell.  In Shalia’s case, it appears that her unwellness was caused by a big downward swing in thyroid hormone levels, whereas traditionally thyroid storms are linked to high thyroid hormone levels.   Very low thyroid hormone levels can, if untreated, lead to significant unwellness, including coma.

Thyroid eye disease is also an autoimmune condition and can occur in people with Graves’ disease. One of the risk factors for thyroid eye disease is when thyroid levels fluctuate, which we suspect may be what triggered it in Shalia’s case. Thyroid peroxidase antibodies, which are the main marker for autoimmune hypothyroidism (Hashimoto’s disease), can also be present in people with Graves’ disease.

Shalia is now being treated with the ‘block and replace’ method in which high doses of antithyroid drugs are given to completely block the production of thyroxine. Thyroid hormone (levothyroxine) is then given to ‘replace’ the thyroid hormone the body would normally produce. This method may improve control of thyroid levels in patients compared with using antithyroid drugs alone.

Shalia talks about some of the very frank conversations doctors had with her along the way about the risks of symptoms and treatments. Although we cannot comment specifically on her case, we would like to reassure readers that sight loss is an extremely rare complication of thyroid eye disease, although it can have significant impacts on vision and appearance.  It is therefore important the thyroid eye disease is promptly recognised and treated. Shalia was also told about the risk of never being able to have children. Whilst uncontrolled thyroid levels can affect fertility, women with well controlled levels should be able to conceive and have successful pregnancies.  It is advisable for pregnancy to be planned so that medication and thyroid hormone levels can be optimised BEFORE becoming pregnant. There is further information on pregnancy planning and thyroid eye disease on the BTF website.

As Shalia has described, symptoms of hyperthyroidism can be very severe, when thyroid levels are very high. It can also take some time for symptoms to reduce. Again, we would like to reassure readers that symptoms generally resolve once thyroid levels are brought under control with treatment. We wish Shalia well for her ongoing recovery.

More information and support

Living with hyperthyroidism

Living with thyroid eye disease