After being diagnosed with Graves' disease, Caitlin went on to develop thyroid eye disease and pretibial myxodema, which are rare conditions associated with Graves'. Doctors also struggled to get her thyroid levels under control with carbimazole so she ended up having a total thyroidectomy. Caitlin's kindly shared her journey to let others know that things do get better but that it can take a while.

Which conditions have you been diagnosed with?

I have been diagnosed with Graves' disease, thyroid eye disease and pretibial myxedema*.

What symptoms did they cause?

My conditions have caused several symptoms, which have evolved and developed over time. My most persistent Graves' disease symptoms have been fatigue, a rapid heartbeat and heart palpitations, a very swollen neck (goitre), insomnia, hot flushes and shaky hands and legs. I lost weight rapidly and did not have a period for almost two years.

My thyroid eye disease gave me very sore, puffy eyes that were sometimes described as ‘bulging’, and made me much more sensitive to light. My pretibial myxedema started as a very small red bump on my left shin, but quickly developed into large and angry-looking lumps that covered the entire bottom portion of both of my legs.

How were they picked up on?

It was when I was 18 during my first year at university that my symptoms began. I had been losing weight slowly (and intentionally) for a few months prior to beginning uni, but when I started at university the weight continued to drop off me despite a terrible diet and less exercise. For months, I experienced fatigue, hot flushes and heart palpitations, and also noticed that my period had stopped, but I ignored these symptoms. The symptoms got much worse and I spent many days bedbound, experiencing a lot of brain fog and confusion. Eventually, a close friend noticed a swelling in my neck and I decided to go to my GP. Upon describing my symptoms, the GP carried out a blood test and checked many things, including thyroid function. I received a phone call the next day from a consultant at the hospital informing me that I had hyperthyroidism and needed to begin treatment immediately.

What treatment were you given?

Following my diagnosis, I was prescribed carbimazole and propranolol to help with the heart palpitations and shakes. Many of my symptoms quickly improved, but I spent 3 years on carbimazole, having blood tests every 6-8 weeks. My dose constantly changed as the endocrinologist tried, without luck, to get my thyroid levels under control. My thyroid levels fluctuated a lot during this time, making many of my symptoms worse and also resulting in new symptoms such as weight gain or depression when my thyroid levels became too low. It became clear that medication was not going to work and so my endocrinologist recommended surgery. After a very long and frustrating wait, I had a total thyroidectomy in June 2024.

How are you feeling now?

I am feeling much better now. My surgery went very well and I have been on levothyroxine since, although it has still been a struggle to find the right dose. Some of my symptoms persist, although to a much more manageable extent now. A new difficulty has been the scar from my surgery as it has not healed very well and is now hypertrophic**, something which I am still receiving treatment and support for.

What have been the most difficult parts of your journey?

The frustration I have felt throughout my journey has been very difficult. I have felt very out of control of my life throughout my journey, with symptoms often preventing me from doing many of the things I would have liked to. It was also extremely frustrating facing a long wait for my surgery and frequently being told that there was nothing that could be done to prevent or relieve some of my symptoms, apart from getting my thyroid under control which seemed an impossible task at times. 

The most difficult part of my journey was dealing with pretibial myxedema. Having very noticeable, and constantly growing, lumps on my legs had a huge negative impact on my self esteem and confidence.

As this is a very rare symptom of Graves' disease, I found that my doctors didn’t have any answers or know how to treat this. Again, I was told that only getting my thyroid under control would help but even then the lumps may never go away. It felt like every day I was waiting for surgery, everything was just getting worse, and the prospect that my swollen eyes and legs might never improve was awful.

I am very lucky that both my eyes and legs have improved greatly since my surgery. They are not back to normal by any stretch but they are certainly better and I hope that they continue to improve.

Was it difficult for those around you to understand what you were going through? 

At times, I found it difficult to communicate how I was feeling or what I was going through to the people around me as not many people understood how serious thyroid conditions can be. My family were very supportive and I have some family members with a history of thyroid conditions that made it easier for them to understand. Among my friends, however, I found it harder to talk about. As a young person, it isn’t a condition that young people tend to understand or have knowledge of in my experience. At points, it did feel like some people thought I was using my condition as an excuse, if I was too tired to do something, for example. I initially did not want to share anything about my condition with my university as I didn’t want to feel as though I was using it as an excuse, but once I did they were very accommodating and supportive.

Did you manage to find some support? 

My main support came from my family and close friends, I was not aware that charities like the BTF existed until recently but I wish I had known about them during my journey to this point.

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

Speak up for yourself with doctors! I often felt overwhelmed when in a medical environment and so didn’t fully understand what I was being told or was too afraid to question things. One of the good things about my journey is how in tune with my own body I have become, I can tell when something is wrong or has changed and I am right every time. So trust your own judgment and don’t be afraid to stand up for yourself! And always remember that there is light at the end of the tunnel. It can be very frustrating and difficult dealing with endless symptoms and when your treatment isn’t straightforward it can feel like it will never end, but you will get there in the end!

Medical advisor comment

*Pretibial myxoedema or thyroid dermopathy (also known as Graves’ dermopathy’) -  is a form of Graves’ disease affecting the skin. It affects the lower legs and feet causing swellings, firm lumps and scaling and, more rarely, fluid build-up under the skin. It can sometimes affect the face. Skin can become sore and itchy and also change colour.

It most commonly occurs in people who have:

• Graves’ disease but can also occur in people with hypothyroidism
• Have severe eye disease
• Are women
• Are aged between 40 and 60

In most cases, the condition will clear up on its own although it can take several years in some patients. Generally, the prognosis for pretibial myxoedema is quite good. In people with Graves’ disease, symptoms of pretibial myxoedema improve as TSH-Receptor antibody (TRAb) levels improve with treatment of the overactive thyroid. Generally, the condition doesn’t require treatment if symptoms are cosmetic or mild as the condition will clear up on its own. In severe cases of pretibial myxoedema, the outlook is still good, but it could take several years before the condition goes away completely.

Patients with severe pretibial myxoedema are usually referred to dermatology where there are some treatment options available including steroids, immune modulators (rituximab) or octreotide can be tried depending on the severity of the condition.

**Hypertrophic scar = a thick, raised scar. 

More information and support

Living with hyperthyroidism

Living with thyroid eye disease