“I should have gone to my GP as soon as I experienced these symptoms, and I should have taken it easy!”

As a busy veterinary student, Melis delayed seeing her GP when she first experienced chest pain, breathlessness and palpitations. She’s sharing her story to encourage others to visit their doctor if something doesn’t feel right and to reach out to those around them for support.

What condition have you been diagnosed with?

I was diagnosed with Graves’ disease at the age of 21.

What symptoms did this cause?

I’d had some other visits to the GP/hospital for other issues, and all of them incidentally found tachycardia*, but all of them brushed it off as anxiety (even though I wasn’t anxious) and said that it wasn’t worth investigating further. My first symptoms were intermittent chest pain with shortness of breath and palpitations. After a couple of weeks, these symptoms worsened and became constant. I was feeling jittery all day and struggled to sleep at night. I always felt too hot which made me feel nauseous. I also had a symptom called pulsatile tinnitus.** One of the indicators that I was potentially entering a thyroid storm was that I had some hallucinations, which was scary.

Were these symptoms picked up on?

Regretfully, I hesitated contacting my GP until about three weeks of symptoms. When I did, I was seen by a nurse who found that I was very tachycardic. but stated it was most likely anxiety - even though I was feeling pretty calm despite the jitteriness. They arranged blood tests for me just in case.

How did you eventually get diagnosed?

My first set of bloods revealed low Thyroid Stimulation Hormone (TSH) and high Free Thyroxine (FT4), with high liver enzymes too. This led to my GP running a full thyroid and liver function panel. 

What treatment were you given?

When my full thyroid panel came back abnormal, my GP rang me and asked about my symptoms. When they heard that I was having constant chest pain with nausea and a racing heart of 150bpm at rest, they sent me straight to hospital. I was admitted and kept on the resus ward. I was put on intravenous fluids and a higher dose of the beta blocker, propranolol. In the meantime, I had lots more bloods done, an electrocardiogram (ECG) to record the electrical activity of my heart and a chest X-ray. 

An endocrinologist assessed me during my stay and immediately prescribed me the antithyroid drug, carbimazole, and a higher dose of propranolol.  After this, my TSH–Receptor (TRAb) antibody test came back positive for Graves’.

How are you feeling now?

Two and a half months into treatment, I’m feeling much better. The carbimazole has really been life-changing for me, as I can now do most things that I’d struggled to do when I was unmedicated.

However, I did develop mild thyroid eye disease and this is still an ongoing issue. I take selenium supplements and use eye drops for this which are helping. I was expecting that when my thyroid hormones (T3 and T4) returned to normal, I would be completely symptom-free. Unfortunately, this hasn’t been the case and I’ve found I still need to take things easy because my chest pain and palpitations come back when I overexert myself or catch a cold!

What have been the most difficult parts of your journey so far?

I’m a veterinary student, and I was in the middle of a placement at a vet clinic when I became really poorly. Unfortunately, I ended up being unable to scrub into surgeries and spending most of the day sitting down, but didn’t know what was wrong at this point.

It was also exam season, so I felt a lot of pressure to study despite feeling so unwell. One of our exams is a practical/clinical skill assessment. When I declared my diagnosis, I was not permitted to sit these exams due to the risk to my health and safety, so these were postponed for me until the occupational health team could assess me. I was devastated that my health interrupted my studies but I understand the importance of putting health first.

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

Other than immediate family and a couple of close friends, I kept my diagnosis pretty quiet. My grandpa had Graves’ disease, so my parents already knew a bit about it. My vet student friends understood too because we learn about hyperthyroidism in cats! Though, of course, every patient’s experience is different, so I did try to explain to them how it’s affecting me.

I think, like many illnesses, it’s hard to imagine unless you’re experiencing it. So sometimes I felt quite lonely and misunderstood. I think there’s a misconception that once you’re on medication you’re cured - if only it were as simple as that!

Did you manage to find some support?

The university has been supporting me since my diagnosis by arranging my occupational health assessment and putting in adjustments for my exams and practicals. The health and safety team have arranged a personalised plan in the case of a medical emergency on campus. 

I have been using the BTF website and joined Facebook groups so that I can hear from people who can relate to what I’m going through.

My family and friends have been amazing and have offered me their unconditional support. My GP has also been helping with my symptoms and arranged an early thyroid ultrasound for me whilst I’ve been on the waiting list to be seen by an endocrinologist. 

What would you say to anyone on their thyroid journey?

Firstly, I want to say what you’re going through is tough, and you are doing so well! Remember to be gentle and kind to yourself.

One thing I’ve learnt is how important it is to look after yourself. I should have gone to my GP as soon as I experienced these symptoms, and I should have taken it easy! Sometimes you need to slow down and that’s okay.

I urge you to please reach out to your GP if something doesn’t feel right. If you are still waiting to see an endocrinologist, your GP can still help you with managing your condition in the meantime. That’s what they’re there for!

It’s so important that you continue to advocate for your needs, whether you’re at school, college, uni or work. There are many ways that they can support you, and you fully deserve to receive the support and accommodations you need. Telling my uni about my diagnosis has allowed me to continue my studies with peace of mind. 

* Tachycardia - fast heartbeat of more than 100 beats per minute when resting

** Pulsatile tinnitus – hearing your pulse in your ear

Melis is kindly doing a sponsored knitting challenge to raise awareness and vital funds for thyroid disease.

Donate to Melis’ knitting challenge

Comment from BTF medical advisor

We are sorry to read about the fairly severe symptoms Melis was experiencing by the time she visited her GP and was subsequently diagnosed with Graves’ disease. Carbimazole is effective at reducing the amount of thyroid hormones produced and it will usually bring T4 and T3 levels down over a period of several weeks.  Even after blood tests normalise, it is not uncommon for people to take a little longer to return to their usual state of wellbeing.  It is still relatively early days as Melis has been on treatment for less than 3 months. Although Melis’ T3 and T4 are being kept within the normal range by her medication, this may still be a slightly different level to where they would have been before she became unwell.  Over time, the TRAb levels will usually fall and the overactivity of the thyroid will settle, allowing her team to reduce the dose of carbimazole.  People usually feel better as they progress through these stages of treatment.

We are really pleased to see that Melis had an early check of TRAbs and has been taking selenium supplements.  These are two key components of a programme called TEAMeD-5. This stands for Thyroid Eye Disease Amsterdam Declaration Implementation Group UK (TEAMeD) and the group  aims to raise awareness of, and improve outcomes in, thyroid disease.  Taking 200 micrograms of selenium per day for 6 months has been shown to improve both the appearance and the function of eyes in thyroid eye disease.  Smoking cessation is another key feature of this programme.  It is really important that people are aware of the symptoms of thyroid eye disease so they can report them quickly if they develop any.  Symptoms include redness, swelling or pain in the eyes.  The appearance of the eyes can be altered and people can develop blurred or double vision.  Reporting these symptoms allows doctors to start treatments, such as eye drops and selenium, and consider referral to a specialist clinic if their eyes are not responding to simple treatments.

Further reading

Living with hyperthyroidism

Managing hyperthyroidism while awaiting your endocrinology appointment

Living with thyroid eye disease

TEAMeD