“It's difficult because the people around you cannot physically see it. To them you look well.”

Abby’s Graves’ disease became difficult to stabilise due to an underlying health condition affecting her ability to absorb antithyroid medication. This resulted in her developing a rare but serious complication called thyroid storm* and having a total thyroidectomy. Abby has shared her story to support others on their thyroid journeys.

Which condition were you diagnosed with?

I was first diagnosed with hyperthyroidism. After three months, this was confirmed as Graves' disease and it escalated to a thyroid storm. 

What symptoms did it cause?

Heart palpitations, breathlessness, extreme fatigue, weakness, hair loss, heat sensitivity and my organs began to shut down when I went into thyroid storm!

How were they picked up on?

I first went to the GP because I could feel my heart beating too fast and I was getting breathless doing normal activities. They gave me a 24-hour heart monitor and sent me to A&E with a suspected blood clot in my heart due to my rapid heart rate. At A&E, I was diagnosed with hyperthyroidism.

What treatment were you given?

I was given betablockers (propranolol) to control my heart rate and the antithyroid drug, carbimazole and then PTU. The carbimazole did not absorb properly into my body due to my ulcerative colitis**.

Things got worse, and when attending an outpatients’ appointment a couple of months later with the inflammatory bowel disease team, I was sent to A&E due to breathlessness. After they checked my heart rate (it was 187) and blood pressure, I was admitted to intensive care for seven days with a thyroid storm. It was then that they told me the cause of my hyperthyroidism was Graves’ disease. I stayed in hospital for three weeks until I was stable enough to have the thyroidectomy. I was treated with iodine*** and intravenous steroids and betablockers. I then had a total thyroidectomy.

How are you feeling now?

I am happy to be alive and very grateful! But I am still struggling as we have not been able to find the right level of thyroxine. Each time I get my levels checked they are not right so we keep putting the thyroxine up. It's gone from 75mcg daily to currently 200mcg.  My endocrinologist has been very supportive and on top of things. They think my bowels are causing issues with absorbing the medication and that's why we are struggling to sort the levels but hopefully we will get there. 

What have been the most difficult parts of your journey?

I think how suddenly this happened, and the shock that this could even happen to my body, have been the most difficult things to deal with. Spending around five weeks in hospital was also very difficult and took a huge toll on my mental health. I really struggle knowing that I cannot do the normal activities that I used to be able to. Even though I try my best, it is very difficult to cope with. 

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

It's difficult because the people around you cannot physically see it. To them you look well, so it is draining having to try and explain yourself constantly. Feeling people cannot understand what you are going through also feels extremely isolating. 

Did you manage to find some support? 

I found a lot of support from reading up on thyroid conditions, from speaking out and asking for help and from the people I am close to in my life who I can open up to. 

What would you say to anyone on their thyroid journey?

For anyone on their own thyroid journey, I would say always seek help when you feel something isn't right. Continue to be hopeful because in the end, it will turn out ok! And also be open. It's really surprised me how lacking thyroid information is in general. The more awareness we can spread, the better. 

Medical advisor comments

*Thyroid storm is a very rare but serious complication of Graves’ disease.  Significant overactivity of the thyroid is associated with multi-organ dysfunction, including abnormalities of temperature regulation as well as cardiac, neurological and liver dysfunction.  There is often a trigger, such as the inability to take or absorb anti-thyroid drugs, surgery or pregnancy in someone with an uncontrolled overactive thyroid.

**Ulcerative colitis is an autoimmune condition in which the body's immune system mistakenly attacks healthy cells in the colon and the rectum, causing inflammation and ulcers. It can impact the body's ability to properly digest food and absorb nutrients, which may lead to serious vitamin deficiencies and malnutrition. It appears that Abby’s ulcerative colitis has made it difficult for her to absorb her antithyroid drugs and her levothyroxine.

***Lugol’s iodine can temporarily suppress the thyroid gland and is used to stabilise high thyroid hormone levels in people like Abby when they being prepared for urgent thyroid surgery. This is a very specific form of iodine and can only safely be given under medical supervision after antithyroid drugs have been commenced.

Further information

Living with hyperthyroidism