Eleanor's story - Graves' disease

“I didn’t feel that the hospital specialist explained it at all well, so I set about learning as much as I could from various sources on the internet, including the British Thyroid Foundation which I found particularly helpful.”

In the early summer of 2018 my husband and I had just settled into our brand new home in Wales, after retiring there six months earlier. We had many friends here, and had always planned this. After a difficult few months in temporary accommodation whilst waiting for the house completion we were finally here.

Prior to this, I had been a fitness instructor and personal trainer for 8 years after a stressful corporate career in the health service. I was very fit, having run several half marathons in my 50s, and was still running a few times a week in my mid-60s.

Suddenly I began feeling odd. I was breathless in the gym, noticing that my heart rate was going up to 150 as soon as I got on the cross trainer. I was sweating a lot (which I put down to the very hot summer) and felt very shaky. I could no longer run as I got out of breath. I then noticed that I was losing weight, but put this down to the efforts of house moving.  However, when I had lost nearly a stone I realised that this was not normal, and went to the GP.

I was very lucky to have an excellent female doctor who realised straight away that something was wrong, and after a few blood tests, she confirmed that I had an overactive thyroid and she suspected it might be Graves disease (GD). I was immediately prescribed beta blockers and a high dose of carbimazole, and referred to an endocrinologist at the hospital. I had to wait quite a while for an appointment so during this time the GP continued to do her best, following the NICE guidelines for drug dosages and monitoring my condition.

As soon as I saw the specialist he confirmed the diagnosis of GD. I was quite shocked and bewildered on learning that I had, out of nowhere, developed an autoimmune disease that was affecting my health and fitness. I had previously been so fit, even though I did have arthritis in some places. I didn’t feel that the hospital specialist explained it at all well, so I set about learning as much as I could from various sources on the internet, including the British Thyroid Foundation which I found particularly helpful.

After a while I was able to stop the beta blockers but my blood readings were very slow to change. I had to continue taking carbimazole for nearly 18 months, with regular blood tests and hospital visits. Frequent changes to the dosage of carbimazole caused much frustration, as the consultant’s letters to the GP were very slow and I had to often chase things up. I also had to ask for paper copies of all my blood results as in Wales digitilisation had not progressed. I found it all very psychologically challenging – the diagnosis, the frequent chasing up, and generally feeling unwell. I also put on a lot of weight which I found difficult to cope with.

I was finally stabilised and was able to come off all medication in December 2019, just in time to undergo extensive hand surgery for arthritis (a joint replacement and removal of a bone at the base of the thumb) just before Christmas.

Everything was looking up, until May 2020, at the height of Covid, when I fell ill with acute appendicitis. (another shock!). I had numerous blood tests prior to emergency surgery and one of them came back showing that my TSH levels were dangerously low. I had relapsed, and had to be referred back to the endocrinologist.  I was very downhearted.

I had to wait a long time for my referral, even though I had been a previous patient, and had to fight for it to be speeded up. I was put back on carbimazole, and was told that I would have to be assessed for radioiodine therapy (RAI) or surgery. Again, I had to research these treatments myself, and soon came to the conclusion that I wanted neither. There is a strong history of heart disease in my family, and total removal of the thyroid usually causes weight  gain, which I felt was a huge risk factor for heart disease.

I had to be very assertive to insist that I wanted to stay on medication. I was able to quote research to support my case after extensive reading. As this was during Covid they were not doing these procedures anyway, and eventually, I got my wish. My condition stabilised, my dosage was gradually reduced, and I am now on long-term carbimazole with the lowest possible dose - 5mg every other day.

I am aware of the risks, but I have never had any side effects. I now feel well, my weight has stabilised, and I can exercise regularly (though sadly I have had to give up running). But it has been a long, hard battle, and I still don’t really understand why, at the age of 64, I suddenly developed a life-long autoimmune disease!

BTF medical advisor comment

We are often asked whether patients can stay on carbimazole or propylthiouracil long term. In theory, there is no reason why not, provided your thyroid gland remains well controlled. It will initially involve regular clinic visits and blood tests every six to 12 months, under the supervision of a specialist, as doses may continue to need to be adjusted. Once you are stable on a low maintenance dose you may be discharged for follow-up by your GP. You will, however, remain at risk of side effects. Many people feel that radioactive iodine is a more straightforward solution.

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