“I still grieve for my good health.”

Being diagnosed with any health condition can alter our sense of who we are and cause us to grieve the loss of our healthy selves.

Suzie describes some of the emotions she experienced after being diagnosed with Graves’ disease and shares some of the things that helped her to adjust to her diagnosis.

Which condition were you diagnosed with? 

Graves’ disease and mild thyroid eye disease (TED).

What symptoms did you experience?

I had hot flushes, insomnia (getting two hours sleep if lucky!), tremors in my hands and inside my body, hair loss, palpitations and chest pain. I also felt my heartbeat in my ears, experienced anxiety and panic attacks, lost weight and had migraines. I ignored a lot of symptoms for a few months, putting them down to stress or early menopause starting. Deep down, I knew something wasn’t right for a while. 

How were these picked up on?

I went to the GP and A&E a couple of times over three months due to the chest pains and palpitations I was having. On my final visit, they did a thyroid function test, and Graves’ disease was mentioned as a possibility. 

What treatment were you given?

I was started on 20mg of the antithyroid drug, carbimazole. 

Did you know anything about thyroid conditions previously?

No, my friend had thyroid cancer 20 years ago and I knew of her treatment but I didn't know anything else about the thyroid or what it does. 

How are you feeling now?

I am a lot better nine months into treatment. It’s taken time and a lot of adjustments and learning. However, last year I wouldn’t have believed I could feel as well as I do now. I’m not back to the old me but I’m getting close, I think! 

What has been the most difficult part of your journey?

Not understanding Graves’ disease initially or being given any information upon diagnosis at all. I got a phone call to say I was positive for Graves’ disease and to go and collect my prescription. That was it! I really was shocked and scared. I still grieve my good health if that makes sense. Coming to terms with having a serious, lifelong condition has been quite hard for me. 

Did you manage to find some support?

The British Thyroid Foundation was a great source of information and support. Their Facebook group for people with hyperthyroidism was so useful and very supportive.

Work was good as I was signed off and there was no pressure from them to rush my return; I have a really nice manager. My husband and family were also supportive as I crashed when I was diagnosed and started on medication and I could barely get out of bed for a while.

I got the Headspace app, which helped massively with the insomnia and anxiety. I also began reiki, which was great for calming down my nervous system and something I’m so pleased I discovered. 

What would you say to someone on their thyroid journey?

Use trustworthy websites, such as the BTF’s, to get your information. Be kind to yourself, listen to your body and take time to understand your condition. It does get better with treatment, but it can take time. 

Further information and support

Living with hyperthyroidism

BTF support forums

BTF psychological wellbeing resources