Written by Louise Sellar, Director, Thyroid Trust
This was my mantra as I battled with distressing symptoms during a global pandemic lockdown. I first started suffering symptoms during the first lockdown of the coronavirus pandemic in 2020.
The first symptom I noticed was that my heart was racing at rest and I started to feel very anxious. I then started to have hot flushes and night sweats and difficulty sleeping. I contacted my GP surgery , who were only offering telephone consultations at this stage of the pandemic. Due to early menopause running in my family and as I was just about to turn 40, they suspected that might be the cause and gave me lots of helpful tips and advice. However, things just kept getting worse and one morning I contacted 111 as I had woken early with an extremely fast heart rate, I was advised to go to A and E where upon having bloods taken, to check that I hadn't had a heart attack, the doctor advised me that I was suffering with anxiety due to the stress of being in lockdown.
I remember Googling my symptoms and it kept coming up saying I had hyperthyroidism. I didn’t even know what the thyroid was or what it did. On the NHS website it stated that it tended to run in families. No one to my knowledge has ever suffered with a thyroid condition in my immediate family, so I discounted it on that basis. My symptoms continued to the point where I had online counselling because I thought I was suffering with poor mental health. It was only when I started to shake uncontrollably that I knew there was something terribly wrong. At the time I convinced myself it was Parkinson's disease as that was my only knowledge of illness that made you shake.
I took a private blood test and discovered that it was indeed hyperthyroidism. My GP was very quick to act once the results came back from my private blood test. The GP did further tests themselves and they started me on Carbimazole and prescribed me Propranolol for my racing heart. I was then referred to Endocrinology but due to the pandemic there were no NHS or private Endocrinologists taking on new patients in my local area.
I was very fortunate at the time to have private health insurance and was able to access care from a fantastic Endocrinologist who is a practising NHS and private consultant in Bristol. His care was exemplary. He arranged for me to have my antibodies tested which confirmed that it was Graves' disease, which is an autoimmune disorder. I remember just being in shock because before the pandemic I had been in the best shape of my life. I ate well and exercised regularly and no one in my family had ever had a thyroid problem. Being unwell, still working full time from home, and having to home school my children it was a lot to cope with. I will be honest it took me a while to come to terms and accept that I would now live the rest of my life with a chronic illness.
My consultations were all online due to the pandemic. The Endocrinologist suggested that I try medication for 18 months to see if my Graves would go into remission. However, it became quite apparent, quite quickly, that medication was not going to be a long-term option for me. I had complications with my liver ALT levels. I found myself bouncing between being over and under active. I remember saying to my doctor that “I never want to feel like that again” referring to my pre diagnosis symptoms. So, collectively it was decided that the best course of action was to consider Radioactive Iodine (RAI) treatment at this point. I was taking Selenium and I had my eyes checked out by an optician as I was, and still do, suffer with dry eyes.
This was now early 2021 and my children were only 7 and 10. So being away from them after the procedure was tough but I got through it and giving them a cuddle at the end of it was just the best. After I had RAI the doctor kept me on Block and Replace Therapy (a combination of Carbimazole and Levothyroxine) to avoid any ups and downs and that seemed to work quite well. Six months later I had my bloods checked and I had gone underactive. I now take a small dose of 75 mcg of Levothyroxine every day. It took a few months to get the Levothyroxine dose correct but I am pleased to say I have been stable ever since.
Before I had RAI, I was nervous and questioning myself, was it the right thing to do to destroy part of my own body? However, in hindsight I am pleased that for me personally it was absolutely the right decision. I feel like I have my life back, I have taken up open water swimming and am able to enjoy time with children and whilst I still have some additional health challenges I have more good days than bad.
During all of this I found support through charities and other patients, in particular one amazing lady named Carole, she was always there for me and still is despite her own health challenges. She inspired me to be strong and also taught me how critical it is not to feel alone with this complex and challenging condition. I have also learnt to be my own advocate and trust myself more.
When I was able to join The Thyroid Trust I was absolutely thrilled. The message ‘you are not alone’ resonated deeply with my own experience. It is an absolute privilege to speak to Thyroid patients every week and hear about their concerns and struggles. Life leads you on unexpected journeys and mine has led me to be part of an amazing team of fellow thyroid patients who are all working to make things better for Thyroid patients and our community.
My friend Carole painted me a picture of some sunflowers which has now been named ‘look back but only to see how far you have come’. So to all other Thyroid patients struggling right now I take you back to my mantra – ‘things might be tough, but you are tougher’.
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