The same story on endless repeat. I’ve been poorly every day now for 7 years. Yes, to varying degrees but the bad days vastly outnumber the ‘good’ and even more so since total thyroidectomy. This is not negativity, pessimism or not remembering things properly (as people so readily suggest) this is fact.
Somedays I think the cruelest thing about this disease is that it won’t kill me (we think.) Having said this, after dealing with the relentless torture of my current symptoms for more than a month, I can’t imagine that this body will make it to old age either. And that’s just talking about the physical and psychological symptoms that send my brain and body wild. Not to mention what actually living with this disease is like – the debilitation, isolation, lack of support and total ignorance have their own consequences. The void of medical, emotional and practical support is unreal. Once again I’ve found myself questioning how I will get through.
Blindsided
I headed to my next consultation in February 2024 expecting to discuss ectopic thyroid tissue and likely the removal of a small thyroid remnant that was highlighted at my last scan. My TSH ( blood measure) was still fluctuating, even though I was hyper-vigilant when taking my thyroxine and remained on the same dose for over a year now. The blood results are significantly more erratic than pre-surgery and the irony that, I wasn’t initially believed because this measure was stable, is not lost on me.
What was shared with me that day, took me completely by surprise and punched the air out of my lungs. Due to the absence of raised antibodies, it couldn’t be ectopic thyroid tissue causing the problem. (For a small moment I felt validated and filled with confidence because I had asked this very question at the previous appointment – ‘but if the antibodies aren’t raised is it possible it can be the thyroid tissue still causing the problem? – not such a silly woman after all.)
The team had spent some time researching and wanted to check if I had a rare genetic disorder. The consultant explained his theory and for the first time in 7 years, what he shared felt possible given what I had experienced, which was devastating given that (if this is the case) nothing can be done. This might be my lot for life. They suspected that this rare genetic condition was something that I was pre-disposed to but ‘giving birth was the key that switched it on’ and that ‘there may be a key that switches it off but we don’t know what that is or if it will happen.’ I was extremely unwell that day and all I could think was, ‘I will not survive, I do not want to survive.’ Mum and I sat on a bench together outside crying and gasping for breath as we contemplated what we had been told.
When I got home I had to listen to people try and fix it for me, positively and comfortably for them. ‘Well at least you might have a diagnosis,’ ‘maybe now’s the time to try anti-depressants,’ (like putting a plaster on a broken arm for a broken leg,) ‘you have to focus on the positives and be grateful for Joe and Lina.’ All of it veiled dismissal that is saved especially for chronic illness and has its own problematic long-term consequences. I took another step back from people and retreated into my strange parallel world. Though I’ve not been allowed to retreat too far because during the difficult weeks a very small handful of people have stood firm, checked in, sent homemade food and flowers, but most of all gifted me patience and understanding. Which has meant so very much and gives me a lot to focus on and hold on to.
Next Steps
Action was slow to come, March and April passed and then I got busy again and chased (and chased.) The letter arrived at the end of May and detailed that a referral should be made to an endocrinologist in the northwest, who could then arrange for genetic testing. I followed up with my GP, the referral was made and then I tried to get on with life the best I could.
During this time my regular doctor was on sick leave and in her absence I received a call from a receptionist at the surgery who said ‘hi, I’m just calling to inform you that a doctor has reviewed your blood results and has asked me to let you know that having your monthly blood tests are excessive so I’m going to cancel your next appointment.’ I cannot tell you how quickly this sent me into fight or flight mode, raising all my fears and triggers instantly. I tried to stay calm and referred to the previous instruction from my consultant where the tests had been explained but this was not enough. I put in some additional labour and another letter was issued resulting in the tests being reinstated.
Summer
The months passed- my daughter turned 7. Early summer was a bit lighter, the physical symptoms persisted but my mental state became a little more stable. My mum once read somewhere (very factual) that there are more TSH receptors in the brain than anywhere else in the body. This made a lot of sense to me. It took a few hours and days without being plagued by intrusive thoughts and the constant preoccupation of dying for me to realise just how mentally fucked I had been since surgery. It had been similar after the thyroid storm postbirth (2017). A debilitating loop of constant deathly chatter that took a couple of years to calm. The assault of surgery and a shot of thyroxine too much had perhaps set all my brain receptors off again – I don’t know, but when the experts don’t know, it seems natural to try and make sense of it all.
My dad was diagnosed with cancer and began radiotherapy.
Then we went on holiday – something that I’ve become obsessed with. I’m convinced I’m better in the warmth and there’s a convulsive need to escape my life and circumstances. Holidays have become a different thing. I long to be still and content at home. France was calm, sea, sun and stillness together as a family. I was the mum I thought I would be for a few short moments.
After our trip and for the rest of the school holiday’s I realised just how much we NEED others to function, to help. As a previously extremely independent woman, I find this hard. I just want to look after my own child, partner, parents (especially now) and friends, providing the support that they so committedly give to me.
Handover
My GP since surgery has been the lifeline that I desperately needed. She understood the complexity, the human, the impact and proactively requested to see me regularly. She rebuilt trust, took the onus off me and cared about my life. About me being alive. At the end of Summer 2024, she left and moved to Australia. I knew what I was losing and that I likely wouldn’t find it again. She was part of my care at the right time. I genuinely don’t know how I would have managed post-surgery without her or what I will do moving forward. She handed me over to a new GP…
Healthcare Admin
In September 2024 and with little movement since February, I called to ask about wait times to see the endocrinologist, these were 10 months + (for non-urgent care) and we didn’t even know if they could/would make the referral for genetic testing. The thought of involving another person felt uneasy. I began to question my support from the specialist team, why could the tests not be carried out by their geneticist? Were they really sure that this could be the diagnosis or was it just something to tell me? Was this about money and funding? I asked them and I waited. I visited the GP, they chased other avenues and I waited. I requested the price of private tests and I waited.
Crisis Point
August was hard enough, September was nearly impossible and by October 2024 I was off work sick – I’m never really well enough to work but there’s little choice and it’s good for me – the job I have is good for me anyway, which I know is rare. I seemed normal to others but no one knows the strength that takes and what it takes from me; whilst at the same time being good for me, for the soul part of me. People are shocked when I share details of this journey, ‘but you’re so happy’ and ‘positive’ they say. But I’m not happy. I find moments of joy, I am driven by my little one, she keeps me focused and alive.
Home became hard again. Physically I couldn’t function and mentally I was erratic, hormonally charged and overcome with dark thoughts. A pick and mix of aggressive discomfort that takes over my whole body. Once again my partner stepped into carer mode (still not at full health himself after glandular fever) and together we got through – mechanically together, emotionally separate and too at capacity to even consider looking after another person’s emotions.
I still don’t know how to translate these experiences in a clinical appointment (or in this blog) where medical notes include words like ‘fatigue,’ ‘low mood’ and ‘non-urgent.’ In his desperation, my partner called the specialist team and they said they would see us in a week.
Hope
My symptoms continued to peak to a veracity that I hadn’t experienced since surgery, luckily this coincided with a routine blood test. I visited the surgery to get my bloods drawn and had to walk through the words ‘there is always HOPE,’ which were painted on the entrance doors. That day I felt whatever the opposite of hopeful was and then I felt bad for feeling it – I chastised myself for doing a shit job of this, why was I not more hopeful? So negative, such a failure. I spiraled into tears and wailing – the nurse got a rare picture of my life that day. The true picture of a woman in total and utter torment.
Results
When I received my results I was somewhat reassured by the fact that they may reflect what I was experiencing symptoms-wise and were out of range for the first time since surgery. The surgery called and a receptionist informed me that due to the current blood results a GP suggested that I adjust my dose of thyroxine. ‘Up or down?’ I asked, she didn’t know…‘Which doctor reviewed and actioned?’ I asked.’ The name of a GP I had never seen before, she responded…When did it become normal for these conversations to be an admin job instead of a conversation between GP and patient? I left my dose the same as instructed by the specialist consultant – they were building a clinical picture over time.
Fears
The following week, I made the 3-hour journey to visit the specialist. I was poorly, drained and full of fear. Feared that this appointment would be my last and that they would no longer support me. Feared for my parents’ health, for the future health of my daughter, for when menopause comes, for if I lose my ability to work, for my partner leaving. Feared for dealing with anything else on top of this – life dictates that I will have to. But I’m just not sure that I can.
Click the links to read parts one, two, three, four, five, six, seven, eight and nine of my journey.
Life Loves and Learning 