I have days that are not quite as hard, but these are more infrequent since total thyroidectomy. On the days that are more accessible, I recalibrate quickly and jump in; buy a scooter to play with my daughter, get a wetsuit to swim outdoors and make plans with friends. Some of them come off, many of them don’t, but it feels like hope to imagine the best. I appreciate every second of those days, brief moments where I remember myself, but they’re too quickly gone. The transition is a mental rollercoaster, the better days I am grateful for, but they don’t diminish the fact that it’s hard ‘overall.’
Consequences
I can never look forward to a plan because I don’t know what I will be dealing with from one hour, week, or month to the next. I have to arrange activities with other adults in case, when the time comes, I need help looking after my daughter or with tasks like driving. Lately, I’ve not been able to work, go away with friends, see people I love, but most heartbreakingly, I’ve been absent from my daughter’s activities, not walked her to school, watched her swim, dance or play. During one difficult period, and as an immediate consequence of my illness, my daughter missed an audition that she had worked so hard for. I hate when my circumstances affect her so directly. She cried, hugged me and said ‘I’m only sad because I missed the audition Mummy, I’m not sad at you.’ Still looking after me even in her moment of upset. It can be a lot for a small person sometimes.
Regret
It’s been increasingly difficult not to look into the face of the fact that clinically and symptomatically, I was better before total thyroidectomy. It serves no purpose wishing to rewind time, so I bury these thoughts and feelings away as best I can, knowing that I had no choice but to take the plunge. I try to stay hopeful in smaller, simpler ways.
Symptoms
People often ask me to describe my symptoms, sometimes from a place of care and curiosity, other times it feels like I have to prove myself. The latter is usually followed up with a discrete dismissal, such as ‘have you tried meditation?’ When the energy is off, I don’t explain anymore. I let people think what they want.
In October 2024 I became tired of existing with my condition and people, I shut down again, isolated myself and lost touch with friends. The isolation somehow felt kinder than the company of the world.
Suffering and Survival (again)
At this time, I had become so poorly that I once again couldn’t work or do anything for weeks. After a particularly intense evening where I had to talk myself down from going to A&E, my partner (the next day) called the London endocrine surgeon and said we needed to see him. An appointment had been promised in May 2024 but that came and went with nothing but radio silence.
A week later I made the trip to London to see the consultant and felt very clear about what I needed. My drive and focus was to find out what was holding the genetic testing up – the testing that had been so convincingly suggested eight months prior.
I shared my symptoms, and the initial focus quickly became bowel movements and gut health, and a suggestion that my body wasn’t absorbing the thyroxine. There were so many reasons why I couldn’t make sense of this and the questions flowed. If this were the case, why are such relatively small changes in the TSH measure so catastrophic by way of the symptoms I experience? (Had they still not grasped the enormity?!) Why is my body more often than not functioning up the overactive end of things (numbers-wise) with a suppressed TSH and raised T4? (suggesting good absorption?) Can it be this simple? A course of antibiotics to clear the gut and some actimel…Can you imagine!?
A little lost and confused, I drew the conversation back to genetic testing and the previous theory that had been so readily explained to me, to the point that I could not leave it unchecked. But I was told that the tests could not happen with this team – due to money, funding and the wrong postcode area.
The appointment knocked my confidence a little – I felt like we were chasing an imaginary unicorn and that unicorn was my health. My partner viewed it more positively but I was just so dejected, less clear and trusting. I waited for my prescription in a tent by a portacabin—Glastonbury vibes, but way less fun.
Genetic testing
The day after, exhausted and symptomatic, I started my health admin to access tests that had been requested by a specialist.
I emailed various contacts and secretaries, researched and slowly pieced together information. The geneticist said the consultant could request the test and that contrary to what I had been told it should be done in the area of care and not the patient’s location. Another specialist said that the GP could request the tests, the GP said that they couldn’t. I went to and fro trying to make sense of it, trying so desperately to move the system to action, but each department suggested the other was responsible. I hoped that my labour was enough to move even a small cog forward. Then, a couple of days later a letter came for an appointment with an endocrinologist in the northwest.
Back to the Start
So there I was in a waiting room to see an endocrinologist in Oldham, the place where the trauma had begun, the place where I was dismissed, belittled and bullied at a time of great need. I kept in mind that all I needed from them was genetic testing, London were in charge of my care. Thankfully, the Endocrinologist was one I had not encountered before, and he drew my blood to send for testing on the spot. I could not believe how simple this was after all the waiting and work it had taken.
A Little Lighter
Contrary to my usual patterns, where winter months can feel harder, my symptoms lifted a little in November. Christmas was calm and I was afforded some small moments of hope where I connected to myself and the person I was.
Results
A month or so later in February 2025 I received my test results and found that I did not have the genetic condition, Thyroid Hormone Resistance Syndrome. I had done a little reading since the initial suggestion and had come to doubt this possibility, so the results came as no surprise. I was still unwell and still lacking in information and a care plan.
Click the links to read parts one, two, three, four, five, six, seven, eight nine, and ten of my journey.
Life Loves and Learning 