Part 9: My Battle with Thyroiditis and Graves Disease – the year (and a bit) after total thyroidectomy

*Trigger warning; please read with caution if you have experience with a thyroid condition or are having a total thyroidectomy. I acknowledge that my condition is particularly rare and unique. Please also go with care if you are dealing with illness and trauma.

Since surgery

I had the surgery on 5th October 2022 and since then it’s been hard, infinitely harder than it looks because it looks breathtakingly normal. It hits me often; how I look from the outside – how my life looks from the outside, and how vastly different this picture is from my reality. I sometimes wish the discomfort that ripped through me would manifest physically so that people could see it. This would alleviate me of the constant pressure to articulate and explain what I am experiencing so that I can get help – whether this be a medical diagnosis or love and emotional support. Much of the time, I don’t share what I experience like I used to, I stay quiet, but then the isolation sets in – and this is another kind of pain. I can see those close to me carrying this burden, too. How do they explain the unexplainable when they are experiencing it second-hand? My parents, my partner – they are collateral damage, with their own silent solitary struggles. All of us share an understanding, but we are too weak and broken to emotionally support one another like we did before. We do our best as a family, carrying the weight silently together.

What I knew before Total Thyroidectomy

In the lead-up to surgery, I knew that it was the right choice, but I also knew that I didn’t really have a choice. The other thing I knew, somewhere deep in my gut, was that surgery wasn’t going to be the easy fix – there would be more to come. This feeling largely came from the fact that my symptoms had changed – that I could no longer align them with my previous experiences of an under or overactive thyroid. I knew that I had thyroid disease and that the route of five years of illness was an unmanaged thyroid condition. And I knew that I had to take the option of surgery; to give it a chance, or live like I had been doing. But I wasn’t sure. I wasn’t sure about the resolve it would bring. I was envious and sometimes a little bit angry when those around me so quickly and eagerly expressed that having my thyroid removed was the answer. Expressed, so certainly that surgery would offer me the prospect of a healthier life. What they didn’t know was the journey I had been on for the last five years, inside this body, and the information this journey had given me that my rational brain just couldn’t ignore. It felt anything but as straightforward as it was anticipated for me.

The surgery

The surgery went well and was unremarkable really, in the scheme of everything its significance was irrelevant, I did not worry about dying, I just worried about being sick forever. I had to travel to London to have my thyroid removed and stayed in a Premier Inn the day after – they don’t show that scenario in the advert. The surgery brought comfort – it gave me a ‘serious’ medical situation that other people could relate to. I was sent flowers and cards, and I was offered words that were kind and understanding of what I was going through. I was ‘allowed’ to stop and it was a relief.

I wasn’t so bad for the first couple of months after surgery (until Christmas 2022,) I allowed myself to believe that this was my time. I did what I did best and tried to help myself. I saw a dietician who, in one meeting, unwound a lot of quackery that had been planted in my brain, at a time of trauma, by a nutritionist. The years of ‘deep-diving,’ ‘going on a health journey’ (and pretty long ones at that) had placed an additional pressure on me to ‘fix myself’ and at £300 a call, it was an expensive burden to carry. Desperation is a pretty lucrative market. I requested that the dietician follow up by writing down what we had discussed and specifically…

There is no scientific supported evidence around a specific diet or excluding food with the aim to cure thyroiditis.

Correcting thyroid hormone levels

Without your thyroid gland, your body can’t make thyroid hormones so I now take these in tablet form daily. Thyroid hormone is necessary to stay alive.

Post-surgery, the patient is put on an average dose of thyroxine, but the correct dose is very specific to the individual. Each dose adjustment takes a minimum of six weeks to fully realise (I think it takes longer for me.)

As I got used to my new post-surgery thyroid medication, I became extremely unwell and from January to April 2023 was back in the territory of keeping myself alive. Plagued with repetitive and intrusive thoughts of death and constantly checking on whether I have thought about it or not, pacing, sweating, utterly exhausted but not being able to sleep – shit these words look so minimal on the page – this absolute torture is inarticulatable. I can say with absolute unwavering certainty that as well as a plethora of physical discomforts, incorrect thyroid levels cause madness, personality changes, and erraticness and remove the person totally and utterly from self.

So we checked bloods (initially suppressed TSH explaining my symptoms,) adjusted the dose and so on until July, when I felt like I started to experience a bit of relief. However, I was still dragging myself through life, still losing friends, still sitting in a pressure cooker in my relationship, still feeling like a waste of space mum.

The GP I’ve been waiting for

One morning, about 3am – I was unwell, excruciatingly unwell and I felt alone, I didn’t know where to go or what to do. I talked myself down from going to A&E (last time I took that root I ended up with a handful of anti-psychotic medication) and cut myself a deal to call the doctors in the morning and make an appointment to see any available GP that day. I did and it’s been a game-changer. My new GP listens, understands, empathises and all without me having to say very much at all. My blood tests are sorted, she says things like ‘when can I see you next,’ she follows up, is proactive and never undermines me. If I had this GP and my current consultant from the onset of postpartum thyroiditis, I would be in a whole different place right now.

Work

I went back to work about March time on an extremely steady phased return, with the option to work from home and a rare understanding. I have delivered things that I look back on after and think ‘who did that?!’ because I don’t know how I did it and I can’t remember. I get myself through each day with a sheer relentlessness that makes me think of those hell-bent athletes. I can work because I have extremely supportive managers, who recognise that my brain still thinks creatively and there’s a person of value under these layers of sickness and trauma…somewhere. Work gives me a small space where I can sometimes, almost feel like myself. It’s my social, it’s where I see people and connect with the world. It’s the only thing I do. It keeps me from falling into a deep dark depression. And most of the people at work – they don’t have a clue, I look so normal most days, even smiley. It helps me to recognise that despite everything, I have a deep well of relentless positivity nestled somewhere inside me. But on some days it makes me feel so alone and unseen, maybe even angry. That these people get to enjoy the ‘me’ that even I am unable to access, that light and comfortable facade – I envy them of that.

What’s next?

So it’s all become a bit blurry, I haven’t had the capacity to write as I go and it’s probably a good thing because the healthcare admin is lengthy and dull (and deeply distressing.) The top and bottom of it is; my blood results have not settled to a degree that is to be expected when there is no thyroid. I control the medication – these levels should stabalise but at present, the consultant has noted some irregularity. There was mention of this as far back as April, with instruction for tests and scans to be arranged to look for ectopic thyroid tissue (a bit of thyroid left in there.) So I have been up and down to London about three times. Once, I had already boarded the train when tests were cancelled, another time the test couldn’t go ahead because I had to cease taking thyroxine (remember when I said I needed this medication to stay alive.) I’ve had scans with contrast and then had to sit on a stuffed train from London to home. It’s been hard, each journey has its details and nuances of delayed trains, rude receptionists and extra insignificant hurdles which when amplified by the context can feel quite significant.

Friends

Somewhere between all this and knowing I was losing touch with friends. I made a promise to myself and found some glimmers of space and time with the people I love. What they have done and continue to do for me is life-saving. I bathed in the odd peaceful hour of remembering who I was and how life could perhaps be again. These moments carry me through.

Graves scare

I hadn’t seen my regular consultant at my last two appointments and I missed him. I was always with the exceptionally wonderful and consistent registrar, which was a reassurance. At one particular appointment in September, we were joined by the professor who heads up the team. It was clear why the team were so exceptional, he was kind and intelligent and curious, but he did not know me or my story like the others. My sister-in-law had met me at the appointment but I had said she needn’t come in. I hadn’t been in a room without an advocate for years and I chastised myself for this decision afterwards. So I explained that the last time I traveled, the scan could not be done and new arrangements were made. It was discussed that I would come back for the scan but would have to take another medication to get the necessary results *(insert another story here) – we still needed to rule out (or in if I am being more hopeful) ectopic tissue but then…I was asked about my symptoms, there felt like a change in direction and I was told, quite plainly that; we were dealing with Graves Disease (were we?) and that in rare cases you can remove the thyroid but Graves Disease is still present because it is an autoimmune condition that attacks the thyroid but it can also attack/reside in the skin on the front of the shins, the muscles in the tops of the arms and legs and behind the eyes.’ Now, I am fairly certain this is what was said, I question this, I didn’t have an advocate’s ears with me and was rendered unable to think or to ask meaningful questions to help me to clarify. All I heard was ‘this is you life forever.’ and all I thought was ‘this is going to kill me.’ Silent tears rolled down my face, I asked a few scatty, likely useless questions and found myself suddenly in the corridor feeling like I had been given a death sentence.

My frame of mind has changed since this point. I felt engulfed in a permenance that I have kept at bay until now and I lost hope. For the first time in six years there was not a morsel of hope.

The weeks following that, I reached new depths of dark that I didn’t know were possible, I tried, I carried on dragging myself – for my child, for my future but I was ready to find a way out. To give up. I called in to work sick (The GP had been suggesting it for some time) and I found myself in limbo. Trapped in my own body and life.

Progress

The scan date came through 3 days before I was meant to be in London. I was unwell, struggling and couldn’t afford a train from Manchester at such late notice. I called the hospital and asked about how the drug I needed to take before the test would be administered and they said; ‘your GP should have instruction from your consultant to administer it.’ This hadn’t happened, I canceled the test and lost the will to phone, chase, and fight. I had an appointment booked in to see the consultant on the 4th of December, I would wait, take my mum, and explain that this situation could not go on.

When the appointment came I had been off work sick for a week, I was unwell, I had run out of energy and I had no expectations. None. We sat on the train and did what we do best, wrote down questions, checked what we needed, and were ready to consult. To ‘get it right.’

My regular consultant was there, we went from after surgery, we reviewed some results that I had not yet seen. He asked questions (including how I have managed to look after a little one – which is NEVER acknowledged) and got a hold of everything. He was giving it some time, he needed to do some research, he would find an endocrinologist in the north to order tests so I wouldn’t have to travel so far. He understood the gravitas, looked at my symptoms log, and said ‘this is not a life.’ He reassured me that he wasn’t going anywhere. He told me the journey would perhaps be a long one, whilst we find out and explore.

There is a 9mm thyroid remnant under my chin – though it’s doubtful this could be responsible for such catastrophic damage so more tests and scans are forthcoming to check for further thyroid cells. There was more, some detail and lots discussed but it’s only the day after the visit and I am in bed, drained, riddled with symptoms and feeling lighter for having written this down. So this is where we are for now.

Explain this

There’s the words I have available to me to describe the situation and then there’s the situation. There’s no common knowledge, no shared understanding, and no recognition of this journey. It doesn’t exist in people’s field of vision, in what they have experienced or what they know to be true. I can’t say what I feel its equivalent is without feeling shame for thinking it…it is life or death. Someone told me to ‘be positive, do some possitive affirmations,’ when I told them I was feeling unwell the other week – can I ask you to apply that advice to any other health condition or disability? Does it feel comfortable? No, it does not.

Click the links to read parts one, two, three, four, five, six, seven, and eight of my currently 6-year-long battle.