Niave

It’s been nearly four years that I have been persistently plagued by unforgiving, often torturous symptoms and nearly four years that I have had to work relentlessly to get help. I now realise that I signed off my last post a little naively; relieved to have an expert onside. Unfortunately, the battle has continued and the isolation it bleeds is stark.

I have felt the fight in me relent. Perhaps this is because I have found some support or perhaps it’s because I have become accustomed to systematic gaslighting – likely a bit of both.

A global pandemic

As the reality of the pandemic kicked in, the world stopped and slowed – it was forced to go at my poorly pace, forced to find alternative ways to work, forced to stay in instead of go out and forced to re-assess. I momentarily felt less alone. What had become normal for me was now normal for the world.

Having been abandoned by multiple healthcare professionals over a series of years, I couldn’t clap the NHS. Like a small child, I hid with my fingers pressed firmly in my ears, scared and understanding of the judgment I would face from the neighbours.

I thanked those I knew individually.

Late night calls

One night, gone 10pm I received a missed call from a private number. I ignored it but then it rang again and again and on the fourth time, concerned it was something important, I answered. It was a consultant endocrinologist (at 10pm!) calling to lambast me for what he understood to be a missed appointment earlier that day.

Full of fear, I corrected him. I had in fact canceled the appointment months prior, after finally finding the help I needed.

I was horrified that, this man, who had done nothing to date to help me, who had in fact previously hindered me, suddenly found the time to tap so unapologetically into my home and my trauma. I didn’t sleep that night.

(*The treatment plan)

I reassured myself by returning my focus to the support that I did have. As instructed, I took 25mcg of thyroxine for six weeks and then took the relevant blood tests to check my thyroid function. The thinking was that one side of my thyroid was ‘doing too much’ to compensate for the other which was perhaps not functioning at all. By taking thyroxine the consultant was hopeful that my thyroid could, slow down and be supported to function normally. The blood test results returned, only just in the normal range, very close to being overactive. In ‘normal’ circumstances an increase in dose would likely have resulted in me becoming overactive. However, my consultant reviewed the clinical information and made recommendations to increase the dose as planned. I was nervous but I trusted him.

Six weeks later, after taking an increased dose of 50mcg of thyroxine, I began to experience far fewer symptoms, my bloods were reviewed and the results showed a TSH (Thyroid Stimulating Hormone) well in the normal range, contrary to textbook expectations. Was the plan working?

This was groundbreaking, I felt enormously reassured and my trust swelled – medicine in itself.

(*for those who might be interested)

Healthcare admin

For this time period, I was the intermediary, passing results and information from GP to the consultant.

A seemingly simple admin task, laced with judgment and short tones quickly became a reminder of the GP surgery’s unapologetic lack of care for me. To them, I was nothing but a know it all, mithering woman.

I wished that they would communicate directly with my consultant for their sake and mine – so I asked if that could happen.

‘Well, to be honest it would be much quicker if you did it.’

I didn’t want speed I wanted care, I wanted my life to be worth an email or two. I wanted someone with me, in my corner, moving things along.

Taking on work

During this small window of feeling slightly improved and with a little clinical evidence to back up my relief in symptoms I once again signed up for a two-day-a-week teaching job. I desperately craved a sense of normality, of being me. My family looked on powerless – they wanted me to stop and look after myself, but this was a part of that.

Explosion of symptoms

A month or so later the symptoms exploded back into my life, I was on the floor. They had changed a little these last few months. No less debilitating but what I once experienced as distinctly over or underactive thyroid symptoms, now just felt like a muddy mess of both. They were new but no less excruciating, like a hangover ravishing every cell of my body, combined with indescribable exhaustion, yet hyper energy all at the same time. At this point, I had been sick for just short of 4 years.

The consultant had instructed my GP to carry out blood tests when I was symptomatic, to gather evidence and information. I called the surgery to follow this through.

The answer was no. We are not doing blood tests. I asked where I could access this service and was explicitly told I couldn’t. I wasn’t told why – just asked a question.

‘Why’s he [the consultant] said we have to do it- if he wants the blood tests he needs to sort it himself.’ (He was based in a city hours from me)

If I didn’t matter before a pandemic I wasn’t going to matter now.

Private blood tests

I got a quote for private blood tests to be carried out immediately, knowing that they probably wouldn’t show much but wanting the consultant to have what he needed to help me. I was quoted £350 and so I got my credit card out – I would think about the money later.

Over six weeks later I was billed for £649 and so began another healthcare admin task. I finally received the correct bill for £350 and ordered an online test from medi-checks for the cupboard, which has been my go-to ever since.

Looking for a new GP

I did what I had become accustomed to, researched and problem solved to find a new surgery or a GP that perhaps had a specialist interest in thyroid disease. There were none. A well-known GP recommended a doctor describing him as ‘the best in Oldham,’ unfortunately, I had already had a particularly bullyish experience with the GP he suggested, writing this letter after my last visit to him. He then offered to support me with a move to a ‘very good surgery’ that was out of my area. I followed up on his emails but was met with radio silence. I was stuck.

Getting mental health support

Having recognised the gravity of the situation that I had been dealing with for the last few years, I tried multiple times to access mental health support through the NHS and always met dead ends. So I found a counselor, at my own expense, who has also been a necessary advocate. With debilitating thyroid symptoms that prevented me from working it was becoming increasingly difficult to continue to pay for this support, so I applied for it to be funded by the NHS. The request was initially dismissed due to a lack of information and evidence provided by my GP (no surprise.) Once again, it was up to me to tell the story, demonstrate a case, get buy-in (all whilst fundamentally unwell) and then wait for some people in suits around a table to decide if I, a person they had never met, needed this support or not. At first, they said no, and then they recommended an alternative service and a new relationship. I responded with a letter, expressing my wish to pull out of the six-month process, which was continually re-traumatizing me. A kind case worker took a risk and expressed her strong feelings that they would say yes at the next meeting if I could just provide one more letter. I did and it was agreed, I got the support I needed.

The impacts of medical gaslighting

My partner has read these posts and expressed that ‘they only just scratch the surface.’ That’s because of the subtle complexity of the situation but also because I can’t speak honestly about where I have been at in terms of clinging on for dear life. This is because of fear, fear of not getting what I need, fear of being alone without help and fear of being branded a make believer – even now I have a consultant onside, who acknowledges that I have thyroid disease. I have been subconsciously convinced that my reality doesn’t exist – that I am just hysterical. Every time the GP says ‘aw’ in response to me expressing that I cannot get out of bed, care for my little one, or work, I am pushed further back into my box where my worth is nothing.

This whole experience has inhibited me from getting support from any other avenues, for example, Service User or support groups, even friends, and family because I don’t ever feel vallied or worthy of help.

Next steps

A November 2021 thyroid scan showed that my goiter was now diffuse on both sides, previously it had been on the right side only. I reviewed the results with my GP who said ‘well it all depends on how much it’s impacting your life really.’ At that moment I decided I needed out of that toxic relationship. After three years of telling her (and others), I was debilitated and surviving they should have understood the impact by now.

I emailed the scan and additional results to my consultant and over a series of virtual meetings, explained my symptoms. In partnership, it was decided that a total thyroidectomy would offer me a better quality of life. I was added to a list and waited.

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