I am going to try and just hash this out because quite frankly I’m bored of thyroids, I’m bored of strategising and I’m bored of battling. It’s exhausting. But there’s something in me that needs to get this story down, for me and for that handful of people who read and relate to the isolation of ill health in the context of a textbook system.
The good news or the bad news?
I have previously written about my battle with Postpartum Thyroiditis and after that my suspected diagnosis of Graves Disease. I left my last blog post with a renewed sense of faith, awaiting the results of a thyroid scan and blood tests, which the endocrinologist seemed (more than) confident (all but certain) would confirm Graves Disease. The good news – they did not. The bad news, the problem solving ended and there I was again with no answers and a referral for a psychiatric assessment at the cost of £375.
The early bird catches the worm
So there I was. twenty minutes early for my next endocrinologist appointment, with thyroid scan and blood results in hand and a confidence that I had not felt before. This was a follow-up appointment with a woman who had been so considered, thoughtful and supportive, though the test results were once again surprising I felt in the hands of a problem solver.
This was unfortunately not to be the case. The endocrinologist called my name, tapping her watch and looking a little confused. We (myself and my advocate, my mum) were ushered abruptly into the (private) consultation with the words ‘right we will have to be quick, we only have twenty minutes.’ I was informed I was late. I had made it through two reception desks, called several times beforehand and received no written confirmation of the appointment time. I was not late, there had been an admin error. I looked at the clock, I looked at the endocrinologist and I shoved that problem away.
I needed to make the most of this consultation, as always I felt like there was a lot riding on it.
I don’t mind admitting that this hurried introduction made me feel anxious, I went from relaxed and reassured to heightened and on-guard within seconds. There is a two-year journey behind my response to unkind consultations but, as always, we were dealing with a snapshot in time, a now twenty min appointment window where I am judged and scrutinised without a full understanding of ‘my story.’ This story.
I passed over the results, it was clear quite quickly that they had not confirmed a diagnosis and that there was little place left to go. My thyroid scan showed a diffuse goiter and nodules, with a report of ‘acute thyroiditis’ but the blood results did not confirm this, or Graves Disease – they were normal.
Explaining my thyroid-related symptoms
As always at these appointments, I wasn’t asked how I was feeling now, today, at this present time. As always, I began to shoehorn my symptoms into the consultation. They had not completely settled, I still felt like my body was cycling through something. I was still managing my health, If I had a busy week (and in the context of a healthy 36-year-old not too busy) or did too much I could feel it. After one particularly hectic week and in the run-up to my period I faced a terrible fluctuation in mood and as always this coincided with a plethora of other physical symptoms.
On this particular occasion, before my period, I felt like my life was over, like I could no longer go on ‘like this,’ unwell and alone. It first appeared in the form of anger and frustration, a few inappropriate interactions with family members later and the despair crept in, I couldn’t feel past the weight of my sadness. This desperate episode resulted in my Dad restraining me through fear of me harming myself and my Mum calling the emergency services. Not something she would ever do lightly. I said some heartbreaking things. Within twenty-four hours I had resumed to a more settled state if not reeling from the aftermath, full of regret and guilt. It was my illness not me but the two were hard to separate.
For a day, or even a morning and always before my period throughout the time I had Postpartum Thyroiditis periods were always difficult, some more extreme than others. Again this cycle was a recognisable one.
So I explained my symptoms and stupidly (yes it was MY error, I would chastise myself for this later) begun by explaining the impact of this most recent mood-related episode, a very small but significant part of my overall symptoms. For context, I had experienced three of these episodes, in a period of nine months. For context, I felt unwell every day for this period of time, riddled with a pick and mix of additional very physical symptoms.
I had done it now. I continued, attempting to explain how I felt, today, at this moment, to describe my other symptoms but the consultant became fixated on my mental health. I felt trapped.
Due to the admin error, we had not started well and now we were quickly screeching around a turn for the worse. A turn that instilled fear in me – the fear of being ill and alone. I became anxious, it had been a shocking turn around but my sirens alerted battle stations, I could see it in my mum’s eyes, she felt it too.
My worry was used as ‘evidence’ and coupled with my pre-menstrual moods, though the endocrinologist had expressed confusion at my scan and blood results and not listened to any other descriptors of my current health picture I was referred to a psychiatrist (at a personal expense of £375.)
I let the consultant talk, I sat still and quiet and listened. Here it was, the outcome, the plan we had so confidently talked about in my previous appointment. With no further discussion about my experiences of recurring and recognisable symptoms from a diagnosed thyroid problem – Postpartum Thyroiditis, I had instruction.
The first was a referral to a specialist psychiatrist to re-evaluate my mental state, in her opinion my mood-related symptoms could not be thyroid related. (They are, I know they are – I have always been certain of this and even more certain as I write from a perspective of good health, with a sense of reflection.)
Given my ultrasound abnormalities and the fact that I had neck pain (I had protested with ‘but why does my neck hurt?’) I was referred to a thyroid surgeon to see if ‘thyroid surgery may help with my neck pain and possibly other symptoms.’
‘Possibly other symptoms,’ – an acknowledgment of uncertainty? Who knows?
I was described as being ‘distressed in clinic today.’ This to me and people who know me is understandable. In the context of my postpartum journey clinic was distressing.
Do you want your thyroid out?
With the consultation drawing to a close I was asked a question which I have often reflected on. This was ‘what is your feeling, do you want your thyroid out?’ To which my answer was a confused and very committed ‘no, no one in their right mind wants their thyroid out, that is a decision I would never take lightly or in the current circumstances, where I am not reassured enough that listening, problem-solving and understanding has taken place.’
I left the consultation with the understanding that having neck pain and thyroid nodules would provide grounds for removal, which didn’t seem appropriate given that I had also been referred for a psychiatric assessment!?
I stepped out of the room and gasped like I had been holding my breath underwater, desperate for air. I cried and as the realisation kicked in I first chastised myself for failing, for failing to explain myself and for failing to get what I needed. I once again felt isolated and alone. My mum reassured me that I had done my best given the circumstances.
Unanswered thyroid questions
As emotions settled and days passed from the appointment I realised discrepancies, I had important and unanswered questions.
In my initial consultation, I was explicitly told I had thyroid eye disease – did I have thyroid eye disease or not? How long should I have a diffuse goiter following an episode of Postpartum Thyroiditis, should I expect this to settle? Will this be checked again?
In my first letter, it had been acknowledged that symptom fluctuation had always coincided with a dysthyroid state was this no longer the case? I, of course, knew it was.
Then the letter came, the black and white ball and chain, the conversation that is always going on around me and about me but never involves me. These letters are everything, I will explain how the words distract from getting answers.
This letter formed part of the referral to a psychiatrist and it read:
‘Jenny is fixated that all her symptoms are related to her thyroid.’
The word fixated is very emotive, it is already an opinion formed, it carries connotations that guide the reader, the reader that is charged with making an assessment of me. Another individual that will enter my life for an hour of this now two-year journey and ‘come to a conclusion.’ There have been many rooms I have entered where the consultant has already ‘known’ what the issue is. It didn’t help that my medical notes were laced with mentions of mental health, even at points when this diagnosis was proven to be incorrect. (I have campaigned to have these amended, to truly reflect my journey but to no avail).
There was also this:
‘She feels very frustrated and is desperate for answers to her terrible symptoms which seem to specifically relate to mental health.’
Ok, the first bit is accurate but the second is simply false. My symptoms were not specifically related to mental health, I had just (once again) not been listened to.
A few days after the appointment, the dust settled and I connected with my confidence, gradually realising I had choices to make. I would not pay £375 to see a psychiatrist, it was not necessary – if we are talking about mental health this money would have been better spent on a holiday! (If, of course, we had it) I did not want to involve another stranger in this two-year-long journey for a limited time of one hour. I was seeing an incredible therapist and had an upcoming appointment with an NHS endocrinologist (I had remained in the system) who had a background in psychiatry and had connected with me via telephone for some detail (very reassuring.) If he deemed an assessment necessary I would follow through. I saw my doctor to get buy-in from a professional, she agreed – this was my back up. Back up was always required.
Moving (wading through treacle) forwards
So there I was, my health had again, become somewhat better for which I was very grateful but I still had no answers and I was not yet feeling 100% well. I needed reassurances before I could even begin to consider such things as future pregnancies. Having a second child was and still is off the table and though it will probably remain so, I want this decision to be ours rather than in the hands of a consultant with only one piece of the jigsaw.
I needed a relationship, I was tired of dipping in and out of offices and being judged.
I wanted someone to know me and understand the journey I had been on – this was significant in terms of understanding the care I required.
At one point in the consultation, my Mum asked the endocrinologist (understandably looking for reassurances) ‘In your experience have you known women experience mood-related symptoms as my daughter describes.’ Her answer was ‘no, never.’
I have talked about this with my Mum since and we (she has been my rock) won’t do this again. What we will do is say that this is entirely possible – these are MY experiences in MY body. MY ‘mood-related symptoms,’ are all thyroid related, I say this with confidence from a position of good health.
I was not fixated but I was and still am convinced.