Part 2 of My On-going Battle with Postpartum Thyroiditis, Suspected Graves and Thyroid Eye Disease: Nearly two years after giving birth and I continued the battle to be heard.

It’s Complicated

I’m finding it gradually harder to write about my experience with Postpartum Thyroiditis, namely because I am no longer postpartum. It’s been over twenty-four months since I gave birth to my daughter, and my health has still not fully recovered. The weight of the information in my head, my exhaustion from my ever-changing health journey, and the immense amount of research and learning I have had to do is hard to translate into useful words.

Postpartum Thyroiditis

I have previously written about my difficult experience when three months following the birth of my daughter I became ill with Postpartum Thyroiditis. This is a condition where your thyroid becomes overactive and then underactive in the space of a few months and, if you’re lucky, returns to normal by twelve months postpartum (or so the textbook says.) As my thyroid exploded up and then down, there was no one in the medical profession available to manage my condition, or even to help me to manage my condition.

As my doctor said when I saw him at one appointment, ‘you diagnosed yourself really.’

Good health

In December 2018, a year and a half postpartum, I finally felt physically and mentally well and hopeful that my battle with Postpartum Thyroiditis was behind me. The last remnants of symptoms had cleared up, my hair had stopped falling out, the ringing in my ears had ceased and my sex drive had returned. Christmas came, I had relaxed drinks with family and took a deep breath; I finally had some space to compute the last year or so and hopefully move forward. Relief washed over me. I accepted half a term of work as a supply teacher, for four days a week, at a kind and friendly local school. I enjoyed working, thinking and communicating with adults and I looked forward to quality time with my daughter for the remainder of the week. I was happy.

For the first time in 15 months, I welcomed a feeling of health that I had forgotten existed.

Returning symptoms

Towards the end of January 2019, I noticed a return of recognisable symptoms, I was exhausted and ached all over. I made a number of predictable excuses; ‘It’s because you’re working – it’s hard,’ ‘You have a cold, you’re bound to feel tired’ and the classic ‘It’s your period.’ I developed an excessive thirst and constant dry mouth, a ringing in my ears crept in over the days, my hair started falling out by the handful, and small tasks became a struggle. I went to my doctor who carried out a thyroid function test – TSH (Thyroid Stimulating Hormone), the results of which were within normal range. ‘I can’t see that there’s anything wrong here,’ said the doctor and no further investigation was undertaken. Here we go again…

A recognisable state

Following this appointment and the decision to take no further action, my symptoms intensified. I had heart palpitations, was unable to sleep for hours on end, became hot, sweaty, erratic and jittery. I felt very strange, as though my eyes weren’t communicating with my brain, like I was detached from reality and I was also losing weight very quickly. Though not as intense as before, I recognised these symptoms all too well. I had experienced them during the overactive phase of Postpartum Thyroiditis.

By March I found myself unable to work and dramatically reduced my expectations to ‘just getting through the day.’

Mood

During this time, every now and again I would experience what I have come to describe as ‘mood seizures.’ With no reasonable relation to context, I would suddenly feel so angry and full of hatred for myself, for being alive, and this bubbling frustration would overwhelm me. So much so that I would end up letting it all out by screaming and hitting myself. There is nothing about these ‘mood seizures’ that I can describe as emotion, they felt deeply physical and were always pre-empted by a flare-up of other symptoms.

Blindsided by ‘mental health’

Though the symptoms related to mood were only a small (but very serious) part of my overall health they became a point of fixation for those I turned to for help. Since the initial and incorrect diagnosis of ‘postnatal anxiety and depression,’ before Postpartum Thyroiditis had been determined, the medical professionals continued to be blindsided by the label of ‘mental health.’ This rendered them unable to hear what I knew about my own body and prevented investigation into any other avenues. Honestly speaking, this has been the biggest battle of all.

Searching for answers

Once again in desperation, I returned to another familiar state – scrabbling, alone, for answers. Did I have an iron or vitamin B12 deficiency? Had I taken too much magnesium supplement? Irrational to me now, but no one else was problem-solving on my behalf and I knew there was something fundamentally wrong with my body, so I felt compelled to dig for answers myself. I visited the doctor several more times over the next couple of months, my TSH was still (just) in range and had moved towards the overactive end of the scale. Given that I had experienced my symptoms before and my blood results were indicating a change, I felt certain that my thyroid function was not well.

I was explicitly told that it could not be my thyroid, that I was fixating on numbers and that It might be helpful to see a counsellor – ‘you have been through a stressful time after all.’ (At their own making, I had.) I questioned myself briefly but quickly returned to my own sense of self and my confidence that I knew there was something physically wrong and so did those around me.

I can even recall, one evening very calmly turning to my partner and saying: ‘There is something fundamentally wrong with the way in which my body is functioning, if it’s more sinister than we hope, I need you to tell people I asked for help, I need you to raise awareness.’

Helping myself

Beta-blockers had been prescribed to me before for the overactive phase of Postpartum Thyroiditis. My symptoms continued to intensify and as they were so familiar I requested beta-blockers in a hope that they would offer some relief. As my thyroid results were changed but ‘normal’ and further thyroid investigation was continually denied I had little choice but to request this treatment under the guise of anxiety. I would pay for this at a later date, as my records were already white-washed with the words ‘mental health,’ but I was desperate and my priority was my immediate health.

Lube

I started to develop painful spots on my hands which ached with coldness, a dizzy light-headed feeling and my eyes pulsed feeling like they had bits of grit or glass stuck in them, each new symptom was treated as a new problem to be solved in isolation. This is when I used some of my personal savings to see a private GP. I prepped for the meeting, I made notes and strategised I even chose a seemingly sensible outfit to wear. In order to paint a clear picture I provided the fullest of detail of my medical history, including that I was currently experiencing vaginal dryness and had no sex drive. All my greatest intimacies were laid bare at a doctor’s desk once again.

The response was numbing. Just as my NHS doctor had, I was instructed to carry on taking iron supplements and that I could also buy some KY Jelly from Boots, ‘to help with more comfortable intercourse’

I reflected on this consultation and became gradually more frustrated that my care plan had been reduced to (of all things) lube! As the Doctor directed me toward my purchase I felt belittled, unheard and assumed intellectually inferior. I began to wonder if I had even uttered the words, ‘I am too unwell to work,’ as well as all my other symptoms, including that ‘I have no sex drive.’ Fucking lube! Listening, once again was clearly absent.

Neck pain

The symptoms ebbed and flowed, changed and cycled; on some days I could manage and on others, I could not. I noticed over the months a pain in my neck, a dull ache when I talked, that sometimes stopped me in my tracks when reading a story to my daughter. A tickly cough came, with no other symptoms of a cold and my voice would crack and break. The pain sometimes migrated to my ear and was always present.

Around this time I strongly suspected that my thyroid was overactive but my requests had become tiresome and my TSH was no longer monitored.

Life without a diagnosis

Around the same time, I began to have serious worries; I was not working and we had bills pay. As a consequence of Postpartum Thyroiditis I was not in permanent employment and without a diagnosis I felt alone and concerned about my future health. After nearly two years of being right about my own body, I still felt unheard, dismissed and was desperate for someone to listen.

My mental health

I recognised the pressure the situation was putting on my mental health so I self-referred to the local NHS mental health service who expressed a belief that their support wasn’t appropriate for my needs. This team referred me to the hospital mental health team, who supported those with long-term illness. My referral was promptly declined. Without a diagnosis, it seemed there wasn’t any mental health support available to me. I was directed to my GP to begin the loop again. I tried to make light of this irony after being so quickly and consistently labelled with mental health problems for the past eighteen months.

I sought help for an understandable anxiety manifested by a difficult situation, especially given that I hadn’t yet had the space to compute the mess that was my experience of Postpartum Thyroiditis. This aspect of my mental health was very different to those ‘mood seizures’ I experienced (though I am sure they exacerbated one another).

That said, the ‘mood seizures’ very clearly and demonstrably accompanied a multitude of other symptoms that were exactly like those I had experienced with an overactive thyroid. At no other point in my life have I experienced such violent and overwhelming feelings of distress and panic. But that didn’t seem to help doctors with a diagnosis. So many times on this journey I have had to repeat myself saying ‘the words I use to describe these mood swings sound like anxiety, but these are the only words I have, to hand, to express what they feel like, but what I know and feel is that I can almost pull the two apart in my head.’ As the patient, surely taking my word for it should count for something?

Relationships

Those around me felt the pressure, my partner was working full-time, looking after me, the house and a two-year-old. Through all this, he continued to reassure me – ‘this is your thyroid, this is not you.’ I argued with my mum, who wanted nothing but to solve it for me. She battled beside me. My friendships suffered, the detail had become so much that I just couldn’t keep them all in the loop.

I have nothing but gratitude for my family’s belief in me, several doctors and endocrinologists had told me there was nothing wrong, but they knew me and also had the same instincts I did about my health.’

At this stage, I felt like I had fallen down every crack in the system and I had walked down every available avenue, but there were no answers. While feeling so exhausted and discouraged, I still could not accept being so unwell without a confirmed diagnosis as my reality, until I knew someone had really listened and done their best on my behalf.

A visit to the endocrinologist

Over the next couple of months, my symptoms settled a little but they didn’t go away. I returned to work for a day or two a week and tried to listen to my body as much as I could so I could manage how I felt and what I needed. After doing some more research we then committed to seeing a fourth endocrinologist. Attending appointments no longer made me feel hopeful and confident that someone could help. My previous experience dictated that I was instinctively full of nerves and scepticism, which was disheartening but ultimately necessary to manage our expectations and avoid disappointment.

A suspected diagnosis

My appointment with the endocrinologist arrived. She was caring, listened attentively and with confidence and reassurance provided me with a suspected diagnosis of Graves and Thyroid Eye Disease, which she seemed certain would be confirmed by further scans and blood tests (thyroid stimulating hormone receptor antibodies (TRAb)).

Findings in clinic have suggested a diffuse goitre and evidence of thyroid eye disease’

It was suggested that this pre-existing (unknown) and underlying condition is why my presentation of Postpartum Thyroiditis had been so strong. She also expressed that this experience must have been ‘traumatic’ for me, an affirmation that at last acknowledged the enormity of what I had been through. It was thought that I had returned to work too soon and I was instructed to manage my stress levels in order to support my body to recover. We even discussed the importance of nutrition, something that had been so quickly dismissed on discovery of previous iron and vitamin D deficiencies.

Symptom fluctuation has always coincided with a dysthyroid state.’

This endocrinologist endorsed ordering private blood tests for when acute symptoms were experienced. This was something I had done once or twice but was then used as ‘evidence’ to compound my mental health problems.

Knowing that there was a real possible medical explanation for the ongoing symptoms was critical. If the diagnosis was correct and I continued to have fluctuations in symptoms a treatment plan could be devised. At last, I felt as though I was legitimately under someone’s care.

Relief

Following this appointment, I felt an incredible sense of relief. Finally, someone was willing to listen and treat me as an individual. A body, that might not always fit the textbook, but as I had always maintained a body that was actually giving lots of signs of being really unwell. I made the relevant appointments with my GP and waited, with a sense of confidence for the test results. This time, I felt sure that even if the diagnosis was not confirmed there would be someone there to help…

What if?

As part of this journey, I am sometimes troubled by ‘what ifs?’ ‘What if I am poorly and never get a diagnosis?’ ‘What if the endocrinologist dismisses’ my concerns?’ ‘What if my partner stops believing in me?’ ‘What if mum and dad move away?’ ‘what if we can’t pay for the help we need?’ I can usually reassure myself and put these worries to bed, because that, in the most part, is all they are. I write my experiences down because what if, these worries are other people’s reality?

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