‘The fight is as hard as the illness’: battling with postpartum thyroiditis

Guest post by Jenny Allen

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JennyI am finding it gradually harder to write about my experience with postpartum thyroiditis, namely because I am no longer postpartum. It’s been over 22 months since I gave birth to my daughter, and my health has still not recovered. The information in my head – my ever-changing health journey, and the immense amount of research and learning I have done – is hard to translate into useful words.

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 rollercoastered towards what felt like a doomed end there was no one in the medical profession to manage my condition. My doctor summed it up when he said: “you diagnosed yourself really.”

The change in my health was drastic and sudden; I went from amazingly well and happy to quite the opposite in a very short period of time. I experienced sleeplessness and began to repeatedly check my own thoughts, like I was watching myself think. At my daughter’s injection appointment I cried and, without any checks or much discussion, I was prescribed anti-depressants.

Things got gradually worse. I lost over a stone in two weeks, had a period of four days and nights awake. I was shaking, pacing, and continued to incessantly watch my own thoughts. This was excruciating, I felt like my life was over. Days were defined by erratic mood swings, anger, and trying to hurt myself. I went to the doctors; the health visitor came; I attended a CBT session, and then the doctors again. They all seemed to be in agreement: postnatal mental health.

There were no physical checks carried out and, as the symptoms got worse, I ran into the road wanting to be hit. I was prescribed anti-psychotics and a plethora of drugs for my “depression and anxiety.” My daughter went from breast to bottle in five days flat.

I repeatedly expressed the feeling that this drastic change could not be caused by postnatal depression. But once this diagnosis had been given, it could not be moved; like a boulder, it hung around my neck.

A psychiatrist ordered a blood test in order to proceed with the course of drugs I’d been prescribed. These results showed that I had an overactive thyroid. I began to read into the subject and found out about postpartum thyroiditis, an illness which affects up to 10 per cent of women. At around three months post-birth, the thyroid becomes overactive. This can then return to normal or, in some cases, can become underactive.

I visited an endocrinologist, who quickly diagnosed me with Graves’ disease (an autoimmune disorder that causes hyperthyroidism), expressing that my neurological symptoms were for the psychiatrist to deal with and that having a baby was irrelevant to my diagnosis. I was continually ignored.

As is typical with postpartum thyroiditis, my thyroid function returned to normal briefly and then became underactive, the symptoms of which were equally as disturbing. I became incredibly tired and my days were infiltrated by depression and thoughts of dying.

I was placed on thyroxine but, due to ‘normal’ blood results a few weeks later, I was told to cease taking it and began to feel immediately unwell. This is when I sought help from an endocrinologist specialising in postpartum thyroiditis. I was promptly returned to thyroxine, and told that emotional disturbances are a well-known sequel to postpartum thyroiditis.

At 15 months postpartum I stopped taking the thyroxine and was signed off with normal thyroid function. I had also been seeing a cousellor, who was helping me to manage my anger, frustration and ‘grief’ for the loss of such precious time, but she also suggested I no longer required her support. A lovely work opportunity presented itself at just the right time, and I enjoyed bouncing into teaching again with a settled body and mind.

Just lately I have had a return of symptoms; symptoms I know so well. I have been back to the doctors and still my voice is not heard; still the immediate response is: “are you seeing a counsellor? You have, after all, been through a hard time.” The stressful journey created by others has now become my doubt and downfall. The fight should not be as hard as the illness. But for many women it is.

This experience has lead me to campaign and share my story, and through this I have met countless women with their own experiences of postpartum thyroiditis. Two key things that I feel are important and remain unacknowledged are that mental health
presentations are symptomatic of postpartum thyroiditis, and that treatment should be given in the context of postpartum thyroiditis – not in the context of an over or underactive thyroid.

This isn’t just about postpartum thyroiditis; it is about the care women receive post-birth. These ‘women’s things’ are significant, and impact on the lives not just of women but their partners and families.


You can find Jenny online and on Twitter

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