Part 1 of My Battle with Postpartum Thyroiditis: Three months following the birth of my daughter I become extremely ill with postpartum thyroiditis and after a misdiagnosis of psychosis it was impossible to find support.

Up to 10% of women experience Postpartum Thyroiditis however, due to lack of knowledge and understanding accessing treatment and care was nearly impossible.

‘Postpartum Thyroiditis is probably the most common Thyroid disease now seen in the UK.’ (British Thyroid Foundation)

My story

I call it a battle with postpartum thyroiditis because that is what it was. To find someone to listen, to understand, or even to know about the symptoms and nature of the condition was impossible.

I thought I was going to die and truly believe that I am here now only because I have three incredibly supportive family members.

The arrival of our daughter

I gave birth to a beautiful baby girl on 7 July 2017.

I was happy and my life felt complete.

I slipped into the role of mum far better than I thought I would.

I overcame the initial hurdles of breastfeeding and was overwhelmed by the joy this brought. We spent three months, walking, talking, reading, doing yoga and meeting friends.

Sleepless nights

The only thing I found frustrating was that, even though my daughter slept through, every now and again I was wide awake for most of the night.

I began to get nervous about going to bed and could think of nothing but sleep. I made a doctor’s appointment and there was a suggestion of postnatal depression. I was referred to mental health services.

Things got worse, I couldn’t switch my mind off, every second of the day I would be observing my own thoughts, trapped in my own head. I was constantly asking myself ‘have you switched off? Are you thinking about sleeping? Are you depressed? Can people see you are depressed? Do people think you haven’t bonded with your baby? What are your thinking now?’ The loops went on and on. I felt wired, trapped and on high alert.

I shared these symptoms at my daughter’s injection appointment, by which point I was extremely desperate and upset. The Doctor prescribed sertraline for ‘my anxiety’ and sent me on my way.

I have always been proactive with my mental health and so I attended a meditation class, organised Cognitive Behavioural Therapy (CBT) and made a healthy meal plan. I was desperate to help myself and didn’t know what was happening to me.

Overactive thryoid masquerading as anxiety

All this time I doubted something. This was not depression and anxiety – it happened overnight. How could the change have been so drastic and quick?

Then it got worse, the thoughts continued but intensified. It felt like my life was gone, I would pace and sweat endlessly reassuring myself it was going to be ok. But on those days I didn’t feel like it was going to be ok, I thought I was going to die. Being awake was like torture, yet I couldn’t sleep. I spent four days and nights awake, being minded and watched by my mum, my dad or my partner – In these days I considered how I could end it all. I needed it to stop, it was relentless.

I ran into oncoming traffic in my pyjamas, banged my head repeatedly against the wall and floor and scratched my arms.

I just wanted to hurt myself so I would think about the pain and not my own thoughts.

Wanting to end it all

My family continued to watch 24 hours a day, scared of what I might do. I went to the doctors again, a mess. I was ushered from the waiting room to a staff room and screamed crying like I never have before, from the pit of my stomach. I was shaking, thin and gaunt – ‘like a caged animal,’ as many people described me after.

I begged anyone to listen. I knew the diagnosis was wrong. I described other symptoms such as luminous yellow liquid stools and by this point I had lost over a stone in weight. I shouted ‘if one more person tells me to f***ing meditate I will go mad (as if I hadn’t already), there’s something wrong with me, what is wrong?’

From this appointment, I was referred immediately to the psychiatric crisis team at the hospital.

Here I was prescribed various drugs, including antipsychotics and with a view to taking these (I was desperate) I had to stop breastfeeding. In one week my daughter went from breast to bottle. All along my parents and partner guiding, helping, holding and reassuring. Little support was offered beyond my own little emergency services team.

I had by now read everything I could about postnatal anxiety. I did not fit the bill. There were so many symptoms missing and so many more that weren’t described.

I continued to express the feeling that no one was actively listening, that we hadn’t got to the bottom of it. I attended a CBT session and was asked to describe my physical symptoms. I said ‘my eyes are bulging out of my head’ the response was ‘that’s not a physical symptom, do you mind if I write that down in thoughts?’

Later that week I received some blood results, which were taken before I could start the medication the psychiatrist had pescribed. I was told that my thyroid was overactive. (Later described by one endocrinologist as a thyroid storm)

Postpartum Thyroiditis

The relief was immeasurable, a diagnosis? Some answers at least.

I was told to make an endocrinologist appointment and prescribed beta-blockers in the meantime.

All this time there was a feeling of doubt from the professionals that an overactive thyroid would present in such a way. This made me doubt myself and fear for my own sanity.

Whilst I waited for the endocrinologist appointment things got worse. One afternoon my partner had to restrain me from banging my head on the floor screaming ‘make it stop’.

I was driven to A&E – we were desperate and had run out of options. I asked if the endocrinologist appointment could be brought forward. This was not possible and instead I was placed under the care of a mental health crisis team, who visited me at home every other day for weeks.

I distracted myself by reading again and in doing so I found out about postpartum thyroiditis and that having an overactive thyroid could cause mental disturbances, mood swings and inappropriate anxiety.

I also found out that after the overactive phase (hyper) your thyroid could return to normal or become underactive (hypo) and present with another set of symptoms.

I finally made it to my endocrinologist appointment and at this time had begun to feel a little better. I went armed with questions, knowledge and my advocate, my mum. But the appointment lasted less than 10 minutes and blood results were used that had been taken three weeks earlier to form the basis of a diagnosis. I hadn’t been given the opportunity to explain that my symptoms seemed to have subsided.

Medication was prescribed but I was explicitly told that my neurological symptoms were for the psychiatrist to deal with and the fact that I had given birth was not relevant to his diagnosis of Grave’s disease (an overactive thyroid). I was made to feel arrogant for questioning the expert.

The profession was too quick to put me in a box. Once there was a diagnosis of postnatal anxiety and depression it seemed it couldn’t be undone – it was concrete, set in stone.

Believing in myself

Because I had started to feel a little better I did not feel comfortable taking the thyroid medication prescribed, so I went to my doctors to have a repeat blood test. These results showed my thyroid function was normal.

I cannot explain to you the elation I felt. I cried with relief and happiness. Then I braced myself because I also knew that my thyroid could now become underactive and so I waited tentatively, exhausted from the last few months.

Underactive thyroid

Two weeks later and a visit to the doctor showed that my thyroid function was underactive. I had started to feel achy and sluggish, low in mood and barely able to lift my limbs.

At this appointment the doctor confidently diagnosed postpartum thyroiditis and instructed me to take thyroxine in order to replace the hormone my body should have been making.

The thyroxine helped a great deal and for a week or two I began to feel well – maybe even good (in context). I thought it was over and that finally, we were making strides towards recovery.

I was instructed to visit the endocrinologist again and at this appointment my bloodwork showed  ‘normal thyroid function,’ on this basis I was instructed to cease taking the thyroxine.

I was to wait six weeks (enough time for the thyroxine to exit my system) then return for a retest.

Over these weeks I faced horrendous depression and other symptoms that I find extremely difficult to articulate. Thoughts about dying dropped into my head, that one day I would die but it felt imminent and present. These thoughts were there all day long, I would be halfway through a sentence and my thoughts would remind me about my mortality. I was tired, achy, I cried a lot. My sleep was disturbed and twitchy, I felt desperate for the toilet but when I went it felt like I had to push. My hair was falling out, my mouth was dry and I had mild tingling in my arms.

After six weeks I returned to the endocrinologist feeling certain that I would be instructed to recommence taking the thyroxine. My blood work was normal – this time I was devastated.

If my thyroid function was normal why was I feeling so horrendous and so it began again ‘I would suggest you have mental health problems, how are you addressing these?’ said the endocrinologist.

The weeks that followed were as long and hard as the earlier ones, each hour defined by lingering, detailed thoughts of dying, of the people I loved dying. My days were infiltrated by depression, they were long and laboured. One afternoon I got as far as typing into my keyboard ‘painless suicide’ and then spent an hour on the phone to the Samaritans (thankyou). I couldn’t stand the depression amplified by the loneliness and isolation, the feeling that no one understood or could explain what was happening to me. It was simplified ‘my friend has a thyroid problem they just take thyroxine,’ I felt pressure to be well, ‘maybe you just need to get busy to distract yourself.’ I wanted another me – another woman who knew how it felt – who could tell me I would be ok, that in months from now I wouldn’t remember.

This desperation drove me to continue reading. I found that In the UK Thyroid Stimulating Hormone (TSH) is the sole indicator used to diagnose a thyroid problem. I continued to educate and empower myself and in doing so found that the ‘normal’ range for TSH in the UK is nearly twice as wide as most other countries in Europe, America and the World. In any of these countries I would still have been medicated for an underactive thyroid.

I wasn’t giving up. I had been talking to a counselor (it had been a rather distressing time) but KNEW that my body was still not well and on the days that I faltered in this belief my parents and partner believed it for me.

Finding a specialist in postpartum thyroiditis

We made a decision, as a family, to see a specialist endocrinologist. He simplified everything but more than this he acknowledged everything. He took me seriously and provided some resolve. This endocrinologist used more than just the TSH as a basis for his diagnosis and I was given the option to start taking thyroxine again and over time began to see results. On the days following, whilst I waited for the thyroxine to take effect I read his letter for reassurance:

‘She is still within a mild hypothyroid phase’

‘The thyroid antibody status at present with the negative TSH receptor anti-bodies is consistent with a post-partum thyroiditis for which there are well recognised psychological sequelae which often do not peak or match the biochemical disturbances’

‘it can be some time before women feel completely back to their normal selves.’

From this point I moved forward rapidly but still felt unwell. Just not quite right. I tired easily, felt achy, had mild pins and needles in my arms and still faced mood swings.

Other factors linked to postpartum thyroiditis

When I needed a repeat prescription of thyroxine I went to see my doctor and from previous blood results was told that I had a vitamin D deficiency. This was reported as ‘normal for most people in the UK at this time of the year’ and no more was done about it.

Again I read and where I found information about thyroid disease, information about vitamin D deficiency closely followed.

Feeling like I had reached the end of the road with the NHS I sought help from a nutritionist. Amongst other diet and lifestyle changes, which I made with vigour and unwavering commitment, my vitamin D was supplemented.

In early May 2018 I returned to the doctor with a request that he take some final blood tests – things that I had read about linked to thyroid disorders. I was met with the mandatory doubt but by this point, I had become accustomed and ignorant to this kind of attitude. I trusted myself explicitly, I had not been wrong yet. A week later these tests revealed that I had an iron deficiency – one of the most common nutrient deficiencies seen in people with hypothyroidism and crucial to thyroid hormone production.

Glancing at one TSH result and reporting ‘normal’ like I had suffered a cold was simply not enough. To get to the root cause of the issues, to bolster and support my body and thyroid to recover a little more needed to be done. By implementing a wellness plan under the guidance of a nutritionist I have seen vast improvements, as I have supplemented and aided my body my psychological symptoms are all but gone.

It may take a bit of time to get over the ordeal but who would come through this situation without their mental health being totally unscathed?

Missed opportunities

Looking back, I described four symptoms of an overactive thyroid at my six-week postnatal check. I told the doctor I was often wide awake when my baby was asleep, but this was recorded as just new mum tiredness.

If I had been listened to and taken seriously, if the medical profession had acknowledged the symptoms of my condition, I would have felt supported and less scared – especially throughout the overactive phase. If a blood test was taken as the first port of call I wouldn’t have had to stop breastfeeding so abruptly, with such fear and uncertainty. If I had been left on the thyroxine I wouldn’t have faced an additional four months of relentless depressive thoughts. The management of my condition was none existent, I didn’t feel like I was under anyone’s care. I felt abandoned by the medical profession.

Correct management would certainly have saved the NHS thousands in crisis mental health support.

I have lost months of time with my beautiful daughter, months that may have only been weeks with the right support and medical advice.

Perhaps there are many more cases misdiagnosed as postnatal depression – dismissed and not understood.

I share my story to raise awareness and to be a silent friend so that other women can read and feel someone understands. I hope that by writing this story I can empower others to become their own advocates. I want other women to be informed, listened to and acknowledged. Remember – you know our own body better than anyone.

Giving birth is not the end of the journey it’s the beginning – not just for women but for their partners and their children, postnatal support is essential.

If you or someone you know is suffering from Postpartum Thyroiditis have a look at my Postpartum Thyroiditis Survival Kit.

The story continued

Unfortunately, the story didn’t end here. Click the links to read parts two, three, four, five, six, seven, eight and nine of my currently 6-year-long battle.

What is Postpartum Thyroiditis?

Taken from the British Thyroid Foundation Website

• Occurs: usually in the first six months after childbirth
• Symptoms: swollen thyroid gland, not usually painful, hyperthyroidism sometimes followed by hypothyroidism
• Diagnosis: physical examination and blood tests
• Treatment: beta blockers, if necessary, during the hyperthyroid phase, levothyroxine during the hypothyroid phase
• Outcome: usually complete recovery within a few months; otherwise levothyroxine is given if the hypothyroidism is permanent (estimated 1 in 5-10). It often returns in subsequent pregnancies; you should, therefore, be tested after any further pregnancies

Also published here:

NCT, Hypothyroid Mum, February 2019 issue of The Practising Midwife, Hysterical Women and The Positive Birth Movement