It took over 3 years of being horrendously unwell to find medical support for my not so common presentation of thyroiditis and this was because I was labelled and not heard.
After giving birth I had what has been described as an ‘extreme presentation’ of Postpartum Thyroiditis – a condition where your thyroid becomes overactive and can return to normal or become underactive, usually at about 3 months postpartum.
When I initially cried out for help, it was at my daughter’s injection appointment and I was desperate for sleep – I had been wide awake for several consecutive nights even though my daughter slept through. A doctor was called and, in a corridor, I was prescribed anti-depressants – this ‘diagnosis’ of mental health was my new label. One that remained a barrier to my care for over 3 years (and locally still does.)
When the symptoms got worse I was referred to a crisis mental health team. I screamed (literally) ‘this is not mental health – I feel like I am going to physically explode!’ I was prescribed anti-psychotic medication and told by the consultant who ‘popped in’ – ‘I’ve seen hundreds of women like you before.’ The label grew.
Before I could commence the medication, bloods were requested and the results showed an overactive thyroid.
Often the overactive phase goes unnoticed but for me, it didn’t.
For six weeks I was plagued by the excruciating feeling that was an overactive thyroid and for most of this time, I had no support or explanation for what was happening to me. I didn’t sleep for days, I constantly watched my own thoughts, experienced intense mood disturbances, paced, sweated and when it got too much I banged my head against the wall for relief. There were times I felt like I couldn’t bear it any longer.
Getting a diagnosis
From this point forwards I read and learned about Postpartum Thyroiditis and a few weeks later, when my thyroid function became normal and then underactive I was finally diagnosed. But this was not enough to shift the mental health label.
As is the case with an underactive thyroid I was prescribed thyroxine but through lack of knowledge and understanding of the condition I was on and off this medication twice and before 12 months postpartum. Each time I stopped my debilitating symptoms returned but with my TSH (the thyroid function check) now in the normal range I had no obvious further options.
Just keep going
Six consultant specialists instructed me to seek psychiatric help but with on-going symptoms, that I recognised as either an under or overactive thyroid I continued to research, share my story and seek help. By this point I also had a very good counsellor, the isolation and lack of listening became impossible.
The cycle of ill health
For about a month or so I would feel ok (small reminders would tell me that it wasn’t done) then symptoms of what I recognised to be an overactive thyroid would explode back into my life preventing me from working and for a prolonged period of time accessing any quality of life. I would then feel excruciatingly tired, achy, miserable and physically unable to function for months and the cycle would begin again.
This cycle infected every orifice of my life from work and finances to relationships, the health of my partner and how I cared for my daughter.
Looking at the evidence
I had a thyroid scan and amongst other findings it showed ‘acute thyroiditis,’ I have a family history of thyroid disease, I had symptoms that were the same as those experienced with a diagnosed thyroid problem (though this is not perceived as evidence in the way clinical tests are), I had a therapist who couldn’t diagnose within her field of expertise, I had raised antibodies but the gold standard TSH (Thyroid Stimulating Hormone) was normal. And so I was told that it was all in my head and excuses were made – ‘ of course, you will be tired with a young family.’
The label continued to grow
At each clinical interaction, the label festered and grew and along with it, my fear of not being heard. This fear sometimes presented itself and was then used as ‘evidence’ to compound my mental state – an easy get out when the answers aren’t obvious.
What the professionals said
And so I was warned ‘not everything is your thyroid, you’re fixating on numbers, you don’t get a pain in your neck with thyroid illness, you’re taking up too much of my time and it looks like we have done enough for you.’
At this point I was ready to give up, to accept this was now my life and that I would just have to learn how to manage it. I didn’t know what was next. I had reached the end of the line.
I continued to share my story via a personal blog and in doing so was connected with a woman who had a similar experience 10 years prior. She kindly connected me with the consultant that had supported her.
A few months later I was able to see him. I had time and space and was heard. He assessed all the evidence and gave weight to my symptoms – he listened.
Diagnosis and support
The diagnosis has been there all along, written in black and white, I have (Jenny’s) thyroiditis but now I also have medical intervention, support, and a plan.
I still have a journey to good health but I no longer feel like I am on this journey alone and that is life-changing.
I try to focus my energies positively and look for opportunities in the big what if’s but I sometimes can’t help but wonder.
what if someone had listened sooner?