And so it goes on and on and on and on. The symptoms once again returned, sent me home from dancing, stopped me from sleeping, made me cancel social events, became excuses for courses and eventually got me a sick note from my 1.5 days a week job – something that, at the age of 36, I seem unable to hold down. By now I don’t need to detail the symptoms, they were the same as they had always been and the way they exploded into my life was the same. I was happy living and then I wasn’t. This cycle of ill health has infiltrated every orifice of my life, inhibiting everything from bill paying and relationships to my career and making any kind of plans.
After a short time of experiencing tired and achy muscles, being exhausted, losing my hair and noticing that the buzzing in my ears was returning I had a week of erratic pacing, sweating, mood disturbances and a total inability to sleep. I needed some resolve but was unable to make an appointment with my doctor so after a visit to the walk-in centre I ended up in ambulatory care. The doctor was kind, I crammed 2.5 years worth of information into a ten-minute consultation and was ‘diagnosed’ (for the umpteenth time) with ‘stress and anxiety.’ I didn’t blame him, his tests showed that my TSH (Thyroid Stimulating Hormone) was normal and what else did he have to go off? I tried to explain, as I have many times before, that I was fine (amazingly happy and giddy about life) and then that suddenly I wasn’t but I soon gave up because I had got the medication I required to help me sleep.
By chance, I had a follow-up endocrinologist appointment in the diary for two weeks time. So I rode the intense waves of sleeplessness, insane moods and the feeling that my body was going to explode until I popped out of the other end briefly, in time for the consultation. This appointment was my reassurance. In 2.5 years this was the first time I would attend a second appointment with the same specialist who had been supportive, respectful and understanding.
It was a long appointment, he took his time, listened to my symptoms before even looking at the blood work but when he did there wasn’t much more to say. My TSH was normal and quite normal and the antibodies that had been tested weren’t raised. I asked about the pain in my neck describing the feeling as a ‘lump in my throat’ and was offered the reassurance ‘that it wasn’t sore to touch.’
He kindly took my notebook off me to examine my notes (I always have a notebook) and flicked through the pages saying ‘I mean there are so many symptoms here.’ I felt so utterly foolish.
He asked what my therapist’s opinion was and so I shared it. She thought that I was suffering with an understandable anxiety in the context of ill health and not being heard – she found it hard to formally diagnose any other mental health issues and often talked about how well I articulated myself in terms of explaining my symptoms and in my responses to difficult situations. He tried to call her to understand her professional perspective but there was no answer.
I explained confidently that I have never been so well resourced to look after myself mentally as I was in that moment – it was true, I heard learned a lot. I asserted that a few weeks ago I was great and then suddenly that I wasn’t and that there has been no change in my circumstances other than an explosive return of symptoms – which have been like the aftershock of an earthquake ebbing and flowing through me since Postpartum Thyroiditis. (Even when I am well there are tiny reminders something is still bubbling away.)
And there we were again (albeit delivered in a more caring way) the end of the line. I swallowed it. That day, I felt ok.
The lady like me
Before this most recent endocrine appointment, I shared my latest blog posts with The Thyroid Trust – the charity that has stood by me. They recognised my story as being similar to one of their speakers and promptly put me in touch.
On international women’s day 2020 I spoke on the telephone to a lady just like me, her experiences mirrored mine almost identically (amongst other factors she also had a ‘normal’ TSH.) I wish I was a skilled enough writer to translate the relief I felt into impactful words – to help you understand that this call meant EVERYTHING to me. As I talked about my symptoms she ended my sentences with a familiarity that hugged me, propelled me and filled me with a newfound confidence. She emailed the professor who ‘had saved her’ on my behalf and again there was hope, I just had to wait…
The hard weeks
The next few weeks were hard again. My symptoms flared, I was dragging myself through brief but intense mood-related episodes, restlessness and an overwhelming feeling that my body and brain were wired to overdrive. At points, I was scared for my life. My partner went to his parents with our daughter and as I waved them away my heart broke. My parents looked after me.
A visit to Granny and Grandpa’s – I reassured myself by knowing that to her this was nothing but a lovely time.
The other doctor
I was at the GP again (not ‘my’ GP) asking for relief from the sleeplessness, 4 days had passed and I had had about 5 hours sleep. He glanced at my notes, asked me to practice sleep hygiene (which by this point I was very well versed in) and told me that he would not be able to support me any further. I told him how desperate I felt, I attempted to articulate my story, he said ‘are you depressed?’ I said ‘no.’ He wrote in my notes that ‘I was defensive.’ – it is not defensive to say you are not depressed if you aren’t!? The patient’s (and therapists) voice once again ignored.
I was assertive and checked ‘are you saying there is absolutely nothing you can do for me?’ he looked at his screen and said ‘it looks like we have done enough for you.’ My notes say I was ‘angry,’ because a woman who is assertive is of course angry. I am not sure anyone would have blamed me if I had been angry but this would have been like putting a nail in my own coffin – I am far too good at the strategy for anger by now.
What I thought would be a simple appointment turned into an intimidating power play that added another layer of ‘evidence,’ to the ‘case’ for mental health. I chastised myself for not having learned yet ‘why the fuck did you go in alone!?’ and drove to my parents distraught.
The abnormal results
I had been doing some more reading and thinking and in doing so I found that there were some antibodies that had not been tested. And I held on tightly to the telephone call with ‘the lady just like me.’
On a day that I felt particularly horrendous, I removed the blood test that I had previously ordered online from the cupboard, pricked my skin and massaged the red liquid from the end of my finger into the tiny tube.
Two days later the results were returned to me. There was a small change to TSH (1.4) and a T3 result that sat on the border of normal and not – if this journey has taught me anything it’s that this means nothing – whether it actually does or not I don’t know.
One set of antibodies (TPO) were normal (previously elevated during Postpartum Thyroiditis) but the other ones, the ones that have never previously been tested, the thyroglobulin antibodies were (totally) abnormal. Below the results I read…
Elevated thyroglobulin antibodies mean that your immune system is attacking your thyroid gland. This can affect the gland’s ability to produce thyroid hormones. They can be associated with uncommon autoimmune thyroid disease.’
So here it is. The evidence to say that I haven’t got a thyroid problem is the TSH (Thyroid Stimulating Hormone) results – though slightly changed (and these slight changes always coincide with symptoms) they have remained within the normal range for the last 18 months.
Now there’s some other evidence, some evidence that, to me, might suggest a thyroid problem. I may be wrong, I am obviously not medically trained but until an expert can satisfactorily explain the irrelevance of the below I simply cannot accept my current state of ill health. I just can’t
The First is my symptoms but the problem here is that these don’t seem to hold any weight. They are not equivalent to the TSH blood results and I am not even sure they’re perceived as evidence.
The Second is a ‘diffusely enlarged thyroid gland.’ A ‘multinodular goitre,’ where ‘increased vascularity suggests a phase of acute thyroiditis.’ Again with a normal TSH I am yet to obtain an explanation as to what is happening here, it seems this scan holds little significance.
The Third is raised thyroglobulin antibodies, the ones I mentioned previously, the ones that should be <115 but are 458 and the ones that suggest that the immune system is attacking the thyroid gland.
The Fourth is a family history of thyroid disease, with two women having had thyroidectomy (total removal.) I am unsure of the diagnosis in these instances. I know of one other who has recently been diagnosed with an underactive thyroid post-birth – Postpartum Thyroiditis? who knows. (No history or family history of mental health.)
The Fifth is that an incredibly expert and qualified mental health practitioner who understands how I experience mood-related episodes, in the context of my health journey, does not believe that these can be easily diagnosed within the field of mental illness. Of course, as a consequence of this insanity my mental health has suffered – whose wouldn’t?!
I have never been textbook, the overactive phase of Postpartum Thyroiditis often goes unnoticed – mine certainly didn’t! (Could it make sense that an underlying condition was the reason for my extreme presentation?)
My neck hurts like I have a lump in my throat, I have a tickly cough, my eyes pulse and feel like they have grit in them – there certainly are a lot of symptoms here.
When I’m not well the people I work with and live with can see that I am physically unable to cope, to stand up, to function, they notice the colour drain from my face and they comment as I troop on.
I clearly don’t fit the textbook. I just don’t. There are always anomalies, surely it’s possible that I can be one?
IF (and this is a MASSIVE if) my symptoms were attributed to mental health would a GP not expect to see some improvements 2.5 years on? I mean I have been seeing a counselor from the minute this shit hit the fan, being present, practicing mindfulness, eating well and the rest. But there are no improvements, I am still doing the same loops, still feeling well for a brief period and then going so explosively back to square one.
Following on from her email I connected with ‘the lady like me’s’ consultant and his colleague, via telephone and then email and I was reassured that they would see me at the beginning of April. I had felt this relief before and so I enjoyed it with nervous trepidation but somehow this time it felt different. Maybe in three weeks, I would have some answers, I felt like I was getting close…
And then the coronavirus hit and the world went into lockdown and so what we did, like everybody else, was wait. Taking each day and hour as they came and hoping for some relief from symptoms not knowing when the next consultation might be…