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…
Read parts one, two, three, four and six (the end) of My Battle with Postpartum Thyroiditis by following the links above.
9 thoughts on “Part 5 of My Ongoing Battle With My Thyroid Health: Life was slipping through my fingers once again and then I spoke with ‘the lady like me’ who presented new opportunities and hope.”
Hi, I have been following your thyroid journey for a few months but after reading this latest post i feel I have to comment. You are defiantly not alone.
6 months after the birth of my daughter. I like you, suffered an overwhelming feeling of anxiety along with a huge list of other physical symptoms (throbbing in ears, weight loss, sleepless nights etc) I of course was sent away from the doctor with anxiety pills. I believe this was the hyperthyroid phase.
After a couple of months it hit me. Muscle aches, joint pain, pressure on my throat like something is squeezing it, eyes gritty and pulsing, exhaustion, hair loss, itchy skint etc etc. I was referred to rheumatology at this point, who sent me away with normal blood tests and no cause for concern.
At this point I was desperate. I needed to find out what was wrong with me. I then ordered an online finger prick blood test. My TSH was 4.4, TPO normal and like you thyroglobulin was 400+. Off I went to the GP who re ran blood tests that showed ‘normal TSH’ and TPO. Thyroglobulin wasn’t tested. So again I am left not knowing what is wrong.
I decided to book an appointment with a private endocrinologist who I hoped would finally give me answers and some relief from the awful symptoms I feel daily. The appointment was cancelled due to the virus. Let’s hope when all of this settles we can finally get answers to this. It’s only been a year for me but the worst year ever!
Hi Jade, thank you so much for reading and taking the time to respond. I am so sorry to hear you’re in a similar position – it’s difficult for so many reasons – one being that you can’t quite explain to people what’s wrong! I hope you’re ok at this time, the waiting is difficult for me but I am finding that being focused on the present and gratitude is helping, but some days I do just get fed up – and I am allowing myself that too. I do hope you find some answers when normality resumes a little. My TPO antibodies were raised during thyroiditis but they have settled again and like you the thyroglobulin is raised. I know that feeling less alone has been a great help for me, let me know how your journey goes and take care.
I have just uploaded these if of any help over the next couple of months… https://lifelovesandlearning.blog/2020/04/24/can_cards/
I think you are so brave for battling through Jeni. Love you! ❤️
Thanks for taking the time to read Sabaa, I don’t feel brave but thank you! Love you too
I’ve been following your blog for months now and find myself in the same situation as you. I’m so sorry for all that you’ve been through, it’s just awful. I’m now 1 year postpartum with my 2nd baby. I had “classic” but relatively mild PPT after my 1st and felt better by 8 mo PP. This year after my 2nd baby has been the hardest year of my entire life. I’ve had all of the symptoms you describe, include the eye symptoms- gritty, pain, “glass sensation” and my Graves antibodies have been negative but I do have high antithyroglobulin and barely elevated TPO antibodies. My thyroid labs have mostly been within normal limits but my TSH will usually veer towards the overactive range and my T3 has been consistently elevated. It’s just awful. I feel like my symptoms get worse at certain points in my cycle. I’m feeling awful currently, in the middle of a flare and I cannot work.
And to top it all off, I’m a resident physician myself, in the US. And yet I feel like I have fallen through the cracks of the healthcare system. Talk about frustrating! I’ve read all of the medical literature and this is just not well studied. I went from being super functional to debilitated at certain points throughout this last year. I’ve seen so many specialists and they all rule me as “healthy”, yet I feel like I’m dying on some days. It’s pure torture.
I’d love to connect with you and talk more about our experiences. I’d be curious to know about the lady’s experience who you mentioned in your post, that found an Endo that “saved” her. I’m sorry that you’re suffering while waiting for answers because of the pandemic. This is such a traumatic experience. You’re not alone.
Karina, Thankyou so much for reading and I am also sorry you are going through a similar thing. I recognise much of what you write and how you describe the impacts – absolute torment. Thanks for responding, it’s a little easier when you know you’re not the only one, which is why I write. Happy to connect, if you bob me an email on the contacts page. I Hope you’re having a better time atm, I know I hold on to the ebs and flows, ups and downs – it always changes.
Just saw your most recent post. I’m happy for you. Did your symptoms go away with the thyroxine now that you’re back on it? I’d love to connect. Unsure how to send you my email privately. I’m really encouraged to hear that you’re improving. I’m still struggling at 15 mo PP
Hi, not quite there yet but the support makes all the difference. The battle is over in terms of care (I hope) still working through things and there’s a bit of a time piece. If you cantact me here we can have a catch up. I am sorry you’re still struggling. You’re not alone. https://lifelovesandlearning.blog/contact-life-loves-learning/