Eight Years. It’s been EIGHT fucking years of my life that I’ve lived in some relentless loop of physical and mental torment. Not only managing debilitating symptoms, borne out of a deeply traumatic experience, but also managing a system of ignorance and dismissal. My beautiful baby is 8 years old – I cannot believe it. I cannot compute the years. I’ve survived every single one of them.
Pretending
I was afforded a month or two where I could ignore my condition to a degree. My symptoms were ever-present but less ferocious, more manageable – this is largely down to my relentlessness and drive to tap into being alive. I was still not very well. I was tired of appointments, of problem-solving and thinking, of this mess being such a consuming part of my existence. I took the opportunity and escaped as best I could. I knew the ignorance was not wise, but I needed it.
Seperation
In March, I separated from the father of my child and my partner of 10 years. The untold damage of the last eight years cannot be ignored. Then, from April, my symptoms slowly deteriorated until I quickly became debilitated once again. I had forgotten. It astounds me how I forget just how abysmal it is. I felt unsure, alone, and worried about how I might cope with life’s new responsibilities as a parent living alone.
Three Wise Endocrinologists
In June and July I saw three endocrinologists: a remnant of referrals from the genetic testing mission, a follow-up in Oldham and my regular endocrine surgeon.
First was the regular. I had for months now had the feeling we were reaching the end of the road. I wasn’t wrong; my endocrine surgeon referred me to the endocrinologist at the same hospital. I’m not sure why this hadn’t happened sooner – perhaps before the decision was taken to remove my thyroid?! This referral very much came across as them not being bothered anymore, rather than a proactive drive to help. I was warned that the endocrinologist didn’t have a good bedside manner and would ‘tell it to me straight!?’ (prepping me for further dismissal?) It was also recommended that I adjust my dose because my TSH was suppressed and the T4 was slightly raised; this had seemingly been the case consistently for 4 months, following a less stable period (regardless of consistent and hyper-vigilant medication-taking.) There was some other information that’s not worth noting. The letter was inaccurate and didn’t detail my symptoms or the course of action we had taken, like they had so eloquently done in the past. A barrier to access, a dismissal in itself.
The new endocrinologist who came off the back of a referral for genetic testing and was recommended to me said that my TSH was in the normal range and that I was under the care of another team – he wasn’t sure what more I wanted? TO BE WELL. Or, at the very least, to identify the problem and have a care plan in place. I’m driven by desperation. The hobbies I preferred and once enjoyed were dancing and running – not bothering endocrinologists hours away from my house! The GP hadn’t sent any information with this referral, so explaining eight years and what I needed in ten minutes was fun. There were some familiar questions about my mental health, because it’s way easier to call me mad, but I asked why we were so focused on my brain and he explained it away. It was ‘because thyroid disease can affect your mental state.’ WELL YOU’RE NOT KIDDING ME – DOES IT?!
The Oldham endocrinologist had previously identified low iron and prescribed tablets for this. This has happened three times over the course of eight years. I took the tablets, as I always do. There was no follow-up; my iron levels weren’t checked. They remain low. HE said I had chronic fatigue syndrome…but sent me away with low iron and discharged me from his care.
Due to not having childcare my daughter was present at this appointment, which was far from ideal. The endocrinologist did what they all do, had a cursory glance at the numbers, and told me that all was normal. When we left the surgery my daughter very expressively exclaimed, ‘he kept saying normal, normal, normal. NO! Mummy he’s wrong, it’s not normal I live with you and it’s not normal at all.’ She also said ‘he didn’t listen it was all my way my way and just telling.’ He was dismissive to say the least. My symptoms don’t count as real evidence.
My thyroid was removed, and my symptoms deteriorated; this is a consequence, not a coincidence.
All three referenced fatigue as the sole identifier of my symptoms. My symptoms are a plethora of different exhaustions. A feeling that I can only find the words ‘hangover’ to describe, vice-like pressure in my head, neck, jaw, along with headaches. Every cell in my body is off and throbbing, including debilitating aches in every muscle. Sometimes it’s like my body is fighting with itself, so exhausted I’m desperate to sleep but somehow edgy and still driving forward. My brain is bothered – it’s a hormonal system. Clearly, this journey has traumatised me but I can feel and articulate the difference when I’m flared and my systems off and the head stuff that comes with that. It’s darker, more sinister, and worse – there’s nothing I can do about it.
Three dismissive professionals in one month took their toll. I felt like it was the end of the road, I was debilitated, desperate and so alone. They were the experts. I didn’t know where to go next, I started to believe them and doubt myself, my sanity. I had always known what my next move was. Which questions to ask, what to read, the next thing to learn about, which tests to request but right then I drew a blank, I was in a black hole and I just couldn’t see a way out.
This very much felt like the end of the line. The feelings that this came with were dark.
Llandudno
We cancelled the family holiday and began to get used to shared parenting. I wanted to take my daughter to Llandudno for a week, but I couldn’t take the plunge alone, so my Mum and Dad, my (not so) little one, and I went to the seaside for five days.
I wasn’t well and I couldn’t be the parent I wanted to be, I couldn’t look after my child alone. There are moments where I look at my 70-year-old parents, one with their own battle with cancer and it hits me, my quality of life and how eroded it is. It’s stark. My Dad took my daughter into the sea, I got into bed with my Mum and cried. Later that day I reached out to a woman who’d given me hope so many times before. She was another thyroid patient and ex-thyroid charity director that I had lost touch with in the self-preservation mode of isolating myself from the world.
I explained where I was at, shared my updates and she shared her words of support and wisdom. How ridiculously wise she is, how she has had to learn to access what she needs – like so many of us.
She shared some information about thyroid numbers and diet, and I showed her my information, which she offered her thoughts on. This exchange in itself started to wake me up. She said she had been where I was, told me to keep going. How could I not? I have to; it’s a matter of life or death. There is no choice.
She asked if I had watched and listened to Professor Antonio Bianco:
‘Rethinking Hypothyroidism’ book talk by Prof. Antonio Bianco, MD, PhD
Hypothyroidism Research Update talk by Professor Antonio Bianco, MD, PHD
I couldn’t watch them, I felt so poorly and weak and so utterly traumatised. The dose reduction hadn’t helped, so I returned to my previous dose. My beautiful Mum did the labour, watched the talks and then bought the book Rethinking Hypothyroidism and read and read and the more she read and shared the more we unpicked and learned.
I absolutely must say from this point forward, I’m writing about my thoughts and understanding of what we learned. I am not a medical professional; I speak from my experiences ONLY. I’m also speaking second-hand – this information has been shared with me because my capacity is currently too diminished. I absolutely recommend watching the talks yourself or reading the book.
Revelations
I hadn’t listened to the talks before because they were in reference to Hashimoto’s Disease, and my diagnosis before total thyroidectomy had been Postpartum Thyroiditis, Chronic Lymphatic Thyroiditis and Graves Disease. I did experience an overactive thyroid or thyroid storm at the onset of postpartum thyroiditis, but I have always doubted the diagnosis of Graves disease. This is because my thyroid receptor antibodies (TRAb – an indicator of Graves disease) are the only antibodies that have not been elevated. The TPO antibodies (an indicator of Hashimoto’s) and the thyroglobulin antibodies have been significantly elevated. I’ve asked this question regarding the absence of TRAb antibodies and the label of Graves before, but I’m yet to receive a formulated response. There are other reasons I’m doubtful, all grounded in learning, but there’s too much detail to articulate here.
I’ve never felt reassured by the science; it’s never felt like someone has a concrete understanding of my clinical journey. I’m certain this has been further exacerbated by the fact that no one has been in charge of my care from the beginning.
In summary what we learned is that some patients don’t do well on T4 (what I currently take) medication alone.
My understanding is that at one point, all thyroid patients were treated using T3 and T4 medication. Medical science then deemed it unnecessary and decided that T4 was the silver bullet treatment, abandoning T3. But there were a few anomalies, patients who didn’t do well on T4 alone and in a culture of dismissing women, it’s easier to do just that. There’s something systemic in it too, cost, ease, lack of research and awareness.
This learning prompted me to look at my own T3 numbers and I noted that the T3 graph of the last 4 months plummeted in line with my deterioration of symptoms. I also looked more closely at this in relation to my T4 numbers. It seemed that my T4 needed to be high—sometimes out of normal range — for my T3 to be comfortably in range. I’m not suggesting this is the answer; I do not proclaim to know, but it was surely something to ask questions about and consider?
I contacted one of my endocrine specialists and asked whether combination treatment (T3 and T4) had ever been a consideration for me. The response was ‘What’s that?’ I explained ‘taking T3 and T4 medication.’ He responded that it was possible but very risky and needed monitoring closely by an endocrinologist. I was aware that some research has been carried out regarding T3 treatment risks, but there are also some clear indicators that this research was carried out in the interest of proving that the silver bullet T4 theory was the best…systemic drivers to erase those pesky anomalies, what’s one or two (largely) women’s lives right?
Rage
The word risk rolled around my brain for days seeding a torrent of rage.
As risky as removing my thyroid? An organ that helps EVERYTHING to function. An organ that communicates with every cell in the body to make it work. Removing an organ that means I have to take medication daily to stay alive. An irreversible action that cannot be changed or undone. An action that has significantly lowered my quality of life.
As risky as living my life? As suffering this daily torture that inhibits my access to EVERYTHING. I’m not sure what I need to say or do to translate how hard it is. That some days it feels very real that I may not make it. The reality is that the thought of not taking my medication has crossed my mind. My career has gone, my relationships have evaporated, are strained and over, my daughter misses a Mummy, on the school run, at concerts, my parents mental health is shot, they live in a permanent state of fight or flight and worry. What other tangible evidence is required to demonstrate the impact on so many lives? What needs to happen to a person to move the system to action? For someone to give a shit?
The reading continued and we discovered the importance of iron in the T4 to T3 conversion. There has been such a lack of care or interest in correcting my iron levels despite my appearing at the doctors’ every other month, desperate for help. Despite my being off work sick for six weeks whilst symptoms ravage my body, despite my inability to access any part of my life. Iron deficiency anaemia is a problem (with symptoms) in itself!
My calcium was also low – I don’t know if that’s relevant. I will try and find out.
Mum accessed the forums, read the books, emailed the advocates and we formulated (are still formulating) a plan, chastising OURSELVES that we had not come to this sooner. Not the professionals whose Job it is to think. I know they’re caught in the system. I know even the good ones struggle. But I’m done with excuses, I’m done with dismissal and neglect. We’re talking ****** basics here.
Reaching Out
The reading gave us the names of endocrinologists with a grounding in and understanding of this research, so I got busy emailing. I hadn’t been on this horse for a while. I got immediate, understanding replies from two of the three endocrinologists and an offer to attempt to see me in clinic—postcodes were the issue again. I was told to check in a week if I hadn’t heard anything. I chased, and chased again. It’s been three weeks and I haven’t heard anything; all the while my symptoms have been unbearable. I got onto the problem-solving, found his secretary’s number, called, and asked whether he practised privately and how I could be referred, etc. She was abrasive, dismissive, belittling and I would go as far as to say cruel. I was triggered and gave up and I remain in that space.
Desperate
It’s a strange crossroads with new feelings. I should be hopeful, but I’ve had hope several times at similar crossroads before. Maybe my brain has figured out the pattern, that every time there’s been hope, it’s been dashed, and I end up in a new, unimaginable place that is unbelievably worse than before. The timepiece alone emphasises this. The pressure cooker that I live in is not sustainable. One slightly better day does not mitigate the long-term worsening of health and the systemic abandonment, neglect, and abuse that continues year after year.
I’m drowning before life begins. We lost a close family member recently, I moved house, my dad has cancer, any ‘extra’ is like a tornado that rips through the whole family, puts us all on a life raft – I carry this burden. I don’t know how I’m going to age—how I’m going to deal with the hardships of everyday life when this is my base.
My anger used to be useful. Now it just feels like pure rage eating me up from the inside. I’m too tired to use it and too disillusioned to act on it. What’s the point? I’ve retreated from the world once again, I can’t articulate what this is to people and it’s too painful to listen to the platitudes and ignorance when I try. I’ve been off work for six weeks now and I can’t care. For anyone who knows me, they know how HUGE that statement is, how driven I am by my career, creativity, and making a little difference.
They took my thyroid out before correcting my iron levels, before perhaps trying combination treatment, like I was some irritating remnant of giving birth that just kept coming back. The enormity of that act!? If it were predominantly men suffering from thyroid disease instead of women, we wouldn’t be butchering bodies so willy-nilly and leaving people to rot in a prison of their own life. It’s vile.
The disease is hard and I understand that life is hard, people get sick. The problem is the context of psychological warfare, with NO help and support. For all the words that are written here, I cannot and never will be able to articulate it.
Click the links to read parts one, two, three, four, five, six, seven, eight, nine, ten and eleven of my journey.
Life Loves and Learning 