My FULL thyroid story – diagnosis, surgery, recovery and the years after…

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When I first started this blog, my intention was for it to be about gluten free food, and how to live with coeliac disease. But in 2010 I was faced with having to have thyroid surgery and the only thing I could find online about it was horror stories.

I wanted to create a space which told about my thyroid experience – the before, during and after of surgery. I posted some blogs at the time about my surgery experience but as these receive so much interest I thought it was only right that finally (over eight years on!) I take the time to tell you EVERYTHING.

I’ll try and break this up into subsections, so if there’s a particular bit you’re interested in, please feel free to skip ahead! I apologise this post is so long, but I really hope it will be of some help to someone. An extra thank you to photographer Sophie Mayanne, for letting me part of her Behind the Scars campaign and taking these amazing photos.

Disclaimer: You should always discuss your options with a medical professional – I am merely telling my experience and can’t give you advice on how to make your own decisions about your body and health. But I hope this will give you an insight into ONE PERSON’S experience out of MANY. Remember, everyone’s bodies and situations are different.

Extra disclaimer: Sorry (not sorry) for the gross scar pics if you’re squeamish.

My hyperthyroidism diagnosis

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I was always very thin as a child – a combination of my coeliac disease and overactive thyroid.

I’ll be completely honest, I don’t remember a lot about my diagnosis with an overactive thyroid, but I know it arrived at virtually the same time as my coeliac diagnosis. I was probably about 11-12-years-old, and had been in and out of the doctors trying to find out the reason behind the stomach aches I was having.

I was one of the shortest in my class, and incredibly skinny – though I had a ridiculous appetite and was constantly eating and complaining of hunger. As well as these symptoms, I was always quite hyperactive as a child. I spoke very fast and would always be ever so slightly manic. I think everyone just put this down to me being overexcitable. 

I don’t know which diagnosis came first, but it transpired that I had coeliac disease and an overactive thyroid. This is not uncommon – many people with coeliac disease also have thyroid issues as autoimmune conditions like this tend to be best friends and go everywhere with each other.

Basically, in short, my thyroid was working on overdrive and burning off way more energy than I could eat. Coupled with the fact my coeliac disease would have been stopping me absorbing my food properly, it was no wonder I wasn’t growing and developing at the same rate as my friends. I’m not sure which symptoms exactly related to which condition, but needless to say they both didn’t help each other!

Early thyroid treatment

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Photography by Sophie Mayanne / Behind The Scars

From what I remember, as soon as I was diagnosed with an overactive thyroid, I was started on carbimazole. I was on about six tablets a day, with the intention that this would stop my thyroid working completely, and then I would take a replacement thyroxin tablet which would give me the ‘normal’ amount of thyroid hormone.

I don’t remember a lot about how this made me feel, and please bear in mind this was around 17 years ago, so I don’t know if this is how an overactive thyroid would be treated now. Plus each person’s journey will be different depending where they are in the world.

I think we tried this several times over the course of my teenage years, but while my thyroid would play ball for a while, my levels would soon creep up and I’d be back on the carbimazole again. My mum – and later my boyfriend Steve – would always notice when my levels were on the rise, because I’d become a bit ‘manic’.

My overactive thyroid symptoms would include feeling cold all of time (odd, because this normally happens with an underactive thyroid!), being constantly hungry, talking very fast and my eyes starting to bulge. In later teenage years, I started to develop a bit of a goitre (bulge in my neck) too.

Opting for thyroid surgery

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Before and after thyroid surgery.

I remember being at university and the doctor ringing me up and telling me my thyroid had gone overactive again. I just burst into tears stood outside of the SU bar! I remember feeling so fed up of being in this constant cycle and feeling like my body hated me. At a time I was already feeling very down (probably not helped by my thyroid issues anyway) I knew I had to opt for a more drastic approach and try and fix things.

I already knew a bit about my options because thyroid problems run in my family. One of my aunts has had surgery to have hers removed, and another chose to have an iodine drink (which essentially ‘kills off’ you thyroid), so I knew I had a few options in front of me. As much as I didn’t like the idea of having my neck cut open, I really didn’t like the idea of drinking something radioactive. The iodine option didn’t sit well with me and I also was told this wouldn’t solve the issue of my goitre, only surgery would. 

So I opted to have a total thyroidectomy in December 2010. For me, I know it’s superficial but getting rid of the goitre (a large lump in my throat) was the most important thing. I was always conscious of it, sometimes people would be nasty and say I had an Adam’s apple, and I hated it. I wanted it gone. I don’t know if this is a decision I’d make now, but at the time it felt like my only real option.

My thyroid surgery experience

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Photography by Sophie Mayanne / Behind The Scars

In the run up to my thyroid surgery, I was put back on a course of carbimazole to ‘calm down’ my thyroid before they removed it. I won’t lie, I remember being absolutely terrified when I went in for surgery. I was so nervous that I passed out when the nurse took a blood test!

It probably didn’t help that I had been up the whole night before Googling horror stories (top tip: don’t do that!) and had worked myself into a bit of a state. It was my first experience of surgery and although I was a little excited about the prospect of a solution, it didn’t stop the nerves.

When I went down for my surgery, I remember having a (rather attractive) student anaesthetist having a stab at my hand and failing miserably. Then the anaesthetist could see I was getting stressed so had a go himself and managed to stab himself with a needle! 

I remember wondering what an earth I had signed myself up for, but then the sedative hit me and I thought ‘wow, this is fantastic!’. The next thing I knew I felt the cold going up my arm and I was asleep.

Initial recovery from thyroid surgery

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The day after my surgery, complete with drain and staples. What a look!

When I woke up from my surgery, I remember very clearly wondering why on earth they had given me a bottle of ketchup. And then I realised it was actually my surgical drain. Lovely! A lot of my stay in hospital after that is very hazy.

I do remember being in some pain initially, but mainly from the stiffness of being terrified to move my neck. I was on a steady stream of codeine, paracetamol and ibuprofen, but I mainly just remember my neck feeling weird. I couldn’t like flat because it felt like someone was pressing on it. And eating just felt very odd – I struggled to eat much, even though I started to feel hungry again.

I found out not long after waking up that although I was booked to have a total thyroidectomy, they had to leave a small portion of my thyroid in. This was because my thyroid was a lot more enlarged than they first thought and, to quote the surgeon, ‘oozing’ (nice) – so they couldn’t locate one of my vocal cords. I think this is quite a common risk when it comes to this sort of surgery.

At the time I accepted this but since then I have realised they rushed into this surgery quicker than they should have done. I felt angry at myself for just wanting my thyroid out and for being so impatient. Before I went down into surgery they said the blood tests indicated my thyroid levels were still a little higher than expected, but they went ahead with surgery anyway.

If I could go back and do it again, I would have said no, and made them wait until the levels were right. I think I was just too terrified to stand up or be insistent, and was so naive to the whole thing I didn’t really know this was an issue.

Whoops, there goes my parathyroid gland!

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Six days after my surgery. Staples gone, but you can see where the scar split in the middle.

The doctors had warned me that during the surgery they might accidentally remove some parathyroid glands, and that this could cause a temporary calcium deficiency. This happened to me – I woke up with the worst pins and needles in my entire body, my face – everywhere. I had to be put on a calcium drip which, overnight, saw the symptoms ease, and then I had to take a calcium supplement for a couple of weeks afterwards as well.

I think in total I was in hospital for three days after the surgery (this would have been less, if not for the calcium drip). The worst experience for me was having my drain removed. Yes, it was brief and the nurse was as good as he could be, but honestly, this was horrible. Eight years on I can still feel it and it makes me wince when I think about it!

But if you can get through having your neck sliced open and someone pulling out some of your insides, you can get through anything, right!? I am pretty squeamish anyway, so bear in mind this might not be as bad if you’re of a stronger stomach than me! Needless to say, it was over in a matter of seconds.

The months after thyroid surgery

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Around three months after my surgery.

Again, I’m having to dig deep back into my memory here (not an easy task!) but I did write some initial blog posts in the months after my surgery, including an overview of my thyroidectomy experience, the first few months after and a year after thyroid surgery. I think my recovery was fairly straightforward.

I did have an issue when I had to go back up to hospital the day after going home, because my wound had started to split open a bit. In hindsight, it will forever bug me that the nurse took the staples out of my wound so soon – it’s left me with a much wider and more prominent scar than I ever anticipated. It also took me quite a long time to get the full feeling back – a lot of the time I’d touch the skin and not feel it. Now I think I have a tiny numb patch but otherwise it’s all normal. 

Most thyroid scars are barely noticeable, but mine was already a lot longer than most and now it is quite obvious. It will perhaps always be an insecurity of mine, but Steve calls it my second smile and I’m (still) trying to learn to accept it as a part of me and a souvenir of my journey. Scarves and roll-necks also help!

Helping my scar heal

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Photography by Sophie Mayanne / Behind The Scars

I think one of the worst things for me were the combination of getting an (inevitable) cold from being in hospital, and my neck being so stiff from not moving it properly. My scar felt tight and I was basically terrified if I moved my neck my scar would burst open (it wouldn’t have)! This combined with the sheer volume of snot and a sore throat didn’t really help me to feel much better. Nice image, right!?

One thing that really helped me was Bio Oil. I religiously rubbed this on my neck every morning and evening once it was less ‘scabby’. I think it helped to fade the scarring, but also made sure it was moisturised and made it a lot more comfortable for me. It was a bit of a religious thing for me, and I used it for at least a year after my surgery. I think my scar definitely faded more because of it.

Once my scar had healed, I don’t really remember feeling any other ill effects from the surgery. I was very conscious of the scarring but I had opted to have my surgery in the wintertime so I could wear scarves! Even now I wear scarves almost daily – I guess it started as a means to cover up my scar but now I just love them and a comfort thing, plus it has become a bit of a habit.

In terms of treatment, I was put on thyroxin (thyroid replacement hormone) straight after surgery, to try and get my thyroid levels to a ‘normal’ level as soon as possible. Simple, right? That was the plan, anyway…

The stubbornest bit of thyroid ever

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Photography by Sophie Mayanne / Behind The Scars

My thyroid levels were soon up to ‘normal’ and I thought everything was peachy. Great stuff, this is what life should be like! But then up they kept creeping. It turns out, that tiny bit of thyroid they left? It was pretty damn stubborn.

I mean, it was probably just trying to be nice and working overtime to compensate for the thyroid that wasn’t there anymore. Right? But soon I was off the thyroxin completely. That little remaining piece of thyroid was putting me at a ‘normal’ level for someone with a full and functioning organ.

But then, several few years after surgery, the goitre started to come back. I was devastated. One of the main reasons I had gone through this whole ordeal was to get rid of this lump on my neck. I was sent for an ultrasound but all looked normal. My thyroid levels were normal. I felt so frustrated I wanted to scream – how could it be normal that a tiny remnant of thyroid was producing the same amount of hormone a whole thyroid should? Surely that is NOT normal behaviour!?

Feeling the frustration

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Photography by Sophie Mayanne / Behind The Scars

I felt like no one was listening to me. I was referred to see a surgeon to discuss further surgery but I couldn’t face it. He told me he would try to go through the same scar but he couldn’t guarantee that would work – and I couldn’t face another scar on my neck. I decided surgery wasn’t an option and that-was-that, I was pretty much spat out of the machine. 

I was also sent to see an endocrinologist, which proved pretty fruitless. All she did was surprise me with a nasal numbing spray (which nearly made me pass out – told you I was a wimp!) and shoved a tube down my throat to check my vocal cords. She told me my option would be the iodine – so here I was, in exactly the same situation as pre-surgery, just without so much of the thyroid!

I’ve never been told by my GP how often I should go for thyroid checks, though every time I go back they’re like, ‘oh yes we should really have done one by now!’. But suddenly, this year, I was invited for the first time ever to go for an annual blood test for my coeliac disease. And low and behold, guess what that picked up….

They overactive thyroid journey starts again…

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Photography by Sophie Mayanne / Behind The Scars

That’s right – among the many tests was one for my thyroid, which picked up my levels were high. A ‘normal’ thyroid level should be around 22 and mine was 34. Several calls to my GP later and I’ve been put back on carbimazole and my bloods are recording it’s starting to go down. I’ve also noticed the lump in my neck finally starting to shrink a little!

Turns out, a lot of the symptoms I had been experiencing were down to my thyroid being overactive and I hadn’t even noticed.

For me my overactive thyroid symptoms were:

  • Palpitations
  • Constant exhaustion
  • Feeling hot/sweaty all the time (and not in a good way!)
  • Anxiety/low mood
  • Trouble sleeping
  • Generally feeling a bit like I’d explode with stress.

I’d love to give you a happy ending for this story but the truth it, more than eight years on, it’s not over yet. I’ve certainly learned that bodies are complicated things and thyroid surgery is not a quick fix. For many, it will solve all their problems, but for me it has left me still trying to figure out the path ahead. And that will certainly be my next step.

But it’s been so interesting sharing my journey and hearing how many other people have had issues with their thyroid too. It seems like it is one very complicated issue and almost makes me feel grateful for coeliac disease – at least treating that seems pretty straightforward in comparison!

So what is next in this great big thyroid journey? In all honesty – I don’t know. Once I’ve had my specialist appointment I’ll certainly have a better idea of my options. But I’m also open to looking at a more holistic approach. If anyone has any recommendations I would love to hear them – please comment below or email me at sarah@theglutenfreeblogger.com. I’ll be sure to keep you posted if you’re interested!

Things to consider before opting for thyroid surgery

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Photography by Sophie Mayanne / Behind The Scars

If thyroid surgery is something you’re looking into, based on my experience, these are the things you should consider:

  • Are you looking for a quick fix? This is fairly major surgery and should be considered carefully. Don’t jump in like I did.
  • Have you explored all your options? There are always choices, whether you’re looking at medication, iodine treatment, surgery or a holistic approach.
  • Can you live with the scar? Scars fade but you never know exactly how they’re going to end up depending on your surgery, so consider this carefully.
  • Do you trust your surgeon? Make sure you’re in the hands of a medical professional you trust and ask every question you can think of. Leave no stone unturned.

Thank you for reading my thyroid journey – I hope it’s been helpful! As I final reminder, if you’ve made it this far, please do ALWAYS see a healthcare professional if you’re experiencing thyroid problems or symptoms you’re worries about. I’m happy to share my story, but I’m not a doctor!

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thyroid surgery recovery - my overactive thryoid, subtotal thyroidectomy scar and scar healing and thryoid treatment

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Disclaimer: You should always discuss your options with a medical professional – I am merely telling my experience and can’t give you advice on how to make your own decisions about your body and health. But I hope this will give you an insight into ONE PERSON’S experience out of MANY. Remember, everyone’s bodies and situations are different.

4 Comments

  1. Janet C B Woodward
    August 2, 2019 / 08:18

    Good to know you are doing well. I know the journey wasn’t easy…but you are here on the other side…and look happy and healthy…

  2. Donna
    August 4, 2019 / 19:40

    Wow , I have been on similar journey for last eighteen months , pretty awful , , same drugs , thyroid removed also had calcium issues , ended up in intensive care , it all went on for months just recently thought I was on the happy road and fatigue creeps in and now I have tinnitus and muscles issues 😫 never stops does it .

  3. August 5, 2019 / 17:01

    This was an epic read Sarah. I knew your story from the first time I found you but didn’t really KNOW your story if you see what I mean. We’re each of us so intricate with our medical histories and what hit me personally was when you said that CD was easy in comparison, I feel that way about CD v’s T1D. I’m totally gutted for you that this is not the happy ending though, I had no idea you were still experiencing problems with your super-human thyroid mini gland … have you named him…It has to a him surely to be that annoying (hahaha) Tiny-Tim maybe? Joking apart, you’re inspirational and I don’t believe I’ve ever seen you without that huge smile on your face. Keep it up sweetie xxx

    • Sarah H (GF Blogger)
      Author
      August 5, 2019 / 17:55

      Ahhh thank you so much, that’s such a lovely comment! And yes I LOVE the idea of naming him (it’s definitely a him for all the trouble he’s caused, haha!) Tiny-Tim the Superhuman Thyroid Mini Gland it is! So annoying when you have multiple health issues but I hope I can share some positivity! Same with you – you’re always smiling and it’s FAB!! xx

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