It’s never a good thing to be told that you have a condition called “Grave’s Disease” – it’s a rather discouraging term. A disease of any kind is far from ideal, and especially not when it is referred to as 6-feet under…
Even more so when you don’t know what it means, and even more so than that when you have barely left your teens and are far too busy enjoying a busy social life.
This blog post is incredibly important and sensitive to me, with some detail not even my nearest and dearest are aware of, and I’d like to share with you a short-film that I filmed last year for the British Thyroid Foundation…
It took a lot of thought to agree to take part but it is for a much needed awareness campaign and for a medical charity with a direct personal connection. How could I say no?
Please share my story to those who may be able to seek comfort from it, and I’m of course happy to speak to anyone that wants reaching out to – just leave feedback at the end of this blog post or click here to send me a confidential email.
HERE GOES!! Eek! *Bites knuckles”
Click HERE to view my 5-minute story, or copy and paste the YouTube link below in to a new window (PLEASE also read my story below):
To view more patient journeys (including mine) as well as an 11-minute film featuring Simon Pearce, a Professor of Endocrinology at Newcastle University, providing useful insight (also featuring yours truly), click here.
Please continue to read my story…
NEVER underestimate the power of the thyroid gland, all that comes with it and the complications it can cause. If you know anyone suffering, don’t ever dismiss, play ignorant or act uncaring.
Yes that includes you, Katie Hopkins, with your unprompted tweet “My local under/overactive thyroid self-help group meets in KFC.” Grrrrr…
It’s not about being fat or thin – and if that’s all you believe then you ‘gotta lotta’ learning to do! (Especially if you want to be my friend 😉)
The reason why the British Thyroid Foundation wanted to work with me is because I suffered a very rare case. I was incredibly poorly and exceptionally young to have gone through what I did. Although it has taken a bit of time, I have finally turned my life around – enjoying life and a successful career whilst surrounding myself with amazing family and friends. My biggest achievement is completing the London Marathon 2014 (running 26.2 miles non-stop from start to finish), something 8-10 years ago I would NEVER have dreamed of accomplishing.
Nobody in their right minds believes that anything medical is going to happen to them during a stage of life where going out, boys, shopping, Sex & The City and saving up for their first pair of Manolo Blahnik’s were the only things that mattered.
As you can imagine, it was a shock when at just 20 years old I was diagnosed with a rather weird yet severe condition and my immediate reaction was “WTF”, a serious #FML moment. (Though hashtags weren’t a “thing” back in 2004!)
I had heard of a thyroid gland, and my Dad had already developed an underactive one, so I was vaguely aware of the existence of this mysterious gland that lived in ones throat/neck region. But I really did not have an ounce of understanding of its purpose.
Never often needing to drag myself to my GP, my Mum had noticed a change in me and after missing three consecutive periods and not being pregnant (trust me – I did check!), I decided it was time to visit my GP.
Apparently I had a bunch of symptoms, and a blood test form was in my hand within a few minutes of sitting in my doctor’s chair. I passed out at the hospital later that day mid-blood test (I think the worry mixed with the scratchy feeling of a blood test sent me over the edge!).
At 8:30 the very next morning, my mum answered the phone and got me straight out of bed to speak to my GP who was on the other end. I’ll never forget the look of fear on my Mum’s face as she passed the phone to me.
I became instantly hysterical as my doctor began talking, and he asked me to come to the surgery as soon as possible to discuss my blood test that I had less than 24 hours prior. I remember being so distressed, setting my Mum off in to a worried state also. Neither of us knew what was going on but my Mum drove me to the surgery straight away.
I had an overactive thyroid. But not just an overactive thyroid, but an insanely overactive gland to the point that my lack of menstrual cycles indicated my body had literally begun to shut down. Scary ey?
My blood pressure was high too, resulting in an immediate drug concoction of beta blockers and of course the meds to start getting my thyroid to behave.
I remember asking the what, why and how, and being told there is no exact science of why an overactive thyroid occurs. Sometimes it is through shock – such as an accident or pregnancy – or poor immune system – but my case completely baffled every endocrinologist I saw over the coming months.
My GP reassured me saying overactive thyroids are treatable and can be “back to normal” in six weeks. However, to be on the safe side he referred me to the endocrinology unit at the hospital.
I remember texting a handful of friends and some instantly were very excited for me about the fact I was apparently going to become ‘skinny’ (as though that was a good thing?) – I was a size 12 at the time so a little curvy but not enough to get excited about losing weight.
In the defense of these “friends” (some who are off my radar on a permanent basis – fyi), it highlighted the instant lack of understanding about the thyroid gland. When you have a thyroid condition the first thing people always refer to is “is that the one where you lose weight or put on weight?” It’s not anyone’s fault for not knowing, but it still makes my blood boil because it is so much more than that. In fact, I put on weight. I didn’t lose weight with my overactive thyroid which baffled most people I found myself explaining to.
This is such a key reason for why I working with the British Thyroid Foundation. There is such a lack of understanding about the thyroid gland – it is just so soul destroying when people focus on the fat/thin aspect, because I suffered such adverse side effects from treatment because of how extreme my case was.
Six weeks passed and I had made no progress. For the next 18 months I was passed along many endocrinologists and had countless blood tests every few weeks.
Treatment wasn’t working and having seen top thyroid specialists throughout the process, no one knew what to do with me and my health was now at severe risk.
By this point I had gained four stone in weight from the drugs. I had lost a lot of hair – my hair thinned drastically. My eyes had also started to protrude. My head was constantly fuzzy and I felt as though I had flu-like symptoms all the time. My neck felt so puffy too. My heart felt like it was constantly racing and my hands were always shaking.
Regarding my weight, hair, eyes, broken nails, poor skin etc, I remember asking so many questions about what I could to help – but I could never get a straight answer. Everything was about trial and error, which was draining.
There was a lack of care for side effects throughout the process and I was exhausted from the amount of time I was in clinic and even the frequent blood tests were p*ssing me off. I had spent a lot of money on prescriptions too (because hyperthyroidism is technically a temporary condition and doesn’t warrant free prescriptions on the NHS).
Having progressed my marketing career in to magazine publishing I was determined to not let my health get in the way of that. Working in those fashion-led environments full of beautiful people was not a confidence booster.
My confidence deteriorated from how I looked in the mirror. Friends and family may now recall that I barely surfaced for a year or so. There were only a handful of friends I’d be willing to see socially, and I would fret about any large social gatherings I’d have to attend. I felt low that so much time had gone by and my body was still trying to run itself in to the ground. By now I hated the world of science and medicine.
The only solution left on offer, seeing as my health was now at great risk, was to remove or kill off my thyroid gland completely.
I was offered surgery, but I opted for the radioactive iodine treatment instead, which was quite a scary option seeing as I had to be in isolation for a week, and have a whole list of do’s and don’ts such as to not wash my clothes in the same wash as my Mum’s clothes, or wash up my cutlery in the same dish water as hers, or go near children etc. I couldn’t come in close contact with anyone, let alone sleep in the same bed as anyone else.
It was also very weird (and funny to some) that I had to carry a card in my purse to confirm I had received radioactive treatment, in case I set off any security alarms, especially at airports. How embarrassing would THAT have been?!
The next 6 months or so was still a game of trial and error, now that my thyroid gland was slowly dying. I had to start taking thyroxine to make up for that hormone I producing less and less of.
Every 4-6 weeks I was monitored, and saw my thyroxine dosage prescription gradually increase every visit, until I was allowed to take the maximum – proving that my thyroid gland was no longer active.
I instantly felt better. My fuzzy head cleared, my eyes no longer protruded and other side effects started to subside.
When my levels were balanced, I showed signs of being able to lose weight, to which I then pro-actively began a realistic diet and exercise regime. As the weight dropped, my confidence grew. I continued to look after myself, managing to lose all of the weight I had gained – a total of four stone (Yikes!)
I felt like a new person. I was happy again, and my skin, hair, nails etc all improved. I enjoyed a new lease of life. I enjoyed socialising, holidays, shopping for fashion – all the things I loved before.
I now have the function of someone that has an underactive thyroid, because I don’t have a working gland to produce any level of thyroxine, meaning I have gone from one extreme to the next.
There are days where I feel sluggish and very tired, and days where my body just doesn’t want to function.
The best advice I can give any fellow thyroid sufferer (for both mind and body), is to maintain a busy schedule (work AND play!) to keep your brain ticking and your body energised. Look after yourself as best as you can – even if it means getting up 10 minutes earlier to walk to your office instead of getting the tube or bus. Surround yourself with those that best inspire you.
I would be lying if I say it wasn’t hard to maintain a healthy weight. I do have to work harder than others to keep fit and healthy – so I exercise as much as I can, I look after my skin and I have started to follow many food bloggers, finding recipes and foods that are not just about weight control, but are full of nutrients and good for our bodies – for example I eat a lot of bananas and I include pumpkin seeds on so many of my meals – including homemade muesli, salads and cakes. I have learned to find foods that provide me with what my body needs, as a result of not having a working thyroid gland.
I bet most of my friends and family forget that I’ll always struggle to shift the Christmas half stone – because for a few years now I’m in a stable place where my thyroid – or lack of – won’t affect my health or be a conversation point anymore.
For those of you suffering with any thyroid condition, at any stage, please don’t give up. I promise you that once your body finds its happy medium, you will feel better in yourself and will have a positive outlook on life. It just takes a bit of time, some trial and error and the occasional early night to ensure you get in enough beauty sleep. 😉
And who knows – you may someday run a marathon – like I did in London last year. A grueling challenge I never thought I’d do but is by far the biggest achievement of my life. Ten years ago I would never have believed I could be here now happily clutching on to my London Marathon 2014 medal.
Here is a brief science lesson, for those of you need a little level of understanding…
Your thyroid gland produces hormones that control every single cell in your body.
If you produce too much hormone (overactive thyroid or hyperthyroidism) your body is over working itself – increasing metabolic rate and blood pressure. If you imagine everything over-working itself (i.e. symptoms can include weight loss, regular/loose bowel movements, feeling hot etc) until your body eventually gives up from the pressure. Overactive thyroid glands can sort themselves out (with the help of a few weeks of meds) but sometimes they don’t, as per my experience.
On the other hand, an underactive thyroid (hypothyroidism), does the exact opposite – it slows everything down because it isn’t producing enough hormones. Your metabolic rate is slow, your blood pressure is low, and the side effects can include feeling tired, sluggish, finding it easy to gain weight, feeling cold etc. Although thyroxine helps to replace the missing hormones, lifestyle choices can certainly help as I have previously mentioned.
As I have said, this is a very personal subject to me, but one I have chosen to share with you as a result of my short film. If I can help or inspire at least one other thyroid sufferer out there, then I can be assured taking part in the British Thyroid Foundation short-documentary was a good decision.
Please do not hesitate to share my story or video with anyone you know who could be suffering with a thyroid condition. I’m more than happy to be reached out to for confidential conversation – even if it is to recommend food blogs or for general thyroid chit chat. 🙂
Thank you for reading, and thank you for watching.
For more information about all things thyroid, and to view films about other thyroid conditions please visit www.btf-thyroid.org