Graves’ disease gal in London

Going from hyperthyroid to hypothyroid.

Written by Camilla Manders

I took part in a short film for the British Thyroid Foundation last year, along with a handful of others that had suffered (or still coping) with a thyroid condition, by way of driving awareness to this mysterious butterfly-shaped gland in our necks, and in my particular instance, to prove that there is a happy outcome when an outgoing and social “butterfly” is diagnosed with Graves’ Disease at the age of 20.

A disease of any kind is never ideal, especially one of a discouraging term such as “Graves’ Disease.” No one wants to be hinted to being 6-feet under before understanding what it means.

My journey started in the year 2004. I was living at home, enjoying an active social life, shopping for the latest fashion, never missing an episode of Sex & The City and one day dreaming of owning a pair of Manolo Blahnik Mary-Janes (which I now do – after breaking the “shoe fund” saving pot).

One day, I confessed to my Mum that I hadn’t had a period for three months. I knew I wasn’t pregnant but alarm bells were ringing. Something wasn’t right and the last thing I wanted to do was to cause concern to anyone. I later confessed that I hadn’t felt 100% for some time…

The next day I managed to see my GP and within a few minutes I had a blood test form in my hand. My GP asked me lots of questions (identifying many symptoms I wasn’t even aware of), and I remember sobbing my way through my appointment at the fact there was clearly something wrong.

I passed out during my blood test that afternoon (I think the mixed emotions and the common ‘can’t-find-a-vein’ combination sent me over the edge).

The next morning, at 8:30am, the home telephone rang. It was my GP. Bursting in to tears, I passed the phone to my Mum where she was asked to bring me to the surgery. Panic had certainly kicked in by now.

I had Graves’ Disease – an autoimmune disease that attacks the thyroid gland causing an overproduction of thyroid hormones – subsequently creating hyperthyroidism.

The absence of my menstrual cycles was evidence to the fact my body had been under an immense amount of pressure and had started to shut down.

I was immediately put on medication, as well as beta blockers to try and curb my insanely high blood pressure. I was also signed off work straight away for a minimum of 2 weeks.

Feeling shocked doesn’t cover it. I had no idea what was going on. I had heard of the thyroid (I knew a few who had an underactive one) but I didn’t really understand what the gland’s purpose was – or the implications of Graves’ Disease.

My GP explained my situation was treatable, and that perhaps my body had experienced some kind of shock to trigger off my condition. He was confident that I could be back to normal in six weeks. To be on the safe side, he referred me to the endocrinology unit at my local hospital. Little did anyone know, my case was going to baffle every endocrinologist I saw over the coming months.

Feeling less hysterical but confused, I began texting a few friends the ‘news’. To some of their delight (and to my bemusement) I was apparently going to lose a few excess pounds and be able to eat what I want from now on. Not entirely the wisest words from ‘so-called’ friends, or even true in my case, but that just highlighted the lack of knowledge about this mysterious gland that so many of us had heard of, but never understood.

This is such a key reason for why I worked with the British Thyroid Foundation. There is such a lack of understanding about the thyroid and it is soul destroying when people focus on the fat/thin aspect. I’d like a reward for every time someone has asked “are you the one where you put on or lose weight?” I used to want the ground to swallow me whole, because I suffered such adverse side effects from treatment due to the high amounts of artificial drugs I was consuming.

I had made no progress within 6 weeks of diagnosis.

For 18 months, I was passed along to many endocrinologists and had regular blood tests. I began to become depressed from the fact treatment wasn’t working and no specialist knew what to do with me (or the side effects I was experiencing – to which I felt no endocrinologist cared about).

I had now gained 4 stone in weight. I lost a lot of hair – my hair thinned drastically. My eyes had begun to protrude. My brain felt foggy and my neck looked swollen. My heart felt like it was constantly racing and my hands were always shaking.

My confidence had deteriorated. Having not long begun my career in marketing, within the fashion-led environment of glossy magazine publishing, I was surrounded by beautifully presented women. I was close to caving in.

Now I’m open about the subject, some of my family and friends now recall that I barely surfaced during this phase of my life. There were only a handful of people I’d be willing to see socially.

At every appointment I’d be tearful, begging for a way to cure my condition and fix my side effects. I was so unhappy.

My specialists finally agreed enough was enough. The only solution left to offer, seeing as my health was now at great risk, was to remove or kill my thyroid completely.

I was offered surgery, but I opted for the radioactive iodine treatment. For me, at my young age, I was advised to go with this less invasive option – and to be honest, I didn’t like the thought of anyone attending to my throat with a knife (unless it was the only option left).

For months afterwards I had to carry an “I’m radioactive” card in my purse in case I was to set off any security alarms (sounds hilarious in hindsight). I had to stay in isolation for a week and adhere to a strict list of do’s and don’ts for weeks. I couldn’t even hug anyone for what felt like a lifetime!

For two weeks after this highly potent treatment, I felt terrible. I couldn’t sleep, I couldn’t get comfortable, my temperature was all over the place, and I felt nauseas.

Suddenly, I felt an immediate sense of change. Having felt awful for so long, I was on the road back to ‘normality’. It’s difficult to explain, but any fellow sufferer understands the feeling and emotion.

The next 6 months was a game of trial and error. My body was coming away from being hyper, to becoming hypo, and I began to take a daily dose of thyroxine to make up for the hormone I was no longer producing. I was monitored monthly, with gradual increases in my new daily medication, until I was allowed to take the maximum daily allowance – a sure sign that my thyroid gland was no longer active.

When my levels were balanced, I felt better. My fuzzy head cleared, my eyes no longer protruded, and other side effects started to subside. My hair, skin, and nails improved too (although they’ll never be the same again – which I can cope with!).

I was able to see signs of losing weight, which gave me confidence to up my exercise game and count my calories (I’d lost all dieting hope until this point) and slowly, but surely, I managed to lose all the weight I had gained – four stone!

Like a bouncing Bambi I found a new lease on life. I felt like a new person who had been given a chance to start enjoying my youth again – holidays, shopping, socialising etc. I was still only in my early twenties!

As I don’t have a working thyroid at all, I am now the patient of hypothyroidism, experiencing the certain woes of an underactive thyroid sufferer. Talk about going from one extreme to the next!

I’ve learned it’s okay to have days where I feel sluggish, tired, and heavy! I’ve learned to maintain an active busy life to keep my mind active and my body energised. I learned very quickly that we ‘hypos’ have to work harder than others to stay fit and healthy so I became motivated to look after myself, implementing a healthy lifestyle for a happy body and mind. Don’t get me wrong, I do occasionally enjoy the odd Five Guys burger and G&Ts!

I follow many online food bloggers for satisfying recipes full of nutrients and vitamins. I look after my skin, hair, and nails with regular pampering sessions at home, and I exercise as much as I can. If I’m working late a lot, then I’ll try and walk to meetings and to my train station after work (instead of getting the underground).

By way of proving to myself that I can be fit and healthy, I took part in the London Marathon last year. I feel immensely proud of myself for running 26.2 miles, and my medal is my most treasured item.

I started a lifestyle blog Flamingo Monroe – a kind of self-therapy and a place where I upload a lot of my own self-created recipes. I often force myself to write a post or research a new topic when I’m having a down day, by way of keeping positive.

I’m certainly no superwoman however. I need to remember to have as much beauty sleep as possible and have enough chilled time to recharge – the latest series on Netflix works for me, as well as simply scrolling through pages of pretty Instagram feeds.

My one piece of advice is to not give up. I’m living proof that once your body finds its happy medium, you will feel better in yourself and will have a positive outlook on life. Also, try and surround yourself with happy people who inspire you.

My chapter took longer than ideal but it was circa 10 years ago. I was too young and far from prepared to be dealt such an ordeal, but I powered through, albeit with a few cracks here and there.

This isI’m enjoying a busy London lifestyle, a marketing career in magazine publishing and I thrive on spending time with family and friends. On an occasional down day, which can still happen, I just remind myself that I ran a marathon last year or think of something new to blog or Instagram about!

Please share information about your condition with loved ones.  I wish I had done this, by way of getting them to understand what my body was going through. To some, the conversation was only about gaining/losing weight, which was narrow-minded – but that’s because they didn’t have the knowledge.

Thank you for reading, and thank you Hypothyroid Mom for having me!

Camilla

flamingomonroe.com