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Marianne Rhodes

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I am running Brighton Half Marathon 2018 for British Thyroid Foundation because I have Graves' Disease and I want to support BTF

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British Thyroid Foundation

We support people with thyroid disorders to improve care and awareness in the UK

Charity Registration No. 1006391

Story

Thanks for taking the time to visit my JustGiving page.

I want to give you a bit of a back story so you can understand what someone with Graves' Disease experiences as so many people suffer in silence and so many people know so little about it.

Let's go back to 2014 - I was pregnant with my first child, married and working a full time job as a Computer Technician.  I was happy, healthy, had no health problems and life seemed perfect.  I'd always been thin/petite, had a pretty good appetite and got away with eating whatever I wanted!

Fast forward to after the delivery of my beautiful daughter Erin in September 2014 - my life had changed dramatically but not just because I became a mother but for reasons at the time I didn't feel, understand and didn't know.

For the months following the birth of my daughter I suffered so many issues that now I look back now and wonder why I didn't realise something was wrong at the time.

* I was sweating badly at night, waking up soaked - I put this down to my body getting rid of all the water it had stored around Erin but it just continued for longer than seemed normal.

* I suffered from insomnia - not hard when you are breastfeeding a newborn baby but I felt so tired all the time, I had no energy but yet I still was struggled to sleep when I had the chance.

* I felt like I had a headache everyday - nothing seemed to clear it, it wasn't a banging headache just a niggle until I did something strenuous.

* I started becoming quite agoraphobic, I didn't want to go out the house, I struggled to take Erin out most days, hated being in social situations, sweated ridiculously when people came round and just felt so anxious all the time, worrying uncontrollably.

* I'd lie in bed every night and REALLY feel my heart beating, it felt like it was going to burst out my body, like all my veins were pulsating so hard you could hear it or see it.

* DO NOT READ IF YOU DON'T LIKE TOO MUCH INFORMATION - I was going to the toilet (Number 2s) multiple times a day!  I'd always been a once a day, in the morning regular kind of girl.

* I had an insatiable appetite, for the first time in my life I'd have midnight....well and 2am.....and 4am......6am and every other hour snacks, I was so hungry all the time, even if I'd just eaten!

* My hair was falling out and I don't mean normal amounts - I'd block up the plughole whilst washing my hair!  I thought I'd just over bleached it having that peroxide long hair I'd for some reason decided to go with at the time.

* I'd gone back to my pre-baby weight very quickly!  I'd congratulated myself and mentally agreed with all the other mothers who'd said "Breastfeeding helps you lose your baby weight".

I was still having regular visits from the health visitor and one day she asked me if I was okay and I was a bit tearful and anxious so she asked if I'd do a Post Natal Depression questionnaire.  I agreed and so filled it out - she checked it and said that she thought I might be suffering from Post Natal Depression as I seemed a bit down so they set me up some Cognitive Behaviour Therapy sessions on the phone.  After an initial consultation they said I didn't have Post Natal Depression but that I was just suffering from anxiety.  I didn't think anymore of it at the time.

Fast forward to January/February 2015 and all these symptoms were still happening, I had put all these symptoms down to just being a new mother struggling to get to grips with first-time motherhood.  It wasn't till I started shaking that I realised something was wrong, my hands would constantly shake, not badly but they were shaky.  So, as most people do in this day and age, I turned to Google and looked up shaking hands - a few suggestions popped up and I scanned the information on them feeling a little disheartened that I hadn't found anything, until I read up on Hyperthyroidism....it hit me like a tonne of bricks....I scream to my husband at the time that I knew what was wrong with me and rattled off the symptoms which matched everyone of mine.

The next day I eagerly awaited 8am to ring the doctor to make an appointment and with all my symptoms written on my hand I headed to the doctor to confirm.  I didn't mention Hyperthyroidism and let him make his own decision based on my symptoms, he sent me for a blood test and it confirmed I had Hyperthyroidism.

So if you're not bored already of this story then good on you, there's still more to come!!

I was referred to a specialist and more bloods taken, I had a Radioactive tracer put in my blood so they could scan my Thyroid to check there were no lumps.  They once again confirmed I had Hyperthyroidism but namely that it was Graves' Disease - the most common form of Hyperthyroidism.  To explain what this is as simply as possible - Graves' Disease is an Autoimmune Disease, your body believes your Thyroid is a foreign body/virus/bacteria and so attacks it, your Thyroid produces more Thyroid Hormones as a result and this is why everything goes into overload, including your heart which speeds up.  Because it had been left undiagnosed for so long I had Thyrotoxicosis - when you have excessive amounts of Thyroid Hormones being produced - this can actually be life threatening if left undiagnosed.  I was put on a high dose of Beta Blockers to slow my heart rate and reduce my tremor which would then hopefully lessen the Anxiety I felt.  I was also put on a dose of Carbimazole - an anti-thyroid medication which tries to stop the body from over-producing Thyroid Hormones.

So now, 2 years down the line - my daughter will be 3 in September 2017, I am now happily divorced, I'm now a Professional Singer and I've been in remission for a little over 8 months; I was removed from Beta Blockers early on and then about 7 months ago I was removed from Carbimazole and all had been looking fine but there is no cure for Graves' Disease, no magic wand that'll ever make it not be a massive part of my life.  I can be in remission but there is always a likelihood it'll come back, especially within the first year and sadly I believe it is going to as some symptoms have come back and one of my levels has dropped which probably suggests a relapse.....I have been told to wait till October to get my next blood test done.  If, and I'm trying to be positive here but it's not easy, if it does come back my only options to deal with this for the rest of my life are....

* Have Radioactive Iodine treatment - this kills part of your Thyroid and so stops it from producing so much Thyroid Hormones.   This doesn't come without it issues or risks - firstly I would have to stay away from young children...yes including my daughter and pregnant women for at least a month, I would have to be hyper clean so as not to share any of my Radioactive contaminated bodily fluids with others and it could mean that I would go the opposite way - Hypothyroid and be on medication for the rest of my life and battle with my weight...something that doesn't feel me with any happiness what-so-ever after putting on nearly 2 stone from just the Carbimazole (annoyingly enough I had just congratulated myself in getting back to my original weight...dunno whether this was because I have been running or my Thyroid kicking off again!)

* Have a full or partial thyroidectomy - they surgically remove part of all of your thyroid gland.  Hypothyroidism will be the ending for a full and highly likely with a partial.  Also complications including hoarse throat, loss of voice, changes in the voice.....being a singer this doesn't bode well at all!

Both of these options I disagree with as I believe they aren't fixing the root issue that causes Graves' - the Immune System.  The other option is to go Gluten free, 'loads-of-other-stuff' free and take loads of odd sounding tablets....I'm going to go with that one!  Sounds safer to me!

Anyways - that's me, please follow me on my Graves' Disease journey and my journey to raise money for what I believe is an exceptionally important charity -  I want to help raise money for British Thyroid Foundation as I wish others knew more about Thyroid health and Thyroid Disease.  So little understanding around me has made this journey far longer and harder than it should've been.  Information that BTF supplies helps me and others so much and I want more to know about it so others can have that support at the beginning of their struggle with any Thyroid Disorder.

Big love and blessings to you all for reading my hugely long story and please do donate to this wonderful charity.

Mazz xx


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