As I mentioned in my previous post, I was diagnosed with Graves' disease in 2013, just before I turned 20. For those of you who don't know what it is I'll give you some background. Graves' disease is an autoimmune disorder where the body attacks the thyroid causing it to produce too much thyroxine, resulting in an overactive thyroid. The symptoms are that of an overactive thyroid so include, heart palpitations, excess sweating, hand tremors, hyperactivity, muscle weakness, skin warmth and moistness, weight loss, hair loss, and a goitre. Yeah, I know it's a lot... I guess it's safe to say the thyroid pretty much controls the entire body. Not only that, but as many as 80% of people with Graves' develop eye problems. And guess who was lucky enough to be included in that 80%? You guessed correctly little Timmy, yours truly.
I've suffered from many symptoms of hyperthyroidism but I think the worst of them have been the eye problems. So, from what I understand (I could be wrong) with Graves' disease, the body also attacks the healthy tissue surrounding the eyes. This leads to the upper and/or lower eyelids retracting, which leads to dry eyes as more of the eye surface is uncovered. Then, according to my eye specialist, knowing this, the eye attempts to rectify the dryness by producing more tears. Now when I say more tears I'm talking bucketloads. It's embarrassing. One time, on my way home from work, as I stood at the bus stop on a sunny day, my eyes were streaming and there was nothing I could do to make them stop. A teenage girl approached me to ask me if I was okay because she honestly thought I was crying. I had to explain to her that I suffer from something that makes my eyes do this. Did I mention the tears can start randomly and that the sun and the wind both irritate them?
I almost forgot the bulging. So, if that wasn't enough, I have also suffered with a mild case of bulging; it isn't too bad as my doctor said that because I'm young and the muscles in my face are still firm, it controlled the bulging a bit. Instead, I always look surprised and it is not fun, especially when people point it out. Also, as the disease attacks healthy tissue in the eyes, the fat cells can replicate. So now, I have bulging, watery eyes, with a whole heap of fat on my eyelid. Luckily I've never suffered with pressure on my optical nerve (which can lead to blindness) but I think it's fair to say that I look crazy and this is the cause of the actual struggle I face - the struggle with my mind.
Looking in the mirror is no fun when you hardly recognise your reflection. I stopped taking photographs altogether so selfies and group pictures are out. I haven't wanted to see anyone in months and being a final year university student gave me the excuses I needed to stay out of public. Every time I need to go out I reach for my makeup to cover up the way I think I look but because of my watery eyes, half the time my makeup just runs off even before I can leave the house which leaves me more broken than I was before. So, to avoid the heartache, I stay at home where I know I don't need to cover my face and where I know no one will notice the changes I see in my appearance.
They don't explain to you that an illness such as Graves' could have such an impact on you psychologically but I really wish they had. At one point I remember telling a doctor (not my regular consultant) about my concerns regarding my eyes for him to languidly reply "well, they look fine to me". I replied "but you don't know me! I know myself and I never used to look like this". You know what he did? He sighed and said "okay well, I guess I could refer you to an ophthalmologist" but of course he didn't. At that point I was really struggling and my mum was worried about me so she called our GP and told her what was going on, then my GP rang me and told me not to worry about it because she was referring me herself and making a complaint to the hospital. I've had it rough.
I was referred to Moorfields Eye Hospital late last year (2015), and since then I've been seen there twice. Both times the doctors have asked me why my endocrine consultant didn't refer me as soon as I was diagnosed. Luckily, my thyroid eye disease is no longer active so it isn't getting worse but my eyes still show the changes. My ophthalmologist team at Moorfields told me that sometimes a total thyroidectomy can solve the eye issues but there is no guarantee. One doctor told me to take Selenium so I have been doing that since my last appointment because it may be able to help. I can't say I've seen a difference but I'm not sure. Also once I have my operation, I'll be seen at Moorfields again in August to see if my eyes are getting better, if not they will fix it. At least that's what the senior doctor there said, he wasn't clear on what treatments would be available to me but we'll cross that boat when we get to it and I'll be sure to update this blog when I get to it.
Tuesday, 31 May 2016
Sunday, 29 May 2016
My thyroid: the story so far
In a few days I will be undergoing surgery to remove my thyroid ( a total thyroidectomy) and I've found great comfort in reading others' stories about their personal experiences with the process. So, I decided on a whim that I would create my own blog dedicated to documenting my thyroidectomy to help others in the same situation as I. But first, I'll give you a run down of the story so far.
In 2013, at 19 years old, I went to see a nurse for a routine check up. While checking my blood pressure, she noticed that my pulse was very fast and asked if maybe I was nervous about having it taken, as possibly that could be the reason behind the elevated heart rate. She advised me to get an appointment to see my GP as soon as possible and genuinely seemed concerned. I had always had a fast heart rate; I first noticed it at the age of 10 when a teacher got us all to check our heart rates. I first thought I had counted wrong when everyone else said a number much lower than my own, but then in following years I just came to terms with the fact that my heart just beat faster than everyone else's. I didn't think it was a big deal, I just thought that was the way I was made.
So, I booked an appointment to see my GP and as she checked my pulse she asked me if I had been running or if I had just had coffee, to which I replied "no, that's just how fast it beats". At that point it was at its fastest at about 110 bpm. She immediately sent me to the hospital for a blood test and she called me in for the results the following morning. I couldn't understand what all the fuss was about because I thought, in all honesty, I was fine and everyone else was just overreacting. When I saw her for my results my mum came with me and she explained to us that I was displaying signs of an overactive thyroid, with my T4 levels being over 100 (the normal range is 12-20). I didn't even know what that was and what it did so my GP explained all of that as well; also noting that I had developed a very small goitre too. I was prescribed then and there with Carbimazole for my thyroid, the beta-blocker, Propanalol, for my pulse, and referred to an endocrinologist.
A couple weeks later I was seen by a consultant at University College London Hospital (UCLH/UCH) and was diagnosed with Grave's disease. I've had a lot of issues with the care I've received while being a patient at UCLH as for the majority of the time I wouldn't be seen by my endocrinologist so for years I had my bloods taken and a couple days later have a new doctor adjust my medication. My thyroid has NEVER been stable and so my goitre got increasingly larger month by month, and I suffered from an array of other symptoms including: hair shedding, excessive sweating, problems with my nails, mood swings, and the biggest pain of my life, thyroid eye disease.
I used to suffer from watery eyes when I would lay down and the occasional dryness but it was always very mild. However, now, the slightest breeze results in tears streaming down my cheeks, my eyelids are puffy due to extra fat, and they bulge slightly which makes me always look surprised. I've suffered psychologically with these symptoms because, of course, it shows in my face so I always refrain from making eye contact or even going out in the first place. I've seen a specialist at Moorfields Eye Hospital after being referred by my lovely GP and I have been told that I will receive treatment once my thyroid is removed as the symptoms may lessen after this. I really do hope they do because this has been what has impacted me the most.
In the coming days and weeks I will continue to post my progress in the hope that it may bring comfort to someone else about to go through the same procedure.
In 2013, at 19 years old, I went to see a nurse for a routine check up. While checking my blood pressure, she noticed that my pulse was very fast and asked if maybe I was nervous about having it taken, as possibly that could be the reason behind the elevated heart rate. She advised me to get an appointment to see my GP as soon as possible and genuinely seemed concerned. I had always had a fast heart rate; I first noticed it at the age of 10 when a teacher got us all to check our heart rates. I first thought I had counted wrong when everyone else said a number much lower than my own, but then in following years I just came to terms with the fact that my heart just beat faster than everyone else's. I didn't think it was a big deal, I just thought that was the way I was made.
So, I booked an appointment to see my GP and as she checked my pulse she asked me if I had been running or if I had just had coffee, to which I replied "no, that's just how fast it beats". At that point it was at its fastest at about 110 bpm. She immediately sent me to the hospital for a blood test and she called me in for the results the following morning. I couldn't understand what all the fuss was about because I thought, in all honesty, I was fine and everyone else was just overreacting. When I saw her for my results my mum came with me and she explained to us that I was displaying signs of an overactive thyroid, with my T4 levels being over 100 (the normal range is 12-20). I didn't even know what that was and what it did so my GP explained all of that as well; also noting that I had developed a very small goitre too. I was prescribed then and there with Carbimazole for my thyroid, the beta-blocker, Propanalol, for my pulse, and referred to an endocrinologist.
A couple weeks later I was seen by a consultant at University College London Hospital (UCLH/UCH) and was diagnosed with Grave's disease. I've had a lot of issues with the care I've received while being a patient at UCLH as for the majority of the time I wouldn't be seen by my endocrinologist so for years I had my bloods taken and a couple days later have a new doctor adjust my medication. My thyroid has NEVER been stable and so my goitre got increasingly larger month by month, and I suffered from an array of other symptoms including: hair shedding, excessive sweating, problems with my nails, mood swings, and the biggest pain of my life, thyroid eye disease.
I used to suffer from watery eyes when I would lay down and the occasional dryness but it was always very mild. However, now, the slightest breeze results in tears streaming down my cheeks, my eyelids are puffy due to extra fat, and they bulge slightly which makes me always look surprised. I've suffered psychologically with these symptoms because, of course, it shows in my face so I always refrain from making eye contact or even going out in the first place. I've seen a specialist at Moorfields Eye Hospital after being referred by my lovely GP and I have been told that I will receive treatment once my thyroid is removed as the symptoms may lessen after this. I really do hope they do because this has been what has impacted me the most.
In the coming days and weeks I will continue to post my progress in the hope that it may bring comfort to someone else about to go through the same procedure.
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