A visit to Moorfields Eye Hospital

For those of you who don't know, I've suffered with Thyroid Eye Disease for a while now and yesterday I was seen for the third time at Moorfields Eye Hospital and the first time since my total thyroidectomy two months ago. Please read this post first for a background on my TED. 

So as you can probably tell by the name, for those of you not from London, Moorfields is a specialist eye hospital and I believe quite prestigious seeing as though it is an NHS hospital (but of course I am no expert and could very well be wrong). The last time I was seen was in March and was told to start taking Selenium, a natural mineral, as some reports have said that this may improve the symptoms of TED although it has not yet been proved. They also prescribed me with lubricating eye drops and told me that I would be seen again after my thyroidectomy as there was a chance this would help my TED, so that's what happened.

Whenever I go to Moorfields I am first seen by a nurse who checks my eyesight (exactly like what you do at the optometrist) and then checks the pressure behind the eye (or something to that effect) with this little contraption. Funnily enough the nurse I had was the same one from my last appointment in March and she remembered me because I was scared to get the pressure taken in my eyes LOL. It's the weirdest thing though! It looks like a little gun and they hold it to your eye, press the trigger, you hear the click, and feel the faintest thing for a millisecond but there's no pain. I do believe it makes contact because I saw her testing it out and when she pressed the trigger the smallest blunt pin-type thing came flying out and went back in. I really wish I could explain it because it really is fascinating. But nonetheless, I was afraid of it and kept blinking and squirming about like a child. I must reiterate that it doesn't hurt but knowing that it's going simply near my eye freaks me out. They also do other tests, like shining a light in your eyes to see the back of it and also putting yellow dye in them and shining a blue light in them - but what that is for I really don't know.

The doctor that I saw was really nice and explained a lot to me, but it did come down to the fact that I will have to have surgery on both my eyes next year at some point. TED usually gets bad very quickly but then becomes stable and then takes its time to improve; it won't go back to normal but they want to see me when my body has done all it can to solve the issue before they proceed with surgery. I'm not shocked because I've known that TED isn't something that your body can reverse on its own and I mentally prepared myself for surgery a long time ago. My right eye is worse than the left in terms of bulging but luckily, because I'm young (22), my muscles are still tight and so have kept my eyes from protruding too much. So clinically, my TED is mild and I will require 2-wall decompression surgery, where some bones will be removed around my eye socket to allow my eyeballs to fall back into my head and I believe at the same time, they will remove the large amount of fat that has gathered on both upper eyelids. Doing this should pretty much fix everything and the dryness and wateriness should stop (thank God!). 

I'll be seen again on 1st March 2017 to check them again and most likely book a date for surgery. My doctor prescribed me with more drops, that I don't really think work but then again I don't use them often enough, and told me to continue with my selenium. My eyes have improved but I really don't know if it's the selenium, the thyroidectomy, the TED calming down, or a combination of all three; because there was a time I would put foundation on, walk away from the mirror for a minute, come back and it would all be gone from involuntary tears. I still suffer from the wateriness but it isn't as frequent as it was and the surface of my eyes are dry apparently although I haven't noticed it. The only other symptom, apart from appearance, is that they are really sensitive to light and if I forget my sunglasses I feel like a vampire. 

All in all, I'm feeling better about them and myself and I know that it can only get better from here. I've got some time to go yet before my eye surgery so I'll only update you all on my eyes at my next appointment in March.

Take care, and stay healthy x

2 months post thyroidectomy update

So, it has been 8 weeks since I had my thyroidectomy and I can honestly say I feel like myself and have done for a while. I was lucky because the first dose of thyroxine seemed to have fit my body's needs perfectly so I didn't suffer much with that.

What I will say, which is something I never thought would still be happening two months post, is that my scar is still actually quite sore to the touch. It isn't overwhelming but it does feel like a small pinching pain which is very uncomfortable so it means that I can't massage the area too much, but I've started using Mederma scar gel and ScarAway silicone sheets this week as well. I stated previously that I had been massaging my scar with coconut oil a few weeks after my operation but I did use Bio Oil as well for a couple of weeks after that until I bought the two products above. I'm not sure how and if they will work for me but I've heard some good reviews about them and I'm very keen to use the ScarAway sheets because my scar is becoming slightly raised and I'm not sure whether it is just part of the healing process or if it is going to stay like that so I'd rather get ahead of it now. The area just above the scar is also still numb which is very uncomfortable combined with the pinching pain I get from touching the area; hopefully that will disappear soon.

In other news, I had a blood test a couple days ago to check my calcium levels but I'm yet to hear from the hospital in regards to the results of that test. I was told that my calcium levels were within normal range at my last appointment and to slowly decrease my calcium supplements but as of right now I am not taking any. Every time I take one it gives me the worst stomach cramps so I decided that there was no point pushing it. However, I still occasionally get tingling sensations in my legs and hands which is annoying because as I said, my body doesn't seem to be able to handle the calcium supplements. I used to take Vitamin D supplements daily before my surgery so I think I will start to do that again and hopefully discuss any other options with a doctor or nurse.

Also, I'm not sure if I've spoken about this but I have still been suffering with my thyroid eye disease as well. I will say that it isn't as bad as it was in the past but it definitely hasn't disappeared completely which, even though there was a chance that wouldn't happen, is what I was hoping for. I have been taking selenium supplements since about March at the recommendation of the doctor at Moorfields Eye Hospital but I cannot be sure of their being the reason my eyes have improved. My eyes can still be quite watery but the dryness hasn't been an issue for a while now. Obviously the appearance is still the same as my upper eyelids have excess fat in them which will not vanish instantaneously. They are also still bulgy to me so I don't know if they've lessened, but if they have it's not been by much. I have an appointment at Moorfields again next week to analyse them and discuss my options.

But it can only improve from here right?

Thanks for reading and take care.

One month post-thyroidectomy update

I cannot believe a whole month has passed; it seems like yesterday in my mind!

The scar has began to heal quite nicely in my opinion; it is a little raised in some areas but not as much as last week. I was left with a lot of glue on the site which I mistook for a scab initially but my doctor told me during my check up that I should take it off with warm water. So, during the course of last week I would hold a wet cotton pad on it for a couple of minutes and then more of the glue would come off. I must admit that I was afraid of it hurting but as long as the area was moist enough, it peeled off like PVA glue and I wasn't in any pain. If I did feel anything, I just held another wet cotton pad on the area for a little longer and attempted it a second time. There's still a very little bit left but that will continue to come off with regular cleaning.

2 weeks post-op: What I thought was a large scab was actually surgical glue

1 month post-op: Majority of surgical glue has now been removed

I have also been rubbing organic coconut oil on the area morning and night (when I can remember) to keep it moisturised. The booklet I received prior to my operation detailed that I could use E45 lotion or Bio Oil, but none of those appealed to me and, as I forgot to ask my surgeon about it during my last appointment, I thought I would try coconut oil as it is filled with vitamins and minerals. I am not sure whether it will work to minimise scaring but I was told from the hospital staff that the gentle massaging sensation on the area helps it in healing flat and softens the recovering muscles beneath the skin. I do have an appointment next Wednesday so I will ask my doctor more about it then.

In terms of pain, it does feel a little sensitive when I massage the oil into it even though I am doing it quite gently. It isn't excruciating but it does feel uncomfortable so it means I cannot massage the area for too long in one sitting. However, the movement in my neck has come back completely and I have no pain or discomfort when I swallow, as I did in the first week or so following my procedure. The area directly above the incision is still quite numb though, so it does feel very strange when I touch it but I am hoping that will go away soon and the feeling will come back.

I have continued to take my alfacalcidol (Vitamin D) and Sandocal calcium tablets but I will see the results of that next week. I am hoping my parathyroid glands have started working again because I haven't felt any pins and needles, cramps, or weird sensations in my hands since my dosages were upped. I REALLY despise the taste of the Sandocal though, I must be honest. It is supposed to be an orange flavour but I don't like anything dissolved in water, it never tastes right, to me. I have therefore increased my calcium intake and have been drinking more milk and eating more yoghurt but my appetite still isn't the same as it was.

Sadly, I don't think the thyroidectomy had any effect on my thyroid eye disease (TED) as my eyes continue to water regularly. I knew that there was a chance of it having no effect, and due to the hospital not getting my dosages right initially and leaving my TED to spiral out of control, I thought that would be the case but I was hoping to be proven wrong. As it stands, I am still taking my selenium tablets every day but even those aren't seeming to make any difference.

All in all, however, I feel very much back to normal and know I will only continue to improve.

Thank you for reading and take care!

NHS health care experience

This post is going to be dedicated to the care I received from the NHS after being diagnosed with an overactive thyroid in 2013. I know in recent years that the NHS has come under scrutiny and many people have worries about receiving heath care from it - I know I did. So let's get into my experience of receiving care on the NHS.

When I was diagnosed, I was lucky in that my GP got every test done quickly and I had a diagnosis only two days after seeing her. At the time, my local hospital, Whittington, had a very long waiting list to be referred to the endocrinology department but UCLH had a much shorter waiting time, which is why I went there. On a whole, the care I received there, in my opinion, wasn't good. After a couple of months, I was no longer being seen by my consultant but by more junior doctors who did not accurately record our meetings so I was being told different things every appointment and I honestly felt that my best interests weren't being looked after. Even when I stated to these doctors that someone else had told me something different to them and I was worried about certain issues, I felt dismissed and that they just called me in to change my dosage and get me out the door.

I told the last doctor that I saw that my eyes were getting worse (I suffer from thyroid eye disease) and he responded with "they look fine to me", which I thought was disrespectful as the whole appointment was him refusing to listen to my concerns. I had seen my face change slowly for the worst for about two years at that point, longer than the consultant had told me I would have to struggle with my thyroid in the first place. I told this doctor this and he said "well, I could refer you to an ophthalmologist". He said it like I was asking for too much but according to NHS direct, anyone diagnosed with thyroid eye disease (which I had been) MUST be referred to an ophthalmologist asap! This was not the case with me, I had to beg for it and he didn't even fulfil his promise. After calling the hospital and going in to see them, I was met with the same rudeness and total disregard for my wellbeing from the receptionist.

At this point I was very discouraged but my GP reassured me that she was looking out for me and referred me to Moorfields Eye Hospital herself. She also raised a complaint with the hospital but the result of this has been made unknown to me. However, the care I received from Moorfields has been good in my opinion; the doctors have given me more than enough information on my care and even alternative options to control the symptoms of my eye disease. I am still a patient there and will be seen in August to discuss the next steps to overcome this but from what I am aware of, my eye symptoms were made worse by the fluctuations of my thyroxine levels as a result of my endocrine team not being able to stabilise my thyroid.

In regards to my thyroidectomy at ULCH, after having my surgery scheduled, I was pretty much left to my own devices. It was only after having an accidental appointment booked by the hospital to see the surgeon that he noticed no one had checked my thyroxine levels since two months prior. It was a blessing in disguise as I wouldn't have been able to have my surgery done with an unchecked thyroid. In addition, there were problems I received on the day of my surgery which I spoke about in my surgery story, but my overall care from the nurses during my stay was top notch. They checked on me often and made sure I was comfortable. If I had any questions, they answered it to the best of their abilities and made the effort to reassure me that I would be okay. I even started crying on the last day (I was very emotional) and my nurse made sure to calm me down and try and reassure me that my symptoms were normal and treatable. An issue I had was my discharge process as my surgeon told me I could go home but the nurse seemed to have other information and told me another doctor, who was not in charge of my care, had to come and talk to me before letting me go. Again, I talk about this in my surgery story so I won't go into it in too much detail, but I was sitting around for hours. Also, I was not given much information on how I should care for myself at home and, having waiting around for hours, I forgot to ask many questions to my nurses.

I've suffered a lot with UCLH over the period of 3 years and I'm not happy with the overall care I received from the hospital. However, the NHS on a whole I think took care of me well as my GP and the doctors at Moorfields all explained things very well to me.

Living with Graves' disease

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.

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.