Follow-up number 3...

Hi World,

So, it's been almost 5 months since I had my total thyroidectomy and I thought I would update my blog on how I've been doing since:

In a nutshell, I'm doing well. My scar is healing very nicely in my opinion and my thyroxine levels have, to the best of my knowledge, remained steady and stable. But, that in no way means that I've been perfectly fine.

I had what was supposed to be my last follow-up appointment on the 19th of October and I was kind of dreading it because I know I've had trouble with my hospital (UCLH) to take me seriously when I've had a complaint. But anyway, I went and when my surgeon asked me how I was feeling, I told him truthfully: that the tingling in my hands and feet still hadn't stopped, I was constantly suffering from muscle cramps, and I regularly had bouts of my tummy simply being unsettled. He told me that what I described was common with low calcium levels and sent me for another blood test because no one had tested my calcium levels in time for that appointment - which, I noticed by the way.

Anyway, after waiting almost an hour in the waiting room to get my blood taken, I went home with his instruction of going back on my Sandocal Calcium supplements for the meantime. But, as usual, a week went by and no one had called me about my test results. I called the secretary to my surgeon and the surgical consultant and she was so unhelpful! She clearly didn't want to help me and wanted me off the phone as quickly as possible because she told me that my calcium was normal and there was nothing to worry about. I asked if I could speak to my doctor and she told me "No, he's in theatre all week." So, I asked to speak to a nurse and she said: "No, we don't have nurses here." A hospital with no nurses? Okay, love.

Anyway, I knew that something wasn't right so I asked her to send me a copy of my results (which, they should technically always do) and when I received it, I saw that there were flags on my calcium levels because, in actual fact, they're too low.

 I hate UCLH because they've done this to me twice now and I can never get through to the right person on the phone. I don't fault the doctors and nurses at all, but the administrative staff aren't medically trained professionals and definitely shouldn't be talking patients through their test results.

This happened the last time they tested my calcium; no one called me, I called and literally spoke to anyone who would stay on the phone long enough with me, and the woman told me it was fine and I should probably take the doctor's advice of coming off my supplements. But now, I can see that my parathyroid levels aren't where they should be either, and that needs to be dealt with.

I've had to book an appointment with my GP because, since I can't speak to anyone at the hospital. I'm hoping she can explain it to me and come up with an actual plan.

I have another appointment booked at UCLH for 30th November so I'm hoping I can get answers to my many questions. But this, is real life: life with the NHS.

Staciah xxx

Am I getting fat?

One of the things I was most worried about before my thyroidectomy was weight gain; I had heard many accounts of the process with some people stating that they did gain weight afterwards. I have been thin my whole life and have always loved the fact that I could eat as much junk food as I wanted and not gain any weight and I didn't want that to change.

So, did I gain weight after surgery? Yes. But did I get fat? No. Before my surgery I was about 133/134 lbs (approx. 62 kg) and I had been maintaining that weight for a good while, maybe 6 months or so, but so far I have gained about 8 lbs and, as of today, weigh 141.4 lbs (64 kg). I will point out that I haven't really been that active since I had my thyroidectomy as I just graduated university and am pretty much at home every day. Also, my diet isn't the most healthy and I pretty much eat whatever I can get my hands on. What I will say though, is that my appetite is still not back to normal and although I'm not eating the same amount in one sitting, I am eating more frequently. I did ask my doctor about this but he straight up said he didn't know why this was happening so I'll just have to wait and see for myself.

I'm 5'10 so I am quite tall and 141 lbs will look completely different on someone much shorter than me. Luckily for me, the weight seems to be just making me rounder and curvier in the right places so I'm quite happy about that. However, the speed at which it all happened was a little scary to me. About a week or so after my discharge, I realised that I was gaining weight really fast and went up to about 137 lbs initially (that's 5 lbs in one week). This was quite worrying because I thought that I would just continue to gain more and more weight until I was an elephant. But, luckily it did slow right down after that first week and since then I've only gained a little bit here and there.

As I said, I am a tall woman so I don't particularly mind gaining more weight, just as long as I can still fit into my clothes. But, I don't see myself gaining too much more since I have been thin my whole life and my dad's side of the family is too. But of course only time will tell.

Take care! x

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.

1 month hospital appointment

Hi everyone!

I had my one month post-op appointment yesterday (06/07/16) at the hospital and thought I would update you on the results.

In my 1 month update I discussed all the things I am still struggling with so if you haven't already read it, make sure that you do before starting this post.

As you may know, I have been struggling with my parathyroid glands and calcium levels since I had my thyroidectomy last month. However, today I got the good news that my calcium level is within range and my parathyroid function is slowly coming back. The doctor (I didn't see my surgeon but I saw a doctor whom I saw and spoke to during my stay in hospital) told me that I should begin weening myself off my alfacalcidol tablets and the sandocal calcium tablets. I currently take two alfacalcidol, which is basically Vitamin D, per day and one sandocal tablet twice a day. So, for the next week, I will stop taking my afacalcidol and continue with the sandocal, until the week after when I will cut my sandocal dosage down to one tablet per day. I will then have my blood tested again in two weeks and they will let me know if I need to continue with my calcium supplements or stop those completely also.

He says that my thyroxine levels are well and my TSH is within range as well. I have been very lucky because they started me on a dose of 100 micrograms of Levothyroxine a couple days after surgery and it seems to have been the perfect dose for my body. I don't feel tired or sluggish at all and the doctor said he sees no need to alter it, which is very good news. I have had a loss of appetite recently which I thought might be due to my thyroxine being too low but he told me that it is probably my body just trying to regulate itself again after going through the trauma of surgery. It should come back slowly, which I have seen evidence of as I can now finish a plate of food - instead I simply don't feel the need to eat until my tummy starts grumbling uncontrollably.

In terms of my scar, he had a look at it and said it was healing well. I told him I put coconut oil on it and he said that was fine to do but some people have sworn by Vitamin E type products so I might relent and go to Boots and search for one soon. I was informed that I can now put anything I want on it, including makeup, which is good since I will be graduating from university in two weeks, so I can cover it up for my photographs. I told him that when I massage the oil in it feels sensitive but he didn't seem too stressed about that. I suppose, as this is my first operation, I am worried about everything, but a surgical incision is deep so the healing process would be longer. Again, I will continue to monitor it and update my blog regularly.

I will be seen one more time in October before I am discharged. I cannot believe it has been so smooth a process; I have spoken before of all the issues I had with University College London Hospital over the past 3 years but I have to admit, the surgeons and post-op doctors have been amazing. From what I can tell, they did a really good job and I am happy with the results so far. It's now up to my body to continue to heal itself, and to me to continue to care for myself.

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!

Pain: Is it as bad as everyone says?

I read a lot (like A LOT) of blogs in the run up to having my thyroid removed and one of the things I was fearful of was feeling pain. My pain tolerance is quite high, in my opinion, but I hate feeling it and just the thought makes me shudder. Obviously everyone feels pain differently but in honour of officially being 3 weeks post-op, I decided to give my own account of the pain I felt in regards to my thyroidectomy.

I'm just going to get stuck in and say: I didn't feel a thing - it was numb from the moment I woke up. The only thing I felt was some stiffness/tightness of the skin which I would consider an uncomfortable feeling rather than pain. I was given two 500mg paracetamol tablets and one naproxen tablet regularly to help with inflammation and to stay on top of the pain for the two days in hospital but I didn't think I needed it. They issued me these tablets on my discharge but I hardly used them - only when the uncomfortable feeling was getting on my nerves.

For those that don't know, I did have a small plastic tube in my neck to drain any excess fluid from the wound. I knew there was a possibility I would get a drain tube and read a couple blogs with people's accounts of having one. In one particular blog, however, the writer described it in such a way that made me soooooo scared that I would get one too, and I was praying I wouldn't need it. In her blog post, she recalls that she cried when it was being removed so it's safe to say I was p*ssing myself. Honestly though, I didn't feel ANYTHING - and I'm not just saying that. As I said I was taking paracetamol regularly during my stay but to me, I didn't need it. The only thing was that I did roll on it a couple times during my second night but that also wasn't painful; instead it felt more like a tugging sensation rather than pain. Once I fixed it I was fine and went back to sleep again. If anything, the drain was simply annoying rather than painful, because it had to come everywhere with me and I felt kind of bad for the other patients having to see me walking around with drainage fluid in a container every time I had to use the toilet.

The only time I did feel pain was when they removed the tube but it wasn't that bad (maybe 5 or 6/10) and it didn't last - the tube was stitched into my skin so cutting the stitches was painful. The actual process of pulling out the tube wasn't painful but quite uncomfortable because I could feel the end moving inside my neck which wasn't a pleasant feeling. The worst part wasn't the pain but was that, because UCLH is a teaching hospital, I had to hear the nurse explain to a trainee what it was that she was doing at any given moment. That made me anticipate it and I really didn't like that.

All in all, I would honestly rate my pain at 0/10 as to me it didn't hurt, there was only an uncomfortableness when trying to move my head and neck.

I hope you found this helpful and, of course, leave me a comment if you have any questions or if you want, Tweet me @StaciahGreer

Take care! x

My post-op appointment

So, yesterday I had my post-op appointment with my surgeon, Mr Tariq (I finally found out his name! ). He wasn't very concerned except where my parathyroid glands were concerned; they still aren't maintaining a good calcium level. I had stopped getting tingly hands and feet so thought I didn't need to take my Sandoocal effervescent calcium tablets anymore. However, I kept getting muscle cramps and a weird sensation in my hand (kind of like it was seizing up), which I thought were also cramps at the time. When I saw my doctor yesterday, he told me I must be getting these symptoms without me uttering a word. He knew this because of how low my calcium levels were. As a result, he upped my Vitamin D dose to two tablets a day, and I also need to take my Sandocal twice a day as well. According to him, my Grave's disease meant that my bones are lacking calcium so when I consume any now, it goes straight into my bones and doesn't stay in my blood. Hopefully I can get this under control soon.

Another thing he mentioned was the amount of glue still on the skin around my incision. I'm really squeamish so I haven't been much inclined to clean it - even removing the tape was a challenge. I've also been avoiding getting it wet when I shower as well which probably is the reason behind there being still so much glue on the skin. I've been wiping it with damp cotton pads and bit by bit the glue is coming off. The wound itself isn't sore but I've never been one to have people touch my neck so the sensation of touching it to get the glue off is weird and I can't do it for too long.

I did forget to ask him if I can start rubbing oil or cream on it, I think I can from the information in the booklet I got before surgery but I still want to be sure. Also, I want to know if I can use coconut oil which they didn't list in the booklet but I think it will work just as well and help to get the glue off my skin. I will call the office on Monday and ask a member of staff about it.

He didn't mention my TSH or T4 levels so I'm going to assume that they were okay. As usual, I will update my blog with any new information.

Staciah x

Two weeks post-op update

This past week has been much better than the first and it's about time; I'm happy to report that I'm pretty much back to normal.

The wound itself has a large scab over the top and has been like that since I took the tape off of it. The soreness disappeared quite quickly after my operation but on Sunday my cousin came over and I laughed so hard that under the skin in my neck around the incision became sore to the touch. That soreness went away after a couple of days and the only thing I feel is a bit of stiffness when I swallow but that isn't as bad as it used to be either. Also, the skin just above the incision is numb but that too has lessened over the course of the week. On the plus side, I've got most of the movement back in my neck and can look in all directions and over my shoulder without any discomfort.

I've been taking my Levothyroxine tablets (I'm on 100mg daily) and I've been feeling quite well. From reading blogs prior to going into hospital, I convinced myself that I would feel crappy but I've been feeling like my old self. I had a lot of fatigue last week but that has gone now; I'm still not sure why I was feeling like that but I'm happy it's over. I'm not sure if my doctor will change the dosage but so far I feel really good so we'll see.

I was also worried about gaining weight as I've been thin my whole life and from reading blogs, I found that a lot of people who had a total thyroidectomy reported weight gain in the months following. I did gain about 5lbs right after surgery but about 4 days after, I went back to my starting weight, 136lbs. I'll continue to monitor it, but it's been two weeks and I've not seen any change in my weight so fingers crossed it stays that way.

Other than that, there's really not much to report as I'm feeling quite normal. My post-op appointment is tomorrow, Saturday 18th, so we'll see how that goes. I haven't been rubbing anything on my wound at all so once I get the all clear I'll ask my surgeon what I can use to moisturise it. The area around it can be a bit sensitive occasionally though so I'm not sure how that will go but I'll update my blog on that too in the coming weeks.

Also, I know I haven't posted any photos yet but hopefully soon I'll get a progress post up. Possibly for my one month update.

Thanks for reading!

Stace x

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.

One week post-op update

This past week has been a struggle, I'm going to be 100% honest with you. But I'm going to break it down into a summary to help anyone about to go through the same experience:

Day 1:
The night after my surgery was tough as I threw up three times so I was attached to a drip the entire night and I had oxygen in my nose. But when I woke up, I was surprisingly okay. Besides having no voice at all, I felt okay and there was no pain except for a cannula they had put in the side of my left wrist while I was asleep that KILLED. I asked my nurse to take it out for me because it was really painful and it wasn't even being used. I ate only a bit of my porridge in the morning but with every meal I ate a little bit more until I practically finished my dinner.

Also, although the drain in my neck didn't hurt, it was leaking throughout the day so my nurse stuck some extra gauze next to it so that there was at least something to absorb the liquid. That night though I got no sleep from sleeping in an uncomfortable position and rolled on my drain a couple times which surprisingly still wasn't painful.

Day 2:
Despite feeling nauseous and being unable to eat from the painkiller they gave me, I was fine. The pain was almost non-existent and my voice was coming back slowly, which allowed me to actually speak to my surgeon instead of whisper. My drain was removed and so was another cannula and I was discharged but that night, I woke up with a bit of pins and needles in my hand so I drank a glass of milk and went back to sleep.

Day 3:
This day was quite uneventful. I had some mild pins and needles but I would drink a glass of milk or my Sandocal calcium tablets and be done with it. There was no pain, my voice was coming back more and was starting to sound less raspy and more like my own.

Day 4:
For some reason the pins and needles got worse and I ended up calling my hospital at about midday as I was getting worried. The lady at the desk told me that the calcium symptoms would get better during the course of a few days (something I wish my nurse would have told me). Also, as the nurse on the day of my discharge instructed me to do, I drank milk whenever I got a tingly sensation. THIS WAS THE WORST THING TO DO! You CAN consume too much calcium and that's what happened to me. My tummy was in knots and I was pretty much sick the whole day. I was drinking milk, plus my Sandocal, plus eating yoghurt and other calcium rich foods which threw my body out of sync.

Additionally, I started feeling increasingly weak during this day and got up to use the toilet and one point and almost fell as my legs pretty much gave way.

Days 5 & 6:
I've grouped these two days because they were pretty much the same. The fatigue I felt on these days were immense. It seemed that when I sat down, my legs forgot how to work by the time I went to stand back up and I would have to slowly stand up. To be completely honest, my whole body was exhausted and I had no energy to do anything. On Day 6 I even had to take a shower whilst sitting down because it was just that bad. I'm not sure why this was happening; my mum spoke to my great aunt (a veteran nurse of about 30 years) who said that it's not uncommon for your body to be tired after a surgery and so not to worry too much, but I never experienced tiredness like it and I hope I never have to.

On Day 5 I removed the majority of the tape covering my incision but one end was stuck so my great aunt suggested saline solution which my mum got on Day 6 and the last part came right off. It was painless. I got pretty much all of the movement back in my neck, but I still couldn't look over my shoulder.

I did actually get some swelling on Day 6 - probably from laying down 24/7 and not keeping my head elevated. It wasn't too painful, just really uncomfortable.

Day 7:
I woke up in the morning with more energy than I had done in previous days but that diminished throughout the day. However, that was basically the only issue as the pain was almost undetectable and I didn't suffer from any pins and needles. Around the wound did get slightly more swollen in the evening for a while.

The day of surgery

It's been 3 days since I had my total thyroidectomy. I'm doing well today so it's about time I update my blog on the process. It's going to be a long one so get yourself a cup of tea.

So, my mum and I arrived at University College London Hospital at 7:00am and checked in. I was surprised that we were told to wait in a TV room instead of being taken to a bed, which is what I know my mum went through with previous surgeries she had at the same hospital. There were quite a few people in there all waiting for surgery too. First, I was called in to meet my anaesthetist, Pam. She was really sweet and told me she would give me numbing cream to put on the back of my had so I wouldn't feel the IV (not that it helped but I'll get onto that later). I then went back into the waiting room and was called in by a doctor. I didn't like this method because there was a lot of waiting around.

I hadn't eaten anything since about 10:45pm of the night before but, even though I told the nurse at my pre-assessment appointment that I get migraines when I don't eat, the doctor told me I was last on the list and that I would go into surgery between 4 and 5:00pm. I was MAD because I had made sure to tell them prior to going in for my surgery - and for good reason too. By 10am I had already developed a migraine so they offered me an examination room to sleep it off. That didn't really work since nurses were in and out so regularly. But at about 12:45 two doctors came in and told me that they were moving my surgery up to 2:30pm since I wasn't doing too well. Thank God! So I got dressed in my gown, walked up to the 3rd floor to the entrance to theatre, and said goodbye to my mum. At first, I sat in a waiting room with another woman who I had seen waiting to go into surgery. It was quite relaxing; there was a very wide selection of magazines, a large TV, and comfy chairs. There, a medical student talked to me about how to pronounce my name and other random stuff. She was trying to calm my nerves. Then another anaesthetist came in and got me to walk to the anaesthetic room and got me to lay down on a bed.

It wasn't exactly a scary room but the bed was in the middle and at the end of it were two large double doors with green frosted glass and a red light that said "theatre in progress". My anaesthetists, Fatima and Pam, were really sweet and chatting with me and it worked to get my mind off what was happening for a while but just above the coloured glass was a strip of regular glass, and every so often I'd see a set of eyes peering through. LOL it sounds so freaky right? Anyway, they couldn't find a good vein to get the IV into and even though I had the numbing cream applied to both hands, I could pretty much feel all of their attempts. I was also attached to an ECG machine and had one of those finger pulse counter things on. The surgeon, whose name I still don't know, came in and spoke to me for a bit before Pam told me she was putting something to calm me down in my cannula. It made me a little woozy but I was still conscious and able to respond to them. Then she said she was putting something else in and it was lights out for me.

I don't remember falling asleep but the next thing I remember was a nurse calling my name and telling me I was in recovery. I basically woke up fighting because they had an oxygen mask on me but I felt like it was suffocating me and I just wanted it off. Then I tried to roll on my side (not sure why, I was out of it) and I remember hearing them shout "No, Staciah! Don't do that! You've got a tube in your neck and you're pulling it out!". Someone took off my oxygen mask and put the oxygen tube thing in my nose and I remember giving them a thumbs up. My nurse told me the time, it was about 8pm, and she says "You had a lot of anaesthetic darling. It took you a while to wake up". At that point I was worried that something had gone wrong and about my poor mum who had been waiting for me. Also, I should probably state that I woke up with no voice, so I was scared for that too. When my surgeon came in he reassured me that everything went well and that my vocal chords were simply swollen.

It wasn't long before I was taken up to the ward and I remember seeing the blur of my mum's red coat and reaching out for her. She stayed with me a while but that night was tough. I had a bedpan on my chest from recovery as I felt nauseous as soon as I had regained consciousness, so when I randomly threw up while on the ward I was prepared. The second time, I got up to use the toilet and on my way out the door back to my bed, I threw up again. Then, the final time, I ate two yoghurt pots given to me by my nurse and shortly after that, it all came up. As a result, I was hooked up to a fluid bag all night but luckily the following day was much better. I woke up with not much of an appetite but I was able to eat the majority of my food by dinner time. My drain leaked a bit during the first day so my nurse supported it with more gauze and it was fine for the rest of my stay.

I stayed for two nights and on the day of my discharge a doctor came around and told me that I should be okay to leave that evening and I would just need one final blood test before I went home. I felt quite sick that day and hardly ate a thing until my nurse told me that it was a side effect of dihydrocodine (for pain) so I stopped taking it. My drain was also removed on the final day; it didn't hurt but it did feel really weird. I was happy to get it out as I rolled on it a couple times the second night of my stay. But since I was discharged on a Saturday it took hours to get everything in order. I was actually waiting to see the doctor on call but my surgeon came around to see another patient, saw me sitting on my bed and let me go home.

I'm doing well. My calcium was a bit low but I've been prescribed vitamin D and some dissolvable calcium tablets for if I feel any tingling limbs (which I've gotten mild cases of a few times today) and I've been told to drink plenty of milk. I've also started on 100 micrograms of Levothyroxine and a couple pain killers but I don't really need them. I can swallow and cough without any issues for the most part but I have taken a couple paracetamol and naproxen today when the incision has felt uncomfortably tight. However, my nurse had told me to continue to eat and drink as the continuous swallowing would help alleviate the pain and I think it has. The first day my throat was sore mostly from the breathing tube but it went away by the second day. Also, my voice is 85% back to normal now. It's a bit raspy still but it's stronger than I thought it would be given I could only whisper in the beginning.

I created this blog to give extra information to people about to face what I faced so if you have any questions or if I've left anything out, feel free to comment!

Take care,
Staciah x

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.