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

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

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!

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

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.

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