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.