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

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.

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

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.