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.

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!

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