8 years…

Today marks 8 years to the day that I had my thyroid removed.

A lot has changed in that time.

I was 16, alone, and scared. My grandpa had just died. I was just about to take my GCSE’s. I had never had an operation or stayed in hospital.

I’m 24 now. I have a job, my dream job. I have good friends, some who I have met through work. I have my beloved godson, who’s father (my cousin) I bonded with over our thyroid conditions. If I had never had a thyroid condition, I wouldn’t have Rory. And he is worth every bit of ill health I will ever have. I have my beautiful niece who I adore beyond words. Both she and Rory are very very special to me.

Yes. Life has been hard. I’m currently going through a bout of exhaustion which I am sure is related to not having a thyroid, but I am better off than some and am still able to work. I am currently waiting for an appointment to see my GP to arrange for a referral to an endocrinologist, as I am having symptoms currently that would suggest my levels aren’t quite right, even if they look like they are.

But I wouldn’t change anything. Not now. I’ve been incredibly lucky to have the support of so many people over the years, not least the nhs! I owe a lot to the nhs, and am very grateful for their ongoing care.

An update

It has been a while since I updated this blog.

Rather a lot has happened!

I am due another ophthalmology appointment in May, at my one last year all was normal and as always we had our annual do not discharge me chat – (last year he told me I was one of his favourite patients). But it’s not just that I am fond of him. Being discharged from the endocrinologist was scary enough. I do not want to be left in charge of my eyes as well.

My eyes are and will always be dry, now. I have been advised to use eye drops 4 times a day, and this helps.

I currently have dry skin as well. I have now been prescribed a steroid cream which helps this and which I use alongside normal, more gentle creams. Ahh, the joys of having an unhealthy body!

Finally, the thyroid.

My thyroid levels are currently normal – ‘in range’. However, I have been feeling exhausted for quite a while and had to push for an additional blood test. Using the advice of some online friends on a thyroid group, I got my blood test to cover:

TSH

T4

Vitamin D

Vitamin B12

Iron

Calcium

My iron results came back at the very lowest limit of the range and the T4 came back above range, but apparently this is still fine.

I also requested T3 but unfortunately my GP was unable to select this as an option (due to the changes with the CCG and coatings of T3). So I paid for a private T3 test and again, this came back in range. However, having sent these results to one of the aforementioned thyroid friends, it was suggested that perhaps my T4 isn’t converting into T3, as the T3 results were at the low end of the range. I am going to try and get a doctors appointment during my week off in two weeks time to discuss this further and perhaps get a referral back to an endocrinologist. I’d like a trial of T3 but sadly this looks like it won’t happen.

So that’s an update on me at the moment! Other than all of the above, I’ve been reasonably healthy: i managed to get through all the exhaustion and other than a few days here and there of annual leave, I’ve not had any time off – until I came down with something the other week and left an hour early one Friday.

I will try to be better at updating my blog from now on!

As always, if anyone stumbles across this blog and wants to talk about having a thyroid issue, I’m always happy to chat.

Latest ophthalmology appointment 

Today was my first appointment with my ophthalmologist in nine months. It is now about fifteen or sixteen months since my operation. 

I had an opticians appointment a couple of weeks ago, while I had a week off work, and while my sight has only very slightly deteriorated, the optician commented that my right eyelids didn’t meet when I blink – over time, this could lead to dry eyes and while I do use eye drops to lubricate my eyes, it’s only when they feel dry. 

Today, I got to the hospital at half past three for my appointment at quarter to four. 

I wasn’t seen until five o’clock. 

I was seen by a young woman who I have never seen before, but who was pleasant. She was fascinated by the work I do and thinks the organisation I work for is incredible. She said that my eyes were a little bit dry and that I should start using eye drops regularly and daily as opposed to as and when my eyes get dry and I need to for comfort. 

She then went and got my favourite doctor, who said that while my eyelids had dropped since the operation that they still looked better, more normal, less starey, than they had pre operation. Which is good. He then became level with my eyes, as opposed to looking from above, and said he was even more pleased and that it looked worse from above and better on the level. He mentioned a minor operation which would involve putting stitches in the corners of my eyes, but said it wasn’t necessary and if I wanted to do that it was my choice but he didn’t feel at this stage that it is necessary. 

He then said I would have to come back in a year for my next appointment, and we may then discuss discharging me. I said i didn’t want to be discharged and that I had been discharged from the endocrinologist a few months ago, and that even though I didn’t like him I still felt lost. I said if he discharged me I might actually cry. 

His reply was that he is happy to know he is liked, that he wants to avoid tears if possible, and that post op my eyes are stable, as is my thyroid eye disease, and that if I’m happy to come and sit for three hours in the waiting room annually then that’s fine but it isn’t necessary. 

I said I don’t want to be discharged next year. We ended the conversation saying we’d discuss it next year. 

Seeing my GP regarding thyroid management 

A few weeks ago I managed to squeeze in an appointment to see my GP. This was after I tried calling and calling the surgery, being put on hold, being told to call back by an automated voice… Eventually, 5 hours after I first tried to get through, I managed to speak to a human (I was at work at the time. I couldn’t call continuously and ended up getting through at the end of my lunch break). 

I managed to get an appointment and duly went along one Friday morning to see my GP to discuss how they manage my thyroid. 

The reality is that they don’t. 

He printed off a blood test form which I am to use in May. Should I hear from them after that, it means my thyroxine needs adjusting. If I don’t, the level I take (currently 100mcg) is enough for my thyroid. I will then need to keep track of when I have blood tests and 5 months or so after each one ring my GP (hahaha) and ask for a new blood test form. 

I have almost continuous problems with my sinuses, causing me to struggle to breathe properly at times and to almost always feel like I’m choking on something that clings to the walls of my throat. I don’t know what it is, my GP looked up my nose and determined that one nostril looks slightly compressed, but obviously can’t do much about that other than prescribe nasal drops which I don’t like using because of the way I have to use them. Over a year ago I went to see a different doctor at the surgery about this issue and we tried for months using different sprays to solve it but nothing worked. My GP however has now referred me to an ENT specialist so I hope that maybe now we can work out what this issue is and what can be done to fix it. It is very unpleasant. Every morning I wake to find that I feel like I’m choking. Often, it causes me to retch and feel like I need to vomit. (I have never actually been sick. It is merely that feeling you get when you feel immensely queasy and have to repeatedly swallow saliva). I cannot carry on like this. I want to start work each morning feeling healthy and I just can’t at the moment. 

That appointment has been booked for February. Not too long away. Now I just need to hope that I am able to get the time off work! 

Endocrinology appointment 

Yesterday was the appointment I had been waiting for. The appointment I eventually chased up and chased up and chased up to get – with the help of PALs. 

As it was in a hospital in a town further away than my usual hospital, I set off from home (having taken the morning off work) at 7.45, as coming through town can always get very busy at that time in the morning and as the hospital’s building is new and I have never been there before I wanted to arrive with enough time not only to get through traffic but also to navigate my way round the hospital. 

The new parking system is better than others in that you pay on exit, but just as extortionate as the others. I paid £3.40 to be there from 8.25 to 10.05. 

The new building stands and looks shiny and new, a stark contrast to the old hospital that is still on the grounds, although they are letting it crumble now. It looks very old and tired. 

Once in the hospital I showed my letter to the woman on the main reception and she confidently directed me to the correct clinic and floor. This is where the confusion started. Once there, I walked in to find that not only was I sharing space with a walk in clinic for quick tests (for what I cannot remember) but also with an antenatal clinic. And of course I was there for endocrinology. Everything seemed thrown together haphazardly where there was space. The antenatal receptionist told me she didn’t reckon my doctor worked there and thought he was based on the opposite side of the hospital. She directed me to the outpatients reception along the corridor but of course once I reached it there was nobody there to assist. 

I waited for 5 minutes and then the original woman came back and said he was based in the clinic I thought he was and I should return. So I did. I handed her my letter and waited. 

I bonded with another jaded patient of the doctor while we were waiting. My appointment was at 9. Theirs, 8.45. 

We kept being informed by the antenatal receptionist that out receptionist wasn’t there yet, so no clinic list existed as yet. She in particular seemed displeased by this, and she was quite short with us for something that was most definitely not our fault. 

Eventually a nurse showed up and took first the other patient and then myself in to her little room to have our weight checked and my blood pressure. My weight is now 65.9kg, last time it was 62kg. Upon leaving her tiny space, she told me I would have to wait as there was one patient ahead of me and (and this is the important thing) the doctor himself had not arrived yet. 

His first appointment started at 8.45. He did not arrive until 9.10 – 10 minutes late for my appointment, and 25 minutes late for theirs. He walked past us with a coffee in his hand and did not apologise at that point or at any other for us having to wait. 

I was the second patient of the clinic. Only the second, and my appointment started 45 minutes late. 

And then he discharged me. My thyroid levels are now very much stable and he said I could be comfortably referred back to the GP. In the future, should I need it, I can be referred back to him but for now I can see the GP.

I have never had my thyroid monitored by the GP before other than the occasional blood test so I don’t know how we would manage this – would they send me reminder letters or would I need to coordinate the appointments. He said I would need to. 

I said I arranged this one using the help of PALs after my appointment had been cancelled. He said he had heard about that. 

He said it wasn’t unheard of for people to have 4 cancelled appointments in a row and so my measly two aren’t as bad. And as my thyroid is stable it doesn’t matter. 

I told him that it does matter. I should not have to organise my own appointments and more importantly whether my thyroid is stable or not I should not be left in the position where I have to get involved. Because for one thing, in the 6 months I have not seen him it could all have changed, and for another, if they can cancel my appointments without reorganising them are they doing that for cancer patients? For terminally ill people? 

According to him, if you want to get things done in the NHS you have to shout for it. He laughed at this as if it were funny but I don’t think it is. I should not have to make my voice heard just to get results. And what about those people who can’t? Or don’t know how to?

According to him, the noisy patients get treatment and the quiet ones miss out and that is ok. 

I was furious when I left the hospital. Furious with him for being late, for making me wait, for discharging me, but most of all having such a skewed idea of how the NHS should work.

Once I have my referral letter through I shall make an appointment with my GP to discuss a care plan. Being discharged is scary. I know I am stable and this is a good thing but I have been under the care of an endocrinologist in various hospitals for over 8 years now. And suddenly not having an expert ‘looking after me’ is just a bit of an odd feeling. I shall get over it though! 

I book my own appointments now – my experience of PALs

Two months ago I received a letter stating that my appointment on the 13th of November had been cancelled and I would receive a letter shortly telling me the date and time of my new appointment. I now work full time and am significantly less flexible with appointment times than I used to be. I can no longer stop what I am doing and get to the hospital at the drop of a hat. It requires planning, especially as I need to have a blood test two weeks before the appointment itself. 

Two weeks passed from the cancellation letter and I began to get concerned. I did not receive any communication and so I attempted to get in touch myself to find out what was happening, whether I had an appointment, the date and the time, and whether in this period of silence I had actually missed any appointment arranged.

This is where my raft of complaints started.

It took a while to get through to just the hospital switchboard.

When I did speak to someone she told me that the appointments centre closes at half past 4 – I work full time and so cannot dedicate the half hour or so that calling the appointments line would take in my lunch break. 

At this point I emailed PALs and they very quickly created me an appointment – I had not been reallocated one after the cancelled appointment. But there was one issue – they had allocated me an appointment in a hospital that while I know it, I have never been to an adult endocrinology appointment there. So I didn’t know where to go once I arrived. 

But then I never received the new letter that they assured me they had sent out. 

This is where I feel it best to say that the post room at the hospital is a black hole. 

Another week and I raised the issue with PALs again, and very promptly got a letter with a handwritten envelope the very next day. It is clear to me that the lady who received my emails hand posted the letter outside of the hospital so that it would arrive. 

PALs have been incredible through these very stressful last few weeks. I am still very much of the opinion that it is not my responsibility to know when I am due appointments and chase for them to be created. I should not have to organise my own appointments. 

Needless to say, I have now raised an official complaint and am in contact with the complaints team. I have had issues with hospital letters before – from this hospital, so I feel I have a right to do my hardest to make this a visible issue to the NHS and I have much experience to prove my point. 

Let me reiterate – I think the NHS is incredible. I am of the opinion that I owe my health to them. This is a failing which needs to be fixed so that others with more serious illnesses than I are safe. But that doesn’t affect my opinion of the NHS as a whole by any means. It is lucky that I knew I was due a hospital appointment. Luckier still that I have the capability to chase it up. Somebody else may miss a life saving appointment. Mine won’t save my life, but it is my health and I care for it. But that doesn’t prevent the fact that as a woman with a lifelong medical condition, I am under their care. And bar the odd mistake, I am looked after well, and for free. 

You know you’re attached to your doctor when… 

You look so shocked at the prospect of not seeing him for a year he shortens it to 9 months.

I arrived at the hospital at 3.30 (the appointment was at 3.45) and wasn’t called in until gone half four. When I was finally seen by Amazing Doctor (the surgeon and the one I have seen at most post op appointments), he expressed disappointment that my eyelid has dropped even further. However, he is confused that although it is now close to pre op (my right eye especially), it looks so much better than it did before the operation. He can only notice the difference because he has seen me so often (and is used to my face, apparently). We decided between us that it is possible the line of the lower lid may have changed which improves the appearance. 

He suggested leaving it for 12 months but I did genuinely look very very shocked and he reduced it to 9 months for me. He also said that the doctor last time gave me 4 months due to Amazing Doctor not being in the clinic to consult. And in 9 months, it will have been a long enough time to see if my eyelids drop any further – and after that period he would feel confident about the changes to potentially do another operation, possibly only on the right eye as that is worse than the left. I suspect that another operation will eventually happen. 

Eye appointment 

I have another eye appointment today, my first for several months, and my first where I have worked in the morning before heading into London in the afternoon. 

This is a completely new experience for me – last time, I took the day off work using time owed to me and made a day of it. This time, I didn’t. 

Today, I worked this morning and then pelted home at lunch to get the train up. I had to change the time of this appointment when I got given it because had it remained early afternoon I would have had to take the day off work, so now it is at 3.45 (in theory) 

Today is just a check up with the doctor, so I am not expecting anything major to happen. A few questions to ask (why do my eyes produce a lot of mucus, does he have any idea what my blood type is…) and a quick check up and I should be home by 6. In theory. 

Endocrinology appointment 

Today I had my endocrinology appointment – the one I found out about two weeks ago. 

It went better than I thought it would, with him commenting on my weight gain and generally being pleased with what has happened in the last six months. 

My thyroxine has been adjusted from 100mcg and 75mcg on alternate days, to 100mcg every day. I will start this from tomorrow, and I have a blood test for my GP next week so in time I should know whether this will work. 

However, he did say something confusing. Today, my doctor told me that the healthy BMI was 22. I had been under the impression that it is 18.5. When I asked, he said it was different because I am taller. When I returned to the office, I searched online to find that the NHS does indeed state that a healthy BMI is 18.5 to 24.9. And of course if you divide my weight (62kg) by my height (1.83), and then divide by my height again, you get results proportionally. So the BMI range is the same for me as it would be for someone a foot smaller. So although I am a healthy weight, it is right at the bottom of the healthy range. For this, I shall go by the NHS website, as opposed to the doctor. 

I stood and waited for another appointment to be made, and that is booked for November, so my blood test will be two weeks before. I insisted on waiting. I don’t want a repeat of last time! 

Moods 

underactivity: depression – low mood and difficulty enjoying things, tearfulness, and loss of appetite, and disturbed sleep.
Over and underactivity: mood swings – snappiness or short temper which people often call ‘moodiness’, sleeping difficulties
~British Thyroid Foundation 

There is a link between the thyroid and emotions, definitely. And don’t I know it. 

Every so often I become short tempered, or snappy. And I have good reasons for this. And all of them fall back to my illness. 

I failed my exams, plunging me into feeling very low, very down, as if I was a failure. I drew in to myself, and more importantly, didn’t leave home to go to university. I am out of this depressive state (I was never diagnosed) now, with my job and my accountancy course, but I still live at home. 

I often feel suffocated at home, because I have never left or had a chance to discover myself properly. My family still treat me as a child, even my younger brother often treats me as someone who doesn’t deserve his respect. 

Because of my illness, I withdrew into myself, as I said above. I tried so hard to remain as cheerful about everything, and almost wore a mask to cover my true feelings, that I am now a very quiet, agreeable person. 

And so when I snap, everyone immediately reacts. ‘Why are you acting like this? Why are you snapping?’ I hate being the reliable one. I hate being the one to always sit there and listen. I hate that I feel this way. 

I want to leave. I want my family to treat me as an adult and not a child. And I know this won’t happen until I leave. And I will carry on bottling my emotions up until I snap. Because I don’t have a choice. Because, adult though I am, I get told off for being anything other than quiet and agreeable. 

It is a relief to know that these changes in emotions are due to a medical cause. That they are linked to my thyroid. And yet, in a way, it isn’t a relief. Because it almost invalidates everything I feel. Because instead of being righteously angry and having my feelings respected, it is just my thyroid that is maybe a bit over or under what it should be, never mind my own true thoughts, they don’t matter.. It’s just her thyroid. 

I know my mother reads this blog. And I know she will read this one. And I know she will take offense to it. But having been told off by both my mother and my brother for snapping earlier for what I feel was a very valid reason, I feel this needs to be said.

Because I’m a thyroid patient. And just because my thyroid and my life for the last few years have shaped who I am today, it doesn’t mean that I am or am not allowed to behave a certain way. Or that I should be dismissed when I do so. 

All I want to do is grow, away from the obedient person I have become. 

Please, if there is anyone out there who is the same as me, please don’t feel ashamed for having emotions. We are all allowed to have a short temper, whether we blame it on our thyroids or not. We should not allow ourselves to be browbeaten into behaving a certain way, just because when we deviate from our normal behaviour we are made to feel wrong and stupid for doing so. 

By writing this, I have hopefully helped others. Perhaps my family will take notice, although that isn’t what this was written for. By writing this, I have finally voiced how I feel. And perhaps, now it is somewhere, I can move on.