Before I go into all this and explain what’s gone on I will try and explain how the thyroid works a little bit.
I’ve said a few times already, my medical knowledge is pretty shoddy. I’m most definitely not a doctor and there’s a good chance I’ll get a few of these things wrong but this is how I’ve interpreted what doctors have told me and what I’ve researched.
So the thyroid is a butterfly shaped gland at the front of the throat. It’s job is to use iodine from food sources to make Triiodothyronine (T3) and Thyroxine (T4). T3 and T4 travel in the blood to pretty much every cell in the body and their job is to regulate the speed in which those cells/metabolism function. So the thyroid is responsible for the efficiency of everything!!!
Two glands in the brain, the pituitary gland and hypothalamus, produce Thyroid Stimulating Hormone (TSH) which communicate with the thyroid to try and regulate the production of T3 and T4. If the thyroid hormones are low then the pituitary and hypothalamus glands produce more TSH, and if there is to much then less TSH is produced.
It’s really important that the levels of T3 and T4 for everything in the body to work efficiently. And when the levels are either to high or to low then things go wonky.
When I was first diagnosed with hyperthyroidism (an over active thyroid) on the 3rd June 2019 my T4 level was 91 pmol/l (range 11-23pmol/l) and my TSH level was <0.01mU/l (range 0.27-4.5mU/l). So very over active. My resting heart rate was ranging from 120-145bpm. I was shaking. I’d been struggling with depression and anxiety for about four years, my muscles were getting weaker by the day, my joints hurt, my eyes hurt and were getting blurry, I was losing weight fast, my periods had stopped completely and I couldn’t sleep. They were all quite typical hyperthyroidism symptoms. But I also had no appetite, the only reason I remembered to eat was because I felt sick, I was getting dizzy and disoriented, I had spider angiomas all over my upper body, I had no energy at all and I was constantly cold!
I was initially put onto 15mg of carbimazole, a drug to surpress my thyroid and 10mg of propranolol three times a day, a beta blocker to control my heart rate and I was told to stay on bed rest until my resting heart rate stayed below 100bpm. It took around 3 weeks for my resting heart rate to come down and stay down consistently. And I lowered my dosage of propranolol around then. I still felt like shit but the tremors had stopped and lots of the other symptoms were getting better.
On the 20th June I got a call from my GP asking me to collect a new prescription as they had received a letter from endocrinology asking for my dose of carbimazole to be increased to 40mg. A couple of days later I came out head to toe in a rash. It was painful and itchy and antihistimine didn’t touch it! I called endocrinology but was told my endocrinologist was on holiday. So I called my GP. They wasn’t sure what the solution was and was a little nervous about reducing my dosage without discussing it with my endocrinologist. Eventually the reaction just seemed to lesson a bit so I carried on with the dosage and just dealt with it, after about 10 days the rash stopped.
On the 4th July I had my first appointment with endocrinology. I’m not sure why my thyroid function wasn’t checked again, but the endocrinologist decided I should stay on the higher dose of carbimazole despite the fact I’d told him I was already feeling better and that I was concerned that a higher dose would cause my thyroid function to go the other way, he told me that wasn’t possible as carbimazole takes months to work. For the first half of July I felt a lot better in general but towards the end of July I could feel myself getting really agitated.
I had started training throughout July and continued to monitor my heart rate. During the end of July/beginning August I struggled to increase it. My resting heart rate was low and I knew I wasn’t that fit!!
I was also putting weight back on slowly. Around 0.2kg a day. Which was insane as I had no appetite again and I was doing more exercise than I had been the previous month. I was also tired all the time and the agitation got worse.
I’m not really sure how to describe how I felt. People just pissed me off and I felt angry and frustrated that people didn’t understand why. I argued with my partner, my daughter’s and I was getting to a point where I wanted to scream at my students at work.
I scared myself on a few occasions because I was close to doing something stupid just to make people take note and listen to me. I wanted to hurt myself to hurt other people. And it was a horrible feeling I had never felt before and I hope I never feel again.
I called endocrinology a few times and was told I had to wait as my endocrinologist was on holiday until the end of August. But the one positive of how agitated I was feeling came from the fact that I fought my corner to get my thyroid retested. If I was in my normal frame of mind I would have accepted what my endocrinologists secretary was telling me and just left it. But I wasn’t so I harassed and argued my case and eventually got her to talk to another endocrinologist who agreed I should do more blood tests. And it was lucky I did. On 7th August 2019 I had the tests done first thing. By midday I was called by my GP to tell me to stop my carbizamole immediately as my T4 had dropped to 2.8pmol (range 11-23) and my TSH was 11.8 (range 0.27-4.5)!
I had already taken my carbimazole for that day but was advised to call endocrinology again and inform them of the results and to stop medication. Endocrinology agreed I should stop carbimazole and re test bloods in two weeks time.
As soon as I stopped taking the carbizamole I felt so much better. I had more energy, stopped falling asleep whenever I was sat down and my mood was so much better. I stopped getting angry at everyone!
I have read on a lot of websites that an under active thyroid is much more common than an over active one. Admittedly other than the tiredness, the physical symptoms weren’t as bad but the way I was thinking was awful and I’m sorry to anyone having to feel like that every day. So if you know anyone with an under active thyroid then please realise they probably don’t mean to be stroppy bastards either!
Since then I had two more blood tests. One two weeks later saying my thyroid had gone over active again, for which the endocrinologist put me on 10mg carbimazole for. And then another two weeks after that, that had my T4 in a normal range. Unfortunately that one result with my T4 in a normal range (my TSH wasn’t anywhere near a normal range still) was enough to convince my endocrinologist that I am on the correct dose of carbimazole and that I didn’t need anymore blood tests for 8 weeks.
On a couple of occasions in that 8 weeks I could feel myself getting the same symptoms I had before. So I tried calling endocrinology and when I got no response, I stupidly just had a couple of days off taking the carbimazole. It seemed to do the trick and stopped me from getting really bad ahain. But it hasn’t helped long term, as when it came to a repeat of the blood tests on the 7th October, they were in range again, and I know a dose of 10mg is still to high for me. So I’ve decided I need to do as I’m told and take them constantly so the endocrinologist can see for himself that the dose is to high.
I’m currently starting to get lots of the symptoms of an underactive thyroid again but despite me having called endocrinology three times in the last two days and speaking to my endocrinologist’s secretary, I haven’t been called back and feel like I’m not getting listened to again. I have an appointment with my GP on Friday so I am hoping they will give me the go ahead for more blood tests.
I really want to take part in some medical trials for a new drug for Graves’ disease, unfortunately before I can have the pre assessment tests with them, I need to be on a stable dose of carbimazole for a minimum of 6 weeks. And although I have been on 10mg for longer than 6 weeks, I don’t believe my thyroid function is in a normal range at the moment so until I get my dosage adjusted, I can’t progress with that. So fingers crossed for Friday!!!