A broken record

I try very hard to stay positive. Many people have complimented me on my attitude towards dealing with hypothyroidism. I have said plenty of times that I am grateful for what I CAN do. I know that having a treatment that will work eventually puts me in a better position than many people struggling with other illnesses. It doesn’t mean that I find this process easy.

I am bored. My days are all very similar. I want to do more. When I try, I end up having to do less because I’m so bloody tired. Some days the ‘more’ is worth the backlash. Some days it really isn’t. There does not seem to be a way to be both productive and not feeling like death. I need to get out and run a little and walk my dog. I’m grateful I can do that. I’m not getting beyond that consistently. Some days it feels like I’m making slow progress. Other days I feel like I’m back at square one.

I knew this would not be a short journey back to health. However, I think I assumed that each medication increase would bring a small improvement in my blood results and a small improvement in my energy levels. I expected that each small improvement would motivate me to remain patient. I didn’t expect to get several months down the line with no consistent improvement and some worsening of symptoms.

Initially, my blood results got worse rather than better. In the run up to last week’s blood test, I couldn’t see that there was any possible outcome that would be positive. If my thyroid levels had improved, then the increased brain fog of the last week or so had to be either psychological or a sign of another illness. If my levels hadn’t improved, then it would be confirmation that I was no further forward than when I was diagnosed.

I have seen the endocrinologist today. My levels are now heading in the right direction, but there is still a long way to go. My thyroid stimulating hormone (TSH) has come down from 16 to 8.46. It needs to be below 2, and preferably 1.5 or lower. The actual levels of thyroxine (T4) in my blood have increased a little. They need to be much higher. My question as to whether 8.46 should feel better than 16 received a vague response – ‘some people would feel better, others don’t improve at all until we get the numbers in the right range’.

I have developed a mild tremor in my jaw as well as having a brain like scrambled egg. I’m not sure whether this is thyroid related or not. My endocrinologist is reluctant to test for anything else until my thyroid is stable. One thing at a time. I get that. But I just want to feel better.

My medication has been increased again. It had been expected that the current dose of 100mgs would normalise or nearly normalise things. Apparently, some people just need more hormone than predicted, and we don’t really know why. I’m one of those people. I’ll start taking 125mgs tomorrow and have another blood test in 4-6 weeks. I need to be patient for a bit longer.

It has become scarily normal to spend 12-20 hours a day sleeping, resting and recovering from a few hours of functioning like a normal person. When it gets me down, I try to do things that boost my mood. Then I end up needing a nap. Finding a balance is incredibly difficult.

Fatigue is subjective and almost impossible to measure. Is mine greater, lesser or the same as the average for a person with an underactive thyroid? No idea. I often don’t even know if it’s greater, lesser or the same as it was for me a day or even an hour ago. I just know I’m tired. Tired in a full-body, all-consuming way. And there’s nothing I can do about it. If I’d been up all night finishing a piece of work, I could comfort myself in a job well done and know I’d feel better after a good night’s sleep. If I’d been out drinking last night, then I’d down lots of water, eat, get an early night and then be fine.

Currently, I can crash out for 12+ hours and feel just as tired when I wake up as I did when I went to sleep. But if I don’t spend at least half my time asleep, then I’ll feel even worse. How do you distract yourself from something so crushing, especially with poor concentration?

Simple tasks feel hard. I can no longer do two things at once or even remember why I went upstairs. The logistics of trying to manage minimal commitments can be overwhelming. Just working out what time I need to get up in order to make an appointment or what time to leave to get somewhere can seem incredibly complicated.

I recognise some of this from previous episodes of depression. But I don’t think I’m depressed. There’s no doubt that this situation impacts on my mood, but I still have a desire to do things – a wish to feel well and live my life. I haven’t given up, but I’m beyond fed up with feeling like this. I know it will get better and I know it could be far worse, but I reserve the right to want something more. I want to live rather than just exist.

My positive attitude needs kicking back into place sometimes – I feel like a very boring broken record. I have little to say about my daily life these days other than that I’m tired. Thank you to those who keep listening to the broken record.

I have to believe that this medication increase is a step forward, because I don’t like the alternative. I had a better day yesterday, only to struggle again today. It’s hard not to be disappointed when that happens. Hopefully there will be more good days in the next few weeks. Watch this space.