For some reason it's been some time since I wrote a blog post here. I should do some to catch up on what has been going on, but this is a bit of mini update and grump post in a place where I know people will relate to it.
Back in August, after a good 8 months of T4 not seeming to work, I got both an NHS endo appointment and a private appointment with Dr P. Dr P's one was first, went well, he was helpful and I really felt like I got listened to, didn't need to hold back on describing my issues. Continued with my Vit D/B12/iron replacement and started NAX + CoQ10 + Vit C. Also dropped my T4 dose to 75mcg, with 10 days of no T4 to clear my system a bit for the adrenals. I actually started to feel a bit better after those 2 weeks, but going for endo tests including synacthen one set that all backwards.
Then came my endo appointment 1.5 months later. Got rather patronised there, got told all I needed was more T4 despite GP having tried that - with it making my TSH go up and my FT4 go down - but standing ground about my fT3 being low in range managed to get 5mcg T3 prescribed and a checkup in 2 months. That seemed to lift the cloud of despair depression wise, but little else except for more regular periods. I went back and said as much, being told they thought my results were okay. I managed to argue there was room for improvement in the ranges and got my dose upped to T3 10mcg in split doses, on the condition my TSH isn't suppressed when I'm next tested.
Cue a change overnight. My insomnia, of often 2-4am couldn't sleep, went away like that. Within days I was more energetic, I really felt optimistic and where every day had been a struggle things just seemed so much easier, I kept thinking I'll get on top of that now, why not. I worried my heart was racing on occasions but realised taking my pulse it was not, just faster than it had been before. My temperature and HR went up to actually more like normal (36.7C and 70-80 resting) which HR wise wasn't good but not surprising I think for someone who hasn't exercised much for a year at all and was suddenly going up the stairs with a skip instead of lugging herself up.
Though I have to say this didn't last. I may have overdone stuff and/or stressed my adrenals with lax eating and flu, forgot to take B12/iron, ran out of Vit C. All too easy when you are feeling good to think less of what you did to get there and think of course it will last.
I ended up anxious, fatigued and insomniac again just like I was when hypo before. The anxiety has dissipated with a week and some careful rest. I'm still hoping with rest and attention on my routine again I can get back up to that good bright spot of 2 weeks I'd had. My appetite is near non-existent at the moment, a sign in my experience of my adrenal's shouting out to be left alone. It's a reminder that my health is fragile. The T3 undoubtedly was a positive step, more help than anything else I'd tried last year, but not a quick fix however much I wanted that. These are definitely long journeys we're all on trying to get better.
Sometimes I just wish it weren't the case that getting better feels like a full-time occupation that conflicts with every other interest in my life. Because it isn't just existing like it used to be - it's making sure I take this medication now, and wait to take the others later, when to get up, when to eat, what to eat, what not to eat, when I can risk eating something else to boost my morale, when I can focus, when I can manage that exercise I need, how much I can manage and not overshooting it, when to take the other supplements so they don't conflict, when to eat lunch to not interfere, remembering to take a 2nd dose, carrying all manner of things on my person when I got out, easy snacks available, plan ahead to have it there and not get stressed, constantly thinking ahead to get prescriptions and order more of everything I need daily, having to say no to things I want and pour my precious energy into enough work to keep it all going and paid for. Happiness can be hard to find in the middle of all that.