It's been a while since I posted as opposed to writing a comment..
Backtrack time: Two years ago I finally finally got the endo to raise the dose to 150 mcg thyroxine. It was great! I felt just as fresh and alive at the end of a work day as I did in the morning. 7 to 7.5 hours of sleep was what I needed and was not taking any daytime naps. My hair was growing back, I was able to move forward fitness wise which took several months, and whenever I managed to overdo things so my back was saying nasty things to me, a day later I was fine. Bowel movements like clockwork. Losing weight gradually due to having more energy to be active. Brain was working much better. I was not searching for words and not finding them. You name it, I was back to being me. I was gardening at my allotment, entertaining friends who came to visit and stay over during the summer, going grocery shopping and cooking was no big deal. I was cheerful, chipper, energetic. Regained my sense of humour.
So what does she do in January 2017? She suggests that I reduce the dose. I said 'no'. I continued along for another 8 months at 150 mcg and living the life. When I was back in August 2017 she says to me 'possibly you have some sort of emotional disorder. Either you are very low or you are very high.' (Excuse me but what idiot isn't happy when they feel great? And who isn't unhappy when they feel like a halfdead? What is wrong with these doctors? )
Then she says (which we all here know full well is bogus) that TSH is suppressed and bones and heart and blah blah. I told her to continue writing 150 mcg tablets and I'd skip one tablet per week. Why? Because this way I'd still be able to take it every day if it turns out that reducing the dose would be proving to be a bad idea. I must be able to have control over my own well being. I cannot tolerate anyone having control over my life, limiting my access to what I know is right for me.
Dose reduced since August 2017. October was the worst month. Half of my hair fell out. Yes, half. I literally pulled a wig's worth of hair out of the bath plughole on two occasions. Other people noticed that I am going bald so it's not my imagination. I had to tie my hair back to reduce the amount of hair that was falling all over the place. Even so, I was having to pick hair off my clothes and food.
Recovery from physical activity went down the drain. I had been using a rowing machine at home and gradually was no longer able to use it because the days I exercised, by half way through the day my energy level would crash.
And the depression started up because I couldn't get my life done. I needed to sleep 10 hours out of every 24 just to function. Waking up unrefreshed. I'd go to work already tired and was ready for a nap by 2 p.m. The rest of the workday afternoon was a torture of physical pain and mental fog. The days I didn't work, I could hardly wait to take an afternoon sleep of anywhere from 1.5 to 3 hours depending on how much sleep I got at night. It was like there was an absolute requirement of 9.5 to 10 hours. My back pain would show up and not leave. I was taking medications for muscle spasm, stuff I barely took for two years. I had to renew prescriptions for these thing. I was only getting one decent bowel movement every 5 to 7 days. Good thing I eat enough soluble fibre that it wasn't concrete. Housework has not been been done properly for the past two months (just had no energy left). Grocery shopping and cooking became something to dread. Even taking supplements has been neglected because I look at the bottles and tell myself 'later' or 'tomorrow'.... and after many 'tomorrows' eventually I take them and then it's another set of 'tomorrows'. I do take the thyroxine religiously because otherwise I'd be dead.
I know I've gained some weight but I'm not going to look.
Last week on Tuesday morning (skipped dose on Monday and did not take anything on Tuesday before the blood was taken) 9 a.m. got bloods taken. Then I took two tablets and have continued taking 150 mcg daily since and will continue like this. Appointment with endo is end of January. I must start taking the right dose or else I won't be able to function anymore. Gardening season is coming up, starting seeds indoors, and I have a cat that was just now diagnosed with Polycythemia vera. I must be able to cope with this. He's at the hospital until tomorrow and they are doing all the right things for him. Eddie is such a self confident, super chilled out, pleasant cat. Never met a vet who was not impressed by this cat's demeanour. There's some major things to sort out here and I don't need to be overwhelmed. Good thing I started full dose a week ago!
I will be creating a sort of Excel spreadsheet of thyroid life experience for the endo. What it was like to be on 112, 125, then 150, and then down to 128.....
I know my TSH will still be very very low even on 128 because the pituitary doesn't respond properly. She fooled around for a couple of years with T4/T3 combos. My HbA1c went up because T3 screws up my glucose metabolism. My body is adjusted to a lowish fT3 after many decades and it just doesn't do well with an fT3 above 5.0. I'm not including that life experience on the spreadsheet. T3 is not for me.
At least I'm not getting heart palpitations to die for which were happening on 112mcg. And I don't feel like I am walking through water. But I was moving slowly and had no enthusiasm for taking even short but necessary walks. It was somewhat frightening to go from taking long walks in stride to not looking forward to any walking at all.
One week with the full dose and I'm noticing that some things are getting gradually better. Bowel movements have returned. 5 days in, I felt better for the first couple of hours in the morning.... now feel better until about noon. Not desperate for an afternoon nap today although did nap yesterday for several hours. Still have not completely cleaned up my place. But have done the laundry.