Let me start this by stating the obvious: I am not a doctor. I am not making broad statements about thyroid hormone replacement therapy. I am talking about my experience with combination T4/T3 therapy and my experience with Levothyroxine (T4) monotherapy. I'm not writing this because it's what I think you should do. I'm writing about it because I have found it helpful to read others' experiences with thyroid hormone replacement therapy and because it helps me keep track of what happens when I make changes in my health plan (my paper journal sadly does not have a handy dandy search box for easy reference).
So! A little background. I had a partial thyroidectomy in April of 2013 and a total thyroidectomy at the end of May 2013. I have done my fair share of reading but I do not have a science-y brain so I don't have a firm grasp on thyroid function beyond: A healthy thyroid makes a number of hormones but only one (T4) is required for life. I started on Levothyroxine monotherapy shortly after my second surgery, which is a fancy way of saying that I starting taking T4 only.
The thing about thyroid hormone replacement therapy is that it isn't one-size-fits all. It can take a long time to find the right dose of T4. It can also not take a long time. Bodies are different. Everyone reacts differently. #science #captainobvious
It took over a year for me to find my right dose and when my endocrinologist was satisfied that we finally had found my right dose, I wasn't happy. I didn't feel well. My energy level was inconsistent. I had a lot of muscle and joint pain. My hair wasn't growing. My skin and nails were dry. My naturopath suggested I try combination T4/T3 therapy and I was desperate so I decided to give it a go and see how I felt.
I've been taking T4 and T3 for a year and it's been both a positive and negative experience. I was able to get stabilize my TSH more easily, which makes sense because T3 is the active form of thyroid hormone and doesn't need to be converted in the body. My daily pain diminished. But adding T3 to the mix was wildly inconvenient. Thyroid hormones are kind of a hassle to take. You have to take them on an empty stomach. You can't take them within four hours of calcium or iron. T3 needs to be taken twice a day because the body uses it so quickly. I had to schedule my pills and supplements and meals down to the minute and it made me anxious. My pill schedule made me feel like a sick person, which is frustrating because I don't feel like a sick person. Also, T3 isn't so great long term for the heart or bones so when I started having heart symptoms recently (nothing serious - just the occasional racing and sometimes pounding heartbeat) I started thinking about reverting back to taking T4 only.
I switched endocrinologists earlier this year because of issues with my previous endocrinologist. This week I saw my new endocrinologist for just the second time and we had a great conversation. It solidified my confidence in my choice to switch doctors and made me feel hopeful that we can make T4 work for me. I'm a little nervous. It takes 4 - 6 weeks for a new thyroid hormone dose to take effect so if you don't get the dose right and need to adjust it, you're looking at another 4 - 6 weeks of wonky thyroid hormone issues. But I'm trying to focus on the big picture which is this: I only need to take T4 once per day so I can be more relaxed about my pill schedule , T4 costs 10% of what T3 costs so if we ever lose our extended benefits we won't be paying hundreds of dollars every month for my pills, and if I ever get pregnant again it will be much easier for my doctors to regulate my thyroid hormones (pregnancy wreaks havoc on thyroid hormones, especially if you don't have a thyroid).
So! Brisk clap! I am nervous and I am hopeful. There is a lot of information out there about how horrible T4 is and I agree with some of it to a certain extent. The thyroid hormone replacement world seems to be a particularly controversial one but like I said, I'm not speaking to anyone's experience but my own. I'm always interested to hear about others' experiences though, so if you're on a T3/T4 combo, or natural dessicated thyroid, and want to talk about it, hit me up. I can talk thyroids all day, every day.
