I just received the following comment and wanted to write a proper response, so I thought I’d make it a post rather than a short comment. I’ve been meaning to write anyway, so this is a great reason to do so. I swore I would keep up, but alas, life keeps moving swiftly.
I’m curious how you’re doing now. I’m having a TT for Graves Disease on Jan 3rd and I’m soooo anxious about life without my thyroid. All of the horror stories on the Internet have me so scared. Your story seems like a positive one so far. How are you doing now? I’m hoping that the few posts/updates means you’re out there living your life and not worrying about your thyroid anymore!!! Please let me know there is hope after TT!!!
Hi Jen, thank you for the comment and for the nudging me to update my story. I have indeed been living life like crazy for the last few months, which is why I haven’t written. Since July, I’ve done/am doing the following:
- moved from my apartment of 6 years into my boyfriend’s house
- studied for/took the GMAT
- quit my job (to travel and move)
- received immunizations for Polio, Typhoid, Yellow Fever, etc.
- traveled within Africa for 3 weeks
- was on anti-malarial preventative medication for a month
- sold my car and half of my furniture
- traveled back and forth from Atlanta to Denver/Boulder three times to piece together a multistage, cross-country move
- moved from Atlanta to Colorado via moving van for three days
- finishing up my application for an MBA program
I’m still in the process of getting settled, looking for a job, finding my way around, writing application essays, dealing with car insurance bureaucracy for a complicated car-borrowing situation, looking for a new endocrinologist, etc….
Indeed, living life.
Things have been a little irregular with my TSH levels, but I attribute that to the travel and transition from Atlanta to Colorado that is still in a bit of upheaval. I realize you probably deal more with T4 and T3, as I did since my TSH was pretty much at a constant .01, so relying more on TSH is something you’ll get used to after your TT.
I started with 112mcg of Synthroid (brand specific!) and my TSH shot up to about double the “normal” range. I was then put on 137mcg (two notches up in dosage) and at 6 weeks my TSH was headed back down toward hyper-range, and I was put on 125mcg. This seemed like the Goldilocks method (too little, too much, just right) so I figured we’d found our stable dosage. The catch is, I left for Africa the week I started on 125mcg and had little control over what I was eating – and we were all eating A LOT! Go figure. There could have been soy oil in everything for all I knew. When I did my labs (at only 4 weeks due to out of state circumstances) my TSH was way up and she wanted to put me back on 137mcg. This did not make sense to me because I was headed toward hyper on that dosage just weeks earlier. (I may be one of the few people you hear of that refuses a higher dosage, but I was having heart palpitations on 137mcg like I did when I was hyper naturally) So I held off and did my labs a couple of weeks later (again, still too soon, but necessary due to circumstance) and it appears as though my TSH is headed back in the right direction on 125mcg. Another kink in the chain, I was on Malarone – an anti-malarial for almost 30 days and that could’ve had an impact on my absorption. The color of the pill looked like it had pigment made from iron oxide – and that could have interfered with absorption.
As you can see, there were way too many variables to really be messing with dosage. I have to say, I’ve felt great and not great on each level of medication I’ve been on. It’s been so long since I’ve lived without an awareness of thyroid levels that I forgot what used to be “normal” for me. I’ve always been hyper-aware of changes in my body and when my levels fluctuated while I still had my own thyroid hormone, I could predict my lab results based on various physical symptoms, my menstrual cycle, and anxiety levels. With Synthroid, my T4 hasn’t fluctuated as much as my TSH, and perhaps that’s why I don’t feel the changes as subtly as I did previously.
Since my surgery, my menstrual cycle is exactly 28 days no matter where my levels are. That’s kind of weird.
Since I’ve stopped living out of a suitcase, remained in one time zone, and resumed cooking for myself, I am starting to feel better. I had put on a couple of pounds before I left for Africa, looking back, it seems stress related, but nothing anyone besides myself might notice, and then added about four more in Africa. I started to freak out, wondering if this was going to spiral out of control. I think indeed it easily could if I continued to eat road and restaurant food I while remaining sedentary as I couldn’t help but do, whether due to the moving truck, sitting on one of my 13 plane rides or even in Africa where it wasn’t safe or possible to go out for a jog among the hyena of the Masaai Mara or get lost out in the the middle of the Great Rift Valley in a little place called Ewaso.
So, as my life begins to stabilize, I predict that so will my TSH.
If I could offer some words of encouragement…
I would tell you not to be scared, but I know that’s impossible. I was absolutely terrified before my surgery. The best thing that I did for myself was finding a way to just let go. It was the ultimate lesson in learning to stop trying to control. You are the only one who knows what your personal lessons are surrounding this and it is a huge opportunity for personal evolution and growth that many people do not have the chance to undertake. Perhaps that sort of perspective can help calm your mind as it did mine.
Aside from the fact that I wake at 4 a.m. to take my pill every day, Graves’ Disease has been MUCH less intrusive in my life than it has been the last six years. I still feel relief. I still am thankful and find it difficult to believe that I have already gone through surgery. It still feels like a weight has been lifted. I still have $14K in debt, but after the initial sticker shock, that even feels okay. I’m alive, I’m functioning well, I feel positive about my future. I don’t have a single, miniscule thread of doubt or regret about making the decision that took me the better part of three years to make.
My scar is longer than most people’s because my thyroid was pretty big. It’s still red, but I haven’t bothered with Maderma or anything to minimize it. As soon as I find it, I’ll start using it. I kind of liked the novelty of it, it was something awesome to show for what I went through. Now it just clashes with necklaces… I don’t really have any hang-ups about scars, so it’s not an issue for me like it can be for a lot of people. My concern has always been the weight, muscle-wasting, and heart damage issues. I feel the surgery definitely mitigated those for sure! One more thing… I’ve stopped obsessively searching the internet for answers that don’t exist. What a relief.
I hope what I’ve said encourages optimism in you. I feel that above all, my greatest asset was my positive attitude that came from I don’t know where, just in time for the surgery. I think it was a gift that I was too sick for the original surgery date, as I was not in the proper head space for the best outcome. Attitude will be your best ally. That does not mean you can’t be scared, but you can feel the fear and still have a positive outlook. There is no other way to look at it.
If you want more detail regarding any aspect I may or may not have mentioned, ask away! I’m very open to sharing, just busy 🙂
I wish you the best of luck, Jen. You will be fine. Just take it one thing at a time.