Hi. It’s been nearly two years since my Total Thyroidectomy in April 2012. I am doing well. I moved to Denver in the fall of 2012 after traveling to Africa for three weeks – something I didn’t think I’d have been able to do before the surgery. The thought of sitting on two 7-hour flights in a row knowing that if I had a thyroid storm, I wouldn’t be able to get treatment 30,000 feet over the ocean, and I’d die was too much to risk. That sucks for someone interested in international travel…
So here I am in Denver, I found an Endocrinologist named Eric Albright who spent a full 30 minutes with me on my first appointment! He’s knowledgeable, listens, informs me of things I’d never even heard of, even after 6 years of obsessive information searching for anything thyroid related. I have appointments at 6-month intervals for the first time in almost 8 years. I just realized that I’ve been going to an endocrinologist at least every two months for over seven years. That blows my mind.
I’ve been steady on 125mcg plus an extra half pill on Fridays – which is very close to the 137mcg dose, but I’m fine with the extra half. I lost almost 10 pounds last spring – intentionally, by recording my food intake – to get rid of what had built up during the roller-coastering. I’ve been keeping it off, but it’s a little hard in the cold, snowy weeks interspersed in a Colorado winter. My activity of choice is running. The stability of the post surgery levels has allowed me to make steady progress. In the last six months of casual jogging, I’ve been able to double my mileage and decrease my average pace by a full minute per mile and hit a couple of personal records while I was at it. And that’s on top of a full time MBA program with a 3 hour commute each day.
That’s another reason for my disappearance – I just finished my first semester in the MBA program at CU Boulder. As someone with little to no background, this has been a really intense learning experience, and not just academically. It’s the hardest thing I’ve done since the decision to remove my thyroid.
I got a really sincere comment recently and wanted to address it before the semester starts up again and it gets lost in the shuffle.
Just came across your post… Wondering how you are doing now post surgery.. Also wondering why RAI wasn’t an option. I was diagnosed with Graves’ disease 2yrs ago and just ended 2yrs of methimazole on 12/30/13. I’m scared for what’s next- hyperthyroid symptoms coming back. I have felt good with the treatment (except for the awful mood swings & craziness) and got my fitness back. Our stories sound similar; I run and have had three pr’s in the last year since thyroid levels normalized. I don’t want to start over again. So, if you wouldn’t mind updating me on how you are doing, I would really appreciate it. My endocrinologist is not as understanding or receptive as I initially thought. Hope you are doing well
So, I’m doing great! I’m in a really intense and stressful period with grad school and facing my fears about this huge financial risk I’ve taken. Without the stability, post TT, I doubt there’s any way I could be dealing as well as I have been, and believe me, it’s not been very graceful.
Stability. That was the main reason for my choice to finally have a TT after six years of the roller-coaster that is Graves’ Disease. I can’t believe my relationship survived those mood swings, though I did lose others. Perhaps more disturbing to me were the body changes. With each recurrence of hyperthyroid, my thyroid got a little larger and more visible; I lost muscle tissue and even if my weight did not fluctuate much, I gained a larger percentage of body fat as a result and lost a lot of fitness. I just had to wait for my levels to come down before I could even do muscle building exercise, let alone make any progress. I also lost a lot of the fatty tissue underneath my eyes at one point, and though I feel some of it came back, I think the disease aged me faster than time. Given the nature of the disease, how could it not?
Another form of stability present since my surgery is that my anxiety has all but disappeared. I may have said this previously, but I’d like to reiterate. I used to have to talk myself down from panic attacks all the time. I’m so grateful for that to be gone. It used to happen, less so, but still happened even when my levels were “normal”. Also, no palpitations. My heart muscle was stressed and now it’s not unless I do it on purpose with strenuous exercise. It’s a huge relief.
There were three main reasons why I decided that RAI was not an option for me. First, there is evidence that Thyroid Eye Disease – the bulging eyes – occurs more frequently in patients who have undergone RAI. Some endocrinology surgeons have suggested that removing the thyroid rids the body of the antigens, thereby decreasing incidence of TED. Not sure how much credible, peer-reviewed research has been done on that, however. Second, the stabilization period is much longer and more frustrating with RAI. You still have a slowly dying organ in your body making thyroid hormone at unpredictable rate and levels, respectively. It’s often the form of treatment recommended by the medical community, because to them, it’s relatively cheap, “convenient” and definitive – a relief to the medical community, but not to me. I didn’t suppose it to be any of those things, except for cheap compared to my shite insurance deductible. The third reason I chose the surgery over RAI was that my thyroid was enlarged and visible. It changed the way I interacted with the world. I withdrew and couldn’t get past feeling like a circus freak. If I really believed it was the best treatment, perhaps I could’ve found a way to deal with that aspect, but considering the other two, it didn’t seem worth it.
I have to admit that sometimes it freaks me out that I have to take a pill to stay alive, but those are the circumstances I chose based on the cards I was dealt, and I am still content with my decision. For the first year, I was on a high, so much relief. I felt human again. I felt like I could engage with the world again. I was high on happiness and relief.
That’s my story. That’s where I’m at. School starts in a week and it’s probably a safe bet that I’ll disappear again for a while, but do know that I receive email notices when someone comments, and I will respond. I know how difficult it is to navigate this disease, particularly when the internet contains mostly people’s horror stories while the success stories are so few and far between because we are then allowed to go on with our lives rather than living in a world seen through the lens of thyroid disease every moment of the day. So I’ll leave you with that run-on sentence and please feel free to contact me personally at kat (at) sudstress (dot) com.
I wish you all the best and keep moving forward one day at a time.