It’s funny when you’re looking out for bumps in the road, how you can completely miss a big ol’ pothole that jacks your sh*t up.
Maybe I only think this is funny because I live in the south or because I can mimic it really well…. and because there are some nasty potholes down here! And not just the metaphoric kind.
This remission junk has me all flustered. I’ve been in remission once, it lasted a year.
Being hyperthyroid sucks. The first time that led to my diagnosis was great, though. I had loads of energy, I lost a few pounds, and I felt like I was always on allergy meds (read: speed). Aside from these signs, the first noticeable abnormality was when a guy I was seeing mentioned that my heartbeat was twice as fast as his. I dismissed it until my throat swelled and I freaked out and went to the doctor, was referred to an Endocrinologist, and went on anti-thyroid medication. I didn’t think too much about it once things settled down. The gravity of the diagnosis did not sink in until two years later when I came out of remission. I didn’t fully understand what was going on in my body or what it meant to live with an autoimmune disease that would take such a toll on my body, mind, and relationships.
Looking back, even though it just felt like twenty-something melodrama, I had a lot of emotional turmoil that fluctuated with my levels. Graves’ is associated with anger spells. I had those. “Graves’ rage”… I even lost a couple of friendships because of it, though I didn’t understand or forgive myself and them until recently. Graves’ Disease often gets misdiagnosed as bi-polar disorder because you really do have those high highs and low lows. I remember a Thanksgiving with my family in Boulder about four years ago and I had this spell of incredible anger/sadness/depression to the point where I thought living wasn’t such a gift. Thankfully I made it through that, and it’s a place I never want to visit again. At that point, I was on the same dose of AT’s and wasn’t having my blood work done regularly and I think my thyroid levels dipped too low. I learned an important lesson and have gotten my levels checked regularly, every 6-8 weeks, since then.
When I came out of remission and went hyper for the second time, it wasn’t pretty. It aged me about 8 years, instantly. People have said to me “oh, at least you have the good one where you lose weight.” … get ready for an anger spell. In fact, I did lose weight, but it was all lean body mass, muscle mass, cardiovascular strength, I lost a lot of the fatty tissue under the eyes, making me look like a crack whore. When I went back on medication, I gained a good amount of fat on top of the muscle loss, I had belly fat overnight – which was something I never had all of my life, so my body composition has changed. The average weight gain after 4 years from Graves’ Disease regardless of treatment method, is 25 pounds. So, even though I fear weight gain after a thyroid removal, I’ve manged to keep my weight fluctuating within a range of about 10 pounds, so I suppose I’m doing alright so far.
Other fun side effects of being hyperthyroid include heat intolerance, shortness of breath from simple things such as speaking, fine muscle tremors, heart arrhythmia, and anxiety. Right when I came out of my pseudo-remission, I tried working in fine dining. Serving martinis and pouring wine were quite embarrassing. I had a very noticeable tremor in my hands and was completely uncontrollable. Guests must’ve thought I was hungover or ‘drying out’. I’m sure I was judged, but I have a feeling I was being judged just because I was serving them in the first place. Also, when speaking, which I had to do a lot of, I would run out of breath. I tried to hide it, but it was as if I’d run a mile before speaking to each table. We also had to wear jeans, a long sleeved, white button up, and a full body burlap type apron. As you can imagine, Atlanta is quite warm in May. The building where I worked was old, air conditioning leaked right out the walls, and forget it if I had a patio section. I was a sweat ball. I’m usually the person who is always cold, so this was a new thing for me and I felt like I was suffocating in my clothing. I didn’t stay at that job for very long. Also, it was a shitty place to work.
Fortunately, at the age of 19 I experienced a panic attack, which has enabled me to talk myself down from the hundreds of attacks I felt coming on over the last six years. I know this is directly related to thyroid, because I don’t experience anxiety when my levels are normal. I’ve been fine for months and months. When they’re up, though, I’ve felt on the verge of one at work, behind the bar, in the middle of service; on the highway; anywhere it would make a scene, I’ve had to talk myself down from one. Clearly, that makes genuine, friendly interaction difficult sometimes. I’m pretty proud of myself for dealing with it through breathing and mental tools, but looking back, MAN is that exhausting. I think most people would be on Valium, or whatever the patented, brand name anti-anxiety pill of the year is. (Notice what I’m reading off to the right there, it’s heightened my skepticism of prescription medication.)
Relatively shortly into my relationship with my boyfriend, he surprised me with Ray LaMontagne tickets, which, even though I guessed and ruined the surprise, I was really, really excited about because I’d missed the opportunity to see him live a couple of times and I really like him. Anthony had worked that day and so we decided to swing by Whole Foods and eat something before heading out to Chastain. All of the sudden, at the hot bar in Whole Foods, I started having palpitations, like regular, frequent palpitations; unlike the occasional disturbance after exercising or something. It was very scary, I was literally thinking “I don’t want to die yet, I have so much left to do” while staring at the napkin dispenser and trying to calm down. Then, by the time things settled and we left for the show, we ended up arriving right at the intermission and were disappointed to find that we’d missed Ray and had to settle for David Gray. I had to use my mental strength to appreciate what I had (David Gray and an awesome boyfriend who wasn’t my boyfriend yet) and not what I didn’t have (the experience of seeing Ray LaMontagne live). Either way, I don’t want to put my heart in danger like that ever again.
These are all symptoms that subside once thyroid levels are brought down. The problem is that the cardiovascular effects become more dangerous as I get older and levels don’t adjust the instant you take the pill. It’s a long process to get the levels down. The key to thyroid medication, whether supplementing or blocking, is consistency. It takes a minimum of 6 weeks to see the effect of a dose, so it can take about a year to get both T4 and T3 into range. That’s a long time to be dealing with symptoms like these. I think I’ve had enough of those wild swings. It’s very disruptive and damaging and after 6 years, I’m looking for some stability.
As many fears as I have concerning this surgery, the one real hope it offers me is a chance at stability. I recognize that it might be a rough go at first, trying to find the right levels, I may not feel right for quite some time. I might not ever feel right. I don’t even feel right, right now. My levels are so low that I’ve been experiencing hypothyroid symptoms. Depression, tiredness, lack of energy – I have to force myself to go out for a run and when I do, it’s like I’m running through three feet of water. Only a few months ago, might I remind you, I came in 3rd in my age group for the Thanksgiving 5K and craved going out for a run. It’s a stark difference in how I feel with a reduction in my thyroid levels. My muscles just feel like they’re not getting what they need to work. It’s a strange feeling, unlike losing fitness from being inactive. It’s a very strange feeling. I also have had a little bit of depression, which I don’t like at all, but when I can recognize these as physical symptoms from low thyroid, it helps me to not identify with it and therefore not beat myself up or think something is wrong with me, other than a stupid autoimmune disease.
My hope is, once I find an optimal dose of thyroid hormone after surgery, that I can take those wide swings out of the equation and get on with my life. It’s taken a lot of mental energy for me to try to maintain any sort of homeostasis, and in fact, mostly I have to fake it to trick myself into feeling balanced. There’s no denying that I am at the mercy of numbers, but I have a certain element of control if only in the perspective I choose to view my circumstance. It’s tough in the moment when things are out of whack, and it’s a lot easier to look upon my experience with normal levels of thyroid hormone in my bloodstream. I’ve made this decision with a level head and maintain my decision.
I don’t want to let this surgery creep up on me while I’m waiting and seeing. I want to actively move towards it with intention. Participate, not let it happen to me. That’s very important in avoiding regret. I have to approach this with the intention that it is my choice. I’ll never be 100% sure that my decision is the right decision, and that’s what has kept me from making this decision. I have to move forward with the attitude that I’m moving forward. I do not have the option to look back after the surgery, and though I can still cancel it in the next 26 days, I have to take that perspective now. There are several very good reasons why I have made this decision that don’t really change according to my latest lab values. I am still scared. Very scared. So scared that I have been writing letters to the people I love, just in case…. But I’m moving through this fear and it could be the best thing I ever do.
Maybe it’s all just a big hoax to trick me into thinking I have control of my destiny, but I’ll leave that discussion up to the philosophers of yore and Stephen Hawking, and I’ll just focus on my perspective.