I always knew there was something wrong with me. Maybe you can relate. For years I had a list of symptoms that hung over me like a curse, following me everywhere I went and impacting all of my choices. The symptoms were many and they often took away any illusion of free will I thought I had.
Planning things for the morning was always a crap shoot. It was a roll of the dice if I fell asleep the night before, and even if I did the next morning was always a slog to wake up. My lack of energy started the moment I opened my eyes and piggybacked on my weary bones all through the day, and even though I was always exhausted by the time I could crawl into bed I often couldn't sleep. What's worse was when I did sleep. I could never get enough. Eight hours felt like too much, but I wasn't rested. Six was too short and invited an all-day headache. Without an alarm I'd sleep ten or more hours easily, and on the rare days I got to do that I'd still wake up feeling as though I had slept for maybe four. It meant that if I wanted to do anything with myself, be it reporting to work or writing on this site, it took double the effort and considerable strain. Consuming media became my past-time, it just took less energy and resulted in less pain to do so.
When I could muster enough energy to pull myself out of bed, the worst of my curse would appear. Whenever I ate anything I needed to be sure that I was within running distance to a bathroom. Nine times out of ten anything going in would trigger a need to lock myself behind that door for twenty minutes, and I never knew until it was already an emergency. But, as bad as those times were, they were a blessing compared to the alternative. I would also go through periods of time where I never felt that particular call and weeks could go by where I'd never get that result. Add some bloating and a lot of uncomfortable--and even painful--expansion on to my already agonized existence and you can imagine I would start to feel very bad about myself.
Oh, right, the depression. I had that, too.
There was more--general weakness, aching all over my body, intolerance to higher temperatures, cold and clammy to the touch, trouble with focus, fuzzy memory... And issues with weight control. It felt like every calorie went right to my stomach. I steadily gained weight all my life eventually topping out at 250 pounds before I got drastic about it. Nothing worked; no amount of calorie restriction, balanced diets, and exercise could get my weight down or make it manageable. I had to reduce my intake to well below starvation--Top Ramen twice a day--and do Insanity every day just to make headway. I did it, eventually. Dropped 75 pounds. And as a result of that extreme lifestyle I developed even more health complications like constant inflammation in my skin and muscles, calcium deposits in my fatty tissues, and heart palpitations.
What I'm getting at is that I was at both extremes. My body, naturally, wanted to be nothing more than a ever-expanding sack of skin and self-loathing and the only tool that seemed to fix it was a self-harming amount of activity and starvation. This was no way to live. It was just too hard and too painful. I could only keep it up for about a year. I can count on my hand the number of times I contemplated suicide, and this was one of them.
Of course I saw doctors about this. Maybe you can relate to this as well. Ever go to the doctor and explain all your issues to them, get all the requisite tests and samples taken, only for them to look at you as though you're doing this to yourself? That look that says "it's all in your head"? I got that. A lot.
My tests always came back clean. I didn't have any abnormalities in my blood, nothing was cancerous, I didn't test positive to any diseases. I found out my blood type, what CMV is, and that I'm negative for that, too. Boy, when the Red Cross found that out I was hounded for my blood as often as I could give it. "Babies and Kids Specialty Donor" they called me. Told me I was saving lives. So I had that going for me, which was nice.
But no one seemed to know what was wrong with me. Because there was something wrong. Just because all the tests said that there wasn't didn't mean that there wasn't. I knew. But I couldn't prove it, and so I had to live like this. I had to ask the people in my life to give me an exemption to their plans at a moment's notice, I had to plan around the inevitable bad time I knew I was going to have, I had to get good at making excuses to avoid being anywhere for too long and why I had to leave early. I also got really good at apologizing.
But then something happened.
I moved a lot. Houses, that is. Growing up my family moved so much that I got used to living out of unpacked boxes. That's a story for another time, but since I could remember having these symptoms way back in high school--god I'm old now--I had moved enough to have different doctors in different cities, and even a different state, look at me. Though they all invariably came to the same conclusion, "your tests are fine", one doctor in particular couldn't let that go. It was this doctor that changed everything. And he did it with one simple statement, "your thyroid looks enlarged".
I always had a thick neck. Back in high school I was pretty fit before my symptoms took over. I swam and was a swimming instructor as an elective, I was lifeguard trained, I did a lot of fighting--I can't stand bullies and I always stepped in--and so I had gotten pretty strong. It was common for me not to be able to button the top button in any given dress shirt. So I didn't think anything of it when, long after those days faded into halcyon memory, I still couldn't button that top button. I figured that was just a remnant of my glory days of infinite energy and a body to match.
But my doctor pointed out that my neck was abnormally large. My thyroid, he presumed, must be enlarged. And if so it was his guess it wasn't working correctly. If it was under-performing then all of my symptoms would make sense. I'd be experiencing hypothyroidism, and that could be treated.
"Yes!", I thought. "Finally something to explain everything." I eagerly agreed to all the new blood tests--special ones to focus on thyroid activity--and told everyone close to me that things were about to change. That the Brian of yore would be making a comeback. I remember being so excited that while waiting for the test results I dove online to read everything I could on thyroids and related issues and diseases. I could check every box in the hypothyroidism symptoms list (except hair loss) and it seemed like I finally had answers to my decades-long struggle. Even better than that, I had a way out. It was just a matter of time.
And the results came back. Aannndddd... *drum-roll* They were normal.
No abnormalities with my thyroid function. Other than being enlarged, it seemed to be working just fine.
This devastated me. I had gotten my hopes up and paid the price for it. To be told that my symptoms could be summed up in a syndrome, but then that I don't have the associated malfunction to be diagnosed, was a blow to my heart. My way out seemed to close just as fast as it had opened.
There were some now highly urgent things to do thanks to having an enlarged thyroid. Namely, I had to get it checked for any cancerous cells. Get it measured. Basically build a profile on it in the event it ever changes. Of course all of this resulted in more "normal" outcomes, except for the size. It was pretty humiliating to explain, once again, everything I was experiencing to every new specialist and technician so that I could get each procedure done. Eventually I stopped explaining altogether and would just hand over the authorization forms.
Another few years pass. Nothing improved, nothing changed. Except my thyroid size, it grew. Not enough to cause alarm, but enough to re-measure it, re-biopsy it, offer my blood up to the gods and get told again that everything was normal except for the size. My doctor, however, wouldn't let it go. As I was giving up on finding answers again he was hard at work researching my case. Unbeknownst to me he was reaching out to specialists. The endocrinologists I had seen so far failed me, he must have surely thought, so he was seeking help from another kind of specialist. An otolaryngologist; an Ear, Nose, and Throat specialist.
I didn't know this, but apparently in my medical sphere the endocrinologists and other specialists I had seen thus far can't in good conscious recommend anything beyond preventative care when a patient's blood work shows nothing wrong. They can ask some basic physiological questions, such as "do you have trouble breathing", but unless I am gagging or wheezing they have to defer to the lab results before making any judgments. And since my super power is having normal lab results despite being a walking disaster, their hands were effectively tied.
An ENT, on the other hand, can make assessment calls based on their surgical knowledge of structures of the head and neck. This can be off-putting, since their intimacy with your inner workings can lead to a suggestion like "cut it out" when that seems a bit too casual to just throw out there. But in my case, when the ENT told me to look straight up, swallow, and then asked me how difficult that was, it was clear I had a problem. At least physically. I choked slightly whenever I got my hair washed at the stylist and I lean back in that water basin. I didn't know that wasn't normal. The ENT informed me it wasn't. He then spoke with me at length of what to expect living without a thyroid for the rest of my life. "A pill each morning," he said.
It was time for a judgement call. All my life I couldn't breathe if my head was raised or lowered too far. All my life I couldn't wear a tie properly or would get choked when hugged too hard. And all my life I had symptoms of hypothyroidism, but could never prove it with my lab work and there was no guarantee these things were related. Were physical inconveniences enough to make a call that may or may not have anything to do with my poor quality of life?
Would removing this large, but otherwise seemingly working organ from my body make things better or worse?
I decided to go through with it. I decided to get it removed.
It scared the hell out of me, but I was determined to see it through.
When I woke up from surgery the ENT came to see me at my hospital bed. He had a look of accomplishment on his face, but more than that he had this "you dodged a bullet" look. A look that told me that what he was about to say was going to be either very good, or very very bad.
- My surgery was supposed to take an hour and a half. It took four.
- A normal thyroid is about 4cm by 1.5cm. My thyroid was estimated to be about twice that. The ultrasounds were wrong, my thyroid was actually 13cm by 8cm.
- My thyroid had grown inward as well as thicker, and had began to wrap around my trachea and right carotid artery. It was literally slowly choking and strangulating me to death.
- My thyroid was the "biggest, ugliest, and nastiest" he has ever seen in someone of my (relatively) young age.
I had a monster inside me. And now it was out.
If you have stuck with me this far, then you might think that this was the end to all my issues. And in a way, that's true. But there's still a little more to tell, something that my primary doctor--despite all his attentiveness and dedication--never told me, something that my ENT--despite his expertise and thoroughness--never told me. Something that the websites or research I found only glossed over. Something that I need to tell you about before I can call this experience done. Something very important.
I crashed. Hard.
When they remove your thyroid they give you a super dose of synthetic thyroid and calcium to shore up your reserves as your body adjusts and you get cleared to start taking your new life-long daily medication. This super dose is meant to ease your transition, giving you enough of a buffer to burn through while your traditional medication routine is being set up and becoming ritual.
I think the amount they give you at surgery is pretty standard. But your starting medication is not. Synthetic thyroid medication starts at 25mcg, though in my case they started me at 75mcg. The goal is to get enough into your system so that you are "normal", but not too much so that you are "hyper". It's a target with a bulls-eye, and you want to get as close to the center as possible. So for the next couple of weeks I had to submit to a bunch of blood tests, presumably to watch my levels fall from their great heights to a baseline that everyone's comfortable with.
For two weeks I was on top of the world. Everything-worked-perfectly. Other than a tender slash across my neck, I was unstoppable. I had energy, I had passion. I had goals and desires that were all but broken dreams just a week before. I could even go out in 90 degree weather without feeling like the air was trying to kill specifically me. And all of my symptoms disappeared.
My dosage seemed to be perfect, as well. None of my blood tests came back with any information that made my ENT order any changes to my medication. He ruled that my next test would be in a month, patted me on the shoulder, and sent me on my way. Neither of us expected any problems. Except that I have a super power, remember? I can make any lab test look normal when it's not.
A week from my last visit and I start to feel drained again.
By week two I was lethargic. My body started aching again. I had a new symptom--my feet, legs, and back started to spasm uncontrollably at night. My curse had returned, as well, and with a vengeance.
Week three I was pale, cold to the touch. I had lost all joy, all motivation. Every day was an aching agony from the moment I woke up to the moment I had my restless sleep. My spasms now started happening during the day, randomly, and very painfully. I couldn't focus, the effort taking more energy than my body was willing to offer up. I couldn't remember. I couldn't think fast enough to hold a conversation where I didn't stutter, lose my train of thought, or just give up halfway through a sentence. For the third time in my life, thoughts of suicide permeated my mind in the spaces where any thought I could have at all was forming. I don't say this lightly, I have lived with depression my whole life, I have often felt everyone would be better off if I disappeared or died, but in only three separate occasions did I actually want to kill myself. This was one of them.
My wife feared for my life. My ENT and primary were on holiday, so she rushed me to the urgent care. She explained everything to the doctor on call and they ordered a blood test, stat. He upped my dosage, skipping one and going straight to 100mcg, and insisted on the pharmacy to fill it immediately. All either he or my wife could really do was hope that I could hold on long enough for the new dosage to take.
Week four I barely remember. My memory is a blur. There are periods in it where I remember I needed to focus on something, and that focus was sheer pain and torment because my head would be on fire and my body would be quickly catching up, and when I couldn't or chose not to focus anymore my mind just shut off. I imagine I slept a lot, but I never benefited from it. I gained twenty pounds in that month and I couldn't even tell you when I ate.
When my primary and ENT returned and I had my appointment with them, I got the results of that emergency blood test. It made my primary's face turn white.
What they measured was my TSH, or Thyroid Stimulating Hormone. It's what my pituitary gland sends out into my blood to tell my (non-existent) thyroid to do its job. You want this number low, which basically means that the pituitary thinks there's enough thyroid hormones in your body. Normal is a measurement of 0 to 2. 3-4 is considered concerning. 5-6 is bad and something needs addressed right away. 7+ is a fire alarm.
Mine was 13. My pituitary gland was screaming. Chicken Little was yelling the sky is falling.
My ENT bumped up my dosage again, now 112mcg, He informed me of my possible situation:
- It was likely, in his opinion, that my body was simply more demanding of a higher thyroid hormone level. Maybe my history of being active in high school, or a genetic disposition to needing more hormone, resulted in my needing of a larger dose and once on it everything will be fine again.
- It was also possible, however, that I could be thyroid hormone resistant. This would mean that the dosage doesn't matter, but the kind of hormone replacement would. More expensive, but more effective treatments would be my future if this is the case, with only a hope that one of them eventually works. Worst case scenario is that none of them do in which case I'm screwed.
- Least likely is a heretofore undetected other issue or disease that is actively targeting and destroying thyroid hormone in my body, otherwise known as "my super power is killing me".
He then ordered a new blood test, testing for all three metrics of thyroid health, TSH, T4, and T3. The last two are the actual hormone levels in your blood signifying that I'm indeed ingesting and not destroying the hormone, and that my body is using it properly, respectively.
I am pleased to say that test came back and I am on the low-side of normal in all three categories.
This was a long walk to explain a lot of things. If you read all of this, thank you for experiencing some of my troubles with me and sticking with me through this. I wrote this for a couple of reasons, one of which is to get it out there and off my chest. I needed to express myself, which is not a way I have felt in a long time.
Another reason I wrote this is in the hope that someone else who is experiencing something like this, anything even close to this, can see that they are not alone.
I felt alone when I was going through this, and I felt like I was burdening everyone around me for complaining and seeking help. I felt like I had to justify who I was and what I was going through, because none of the systems in place were doing it for me. I felt like giving up too many times, and any one of those times could have been the very real end for me. This is what my symptoms and situations did to me, so if they are happening to you I want you to know you are not alone.
It is okay to feel like you are not normal, but it is not okay for others to tell you that nothing is wrong when you know something is. Never stop seeking the help you need if and when you need it. And be the help someone else needs when they ask for it.
And though I only touched on it lightly, thoughts of suicide are serious and need to be treated as such. If you feel like you are thinking this way, please reach out. Write me, call a friend, talk to your doctor, or reach out to a hotline, but for your sake please do something.
Thank you, everyone who helped me through this. I couldn't have done it without you.