Sunday, January 31, 2016

Autoimmune, Part Deux

Several months after I was diagnosed with Type 1 diabetes, I sat in our family doctor's office with my dad while she talked about having me get a blood test for something called celiac disease. Like diabetes mere months ago, I had no idea what this was, but the doctor explained that some kids with Type 1 also had this condition and couldn't eat certain foods like bread. As she stepped out of the room, I asked my dad what I'd eat if I couldn't eat bread. "They make potato bread," he replied.

"Potato bread?!" I exclaimed. "I wouldn't be able to eat that, either!"

"Oh, that's right," he chuckled as the doctor walked back into the room with the blood test form.

I didn't realize it at the time, but it was my first hint that often people with one autoimmune disease develop another (or several others). I learned that fact years later as I delved into reading online diabetes content.

Thankfully, I didn't have celiac disease when I was tested back in 1991, and I haven't developed it since. In fact, I've gone for over 20 years without developing another autoimmune condition, although my immune system has remained plenty overactive in the form of allergies and related conditions. Over the past year or two, these allergic conditions have clamoured for a spot that rivals diabetes in terms of their effect on my everyday life. I actually found myself getting a bit cocky. My immune system has been so focused on attacking the external world—maybe I won't be one of those people who develop multiple autoimmune conditions.

But then, sometime during the fall, things began to change.

I gradually began to feel tired. Exhausted, in fact. Getting up in the morning or running errands became great feats of willpower. I worked at getting my sleep schedule exactly right, as it had somehow become messed up with me being unable to fall asleep for hours or waking up restless and hungry and hot in the middle of the night. I worked on exercising as consistently as I could, which I'd stopped doing because I felt so tired all the time. I worked on eating better, because my stomach had been getting upset a lot lately. I worked on controlling my blood sugar better, since it seemed that my pump settings were suddenly all wrong and I was spending a lot of time battling highs. I worked on keeping my allergies under better control, thinking that those could be the cause of my tiredness as well as my eyes being in a constant state of (at times almost unbearable) irritation.

A small alarm bell went off in my head when I found my arm getting tired just lifting a one-litre carton of almond milk to pour. I called my GP and made an appointment. It was my first inkling that this wasn't normal tiredness. Around the same time I also noticed that my heart was pounding much of the time for no reason. One day I also found that my hands were trembling when I did things like cooked or unlocked a door, which raised my level of concern a notch farther but that I thought must be from my muscles being so ridiculously tired. And, as things approached the coming climax, I found myself feeling overheated and dizzy at times, but who wouldn't when their body acted as if cooking dinner was running a sprint?

Fortunately or unfortunately, I didn't make it to the appointment I'd scheduled with my doctor. One weekend, in the middle of sitting having a lengthy text conversation with a friend, my heart started to pound faster than it ever had before. I interrupted our conversation to tap out: I don't think it's normal for my heart rate to be 140+ while I'm just sitting here. :(

As my friend's alarmed return text popped onto the screen and my fitbit's readout climbed to 186 bpm before cutting out completely, I sensed that things may have reached a new level of severity. I tried lying down, and although that lowered my heart rate somewhat, it still beat far too fast. A text came through from my friend suggesting I go to a walk-in clinic. I called my parents to ask their opinion. They suggested the hospital. I decided to wait an hour to see what happened, but when nothing changed, my parents came to pick me up and together we headed for emergency.

Monitor displaying my vital signsUpon arriving at the hospital, they wouldn't even let me walk to the bed; I was immediately taken into the back in a wheelchair. In short succession I got hooked up to monitors, had a chest x-ray, got a bunch of blood drawn, had an ECG done, and had an IV inserted after only two failed attempts (not bad for me). I told them about how bad I'd been feeling lately, at least everything I could remember amid my mind's worried thoughts. A couple of hours later I had another ECG done and got more blood taken. And then I lay there for hours, alternatively talking to my parents and texting my friends and resting because even texting raised my heart rate and tired my arms out, wondering what was causing my body to go haywire. Emergency doctors and cardiologists came by and ran through some possibilities related to my heart, none of them sounding particularly good.

At some point after midnight my parents left to go get some sleep. And then, during the early hours of the morning, one of the doctors came by again to tell me that my blood test for TSH had come back so low that it was undetectable.

"Thyroid," I thought. I felt a jumble of emotions all at once. On one hand, this was probably the answer to why I'd been feeling so horrible, and I was positive that a thyroid problem was way better than a heart problem. On the other hand, I had no idea how an undetectable TSH level was treated. I also had a hunch that thyroid problems were autoimmune, and felt a flash of annoyance that my immune system had screwed up once again.

I stayed in the hospital until the following afternoon. During the night I was given a beta blocker to slow down my heart rate and lower my blood pressure. Not having my heart pounding as if I was exercising while lying still allowed me to sleep for a couple of hours. During the night and the next morning I was visited by a number of endocrinologists who ran through a list of symptoms. Obviously my heart rate was fast and my blood pressure was high, but had I been tired lately? Yes. Trembly? Yes. Upset stomach? Yes. Trouble sleeping? Yes. Hungry? Yes. Hot and sweaty? Yes. Irritated eyes? Yes. About the only symptom on their list I hadn't experienced was losing weight. And although they didn't ask about my blood sugar lately, I did learn that thyroid hormone affects almost every part of the body, including the speed at which food digests. That would probably explain my struggles with spikes and why it seemed as if all my pump settings were wrong.

The endocrinologists also explained what was going on. My thyroid was pumping out way too much hormone, which is why my TSH level was so low. I was given a medication to block my thyroid from making the hormones T3 and T4. The exact cause wasn't known yet but, as I suspected, they said the most likely cause was an autoimmune attack.

I texted my parents in the morning to let them know what was going on. My hospital breakfast was not terrible and, impressively, accommodated my multiple food allergies. (I'm not sure why I find this so impressive; perhaps because the last time I was in hospital my mom inspected the food as if she thought they were trying to kill me.) The doctors offered to keep me admitted for another day or two, but said it was safe to go home if I wanted that option. Of course I decided to go home, bringing with me two prescriptions, a form for lab work, and information about getting a few other tests done.

After I got home, I continued feeling awful for the next month. I used up a fair number of my work sick days, although luckily the Christmas break provided me some built-in recovery time (even though it's not great feeling sick over the holidays). Some complications happened in terms of medication—I found out when I saw my allergist that beta blockers can block asthma medications and epinephrine. Not good for someone with asthma and food allergies. So, I took as little as I possibly could with plans to stop as soon as I felt better (which had been the plan all along).

Finally, one morning more than a month after starting the thyroid-blocking medication, I woke up and actually felt awake and energetic. I went about my day and my heart wasn't pounding and I wasn't wanting to collapse into bed by early evening. It was such a relief. I didn't fully realize how awful I'd been feeling for months until I finally felt better. Once I felt better, my blood sugar also took a dramatic turn for the better.

I saw my regular endocrinologist last week, six or seven weeks after this whole ordeal happened. He had all the test results from the hospital, including the blood test they did to see if I had antibodies attacking my thyroid. Not surprisingly, the antibody test was positive, meaning I have Graves' disease. This is an autoimmune disease where antibodies attack the TSH receptors on the thyroid. Even though my body's TSH level went to zero, trying to tell my thyroid to quit making hormones, my thyroid thinks that it's constantly being told to pump out more hormones because it's being stimulated by the attacking TSH receptor antibodies.

By the time I saw my endocrinoloigst my T3 and T4 levels were one-half to one-third what they had been at the hospital and were in the normal range. My TSH level, though, was still near zero. And so the plan that my endocrinologist outlined is to stay on the thyroid-blocking medication, get thyroid levels checked every six weeks so that he can adjust the dose as needed, and then continue the medication for a year or two. Some percentage of people are able to stop taking the medication after one or two years because their immune system stops producing antibodies, but many aren't. So, if I'm still needing thyroid-blocking medication in a year or two, we can talk about other options. Other options being destroying my thyroid, which doesn't sound appealing to me. Either way, there will be medication for life (either thyroid-blocking medication or thyroid replacement medication), unless I'm in the lucky group that has the thyroid antibodies disappear.

This entire diagnosis shocked me and caught me completely off guard; partly, I'm sure, because of the drama of being diagnosed. Like diabetes, it was a disease I'd not really heard of coming completely out of the blue. And, just like diabetes more than two decades ago, the symptoms were all there, I just had no idea that they were all connected to my thyroid going into overdrive. I've read a lot about hypothyroidism and diabetes, but nothing about hyperthyroidism and diabetes. They are both caused by an autoimmune attack on the thyroid but involve different antibodies.

On the plus side, managing this disease (at least so far) has consisted of taking two little pills a day. There are still some days here and there where I feel bad, but they aren't often, and the daily management of this disease doesn't even compare to diabetes or allergies. I'm not even two months in and I already feel like I've reached an acceptance stage.

Although ... it is perhaps a bit sad that I already find myself half wondering what innocent bystander my immune system might decide to target next.