4. The Symptoms

When you Google Graves' Disease, one of the first images you will come across representing the illness is this:

This is the stuff nightmares are made of.

I don't want to tempt fate or anything, but so far, this has not been a problem that I've experienced.  It's a symptom known as Thyroid Eye Disease (TED) or Graves' Opthalmopathy, and it scares the ever-living bajeebuz out of me.  I know that the pictures they're using to represent this particular side effect are the cases that are like, the worst of the worst, but still.  I am an artist, you guys.  I need my eyes to work.

I have almost every other symptom possible, and I will try really, really hard not to complain too much about it if I can only avoid the TED.  Since this is a post about symptoms, after all, I have no choice so I'm going to attempt to be at least a little bit less serious in this post and hopefully the universe will give me a 'pass' on this one.

If you think you might have Graves' Disease and you want to know what the symptoms are, or if you happen to know someone who does have Graves' and you want to know what they might be going through, check out the list:

• Anxiety

This is easily my number one issue and the hardest part of my day.  Maybe it wouldn't be so bad if I didn't already have an anxiety disorder, but honestly?  Anxiety blows.  If you've had a panic attack before, you already know that it is probably the worst experience of all time.  If you haven't, you won't understand... and in my experience, this is the most frustrating part of anxiety.  People who don't have it think it's no big deal or think that you are weak for not being able to just "stop thinking about it".  I could - and at a later date, probably will - go on about anxiety enough to fill a whole post, but for now, let's just say that anxiety is the worst thing in the history of the universe and it is ruining my life.  That seems hyperbolic, but I swear, it really isn't.

• Irritability

I feel pretty confident that irritability is nowhere near as bad for the Graves' patient as it is for the people around the Graves' patient.  Please try to be understanding if you have a loved one who is suffering from Graves' Disease.  We don't actually hate you; our disease does.

• Difficulty Sleeping

I think that when people are compiling a list of Graves' symptoms, they should stop listing this problem as "Difficulty Sleeping" and start referring to it as "You Are Not Sleeping Again, Ever".  OK, OK... this time I am being hyperbolic.  The truth is that even though I am exhausted all day every day, it is impossible for me to fall asleep prior to 3:30 AM, and I am awake again within four hours.  And that's on a good day.

• Fatigue

This is another serious understatement.  Fatigue is not nearly a strong enough word.  It's more like "even thinking about walking to the bathroom to pee will be overwhelmingly tiring".  This is probably closely related to the previous symptom, Difficulty Sleeping.

• A Rapid or Irregular Heartbeat

This particular side effect is especially fun when partnered with anxiety.  In my case, it is a rapid and very strong heartbeat with a side of palpitations.  Enter: beta blockers.

• A Fine Tremor in Your Hands or Fingers

This is apparently accurate in most Graves' patients, or anyone with hyperthyroidism, really.  If you're lucky, you will experience it more like I do:  Insane Full-Body Tremors Which Can Be Seen Easily By Onlookers

• An Increase in Perspiration; Moist Skin

Check!  This particular symptom is confusing to me, as I have always been the girl who was constantly cold, even in summer.  Suddenly, I am sweating like I'm sitting in a sauna which is super attractive.  It's especially bad when I sleep.  You should see my hair in the morning:

Who doesn't want to wake up with Kramer-hair?

• Sensitivity to Heat

See: previous symptom, "Increased Perspiration".  An excellent combination.

• Weight Loss Despite Normal Eating Habits

Sometimes, hyperthyroid people kind of enjoy this symptom.  That outlook will quickly wear off.  I have been pretty small all of my life, but not like now.  Now, size 0 clothing is too loose.  Did I mention that The Mister is Greek?  Being the size that I am now is completely unacceptable to Greek mother-in-laws, who will run their fingers along your spine and cry.  I promise you I'm not exaggerating.  It is also really expensive to purchase bras with enough padding to make you not look like a 12-year-old boy.

• Enlargement of Your Thyroid Gland / Goiter

Can we take a moment to talk about how terrible the word "goiter" is?  Nobody wants to say that they have this.  You also do not want to Google "goiter", because this is another situation where what comes up is the-worst-of-the-worst.  I really don't understand how these people did not end up at a doctor's office before the bulge in their throat got to "bullfrog" level.

• Change in Menstrual Cycles

Dear Internet:  I don't know you that well, and I'm not particularly comfortable discussing this particular issue with you in detail.  I don't actually think it needs more clarification, so let's just move on.

• Erectile Dysfunction or Decreased Libido

So... this list got personal and quick.  I can't really speak about erectile dysfunction, so let's skip ahead once again.

• Frequent Bowel Movements or Diarrhea

This is another one of those symptoms that doesn't really need an in-depth explanation.  For the record, I am not experiencing this particular problem.

• Bulging Eyes (Graves' Opthalmopathy)

See: image at the beginning of this post.  Graves' Opthalmopathy occurs in up to 50% of Graves' Disease patients, and it does not sound like much fun at all.  The skin and tissues around your eyes become tight and pulled back, and aside from the bulging eyes, can cause excess teariness, dryness and irritation, a gritty sensation and/or pressure and pain in the eyes, light sensitivity, double vision, reduced vision, and more.  I am so scared of this possibility.

• Thick, Red Skin Patches (Graves' Dermopathy)

This particular problem is fairly rare and tends to show up on the skins / tops of your feet.  I don't have Graves' Dermopathy (knock on wood) and I don't know too much about it, but I imagine it is uncomfortable and sucky.

So, as you can see, Graves' Disease has a bunch of potentially crappy symptoms.  If someone you care about has Graves', have patience with them - even if you can't see it on the outside, they're going through a lot every day.

And if you have Graves', I officially give you permission to throw yourself a pity party.  But remember to try to be nice to the people who love you... we sweaty, shaky, irritable, and panicky Graves' people aren't always a picnic to be around, you know.

3. The Prescriptions

I've mentioned before that my endocrinologist prescribed a few medications to help with the Graves' Disease symptoms, but I haven't really gone into detail about what they were.  Let's talk about them now.

It's probably worth mentioning that I was diagnosed with acute anxiety disorder way back in 2002.  Maybe you've heard of it - or it's "cousin", generalized anxiety disorder. (I honestly have no idea what the difference between the two is, so if you're wondering, I'm the wrong person to ask.)  After suffering from a few really horrid and really frequent panic attacks, my family doctor gave me a prescription for Celexa (to prevent panic attacks) and another for Ativan (a sedative for when a really bad panic attack happened).  I hated the Ativan and tossed them in the trash, but stayed on the Celexa for about a year, until I found myself pregnant and decided it was time to stop with the meds.  Fast forward a few years, and the attacks came back with a vengeance.  I went back on the Celexa but skipped the lorazepams this time around, and remained that way for a few years.

Two years ago, I got my panic disorder under control and stopped the Celexa once more.  I'd have the odd panic attack here or there, but I'd more or less found a way to keep them from getting out of control and I really didn't feel like I could say that I had an "anxiety disorder" anymore... that is, until the Graves' kicked in.  Very suddenly, I was having at least one panic attack per day - usually more - and spending most of my day in a state of heightened anxiety.  I could no longer get on the bus or subway without launching into a full-fledged attack, and the day that I attempted to take a cab home from downtown Toronto and ended up hyperventilating so badly in the back of said cab that an ambulance was called, well, that was the day I had both prescriptions renewed.

Celexa (I take 10mg)

Ativan / lorazepam (I take 1mg as needed)

Side note:  It's worth noting that a lot of the symptoms of Graves' Disease are similar to those of an anxiety disorder, and Graves' patients are often diagnosed with anxiety disorders a few years before the Graves' is discovered.  I don't know if I'd say I have had Graves' all along - things only got really bad in the past six months, and prior to that I even gained some weight (which I promptly lost all of), or if I'd say that the Graves' symptoms just accentuated the panic disorder symptoms and landed me back into the anxiety overdrive zone.  But it's an interesting association and it seemed worth mentioning. 

On my first visit to the endocrinologist's office, I was prescribed beta blockers (Atenolol) for my heart palpitations and crazy rapid heart beat.

Atenolol (I take 50 mgs)

On my follow-up appointment, I was prescribed Methimazole to help slow down my thyroid (and the associated hyperthyroid symptoms).

Methimazole (I take 10 mgs)

I wish that I could tell you that any one of these prescriptions has made enough of a difference for me to take notice, but I'd be lying.  (Although, in all fairness, I've only been on the Methimazole for about 10 days, so maybe they just haven't kicked in yet.)

The Celexa does nothing to prevent panic attacks anymore; they still come pretty frequently and I've developed agoraphobia on top of everything, so I think it's safe to say they're not helping at all.

The Atenolol (beta blockers) have been mildly helpful, but I still do notice occasional heart palpitations, and when my anxiety levels are high, I still get chest pains and rapid heartbeat.  The pills are doing something, and I don't mean to sound greedy, but they're not doing enough.

As mentioned, the Methimazole hasn't made a lick of difference yet.  I'm hopeful that that will change in time, but so far I'm just as symptomatic as ever.

The lorazepams...  OK, the lorazepams help.  The problem is, that is a tiny little super-powerful pill, and I'm afraid of them.  They make me dizzy, they make me fall asleep, and they're highly, highly addictive.  Because of all that, I avoid taking them unless it's really absolutely necessary.  It's hard to parent when you're sleeping, and it's not so productive to take a pill that makes your head swim when you've got a long list of client work to get done, so they're very much a "last resort" for me.  I think in the last four months, I've taken six, and it has to be under the perfect conditions...  when I have enough time before The Monkey gets home from school, when The Mister happens to be home from work (or able to come home long enough for me to take one, get past the dizzy, and fall asleep), and when I don't have an overwhelming amount of work to get done.  I'm paranoid that if I take them when I'm alone, I'll have a bad reaction and end up like Heath Ledger or Michael Jackson (both of whom were on lorazepam, according to the internet), and a sedative doesn't really help when you're afraid to take it.

So that's the prescription situation.  I have four pill bottles in my purse, I keep a "drug diary" to remind me what I took and at what time, and I feel like a pharmacy.  And so far?  It hasn't even helped.

2. The Diagnosis

After two months of waiting, I met my endocrinologist, Dr. Fine.  She was younger than I expected and looked a lot like Alanis Morissette when she played Nancy Botwin's doctor on Weeds... only, with more diplomas and working out of an office in a Toronto hospital.  

Alanis Morissette... not my doctor.

Dr. Fine asked a bunch of questions about my symptoms and showed me the thyroid levels sent over to her by my family doctor's office.  I would post them for you here, except I don't remember what they are.  I do remember that my TSH levels (Thyroid Stimulating Hormone, I think?) were 0.01, and apparently the norm is between .5 and 5.0, so that's pretty low.  I guess that when your thyroid is hyperactive, your TSH levels drop because your body doesn't need to tell your thyroid to work... it's already working overtime.

I hopped up on that weird doctor table-bed thing that's always covered in paper and always has a million drawers so Dr. Fine could check my reflexes and listen to my heart.  She told me that she would normally have her patients hold their hands out in front of them so that she could see how much they trembled, but that I didn't need to do that since I had a constant full-body tremor.

I was told that she was pretty sure I had Graves' Disease but that we'd need to schedule a Radioactive Iodine Uptake Test to be sure, and that she wanted me to go have another blood test so she could compare the levels.  I was given a req. form for the blood work, a prescription for my very rapid and pounding heartbeat,  and a bunch of printouts on Graves' Disease and hyperthyroidism.  She walked me to the reception desk to book my RAIU (the uptake test), scheduled for one week later - much quicker than I expected.  I went straight from her office to my family doctor, got the blood work done, and headed home to Google the crap out of the uptake test.

*****

A week later, I was back to the hospital for the first RAIU appointment.  (There were two appointments, 24 hours apart exactly.)  From everything I'd read, the RAIU was no big deal.  No side effects, no isolation, just a quick pill and I'd head home, which is how it went.  Only, the part about "no side effects" was not entirely accurate.  

About three hours after I swallowed the little pill, I felt sick, and I continued to feel that way all night.  I was nauseated enough that all I wanted to do was lay on the couch, and the thought of eating grossed me out.  I was feeling better the next morning, though, and we headed back to the hospital for the second part of the test.  The nurse sat me down in front of a weird machine with this probe-y part coming out of it, took a reading just above my knee, and then had me rest my chin on top of the probe-y part that was now aimed at my throat.  She took another reading, slid the machine away, and then injected me with more radioactive iodine.

I was led down the hall to another room where they had me lie on the world's tiniest bed - seriously, if I wasn't down to 100 lbs, I don't know how I would have fit on it, it was that small - and a different nurse used a machine that looked like a giant satellite to take x-ray style pictures of my throat.  

Look, I found a picture of the machine!  Only mine was newer and less decrepit-looking.

(If you're reading this and you're scheduled for an RAIU, don't be nervous.  It doesn't hurt... you don't feel a thing, aside from the injection which just felt a little cold.  The only thing they ask is that you lay still so the pictures aren't blurred.)

I'd been told the test would take approximately an hour, but I was in and out in just over 20 minutes.  My follow-up appointment to get the results had been scheduled for just over a week later, so let's fast-forward to that.

*****

It was a Friday morning, and I was back at Dr. Fine's office for my follow-up appointment.  The Mister and I went in, sat down, and were told right away that I definitely had Graves' Disease.  As I mentioned in my previous post, this was not a shock to me; I expected it.  The doctor explained that in a "normal" person's reading, the thyroid would absorb between 5 and 25% of the radioactive iodine, while someone with Graves' would absorb more; my thyroid had absorbed 58% - more than double the normal levels.

We discussed the various treatment options available to me - more on that in another post - but everyone in the room was not seeing eye-to-eye on the best course of action.  Because I wasn't sure what to do, I was given a prescription for an anti-thyroid pill and another follow-up was scheduled for one month later.  Dr. Fine gave me a print-out on Radioactive Iodine treatment (which I was not leaning toward doing), a requisition form for another blood test, and sent me on my way.

It was time for some decision-making.  And, of course, more Googling.

1. The Back Story

Finding out that I had Graves' Disease... well, it wasn't a shock for me.  I more or less already knew.  When I was diagnosed with hyperthyroidism back in August, that was a shock (although it probably shouldn't have been after dropping about 20 lbs.)  I hung up the phone and, like any good hypochondriac, turned to Google for the answers.  When Google told me that the majority of hyperthyroidism cases are caused by Graves' Disease, I turned to The Mister and said "Yeah, so, I have something called Graves' Disease" - and then, obviously, proceeded to Google that.

It was pretty obvious.  In a laundry list of symptoms, I had at least 75% of them.  Irritability?  Check.  Fatigue?  Check.  Difficulty sleeping?  Check.  Weight loss?  Check.  Anxiety?  Oh, so very check.  I resigned myself to the fact that I was now definitely a patient with Graves' Disease.  The only thing I was missing was the actual diagnosis.

The wait to get in to see the specialist was about two months.  Everyone lectured me about being crazy to wait that long (as if I had any choice in the matter) and told me how badly I needed to see someone sooner.  "You're too thin," they told me.  "You're so shaky.  Your anxiety is far too bad to wait for two whole months."  But wait I did.

And as I waited, things got worse.  

My hands shook like I was highly caffeinated 24 hours a day, which was a symptom that I was convinced was as bad as it could get... until the hand tremors morphed into full-body tremors.  My legs became really weak and wobbly.  Trying to walk more than half a block made me feel like I had just run a marathon, although frankly, it didn't matter that much since my anxiety had gotten so bad that I no longer left the house unless accompanied by The Mister.  I was exhausted - all day, every day - but couldn't get to sleep until 3 or 4 in the morning.  My heart constantly felt like it was not only racing, but also beating much, much harder than it was supposed to, and I became acutely aware of the palpitations in my chest every time I tried to lay down and rest.  I had lost so much weight that even size 0 didn't fit properly.  When you're that thin, aches and pains are felt in very surprising ways.  If I got heartburn, my back would ache.  If I had a back ache, I would feel it through to my ribs.  Headaches were constant; so were dizziness and shortness of breath.  In short, I felt worse than I could ever imagine feeling, and I wasn't even 30.

It was a very, very long two months.