Sunday, December 4, 2011

A Year Later

A year ago, life was really rough for me. If you've read through my posts, you probably already know that I got the bad news about hyperthyroidism on Christmas Eve. After doing a bit of research, I was fairly certain my symptoms pointed to Graves' Disease, which was confirmed shortly after. But by the time all of this happened, I had already been feeling rotten for months. By early December, 2010, I was feeling downright awful but had no idea why. Extreme dizziness, heart palpitations, and even chest pains so intense I swore my heart had stopped beating. ("Could I have a heart attack at 35?" I remember wondering.)

I want this all to be clear because now--one year later, I finally feel myself again. It's been quite a year. I'd love to sugarcoat it for you, but unfortunately, I can't. It's been one of the toughest years of my life. But now it feels worth it.

I only hope this feeling good lasts.

Why would I say that? Because the last year has been such a roller coaster. I'd have a few up days and figure the worst was over, just to be hit with more days of feeling awful again. Right when I thought I was back to normal, I had a night of hell where I was certain I was overdosing on Synthroid--only to be told by my doctor the next morning that my symptoms had nothing to do with my thyroid. Turns out I now had gallstones too. This might sound unrelated, but in fact, it's not. According to the research I conducted, if you are hypothyroid--as I had then been for months--you are more likely to have gallstones.

Ok, enough of me telling you my ups and downs. The upside is that I've had about two weeks of feeling good (the longest stretch I've had all year). The holidays are here again, and this year--though it will be low-fat and caffeine and dairy free (I chose to keep my gallbladder since I'd already lost one organ this year!), I will be able to enjoy the holidays. And that's much more than what I could say for last year.

Best wishes and happy holidays.

Thursday, August 18, 2011

The Rocker

When I was a little girl, I had a rocking chair. Okay, that’s not true—as my older sister would quickly remind me. She had a rocker. But the one you could find in that chair most of the time, rocking away, alive in her imagination, was me. It’s the place where I dreamed up my best ideas—stories, projects, artwork, schemes, experiments, and contraptions. The day my dad told me I was too big to sit in that rocker anymore was not my best day. (I had to be told a few more times after that…) And in the years that followed, I never felt quite the same.

In the fall of 2010, my husband and I decided to start a family. With this news, my sister and her husband—their children no longer small—passed on to me their glider/rocker (mommy chair). Equipped with a rocking footstool, I had sat in many of these in recent years, hoping that someday I might be lucky enough to have earned one of my own. Now my dream had come true.

Then I lost the pregnancy.

And another.

And another.

By that time, I was quite ill. In fact, instead of getting to start a family, my husband and I learned that I had Graves’ Disease. Months of treatment—including radiation—followed, creating some of the worst months of my life.

For the most part, I think I have done a good job of putting thoughts of a family aside. We can’t even begin to try again for at least six months (some recommend 12), and so I feel there’s little need to dwell on it now.

But here’s what I find interesting. Over the past few months, that mommy glider has come to mean something different in my life. It’s the place of comfort I go to create my stories and do my best writing. It’s where my characters are invented and their worlds unfold. It’s the place where I am happiest.

And it reminds me of a little girl I used to know, who used to sit and rock for hours, dreaming of what she’d create next.

Somehow, despite all I’ve lost, I feel more whole.

Tuesday, July 19, 2011

Two months after Synthroid

Today I had my first follow-up after starting on Synthroid (synthetic thyroid hormone) two months ago. The diagnosis: my levels were quite low (as I thought). Here's what happened:

When I went in for my last appointment, my thyroid wasn't completely ablated (killed off) yet, so my doctor was hesitant to start me off with a normal dose. But she also didn't want to leave me suffering with nothing. So she started me on a low dose. This meant that after it got into my system--which takes about two weeks, I had a week or so of feeling good. But the dose soon proved to be far too low, leaving me feeling worse and worse as the weeks passed by.

Now she's bumped me up quite a bit, so I should be feeling better in about two weeks. In another two months, I'll go back in for blood work and she'll re-evaluate the dosage. If it's still low, she'll bump it up again.

But from what she's said, I'm a strange case--both in that I had a reaction to PTU months ago and because my thyroid took longer than normal to die off. Also, I haven't gained as much weight as she expected. (I can't help it. I feel stuffed after eating so little...) So if you are wondering if my experience is representative...well, apparently not.

So I'm strange. What else is new?

Also interesting to note: from what the doc says, as long as I wait at least a half hour before eating anything or taking any other medications, I should start having good days in two weeks. In other words, waiting longer before eating and sitting up after taking the drug shouldn't matter. Guess we'll find out...

For now, I'm going to get another cup of coffee so I can get something accomplished today.

Wednesday, July 13, 2011

Four months after RAI treatment...

I'm not feeling the best today, so I can't promise this article will be the best I've written--or the cheeriest. I have promised that I would write an update though, so here goes.

The last month and half (since I wrote last) has been a bit of a rollercoaster--much like the months that preceeded it. I've had good days, and overall, I'd say there have been many more good days than bad. But have I felt like I did before Graves' Disease? Certainly not. Not yet.

The biggest difficulty of the last two months (since I saw the endocrinologist last) has been adjusting to Synthroid (synthetic thyroid horomone). There's a few things about Synthroid I wasn't told when I went on it, which I had to learn the hard way:
  1. It should be taken in the morning, an hour before you eat anything.
  2. It should be taken with a full glass of water.
  3. It should be taken alone. No other drugs can be taken at the same time.
  4. You should not lay back down after taking it.
Violating any of these rules can inhibit the drug's absorbtion. And this means a very bad day for me. I don't know if it works exactly the same for everyone; I just know this is how it's been for me.

I had to learn each of these things the hard way, which is part of what has caused the rollercoaster that has been the last couple of months. Each time I caught on to something, I'd feel a bit better. But overall, I have not had the energy I once had (my house shows it--inside and out). Now that I'm about to my new endocrinologist appt, I'm also having some of my old symptoms again.

Here are some of them:

  1. I get confused and disoriented. This appears to be worse when I'm in public, but sometimes even when it's just me and my husband. But again, this appears to depend on the day or the time of day. (I'm at my best early in the day and at my worse from about 2-6:00p.m....I don't know why). Running simple errands can be difficult. Today, I got lost once in a store I've been in a hundred times and arrived home to find that for the first time ever, I'd left my front door unlocked.
  2. Sometimes I still get so tired that even caffeine can't help. Thankfully, I teach and am off for the summer. Yesterday, for example, I had to stop work (I write books) and lay down. Too tired to even set an alarm, I woke up two hours later. I only woke up because my body hurt because I'd been out cold and apparently hadn't moved at all since I'd fallen asleep.
  3. Lately, I've been getting chest pains again. Hopefully, this is nothing. But it doesn't feel like nothing, and it makes me very thankful for my upcoming doctor's appt. next week.
Again, this isn't necessarily typical; this is just my experience. I've heard from others that they were feeling great from the point of getting RAI on. Just as the symptoms before RAI differ from person to person, I'm sure the after effects vary as well.

One more thing: about diet and weight gain. My appetite is still quite small, though it's grown a bit in the last few weeks. My weight has been a bit difficult to keep stable (it's not like being hyperactive) but overall I've only gained about five pounds. Mostly, I feel like I've gained more than I actually have. (I keep saying I'm huge and my husband says I'm crazy.)

I'm still working on what's probably the most important part of this whole journey: learning to relax. Unfortunately, I still have a long way to go. (Even on the tired, confused days, I keep trying to work--like now...)

On that note, I'm going to try to stop everything for a while and rest.

Tuesday, June 7, 2011

Resolution to Myself

Graves’ Disease–an autoimmune disorder affecting the thyroid (which affects metabolism, blood pressure, appetite, and energy levels) has pushed me to my limits in the past year. Each time I think I’m really making progress–that the worst might finally be over–it seems to come back to remind me that I’m really not in control of any of this.

Control. I used to have it, or at least I thought I did. I relished it. I was the queen of my own little world and I was productive. Oh was I productive. Hyperactive little me could accomplish so much in a day, a week, a month… Now I’m lucky if I can stay awake long enough to say that I remember that day, week, month…

The truth I know too clearly: I never really had control. The body doesn’t work like that. We can’t twist and turn it to do our will. It’s an intricate system–a resilient one, thank goodness, but if we push it too hard, for too long, it’s bound to get broken. That’s just what mine did.

Every experience in life is an opportunity for us to learn and grow. I have always known the value of simply being rather than doing, but rarely have I given myself time to be. If there’s one thing I can take away from my struggles with Graves’ Disease, it is this lesson.

So here’s my resolution to myself–the anti-American dream and a promise I should have made to myself a long time ago:
  1. When I am able, I will work.
  2. When I am tired, I will rest.
  3. I will base my self-worth on who on am, not on what I accomplish.
A simple list with three simple rules. Could you do it?

Thursday, May 26, 2011

There's an Upside to Everything

Over the past few months, I’ve posted quite a bit about my struggles with Graves’ Disease. What I haven’t had a chance to share yet is the story of life after the struggle. Why? Because I’ve been about doing things and enjoying life, feeling great! That’s right, after what seemed like an eternity of feeling miserable, I’ve finally come through feeling myself again.

This brings me to one of my biggest concerns before I went through treatment: I really thought I might not feel myself anymore. Or worse–maybe I wouldn’t be myself anymore. This probably sounds absurd, but for us hyperactive folks, it’s a big part of who we are. I have always been bouncy, energetic, and able to accomplish more in a day than many of my counterparts at work or at home. Treatment for Graves’ Disease set out to put an end to that–or so I thought.

But the truth was, I hadn’t been feeling myself for quite some time. It had been months and possibly years since I felt “normal”. I don’t know how the disease progresses over time, but as I think back, there were times were I can see some ebb and flow–where it’d get bad and then back off again and I’d feel almost right. By the time I received treatment in the form of radioactive iodine ablation (RAI), I’d say that I was about as far from feeling myself as I could get. (Though I’d rather not test that theory.)

So did RAI treatment change who I am? In terms of energy, no. The disease had slowed me done so much, that the treatment brought me back up to where I love to be. Yes, for a while I was a walking zombie. However, shortly after writing that article, I backed off the beta blockers (atenolol) the doctor had me on, and I did a complete reversal. It seemed that the drugs that had been making me normal for a while actually did the opposite once my thyroid had shrunk enough to produce less hormone to disrupt my system.

However, there is one major change. My other fear–which I imagine other hyperactives worry about–was that after enjoying years of eating as much of whatever I wanted and still maintaining a slim figure with or without exercise, I feared I’d quickly become obese. This fear, I assure you, is unfounded–at least in my experience. So what’s the major change? My appetite. It happened about two weeks after RAI treatment, and I swear, it was overnight. I went from consuming huge portions and constantly being hungry, to filling up on a couple of bites. (No joke.) Now at nine weeks after RAI, I eat about half the portion sizes I did before treatment. Could I gain weight? Yes. If I ate like I did before and continued not to exercise. Have I? No, because I’ve cut back and started exercising. (After not being able to do much for months, it feels fantastic to get my body moving again!)

While I surely would have preferred not to go through all of this (my wallet wishes I hadn’t too), it has had another very positive effect. Like many who’ve struggled through adversity, my experience with Graves’ Disease has changed my perspective on life and what’s important, and it’s given me even greater drive to achieve the goals I’ve set out for myself and do the things in life that make me happiest.

As they say, there’s an upside to everything.

Tuesday, April 19, 2011

I am a walking zombie: 4 1/2 Weeks After Radioactive Iodine Ablation

"I can't give you medicine yet. We won't know for another month still if the treatment worked. I'm not even going to run the bloodwork because I'm not going to give you anything for it."

"So what do I do? I can't stay awake. I'm having trouble doing my job."

"Drink caffeine. Get rest."

Drink caffeine. It was the first time I have ever heard a doctor say those words. Usually it was the first thing they tell you to stop. "Well you have ______. Cut out refined sugar and caffeinated beverages."

Today, I drank two cups of coffee so far. And now I'm sitting here, with my eyes half open, wondering how I will teach my last class of the day.

This has been my most difficult year of teaching yet. Not because of the workload or stress level. I've done it all before. Lots of times. But never like this. Never with chest pains, and heart palpitations, and total exhaustion, and shakiness, and eyes that don't want to stay open. Never when all I really wanted to do was climb back into bed. Never when I didn't care.

I don't care. I think that's what's most difficult. For the first time in my life, things have gotten hard enough on me that I can't put others needs before my own because my own needs are screaming at me. I can't outshout her. She's a scary zombie.

Nevermind. I'm just talking in my sleep.

Tuesday, April 12, 2011

Have a Cup of Coffee and Go to Bed

3 1/2 weeks after radioactive iodine treatment...

Yesterday I drank a cup of coffee and then laid down and slept for almost two hours. No, this is not normal behavior for me. In fact, a couple of years ago, I gave up coffee all together. I found it was making me too hyper (shaky) and I had trouble sleeping at night. Little did I know that my hyperactivity may have already been related to Graves' Disease.

Being off coffee's been good overall. The longer I've been off, the less I craved it. But now, when I find I crash out within a few hours after getting up (some days I have trouble even getting up), coffee has become my friend again.

Here's the problems with coffee: it doesn't always work.

This is a tired like nothing I've ever experienced before. It gives me a new appreciation for all my hypothyroid friends and family members. Hypothyroidism may be more easily treatable, but it's not necessarily an easier road to walk--particularly because it's difficult to keep your eyes open.

Thank goodness for the endocrinologist, who I get to visit again tomorrow. I hope she's got some synthetic thyroid hormone to prescribe me, or I may have to upgrade to espresso.

Saturday, April 9, 2011

Looking Forward to my Visit to the Endocrinologist

Three weeks after radioactive iodine ablation...

Before I was diagnosed with Graves' Disease, I couldn't have told you what an endocrinologist was. Likewise, I hadn't been to a doctor in years. (When my doctor mentioned "PCP", I thought she meant the drug...) Going to the doctor was something that I did only if I absolutely had to.

In the last five months, I've not only had more doctor's visits than I had entire life before that point combined, but I actually look forward to going to see the endocrinologist. This appears to be part of the nature of Graves' Disease: it makes you so not yourself and makes you feel so miserable, that you actually want to go to the doctor.

So my doctor is now my hero and I'm looking forward to seeing her again this week. This will have been my longest stint without seeing her since my first visit--3 1/2 weeks! (Of course, I have had to go in for blood tests still...) And just like each time before it, I've actually been counting down the days until my visit, not because I'm dreading it, but because I can't wait. My upcoming visit means that I might finally be given the medication that will help me find my energy again, so it may finally keep me from needing several naps a day.

It's strange: before Graves' I wasn't on any type of medication and really didn't believe in it. Now, I can't wait to get more. I suppose it's like all of life: it's easy to make judgements about until it affects you directly. Then suddenly you see everything in a new light.

Friday, April 1, 2011

Beyond Tired: Two Weeks After Radioiodine Ablation

The past two days have started out normally. I get up and go about my business as usual. Everything is going fine until suddenly, in early afternoon, it hits: extreme tiredness. I feel like I need to go take a nap, only I’m at work and so this isn’t a possibility. I struggle to hold my eyes open as I teach my last two classes of the day, hoping that my students won’t notice that, to me, they are beginning to appear dream-like as the lines between wakefulness and sleep start to blur.
The symptoms of hyperthyroidism and the radioiodine treatment have changed considerably in the last two weeks. My neck doesn’t hurt like it did a week ago. Earlier in the week there was still some dull pain, but it became mild enough to easily ignore. Occasionally, my chest will hurt, but the severe and persistent pains I had felt before treatment are now all but a memory—one I’m happy to forget. Gone with it is the dizziness I had once experienced on a constant basis, and then as an occasional “Woa! I think I need to sit down” feeling that followed it.
But the tiredness, it may be here to stay—at least for now. As the radioactive iodine continues to destroy thyroid cells, the levels of thyroid hormone in my body will continue to drop. By the time I hit bottom, hopefully, my four week check-up with the endocrinologist will have come as well. Then I’ll be prescribed medication for what will then most likely be a hypothyroid state, and my energy levels should increase again.
Until then, I may need to find a way to sneak in a mid-day nap.

Sunday, March 27, 2011

Now I can tell something's happening: One week after radioiodine therapy

Last Friday--exactly one week after my radioiodine treatment, my neck started to ache. First, it felt like a sore throat coming on. Later it felt like I'd slept wrong or somehow strained my neck (I couldn't turn it to the right at all). By Sunday morning, I still felt like I do when I have a cold coming on--a general scratchy throat feeling, but I also felt something else: a dull ache in the front of my neck.

I'd wondered if this would happen. Besides getting sick from the initial dose of iodine (which I didn't), I had heard that there might be some mild neck discomfort. For some reason, I thought this would happen right away. Instead, it's come a week later. It makes sense. The iodine is absorbed into the body and slowly makes its way to the thyroid. Meanwhile, any that doesn't make it is eliminated from the body within the first few days. So now there's a concentration of the stuff hanging out around my radioactive neck. And now, I can tell something's happening. The body hurts when something isn't right. And it hurts now.

Maybe I'm nuts, but I still feel a strange sense of remorse over killing a part of myself. I wish I could keep at least part of it, just because. Then I'd feel less guilty; then I'd feel more whole. But the body doesn't work that way. Apparently, if just a bit of the thyroid hangs around, because of the Graves's Disease, my immune system will still be telling the thyroid to work overtime. And soon, I'd be right back where I started. This is why doctors try to prescribe enough radioactive iodine to kill off the entire thyroid, and why if they don't, then a second dose of the treatment is needed.

So for now I will mourn the loss and promise my body I'll try harder to take care of it in the future. And I'll hope that I'll never have to put it through anything like this--or worse--again.

Wednesday, March 23, 2011

Where's My Web-Slinging Action? Adjusting After Radioactive Iodine Treatment

Where's my web-slinging action? I asked my husband on our way home from getting my radioactive iodine treatment last Friday.

"Maybe it comes with time?" he answered.

I admit, we both secretly hoped that I'd suddenly find myself with some new superpower--even if it was small or only temporary. Or at the very least, I expected that I'd feel something.

But the fact was, if it weren't for the fact that I remember taking the capsule that came in the scary lead package at the hospital and the fact that my doctor sent me home with explicit instructions to avoid public spaces and close contact with others, and follow specific rules of hygiene for the next 72 hours, I might  not have known that anything had happened at all.

That's right: for those who are wondering, like I did: will I feel any different? In my case, the answer was a resounding "no". I didn't get sick, I didn't get any neck or jaw pain, and I didn't feel all glowy. Nothing. It's been life as normal--except I had to be alone a lot for the first three days.

But my husband and I made the best of it: he made me special food for some meals and brought in fun take-out that we never have for others. We picniced in areas of the house we never dine--me in one of the rooms we'd set aside for my semi-isolation and he in the hall outside of it. We took walks each day...I just stood a little further away from he and the dog than I usually do. He camped out on the couch and I got to remember what it was like to sleep in a bed alone again (I didn't kick anyone!), and it actually felt a bit like years ago when we were dating (and it made us miss each other all that much more, which is always a good thing for any relationship).

So I didn't get superpowers. But when you compare it to the alternatives (getting sick from radiation or having to recover from surgery), I really think I got off okay.

Sunday, March 20, 2011

Partial Suicide: 48 Hours After Radioactive Iodine Treatment

“Have you ever wanted to kill yourself?” my husband asked as we discussed my hyperthyroid treatment options.
“Not really,” I answered, giving him my ‘What are you suggesting?’ look.
“Well, I just thought that if you had, then now you could fulfill part of that dream—you know, since part of you would die.”
Part of me would die…
I think that has been the toughest part about this whole thing. Not only was a part of me dying, but an innocent victim was being executed. It wasn’t my thyroid’s fault. It was my immune system’s. Or was it?
Graves’ Disease is an autoimmune disorder, commonly understood to be brought on by stress. Under prolonged stress, the immune system gets…let’s say confused, and it sends false messages to the thyroid, telling it to produce more thyroid hormone. This in turn speeds up the heart and increases metabolism, causing life to get pretty uncomfortable and confusing.
The three primary treatment options offered by western medicine get at the symptoms of the disease, rather than the cause. It may be my thyroid that’s causing my heart to beat erratically, but it’s my immune system that told it to do so.
But before we start blaming the immune system for wrecking havoc on our lives, let’s look again: why did it start telling the thyroid to produce more thyroid hormones in the first place? Stress.
Stress causes a whole host of problems in the body, knocking systems out of whack. The immune system is just one of many.
At the point at which we realize that stress is the cause of our illness, many of us want to point our finger at the rest of the world for making it so hard on us. But the fact remains that while we can’t control what our external environment is like—bosses, bills, screaming kids, annoying co-workers, we can control our internal environment.
The sooner we learn to calm the oceans inside of us, the happier and healthier we will be.

Flush Twice: Life After Radioactive Iodine Treatment

I didn't know what to expect when I received the treatment last Friday. It's simple enough: 1. Get the routine pregnancy test (doctors can't administer radioactive iodine without verification that you aren't pregnant) 2. Swallow a capsule.

The scary part is that the capsule is brought to you in a lead container, you are told not to touch the capsule("Just toss it into your throat and swallow down with some water"), and before you leave, they give you a list of precautionary measures to be followed.

Precautions include: avoid contact with children and pregnant woman, stay arms length away from everyone, don't sleep next to anyone for at least 72 hours, don't stay in close proximity to anyone for more than two hours, use your own bathroom if possible, and --you guessed it--flush twice.

It's a bit scary. But it's also a precaution. The upside: a little time to yourself.

Here's the truth: it's not as bad as it seems. Short contact is acceptable--including hugs. And most people can return to work within 48 hours. Also, because the dose is not high, most people don't get sick. (I haven't.)

The thing I miss most is being close to the ones I love. But even this will be all that much better when we can be close again.

Saturday, March 19, 2011

Thyroid? What's a Thyroid?

Just as I was readying myself to head off to grandma's house for holiday dinner on Christmas Eve 2010, I received a call from my doctor. Actually, a message on their automated voice mail service: my blood work came back.

I expected nothing. I really did. I'd been feeling awful--dizziness, weakness, heart palpitations--but still I had been searching the net for months already and hadn't been able to come up with anything that sounded like it could be the cause of my troubles. I figured this was going to be another one of those cases where the doctors were baffled and I learned to live with feeling rotten.

Your T3 and T4 levels are elevated, in accordance with hyperthyroidism...

What? I played the message again. The same words haunted me again, and these thoughts came whirling from my brain: "Thyroid? What's the thyroid do? What's a T3? What's a T4? There aren't any thyroid problems in my family. It must be a mistake..."

Whisked away to Christmas dinner before I could even do enough research to remember what the thyroid does, the shock continued throughout the day.

When I got home, I was able to do a bit more exploring. The Mayo Clinic's website was one of them that was most helpful to me that evening. If you have recently been diagnosed with a thyroid disorder, I recommend their website: mayoclinic.com.

Friday, March 18, 2011

Radioactive Iodine Ablation

Today I received radioactive iodine treatment for my Graves' Disease. The decision to have this treatment was a difficult one for me--despite the fact that I've been feeling awful for months (dizziness, muscle weakness, overall tiredness, chest pains, heart palpitations) simply because the idea of killing off a part of me didn't seem right, and introducing a radioactive substance to my body seemed no less ludicrous.

After a great deal of thought and a failed attempt at anti-thyroid drugs (I had the rare side effect of liver damage) radioactive iodine became the best treatment option.

If you or someone you love is struggling with Graves' Disease and is also in the midst of making this difficult decision, here are some websites I found useful that you too may wish to explore:

http://www.mayoclinic.org/graves-disease/treatment.html
http://www.radiologyinfo.org
http://www.endocrinologist.com/

 Feel free to share your story or post questions. I will do my best to answer them here.