Category Archives: Graves Disease

Growing Pains

Plastic drinking straws

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Last week I reached a new and sobering milestone: I’m too fat for my fat pants.

I know, I know. I’m not fat. But I weigh more than I did a month ago and right now trying to put on any but yoga or fleece pants is like trying to shove a fistful of sausage into a drinking straw. It just doesn’t work. This is very depressing, not to mention potentially costly.

On Easter Sunday I attempted to squeeze myself into pair after pair of Capri pants. I watched in shock and shame as a pile of rejects grew on the bed before I finally settled on the new FP’s I’d bought a couple of weeks before. They were tight, but what choice did I have?

The amount of quad-burn I experienced after Sunday’s 5.5-mile hike didn’t do a whole lot to boost my self-confidence, either. I generally experience some stiffness and a few sore muscles after a hike, but Monday morning when I put my feet on the floor and stood up, wildfire raced through my legs with such intensity that I had to lay back down. I honestly didn’t think I was going to make it into work that day. (I did.)

It’s time to get serious, especially if I want to salvage my spring wardrobe. I like to think of myself as a healthy person; a statement that seems almost laughable when one considers I’ve been up and down on the Graves disease yo-yo for the last five years, yet is not entirely false. It’s true that I’m not the athlete I was five years ago, but I’m still fairly active. I walk every day, I go through weeks-long and sometimes months-long spurts of lifting weights and I am always stretching. I adore stretching and yoga.

Furthermore, healthy eating is almost a mania for me. (I guess that’s a bad hyperbole to use in light of the newly named eating disorder, orthorexia.)

So, then, what’s the problem? Well, it’s obviously not me or anything I’ve done, so I’ve carefully analyzed the situation and come up with my top three nemeses:

  1. Time.

Trying to cram more activity into my day is a lot like trying to stuff a fistful of sausage into a drinking straw. Oh, wait. We’ve already done that. Okay, how about this? Trying to carve out time for exercise in my day is a lot like trying to make a notch in granite with a cotton ball. It’s almost impossible. What do I cut out?

Work? Uh, sure. I’d love to, but both T and I are on my insurance policy. And with our health issues, forget it. Less coverage is not an option.

Meal preparation? Absolutely! We’ll eat McDonald’s every night. Except that might counter-balance the benefits of working out. I’m not sure or anything – just speculating here.

Walking the dog? Um. Isn’t that exercise?

Oh, I know! Doctor’s appointments! I’d love to. Believe me, I’d love to. But impractical.

That pretty much leaves blogging. kthxbai!

Just kidding. Not really willing to give that one up, either.

I’m running out of options here, so let’s move on to the next nemesis.

  1. My husband.

My husband has the world’s worst sweet tooth. He doesn’t and has never: smoked, drank alcohol, done drugs or drank coffee. However, take all the cravings a person would have if they did do any or all of those things and super-concentrate them into one massive yearning for sweets. That’s my husband.

Two of the Top Five Most-Used Phrases in our house include:

Do we have any dessert?


Can we make lava cakes tonight?

lava cakes

Lava Cakes

And I never say either of those.

The other three, in case you were wondering, are:


But I want lava cakes.


Okay. Then make them yourself.

Despite being the food-Nazi in our house, when T is around I wind up eating dessert about five times more frequently than I normally would otherwise. Clearly this is all his fault.

  1. Graves disease.

Or more specifically, the hypothyroid condition which resulted from the thyroid-blocking medication used to treat my Graves disease and which my endocrinologist insists is fine for me. This is the same condition that produces the anxiety that is the theoretical reason I end up with headaches at least two nights a week; that has me so exhausted I barely have energy to make dinner in the evenings, never mind work out; that inspires me to eat chia seeds like they are going out of style rather than coming in, just so I can take a poop; and that charitably helped me gain the weight I’m trying to lose in the first darn place!

All that being said, I realize that the ball is in my court. Even if none of this were my fault, which of course it isn’t, I still need to shorten up the reins a bit before I’m wearing skirts or sweatpants to work. And let’s face it: I would never wear a skirt to work. Sweatpants, maybe. But a skirt? Oh, heck no.

Even if I can’t revamp my schedule to include large blocks of workout time the way I would like, there are still a lot of little changes I can make. So, I sat down with a bowl of chocolate coconut ice cream and came up with the following list:

  1. Walk the dog (at least twice a day). Yes, I already walk the dog, but I do it less since T’s been home. It’s so easy when I feel tired to let him do it.
  2. Eat dessert (no more than twice a week). I tried to make this rule a while back and T and I got it down to three times a week, but never twice. I need to show a little will power here and let him eat dessert a few nights a week without me. Darn. That means I need something other than a food reward for a crappy day. Any suggestions?
  3. Define dessert. Does fruit count as dessert? I’m thinking if I eat smaller portions at dinner, a fruit-based dessert (such as a few dates or chia pudding with fruit) might be okay. Hm. I’ll have to think about that. I’m leaning towards no and cup of tea instead (which incidentally does wonders to curb the craving for sweets).
  4. Eat out (no more than once a week). My husband likes to go out to eat. I do, too, but I get tired of it quickly. Most of the time I’d much prefer to eat at home where I can prepare a meal that I know is healthy. I also like knowing what’s in my food. Call me crazy. However, T doesn’t cook. He also doesn’t eat cold food (except for the occasional Subway sandwich). So, if I don’t feel like cooking or am too tired, his solution is to automatically parrot, “Let’s go out to eat.” No, Polly. I don’t want to!
  5. Stop eating peanut butter.
  1. Eat more vegetables. Brilliant, right? But it’s not what you think. See, I estimate that I already get between six and eight servings of fruits and vegetables per day. The problem is that I’m not too creative with my snacks. When I’m at work, a snack is fruit and some form of nuts (unsalted cashews or peanut butter). If I replaced this with vegetables and bean or avocado dip, I could cut out a chunk of sugar (fructose) and a bunch of calories.
  2. Stop eating like an athlete. When I was running five days a week I ate whatever I wanted – not junk, but portion-wise. I don’t run anymore, but I’ve not really adjusted my food consumption so well.
  3. Take the stairs (at least nine times a week). I work on the fifth floor and usually take the stairs, but a few more times a week wouldn’t hurt. Nine seems like a good number considering I’m only in the office three days a week. It would be a good break from sitting at my desk.
  4. Stretch at work (once an hour). This includes anytime I’m sitting in front of the computer. It’s amazing how fast an hour can go by, but getting up to do a few stretches makes a huge difference in how I feel by the end of the day.
  5. Use resistance bands (twice a day). My chiropractor recommended that I do several sets of rows daily with the bands. I’m not great at remembering this at home, so I brought a band to work and have it tied around a post in my cubicle. Yeah, I get some funny looks, but oh well. It only takes about a minute to do a set or two.
  6. Use the far-away kitchen. We have two kitchens on my floor at work. I could use the one on the opposite side of the building. Hey, every little bit helps, right?
  7. Strength train (at least three times per week). I’m going to give myself a break here and define this real loosely. Considering my schedule and energy levels, even if I do Pilates, yoga or just ten minutes with weights or resistance bands, I’m going to count it. Normally I wouldn’t, but I think in this case, I need to start here. Otherwise I’ll get discouraged and say, well…something not very nice.
  8. Hike (at least twice a month). Nothing burns more calories than backpacking. Nothing. Besides, I love it.

I’m sure I’ll be adding, revising and reassessing as I go, but this is my starting point.

How about you? What little changes do you make to improve your health or lose weight? I’m all ears! (Actually, right now I’m all butt, thighs and stomach but please share anyway.)

I’m So Low I Have to Look Up to See Whale Poop

Yay! I’ve become the boring person who does nothing but talk about their medical problems. If you knew my family, you’d know it was just a matter of time. This is how conversations with my relatives go:

Me: So, what’s new?

My Mom: Well, Dad had a doctor’s appointment today. Oh, and did I tell you Uncle X came home from the hospital today? His legs are still swollen, but he’s feeling better. Auntie Y’s funeral is on Wednesday and afterwards I’m going to see Cousin Z in the nursing home.

Me: Really? Okay, we’ll I’m going to go throw myself out the sixth floor window. Have a great afternoon.

My grandfather used to give me advice on aging. “Sara Lee,” he’d say, because he had a nickname for everyone. “Sara Lee, don’t get old.”

“Sure beats the alternative,” I’d tell him.

Now I’m not so sure. I’ve seen old. It ain’t pretty.

Anyway, enough about everyone else. Back to me.

Monday I took my two sets of lab orders and I hied me off to a different lab. I walked in the main entrance of the hospital and up to reception. I had to wait a few minutes, but once the receptionist got to me, she was quite pleasant. She took my name, entered it into the computer and asked another lady to escort me to the waiting room.

The attendant was a beautiful little Asian woman who asked me if my hair was natural. When I told her, yes, it was, she sighed with envy and said, “I love it!”

I like this place already.

She courteously pointed me to a chair and told me someone would be right with me. I didn’t have time to do much more than take off my coat and pick up a BHG magazine when a door opened and my name was called.

A third woman ushered me into an office and took my paperwork. Since I had never been there before, it took a few minutes to enter my information into the system, but I suspect that was a one-time thing. She photocopied my ID and insurance card.

I braced myself, waiting to be told I’d need to walk down to East Japeepee to get a blue card or an orange card or a notarized certificate of authenticity, but she simply printed out two documents, asked me to sign the privacy thingamabob and handed me my lab orders back. Then she gave me directions to the lab.

The directions weren’t that great, but there were signs everywhere so I figured it out pretty quickly. I can read like that.

I walked down to the lab and checked in with the lab receptionist. Okay. Admittedly, that’s a lot of check-ins, but so far everyone had been really nice, so I didn’t mind.

Did I mention I didn’t need a blue card?

At the laboratory, the receptionist informed me that if I had both sets of labs sent to both doctors, I would only be charged for one draw instead of two. Sign me up, yo. There’s no reason each doctor couldn’t each see the others’ results, so I said, Yes, please.

I thought it was nice that she showed me that little loophole. She took my paperwork and pointed me to another waiting room. This is the only sub par part of the experience. Not the waiting room – that was fine – but the fact that I was there about ten minutes. I was the only one in there.

It seemed like a long time, but if that was the worst thing that happened to me, it was going to be a pretty good day.

Moreover, the tech who waited on me was both friendly and…wait for it…competent! Yes, that’s right. She managed not to poke the needle through my vein despite the fact that she had to change out six differnt tubes. Count ’em, six.

Rock on.

I am, however, reserving my final judgment until the process is complete. I still need to see how quickly the results are processed and how the billing cycle plays out. I’ve had problems with both before and am in no hurry to repeat the experience.

But, it’s looking good. It’s looking real good.

I did get one set of results back today: the thyroid. And because I know you’re dying to know, here they are:

T4: 0.79 (normal range: 0.90 – 1.70)

TSH: 1.39 (normal range: 0.27 – 4.20)

The good news is that the TSH (the thermostat) is in the normal range. I mean, I guess that’s good news. Again, I’m not sure why it needs to be and, again, I forgot to ask. Because I am a jackwagon.

The other good news is that my T4 (the furnace) is lower than normal. I say good because it was that, combined with the now normal TSH, that prompted the doctor to adjust my meds to every other day.

Yahootie! I’m now taking half of what I was before. And that can only be a good thing, in my book.

Still, it irritates me that I had to get lower than whale poop to get a change made. Today when the nurse was explaining the results she told me that I “may be feeling a little tired”. Clearly, she has no memory of our last conversation. The one where I told her I was exhausted and depressed. The one that happened four weeks ago.

Today, though, I didn’t even care. I was just so happy for the news.

I have not heard the results from my OB/GYN orders yet, but I did take some time yesterday to look up what exactly the tests were. My doc did explain them to me, but she has a soft voice, talks very quickly and has a little bit of a lisp. I can totally understand what she’s saying, but there is a two-second delay there. Make that a three-second delay. I’m adding a second due to the effect the sheer terror of being in any doctor’s office has on my brain.

All I remember hearing is, “Blah blah blah blah, Day 3, blah blah blah.”

Right. Got it.

So I looked it up. And I was horrified. You guys, I’m basically waiting for the phone to ring to find out whether or not I have any eggs left.

Hoe. Lee. Whale poop.

Oh good. Because between my job, my father’s Parkinson’s disease and my husband applying for grad school, I didn’t have enough stress in my life. This makes everything so much better.

I need a drink.

Oh, wait. I stopped doing that so that I could get pregnant.

In that case, I need some ice cream. Stat!

How Low Can I Go?

Now…where were we with this Graves disease thing? Ah, yes. A few weeks ago I reported out on how I did with the list from my naturopathic doctor. In that post I had seen my conventional doctor and he’d started me on propylthiouracl to inhibit my thyroid production and ordered blood tests for two weeks later.

I also said I’d share my lab results “tomorrow”.

And if by “tomorrow” I meant “almost three weeks later”, then I wasn’t lying.


Lab #1

Two weeks after I started the meds, I went to the lab to get my blood drawn. Because we all know how I love to go to the lab to get my blood drawn.

The results were ready the next day:

T4: 1.21 (normal range: 0.90 – 1.70)

TSH: so low it was immeasurable (normal range: 0.27 – 4.20)

Not too bad. Actually, my T4 was slightly lower than I would like to see it. I feel best when I’m in the mid to high range, which would be 1.30 – 1.70. I could live with 1.21, but my fear was that it would continue to drop.

I have reason to fear this as, historically, this is the rollercoaster I’ve been on with these meds.

Lab #2

Four weeks after the first lab, I went for another blood test. For a couple weeks prior I had been noticing my “I’m low” signs: exhaustion, depression and listlessness.

So I wasn’t surprised when the results came back looking like this:

T4: 0.92 (normal range: 0.90 – 1.70)

TSH: 0.03 (normal range: 0.27 – 4.20)

In fact, I was a little relieved. I always think I’m crazy (or weak) first and sick second. When I get hard and fast numbers to back me up, then I can be sick with a clear conscience. My T4 was almost as low as it could be while still considered “normal”. My TSH was climbing – or crawling, rather, like a half-dead worm left out in the sun – into the measurable zone.

Yay! Oh, wait. Is that good? I have no idea. I had the following conversation with the nurse when she called to give me the results:

Nurse: And your TSH is 0.03, so that’s coming back up. Everything looks good, so no changes to the medication and we’ll do this again in four weeks.

(My stomach droops with disappointment here. Seems my plea to stay in the mid-range has fallen on deaf ears – again.)

Me: So my TSH is coming back up. Is that why he [the doctor] wants to keep me on the low side of normal?

Nurse: Yes. Why, are you experiencing symptoms?

Me: Yes. When my levels are low I get tired and depressed and it starts to cause some problems for me.

Nurse: Okay, well I’ll tell him what you’re feeling and if he wants to make any changes, I’ll give you a call back.

Me: Okay, great. Thanks.

(I hang up the phone and fight back the tears because I know she isn’t going to call back.)

And she didn’t.

I was left to figure out a few things on my own. For instance, why do we want the TSH to come up? Remember, the TSH is the pituitary hormone that tells the thyroid to create more thyroid hormone. A lot of folks use the “heater analogy”. The TSH is the thermostat and the thyroid is the furnace. When the furnace (thyroid) starts working overtime and the room gets too hot, the thermostat (TSH) says, Whoa! Throttle back, there, Skippy! Or words to that effect. And the furnace stops cranking so hard. My house is so hot that my thermostat was basically turned to Off, but the furnace was still cranking.

So, why do we want to turn the thermostat back on again? Won’t that just make things hotter in my house? (Uh, perhaps I should re-phrase that. Whatever, you know what I mean.)

I’m confused.

My husband pointed out that maybe the doctor wants the thyroid to make enough hormone to be in the normal range while it is on the blocker. Oo! Valid point.

But my husband’s not a doctor. He doesn’t even play one on TV. I’d really like to hear this kind of thing from my doctor. Unfortunately I’m a sucky self-advocate. I can never think of these questions while I’m on the phone (I hate the phone with a fiery, furnace-y passion) and I’m too timid to call the nurse back later because I feel like I’m bothering her.

I know. It’s stupid. I’m the customer and I’m paying them money. But I’m better at passive-aggressive ignoring of orders. I’ve been known to stop taking the medication on my own because I was so miserable. I’m not above doing it again, but considering the TTC situation, I’m trying really hard to figure this all out and get to a place where I’m on the lowest possible dose to maintain the most ideal thyroid level.

It’s not been easy.

I’ve thought about finding a reproductive endocrinologist, but quite frankly every time I start to research it online I get confused, overwhelmed and depressed. How do you find a good doctor when no one can seem to give you a referral? By the number of stars they have next to their name on an internet search? Oh boy! Six people gave Dr. So-and-So five stars! That is the perfect reason to make an appointment. Except that Dr. So-and-So probably had six friends go online and rate him. Yeah, that’s how those things work. So, not so much.

What now? Well, I’ve since received my “orders” in the mail for the next blood draw. (Because we all know how I love to go to the lab to get my blood drawn.) I almost cried with relief when I opened them because I’m praying that my T4 furnace will now be “below normal” and the doctor will finally reduce the meds.

I’m tired of being tired and lead-legged. I hate feeling like life is just a senseless merry-go-round of work-sleep-work. And I’ve gained 5 pounds.

Yes, 5 pounds. I know that’s not a huge amount, but it’s more than enough for me. Before you give me any grief, let me say that 5 pounds puts me in a place where clothes start to feel tight and uncomfortable. I don’t do uncomfortable. And I don’t gain weight. I walk an average of three miles a day. I do strength training. People at work hide their lunches in shame when they see me coming to the kitchen. My husband and I eat dessert only two (okay, three) nights a week.

There is no reason on this Earth – other than my thyroid levels – why I should be gaining weight. And that just sucks. Because losing weight is not easy. Because I don’t feel it necessary to spend money on a whole new wardrobe because my doctor thinks my TSH should be higher.

So, yeah. I’m complaining about five pounds.

Anyway, I’ll go to the lab this week, which will be about four weeks since my last test.

In the meantime, I also saw my OB/GYN who gave me a preliminary good bill of health on my plumbing. The next step is more blood tests (because we all know how I love to go to the lab to get my blood drawn), to be done on Day 3 of my cycle – or Day 4 if Day 3 falls on a Sunday.

Since my cycle has ever been accommodating – did I mention I got my period the day my husband came home on leave from his Iraq deployment? – it made a grand appearance on Friday, which means two things:

1. I’m not pregnant. (Duh.)


2. Day 3 falls on a Sunday.

The good news is that I can do both blood draws on Monday, so I only have to go to the lab once. Hey – I’ll take it.

Oh, and I found another lab to go to that, location-wise, is just as convenient as the old one. Aren’t you proud of me? So that should be an interesting adventure. I’ll be sure to give it my critique once I’ve been.

I just hope I don’t need a blue card, because my old one has expired.

Stupid blue cards.

Gone Fishing

I wish.

The last time I was fishing was at the Birthday Party x3. Seems ages ago now that I was sitting in that gorgeous sunshine crisping my back and casting out as the boat drifted lazily around the anchor.

Despite the advent of spring four days ago and the predictions of Punxsutawney Phil, that dirty little liar, this morning it was snowing. The sun did come out for a couple of hours in the afternoon, but I just walked Owen an hour ago and it was snowing again.

So, yeah. I’m not Gone Fishing.

What I am, mostly, is tired. Lately I am exhausted by the end of the day and, to exacerbate the problem, for the past three days I have endured headaches that are trying to remove themselves from my brain by exploding out of my eyeballs.

No, I’m not pregnant. I’m on a thyroid blocker and my T4 level has dropped into the low end of “normal”. I’m convinced this is why my energy is so low. What else? I haven’t changed anything. And I’m 35, not 85.

It’s frustrating because I have so many ideas for this blog, but I just don’t have the brain power or focus in the evenings to work on it.

Today, however, was a pretty good day. I didn’t end with a headache, so I’m hopeful that tomorrow I’ll be back on track.

In the meantime, I’ll leave you with a completely unrelated, but nevertheless entertaining Owen photo.

Owen Einstein 

You see, Owen has this pet pig. Well, he had a pet pig, but he tore all the stuffing out of it and strew it around the room. So, I took the stuffing and put it on his head.

Then I laughed uncontrollably while he looked to his daddy for help.

Disgusted Owen

Which he did not receive, I might add.

The Joy of the Blood Test

My diagnosis of Graves disease came with a lifetime invitation to the laboratory to regularly test my thyroid levels. Regardless of what path I choose, I don’t see this happening any less frequently than once every six months. Right now, twice a year seems pretty far off.

I’ve had so much blood drawn over the last five years that I’m sure I’ve had a complete oil change by now. At best, I’ve gone to the lab every three months, but sometimes as often as every few weeks.

Blood Work Kit

not my photo

The insanity, by definition, is that I keep going to the same lab, hoping that the way I’m treated will change. Actually, it’s not really insanity so much as laziness. The lab is on my way to work.

When I show up, I wait by the sign that says “Please Wait Here” and is plastered with requests that I wear a face mask if I’m sick. Um, if I’m healthy, would I be here? But what I have isn’t contagious, nor is diabetes, high cholesterol or probably most of the other things people go there to get tested for, so the face mask thing is ridiculous. It serves no purpose other than to make me – the germaphobe to end all germaphobes – more nervous.

I have my lab paperwork and my blue card ready. The blue card is another thing I don’t understand. This particular facility and its affiliates require you to have a blue card to get service. Even if you have a gushing limb hanging by a single tendon, you need a blue card before they’ll get out the sewing kit.

Okay, not really, but I’m telling you, they’re blue card Nazis. The blue card has your name on it and your insurance information and to get it, you have to go deep into the bowels of the lab, stand in line again, hand over your insurance card, then wait 20 more minutes while it is printed up.

It also expires in one year, at which point you need it have it renewed. Fortunately you can do that online by filling out a simple 45-page questionnaire in less than 15 minutes, at which point it logs you off.

It’s awesome.

After waiting at the “Please Wait Here” sign for a few minutes while there are no other patients in sight of the reception desk, one of the women behind the counter glares at me and growls, “Can I help you?”

Either this is the worst place in the world to work, or they require their employees to fast for 12 hours before coming to work. Which would make it the worst place in the world to work.

I smile pleasantly as I approach the bench and say, “Hi there!” I hand over my paperwork and my blue card (because I’m efficient that way) to a silent individual who doesn’t once look up as she asked me the following:

“Spell your first and last name.” Why? Isn’t it right there on the paper?

“Date of birth?” Sure, no problem.

“Do you have your insurance card with you?” What?

Because I already have a blue card, I didn’t bother to bring in my insurance card.

“It’s in the car,” I tell her. She sighs heavily.

“Isn’t that what the blue card is for?” I ask timidly.

“We need both.”

This is retarded. And that’s all I have to say about that.

She lets me go this time with a warning. Yay! Still without looking at me, she tells me I’m all set to have a seat.

Since my blood work doesn’t require fasting, I get to thumb through old magazines about babies or race cars, neither of which I’m particularly interested in at the moment, while all the fasters go ahead of me. Once I finally do get called, a tech ushers me into a room.

Sometimes they’ll ask me how I am. Sometimes, not. But once I’m in the chair, this is always the conversation:

“Spell your first and last name.” Eye roll. I swear by all that is good and holy the next time I’m going to spell my name wrong, just to see what happens.

“Date of birth.” Didn’t we just do this?

As the tech preps the instruments, I roll up my right sleeve. I’ve only encountered maybe two people who have been able to draw blood out of my left arm. Without looking at me, the tech says, “Do you have an arm preference?”

Yes, I do. Please take the blood through the sleeve of my left arm. That’s how I like it done.

I really don’t have the patience for this kind of thing. But I answer civilly, if not pleasantly.

“Small pinch,” the tech says as she pushes the needle through my vein and out the other side. I can’t tell you how many times this has happened. It is not a pleasant feeling.

I used to cringe when I saw the interns coming because they looked so nervous. Now I pray for one. The interns are awesome. They are still new enough to be pleasant and they are so anxious to do a good job that they actually do. In my experience, it’s the seasoned techs that suck the most because they’ve stopped caring.

They draw a couple of vials (changing the vial sucks, especially when the needle is all the way through your vein), pull out the needle and press on the gauze pad. Invariably, they rip off a seven-foot piece of tape and practically wrap it around my arm five times.

Okay, that’s an exaggeration, but still. A two-inch piece of tape would suffice. Remember, I’m Italian. There’s no need to put adhesive on the front of my arms. If I wanted them waxed, I’d wax them, thanks.

The tech then recites the speech about applying pressure for 3-5 minutes to prevent bruising. I feel like saying, If you didn’t stick the needle clear through my vein, that would go a long way towards preventing bruising. Instead I smile and say, “Thank you.” Then I grab my jacket and high-tail it out of there.

I’m determined to find a new lab to try next time I get my “orders” in the mail. I’ll report out once I do – it should be in about three weeks.

How about you? Have you ever had to have blood drawn? Was your experience good or bad? Any suggestions or ideas on how to make the process smoother?

Thank You, Dr. Graves

Could they have come up with a worse name for a disease? I mean, I’m just wondering.

Graves disease.

It’s named after Dr. Robert J. Graves, but couldn’t they have called it RJ’s disease, or something? Why don’t they just call it Cadaver-itis?

Wait, that would be a swelling of the corpse and that’s just gross.

But really? Graves disease?

And would you want to see a physician named Dr. Graves? Talk about poor marketing. Business must have been booming for that guy. I bet he made a killing.

view details

Okay, anyway. Back to my list. My naturopathic doctor had given me three things to do: see another endocrinologist, get an eye exam and have a bone density test. Here’s how I did:

1. See an endocrinologist.

My nat doc indicated that there was some degree of urgency for this item, seeing as my levels were so high. In fact, he didn’t even want to prescribe a thyroid blocker for me because he thought that with those kinds of numbers I’d be able to get in to see a new doctor faster. Perks. Yay.

I asked him if he could recommend someone to me. He had only one suggestion, but that particular doctor was over an hour away from my house. This doctor also did not get great patient reviews online. I called my OB-GYN, who had given me my original referral. She didn’t have anyone new to recommend. There aren’t a lot of endocrinologists in Maine and other than asking my current doctors – both of whom came up short – I had no way of knowing whether one was better than another.

So, I ended up back at the endocrinologist who had diagnosed me five years ago. I know. Why, right? When I already knew I didn’t like how he handles my case. The fact of the matter is that I didn’t know where else to go.

This time, though, I asked my husband to come with me, which he was glad to do. I guess I thought that if he were there he could help me make the doctor understand my concerns. Right.

We got an appointment right away and within a week I was back in the waiting room filling out all the useless forms that they make you update and then never look at: family history, current symptoms, past symptoms, blah, blah, blah, blah, blah. Funny, since once you get in the exam room, the doctor asks you the same exact questions.

I really despise it when people waste my time.

The nurse brought us in and took my pulse and blood pressure. Many people can assess their general thyroid condition by monitoring their pulse. I am not one of them. My heart rate doesn’t go up when I’m hyperthyroid, so this does me no good whatsoever as an indicator. Probably better for my heart, though. My pulse and pressure were excellent, as always. I’d be in great shape if I weren’t so messed up.

Then the doctor came in and we started talking. I expressed my concerns about being 35 years old with a husband just back from a year-long deployment. I explained that radioactive iodine was out for me, not least because I didn’t want to wait another year before trying to conceive. He smiled and said, “Six months.” Whatever. I’d wait a year, but either way I’m not doing it, so moot point.

He did not recommend surgery, as both the wait time and the recovery time were longer, so it could take up to a year anyway.

Our last option was putting me on another blocker, but I was afraid of potential effects from being on medication while TTC or being pregnant. The doctor told me that he could put me on a drug called propylthiouracil (PTU) which was safer for pregnancies as it didn’t penetrate the uterine wall as much as methimazole does.

I had a surreal moment, wondering whether we were actually talking about my uterine wall and whether or not certain drugs could be harmful to a potential fetus. I never wanted to do things this way.

But my doctor didn’t bat an eye. He assured me that pregnancy and breast-feeding were not issues with this drug. Okay. Well, not my first choice, but really, what choice do I have?

Then I asked about the dosage. Historically when I’ve been on blockers they’ve dropped me into the low end of normal, or even into the realm of hypothyroid and this is when I really feel like crap. I’m talking about the kind of thing that affects my quality of life: persistent, low-grade depression that makes dragging my ass off the couch a chore and produces thoughts that are so negative – even for me – that it begins to wreak havoc on my personal relationships. Then there are the chronic fatigue, the muscle pain and the constipation.

I’d rather be hyperthyroid any day of the week. At least paranoia is functional.

I specifically stated several times that I wanted to stay in the mid to high range of the scale. I asked whether the dosage could be lowered or the medication taken every other day or even once a week, if necessary. The doc indicated that we’d work it out, saying that he’d monitor my levels frequently – every two to four weeks – and so I asked him to write the script.

I had it filled and began taking it on January 24th. He ordered lab work for two weeks from that date.

I’ll tell you about those results tomorrow. For now, let’s get on with the list.

2. Eye appointment.

Done. Everything is fine with my eyes other than that I stare at a computer all day long and I’m 35 years old. I don’t have Graves eyes, which is about the best news I’d had so far.

3. Bone density test.

I haven’t had this done yet. For no other reason than I just don’t want to.

About a month ago, T and I were out shovelling the driveway when I slipped on the ice and fell square on my knee cap. It hurt. But I laughed, then I got up and I walked around.

“I just had my bone density test!” I called to T.

“Oh?” he said.

“Yeah, I just fell on my knee and it didn’t shatter, so I guess I’m good.”

Works for me. I’m tired of doctor’s appointments.

How about you? How do you feel about doctors appointments? Do you mind them? Hate them? Avoid them altogether?

A Grave Update

A couple of months ago – on January 14th, to be exact – I shared for the first time that I am struggling with Graves disease. If you read that post you’ll know that I was diagnosed with hyperthyroidism five years ago. My conventional doctor immediately recommended radioactive iodine – a cure only slightly less problematic than the disease itself, at least in my eyes. I refused and sought alternate treatments.

Eventually, I ended up seeing a naturopathic doctor who gave me hope that I could control my hormone levels naturally through diet, supplements and exercise – falling back temporarily on pharmaceuticals if necessary. For several years it worked, but a blood test this January showed that my thyroid levels had spiked again.

At this point my naturopathic doctor recommended that I see my conventional doctor again, as well as have an eye exam and a bone density test.

I haven’t mentioned it since.

This is because denial is my favorite coping mechanism, closely followed by escapism.

I haven’t, however, been idle in my quest for health. I’ve just been quiet about it. But things are afoot at the Circle K, as they once said in Bill and Ted’s Excellent Adventure. Over the past two months I’ve watched that one post about Graves climb almost to the top of my “most read posts” and not through any promotion of my own. As I said, I haven’t touched it. But I get a lot of hits through WordPress tags like “hyperthyroidism” and “Graves disease” as well as a few general web searches. Clearly there are people out there who want to know more about hyperthyroidism.

And that has me thinking that I want to do more with this. Not because I’m looking to drive traffic to my blog or for any other sordid reason, but because I’ve seen how communities can grow through blogging and I’ve experienced how supportive those communities can be.

MilSpouses, I’m looking at you.

I’m not yet sure what “more” is going to look like. Ideas flutter and hop excitedly around my brain but I can’t seem to form them into a cohesive plan. I’m thinking food, I’m thinking thyroid, I’m thinking still MilSpouse…but how do these all tie together? Don’t know. Maybe they don’t need to. But the details have held me back for too long, so it’s time to just dive in with a general update.


(not my photo)

After seeing my naturopathic doctor in January, I now had three things on my medical To Do list. I didn’t want to do any of them.

Worse, I couldn’t figure out why the doc was suddenly pushing me back into the field of conventional medicine. He knows I am uncomfortable there, yet all he said was, “Do you want me to continue to handle the case or do you want someone with more experience?”

I appreciated his honesty, but my honest answer would’ve been, “You.” Still, I can kind of understand why he wanted me to see another doctor. There are several reasons that I can come up with:

1. My hormone levels were ridiculous. Not only were my T3 and T4 high, but my TSH, the pituitary hormone that stimulates thyroid production, was way off. Normal range is 0.27 – 4.20. Mine was so low it was immeasurable. (This seems counterintuitive, but when thyroid production is high, the TSH shuts down to try to stop that production. Mine was practically flatlined, but my thyroid gland was still gushing faster than a BP oil spill.)

2. My thyroid antibodies were also, um, high. Thyroid antibodies are the things that are completely confused and have identified the thyroid as a menace. They are trying to get rid of the menace. Range? Should be below 9.0. Mine? Uh…360.

I’m kind of proud of that astronomical figure, in a weird, twisted way. I consider it my justification that this isn’t all in my head. It’s my badge. My free pass to “I’m Screwed Up Land”. Yay, me.

And finally,

3. My husband and I are trying to conceive.

Number three is probably the primary reason my nat doc wanted to hand me off like a baton at relay time. There are all kinds of considerations in the TTC department. One is that it is more difficult to conceive when your thyroid levels are either high or low since this can cause irregular periods (among other problems). Another is how to regulate those levels in a way that is safe for a potential fetus. (I’ll give you a hint – radioactive iodine is not one of them.)

So, there I was. Orphaned. And, oh! “So sad to be all alone in da world.”

Anyone recognize that quote? It’s from this musical.

And with three chores:

1. Appointment with an endocrinologist.

2. Eye exam.

3. Bone density test.

Tomorrow I’ll tell you how I did with my list.

In the meantime, I’ve got a new “Tell Me” poll up in the right sidebar and I’d love it if you would vote. Results will be revealed…sometime.