Category Archives: Graves Disease

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.

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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?