Thursday, December 27, 2007

The big light-up

Well I had a little feeling to have a big night
And I woke up feeling small and not so brave and not quite right
—Johnny Cash, "The Big Light"



I love Johnny Cash. So much so that I "had a little feeling" to go catch his old band, the Tennessee Three, at a casino north of here. I planned on it for weeks.

Well. That casino was like the worst smoking aversion booth ever created: flashing lights, dinging bells and hundreds of lab rats hunched over slot machines—each one with a heater hanging off his lips. I almost left right there, but made my way to the stage where the band was to play.

Except the band had cancelled. And the casino hadn't bothered to update its web site. Lac Court Oreilles Casino. It's a smoke bomb with surly help, a cobweb site and cancelled acts, as far as I can tell, and should be avoided, unless you like throwing away time and money.

Anyhow, the point of my story is, that my eyes swelled up the following Thursday. Could 20 minutes of thick, blue air trigger Graves' ophthalmopathy? My endocrinologist told me to stay the heck away from secondhand smoke . . .

For the record, I am a former smoker who kicked the habit nine years ago.

By the way, Cash is really wasted on this video, singing about how much he hates hangovers, isn't he?

Labs, late 2007

In November my TSH came back as <0.05, which is below the normal lower limit of 0.35. Free T4 was 1.6, just one tenth of a point higher than the normal upper limit for that lab. Even so, I felt horrible: shaky, weak, bruised-feeling thighs, nervous as a bug. I had the attention span of an Irish setter.

In December I got to see an endocrinologist who ordered a thyroid cascade. The TSH came back as <0.05 again, and the free T4 was the same, too, although just within bounds of the lab's normal range. Free T3 was 5.2, just outside a normal range of 2.1–4.1. So . . . not so bad!

I tested positive for only TSH receptor antibody. I don't know the number, just that the titer was "high."

The endocrinologist also looked at my palms and declared them thickened. He wondered if I didn't have too much growth hormone on board, "Although you don't look like you have acromegaly" to which I added a silent "Amen!" Acromegaly is the result of too much growth hormone after the growth plates of the bones have tossed in the towel, and results in a coarsening of features. Think "Lurch" or Andre the Giant. It most commonly strikes middle-aged people, too.

So, he ordered IGF1, or insulin-like growth factor, a test that indirectly reveals the amount of growth hormone pumped out of the pituitary. I told him why bother—I actually have the more delicate hands of the women in my family. Surprisingly, though, my IGF1 levels came back low. Sweet. So I'm becoming prematurely wizened from the inside out? We will recheck IGF1 when I'm euthyroid and go from there.

All in the family

The lady at left is my paternal grandmother, sometime in the late 1920s. If you look closely, you can see an asymmetry in her eyes and a goiter, although I think she's darn cute, and my grandfather certainly thought she was a dish!

When she was 17 and working as a hired girl, a guest at her employer's house, a physician, noticed a tremor as she served supper and did dishes, and then told her that she had a goiter. Untreated, she told me, her problem got worse after each baby, until she could hardly speak or function. She finally had a thyroidectomy sometime in the late 1940s. I remember the fine white necklace of a scar describing an arc above her collarbone.

Did she have Graves' disease? I'm not sure. But she just died, age 100, so it hardly held her back!

Thyroid trouble tends to run in families, and it makes no difference what form it takes. In their seventies, my mother and her sister have become hypothyroid. In another branch of the family, several members in all generations suffered from thyroid problems. Thyroid problems seem to have converged on me, genetically speaking.

Wednesday, December 26, 2007

Euthyroid Graves' in 1993?

Years ago I lived in Mexico, in a part where it was well above 100°F each day. I sweat so much my shirt would have salt crystals on it after a day, and finally started having trouble climbing stairs. I would have to pull myself up stairs with both hands on the railing because my legs just weren't working. A doctor listened to me for a minute and declared that I needed more potassium, and darned if potassium supplements and a lot of Pedialyte didn't whip me back into shape.

It being Mexico, I walked everywhere and ate well, so I lost almost 40 pounds in just a few months. I felt great—no signs or symptoms of hyperthyroidism. But some lymph nodes in my neck swelled a bit, and I came down with what I told my husband was pinkeye.

The photo at left is one of the few I have from that time. It is not terribly obvious,although I can tell that there was swelling around both eyes. 28 at the time, my eyes weren't as dramatically swollen as they get these days, thanks to better collagen, I suppose. I was laughing about the "salchicha" they served with my waffle. I was under the illusion that it would be sausage. It's not. It never is, no matter how one hopes. It's the usual mixture of nitrites and pig lips.

So, this was a pinkeye that lasted for months, and on which antibiotics had no effect. My upper lids were both swollen and my eyes were red and gritty feeling, although they did not become sticky with purulent matter. None at all. It finally went away a few months after I returned to the states.

Now, what was that all about?

Medications

Rather than just ablate my thyroid with radioactive iodine, I want to do a trial of Tapazole, possibly for a year and a half, along with alternative methods of dampening the thyroid and calming the immune system. Currently I take 20 mg of Tapazole (down from 40 mg for the first two weeks), 160 of propranolol (Innopran, an extended-release form), and alprazolam, for when the jitters get to be too much.

Graves' disease has turned me into a horrible grouch (actually, I was pretty grouchy to begin with), and my 5 -year-old deserves much better than that, so I take the alprazolam!

Initially, my regular physician started me on atenolol, a selective beta blocker that calms the heart but not the peripheral receptors, so I still felt like a big tuning fork—even my tongue had tremors. My endocrinologist gave me to understand that propranolol actually prevents some conversion of thyroxine (T4) to triiodothyronine (T3), and of course it makes the patient feel more relaxed by blocking the peripheral cholinergic receptors. I tried to wean down to 80 mg last week, but then on Christmas Day felt like a tuning fork again. I need to be more patient.

Eyes, eyes, eyes

The percentage of people unlucky enough to develop Graves orbitopathy varies from report to report, from 25–30% to 60%, and most patients find it more problematic than the toxic thyroid symptoms.

Mild, typical symptoms are watery, gritty feeling eyes and swelling of the lids from the antibody attack, and often the cholinergic effects of high thyroid hormones themselves—chiefly lid lag. More serious symptoms include extrusion of the eyeballs forward in the orbits (exophthalmos, a.k.a. proptosis) and some visual field defects for the unlucky few (5% or less).

I have periorbital swelling, swelling of the ethmoid sinuses between the eyes, tearing, grittiness, redness, mild lid lag in the right eye and restriction of the upgaze in my right eye. Also when I look to the right, I see double.

The ophthalmologist tested my vision carefully and found no defects and saw "nothing too scary." He claims that, at 22 and 23 mm, my eyeballs are on the upper end of normal (16mm is typical) , and probably a little proptotic. I have always had prominent eyes, though, and no one thinks I look "bug-eyed" just yet. The double vision is only at the periphery, so I can still drive.

I go back in 3 months for a follow-up exam, including my visual fields again.

Man, I felt like giant mole, walking out of the eye doctor's office, stunned by magnesium-bright sunlight.

One of the problems with my primary physician's not suspecting Graves' disease was that my swelling seemed to be unilateral and she could discern no lid lag (a spastic delay in lid lowering when the eye looks down). But I did have lid lag, albeit mild, and she simply was unaware that Graves' orbitopathy freqently affects one eye much worse than the other.

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