Thursday, July 24, 2008

Acropachy and pretibial myxedema

Wednesday my endocrinologist suggested that I may have some form of dermopathy (skin abnormality) and perhaps the beginnings of pretibial myxedema and acropachy.

Pretibial myxedema is a deposition of a mucinous substance in the skin of the shins, basically, thanks (or no thanks) to autoimmune attacks upon susceptible tissue there. It takes all kinds of forms, including one that looks like elephantiasis. The most common form in one study appeared to be nonpitting edema. Nonpitting edema is also known as "brawny" edema, and might describe the slight swelling of my own shins, especially the left one.

Acropachy describes clubbing of the fingers (and sometimes toes), as well as skin and joint changes in the fingers. X-rays will show fuzzy looking bony growths of the fingers and sometimes other long bones. Sometimes the fingers don't club at all . . . they just hurt.

What my endo found in addition to the puffy shins were overly fleshy hands. It led him, last December, to test me for excess growth hormone. He suspected acromegaly, though what he found was a deficiency of growth hormone, which may or may not be related to the thyroid stuff.

Now he thinks that the fleshy palms and sore distal finger joints may point to acropachy.

I read a little more about it and found out that most acropachy doesn't hurt, but when it does, the pain is frequently intermittent (Check), and in the distal joints (Check). Clubbing of the fingernails may not occur, or then again, the whole hands may be affected by swelling (Check).

Pretibial myxedema most commonly manifests itself as the brawny edema, thought it may be discolored or wartyin texture. Both it and acropachy are most common in people currently smoking, and in people with extremely high levels of TSI antibodies (My antibodies were "moderate"), and both PTM and acropachy represent the most extreme manifestations of Graves' disease.

Lucky me! The only thing that cheers me up is that the studies show that the joint pain disappears, and in a significant proportion of cases, the PTM and the acropachy improve or remit, given time.

Eye check-up today

Today Dr. P. took a look at my eyes and pronounced them "fairly stable." From my point of view, three things have changed since I saw him last March:

  1. The right eyelid is a little more retracted and I consistently tape the eye shut at night.
  2. I need to use far fewer vials of artificial tears.
  3. I only have isolated days of eye pressure and orbital pain. "Hiccoughs" of pain.

Everything else is the same: the swelling, the injection, the double vision while gazing up and to the right, too. My proptosis measures the same as in December: 22 mm. in the left eye and 23 in the right. March's measurement was 22/22, which is within the margin of error with the Hertel instrument.

The ophthalmologist thinks I had this before, in a less severe form, given my history of puffy gritty eyes lasting 3 or 4 months, back in 1993. He also thinks that while this bout is worse, I will not progress to the Marty Feldman stage, will not lose vision and will not need orbital recession surgery. If time does not lower my right eyelid, I may need to see a plastic surgeon about advancing it so I can stop taping it shut at night and stop looking like Bill the dadburned Cat, but that will take another 24 months or so, to make sure that my eyes are done.

Visual field testing was fine, although staring at that white, featureless background was kind of psychedelic after a while. I started seeing great waves of rose color in my left eye, which messed up my perception of some of the dimmer flashes of light. So the test said "Marginal" rather than "Within normal limits," as it had for the other eye. But it also said, "Low test reliability." Eye presure is good, optic nerves look good, etc., etc.

So the relative stability of signs and symptoms uggest that I am in what they call the plateau phase of GO right now. It's a time during which symptoms ease up a bit or at least don't get worse, with some blips of activity. Up next is a resolution phase, in which symptoms go away or improve a bit.

Wednesday, July 23, 2008

Your numbers are good, ergo you also feel good

Had my quarterly visit to the endo again, with mixed results. Labs look okay, if a hair lower than optimal, with TSH climbing slowly. That much is good, and I would like the FT3 and FT4 to be a few tenths higher, so I felt a bit better.

The bad part is that I may be showing signs of pretibial myxedema (the swollen shins—luckily no red discoloration so far), and my distal finger joints still hurt, and more of them. I think it's thyroid-related because the pain disappeared when I was crawling toward hypothyroidism. "Could be the beginnings of acropachy," the endo said. Acropachy is the clubbed fingers that only a fraction of a percentage of Graves' patients get. So far they look okay, but they hurt.

Can't say I'm happy to be drawing the short straw and showing moderate eye disease and the shins and fingers stuff. Why couldn't this course be mild, as it was the first time around, in 1993? (and Dr. Endo agrees that I most likely had GO back then, even though I had no signs of thyrotoxicosis)

I mentioned the labile moods and impatience to the endo and he knows nothing about the long-term mental and emotional sequelae of Graves'. I'm supposed to be sweetness and light now that the thyroid has been drugged into submission. I'd send him a few abstracts on the long-term emotional impacts of Graves' from NIH . . . if I thought he'd have time to read them.

All in all I came away with the impression that an endo is good for controlling the thyroid, but nearly useless for the autoimmune and psych manifestations. Have to be my own advocate, I guess. Well, that's nothing new.

Labs, with July in bold:

TSH went from below 0.05 -> 0.17 -> 3.81 -> 3.28 -> 1.87 -> 0.47 -> 0.89

Free T4 went from 1.3 -> 0.7 -> 0.6 -> 0.7 -> 0.8 -> 0.8 -> 0.8

Free T3 went from 5.2 to 2.5 -> 2.4 -> 2.8 -> 3.0 -> 3.2 -> 2.6

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