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.

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

June labs

I have been feeling irritable and achy and having heart palpitations, so I increased PTU from 50 mg. daily to 75 mg (50 in AM and 25 in PM) daily, asked for labs this month.

After a week on the increased dosage, I feel better, although the sore joints persist.

Here's the hormonal progression, with the latest figure in bold:

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

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

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

So everything is normal, although I suspect that I was slipping into a less-than-optimal zone, based on the way I felt. The physician's advice was to continue the current PTU dosage.

While there is a wide range of "normal" TSH, most people seem to do best in the 1–2 range, and indeed, I felt best there, too.

As an aside, I'm curious to see what my TSH was historically, the times I'd had it checked in my 20s and 30s for OB checkups and other reasons. I suspect that I have tended to be hypothyroid through the years.

Augh—feeling hit by a truck

Okay—maybe that's a bit melodramatic. But as before, when the thyroid was running high, every finger joint as well as the knees and back are in terrible pain.

Arthralgia is not uncommon with hyperthyroidism. All I can say personally is that my own pain would flare from time to time over 4 years, then really got bad as the hyperthyroidism accelerated. After beginning to take antithyroid drugs, it went away completely—until this week. I can't believe how poleaxed by it I feel, especially the back pain.

Heart palpitations back

The heart palpitations are back and I think I'm headed into hyperthyroid territory again. Other little clues, such as complete impatience with family and friends and scattered thoughts, led me to cut a bunch of PTU pills in half and add 25 mg to my regimen, later in the day. I hope that this will keep my thyroid levels in the "sweet spot."

At least I have no tremors yet, or not many, so, judging from last time, I am probably not in the proper hyperthyroid realm quite yet. Back then, the tremors and weakness were overwhelming.

Presbyopia? Already?

I went for an exam today to see about new eyeglasses. My eyes are darn near perfect except for some astigmatism that makes vertical lines appear double, so I don't wear the glasses except to read road signs. Now today they've found that I need a little help with distance, and ugh—bifocals.

Well, just the bare beginnings of bifocals—so I deferred. Let my reading vision get worse before I go for bifocals.

Now I am wondering if the congestive changes of Graves' may have affected my distance vision.

And both the assistant and the optometrist noted that I have that Graves' stare. :-(

May eyeopener

Greetings from the month of May. This is the first month I have not had labs drawn, and unless I become very symptomatic, I will not have them drawn until mid-July.

As you can see by the photo at left, my right eye still has a startled appearance. It's not too bothersome aside from having to scrape tape adhesive off my eyelid and cheek in the morning. I am worried that the lid retraction and puffiness will not resolve on their own. They might, they might not. It might take minor surgery to get the lid to close more on its own.

This marks the seventh month of active eye disease. the eyes will be fine for weeks or even improved, and then I'll have a day of swelling and eye pain and afterward will have reached a new level of lid retraction. I wonder if the overmedication with ATDs and low FT3 and FT4 are responsible for the exacerbations.

Other symptoms are the occasional heart palpitation and some weird twitches, mostly of the right eye and lips. I have more patience than I did (which is not saying much, for those who know me), and no more bouts of "Graves' rage"—the hormone-fueled disinhibition that makes Graves' patients difficult to live with.

And hair—it's still falling out, though not quite by the handful. A fine fuzz is growing in, too. I'm off beta blockers entirely, now, so if they had any effect on hair loss, that should have passed by now. Here's to regaining my former crown of glory.

I also have the chance to rest and de-stress for a time, since I've completed nursing school. Now to take the boards, relax a while, and then go off to the salt mines.