The white pine report

Introduction

2010-12-26T17:18:00.000-08:00

12-26-07 Hello. I am a 42 year old nursing student who has come down with Graves' disease, a form of autoimmune hyperthyroidism, that also attacks the eyes and sometimes other areas of the skin. I will be logging aspects of my experience with Graves' in hopes of helping others who suffer from it.

I have been having intermittent symptoms of the disease for about a year: hot flashes, irregular heartbeat, tremors, surges of high systolic BP, thinning hair, and so forth. The symptoms set in to stay in September, my eyes swelled in October, and in November, I started to get the anxiety, tremors, weakness and cognitive problems of mild thyrotoxicosis, and the labs reflected that.

When I went in with the swollen eye, my physician thought it was a beginning of cellulitis, or a sympathetic swelling from a sinus infection, but a sinus CT ruled that out. I finally asked her to check my thyroid hormone levels, and they showed hyperthyroidism, And my TSH receptor antibody titer was high, pointing to Graves'.

I thought it might be useful to post a photograph of what my eyes look like currently. The right eye has a lot of periorbital swelling and other symptoms, which wax and wane. The other eye is swollen, too, but only minimally.

So . . . I intend to post from time to time with progress notes. At least one hopes for progress.

As for the name of this blog, it stems from where I live, in northern Wisconsin, where all those beautiful white pines that fed the Cornell, Weyerhaueser, Knapp and Stout companies grew. The second generation is back and towering! This blog was meant for reporting on environmental topics in northwest Wisconsin, but, eh, life—and Graves' disease—got in the way.

"Persistent remission"

2010-05-10T10:19:00.000-07:00

From my endocrinologist:

"It appears you are in persistent remission from the Graves' disease."

And he discharged me to the care of my primary physician! How cool is that?

Remission has lasted almost a year, thus far. The last remission was about 14 years.

Still in remission

2010-02-04T10:16:00.000-08:00

My first remission from Graves' lasted from age 28 until age 41 or so, and I have my hopes up for another long remission. Whenever I feel out of sorts or get heart palpitations, I begin to wonder if the hyperthyroid symptoms are returning, but so far, so good. The last set of labs showed TSH at 1.2 and everything else perfect, too.

And almost 28 months after my thyroid eye disease reappeared, things are much more normal—just a little sweling around the right eye, and a little double vision left in a coupleof peripheral fields. Not sure if this will ever go away (caused by the bellies of the ocular muscles having become swollen, attacked by my own immune system), but I can certainly live with it. I will always have a bit of a bulgy stare, but not severe.

I was worried when I took a job last March as a nurse that the stress of it would make me sick again, but it did not. And I always had blamed the stress and intensity of nursing school for my recurrence, but in truth, having had a baby at age 37 is probably what triggered the relapse. some of the symptoms began when he was still a toddler, and childbirth is a very common trigger. Just some thoughts. Posting a current picture, showing the eyes. My husband says the right one will still sometimes pop open during sleep, but as my ophthalmologist put it, the corneas tend to stay covered during sleep because the eyes naturally roll upward. So, not much chance of corneal ulceration at this point.

That's my update. Best wishes to those of you with Graves' reading this little blog of mine.

Blessed remission

2009-09-06T19:04:00.000-07:00

Spoke with Deb, my endocrinologist's nurse the other day, and after over a month of not taking propylthiouracil, my TSH is still 1.12, which he calls remission from Graves' disease, which is surprising, because I had a strange 2 days last month during which I was sure the Graves' was coming back. I took leftover propranolol from '08 to try to quell the jitters, but it didn't work. Who knows what that was?

My eyes are not 100% back to normal, but almost. Slightly more swelling around the left one and still some limited motion and double vision. Still some lid lag, but nothing like last year. I still have some weird bony overgrowth in fingers and tibias that suggests some acropachy, but whatever. I'm most thankful that the years of feeling horrid are winding down. This last time was much worse than the first flare-up, in 1993.

Home stretch?

2009-07-15T12:55:00.000-07:00

The endocrinologist's nurse called today, saying my thyroid antibodies were negative, my thyroid profile was normal, and I could just stop the PTU and retest in 6 weeks. My eyes are much better than even last fall, although I have a feeling that I will never be free of the mobility problems with my right eye, nor the remainder of the swelling around it. But this is nothing compared to looking pop-eyed or having to use eye drops every 15 minutes.

I vow to get my TSH and FT4 and FT3 tested several times a year, and act if things are higher or lower than the narrow range I've maintained this past year. Amazing how horrible high or low thyroid levels can make a person feel.

Remission approaching?

2009-06-08T14:22:00.000-07:00

"You're only taking 12.5 milligrams of PTU? Once a day?" is what my endocrinologist asked. He knows that when I get symptomatic, I cut back on the dosage—and a quarter pill a day is about as small a dosage as one can swallow.

Indeed I had been, for the past three weeks, since my heart began to do the flip-flops again and my joints began to hurt. "Your thyroid hormones are perfect. Maybe it's time to stop the drug," he said. I nodded enthusiastically.

So, the plan is to take 12.5 mg for one more month, then retake TSH, free T4 and free T3, and then go from there. If things tick up, then we need to continue PTU for a while, if not, then we can discontinue PTU.

My labs from 6-1-09: TSH: 1.55; FT4: 0.07; and FT3: 3.0. This is much the same as the last half year has been.

I asked him to check antibodies, to compare to the moderate levels I had before, and this will be done in a month. (I wanted to know before my junk insurance takes over from my husband's gold-plated stuff later this year!)

I also asked him what the probability of staying in remission was, and he said 30%. Since I first had an attack of Graves in 1993, who really knows what my pattern has been or will be, but 30% is nice! If not, then I'll keep eating PTU.

Long term, of course, the probability of having the thyroid die on its own is around 90%, so eventually I'll wind up on levothyroxine.

The endo thinks my eyes are pretty much "burned out" and look much better than a year ago this time, or a year and a half ago. I see the ophthalmologist for what will perhaps be the last time next month.

Labs tomorrow

2009-05-31T19:39:00.000-07:00

I have a lab draw tomorrow after a few months of not checking. Things have been okay, with TSH around 1 and the free T4 and free T3 kind of low, but usually mid-range.

I have learned that when my heart starts to palpitate, it is most likely hypothyroidism coming on, and so I reduce my morning PTU dose, and the palpitations disappear in a few days. This has happened several times, and the most recent time was 2 weeks ago. Now I'm on only 12.5 mg a day—just a little quarter pill. I wonder how my labs will look, and if I can finally ditch the PTU.

My eyes have been fine. Haven't taped my right eye shut in almost a year, nor needed eye drops. The puffiness and double vision remain, although both have decreased. I still have a little right-sided lid retraction, but it no longer makes one eye look much bigger than the other. I'm posting a mug shot to show what I mean.

Since the last post I've joined the working world and the weight is dropping off! (It helps to be too busy to eat) 20 pounds so far, and counting.

Eye and endo appointments this month

2009-02-09T19:00:00.000-08:00

The short story is that the ophthalmologist thinks that my eyes are going into the quiescent phase (despite a partial relapse a little over a month ago). The proptosis is 22/22 and probably not going to change much. The double vision and dryness are much better. Eyes still puffy, but not as much. I can live with it.

Twice this fall and winter my heart began to palpitate, so each time I reduced my PTU dosage, and a week later, the palpitations went away. Each time. Now, for the past month, I've taken 25 mg. a day, and my thyroid hormones now look "perfect," according to the endo. TSH is a hair over 1, FT4 is 0.7, and FT3 is 3. I see the endo again in 4 months but recheck labs in 6 weeks, in case things are not truly stable. He encourages me to check any time I feel funny, although my having reduced meds each time turned out to be the right thing to do. I'm hoping this smaller dose realy means that remission is coming up. I did it before for some 12 or 13 years, and would like to again.

"I love thyroid cases!" he said. I looked at him funny and said, "Me too" with a touch of sarcasm. It was such an odd thing to hear from a physician, although I do know what he means. Nurses seem to "love" wound care, for example.

I feel good—much better since I started up exercising whether I felt like it or not. A few pounds came off, although I only know this because my clothes feel better. I am still up about 45 pounds from this time three years ago. Shocking.

A heavy topic

2008-12-28T06:34:00.000-08:00

I have not stepped on a scale for four months. I know that beginning treatment for Graves' with Tapazole put on an instant seven pounds (on an already overloaded frame) and another seven went on over the summer. Then I got sick of the "Graves' rage" and being extremely cranky all the time—intolerant of my boisterous five-year-old, and so on. So I began a regimen of fluoxetine, an SSRI antidepressant which really made little things seem like little things again! I love how easy-going it has made me, and so does the family.

Oh, but the weight! I dare not step on the scale to see how much has gone on since September. All I know is that my clothes don't fit. I was this large once before, back in the early nineties, after quitting smoking, and I'm afraid I've reached that high-water mark again.

Now that Christmas with its excesses has passed, I'm going to try my best to reduce back to what I was, with diet and exercise. I have a copy of Mary Shomon's The Thyroid Diet, just for tips and tricks (although it is written mainly for those who are hypothyroid). And if I do not soon see my clothes fitting better, I am going to jettison the fluoxetine and find some other way to cope with the moodiness of Graves'. Wish me luck.

Oh, so normal: a cautionary tale

2008-11-21T15:14:00.000-08:00

Hey— do my eyes look Graves'-like? I didn't thinks so. They do retain some symptoms, but look fairly normal.

Last month, my FT4 was low, but I was counseled to remain on too high a PTU dosage. I ignored that!

I just got back some rather expeditious lab work from the endo today. Since I had confessed to him that I had suffered from kidney stones at least twice since last June, he checked the "estimated glomerular filtration rate" and decreed that at 83.4 mL/min, my kidney function was normal. Quite a relief, since it was sub-par last January.

PTU has not damaged my liver nor caused dangerous agranulocytosis, as evidenced by the AST, ALT and WBC (Am I sounding like a nurse, yet?).

Last time I had my FT3 and FT4 tested, the FT4 was low, and my heart was as irregular as the "Take Five" drum solo, thanks to a thyroid dipping too low. Dr. Endo explained to me that FT4 did not appear as easily with PTU treatment—something about "inefficiency"—although he counseled me to remain on my dosage of 60 mg. per day of PTU. As I said, I ignored that and went on 50 mg. QD, taken in the morning, and my heart quit beating funny. And now my thyroid profile is normal. (I am told to ignore any TSH value as long as FT4 and FT3 are within the healthy range, preferably mid-range). My values this past Friday:

TSH.0.45 (down)
FT3: 2,9 (up)
(FT4: 0.7 (up!)

So "Hooray!"

Such a struggle to remain normal. I want to keep my hair regenerating rather than falling out, so I am glad to avoid another serious dip into hypothyroid territory. The moral of the story is credited to Elaine Moore, a fellow Graves' sufferer: "The TSH level does not matter; pay attention to the FT3 and FT4. They should be mid-range." The secondary moral of the story is that the endocrinologist may not be the wisest party.

Bless his overworked heart!

And so it goes. My eyes seem to have improved and I continue to hope for remission.

One year ago today

2008-11-18T07:42:00.000-08:00

One year ago today I got labs back telling me that I probably had Grave's disease. My right eye was puffy, my blood pressure was climbing, I was trembling, hated loud noises, had hot flashes all the time, and so on. A trip to the endocrinologist on Dec. 4 nailed down the diagnosis, and I went on Tapazole, 40 mg. every day. That rapidly sent me in the hypothyroid direction, and while I was no longer shaky, I couldn't think very fast or well. With a med change and dosage adjustment, I hit the hormonal sweet spot in April, but by that time my eyes troubled me, with an uneven appearance, redness and some double vision.

My eyes have been in the plateau phase lately, seldom feeling dry, looking less red, puffy and retracted. But they are still not back to what they had been, and may never be.

A friend of mine who had Graves' 30 years ago still has one eye that will not close quite right . . .

My labs of late have been a little funky, with FT4 levels low, but I'm working on it. Things are not perfect—my fingers hurt, my shins are affected, too—but in general, things are much better than they were one year ago.

Dear Ms. Shrdlu:

2008-09-23T16:34:00.000-07:00

Got a letter from the endocrinologist telling me what I already knew about my lab results: they are good and my dose of PTU should remain the same.

I have had two decades' worth of trouble with sex hormones as well, and asked him to draw some labs on those, too. It amounts to very atypical PCOS that doesn't seem to come from insulin resistance, is not helped by metformin and never affected my fertility, anyhow. But it is annoying. I'm pleased to see that while testosterone and androstenedione are elevated, they look a lot better than 10 years ago.

The official boilerplate doctor's response to my shin and painful fingers: "So?"

Posting a new picture, with son, mugging at the camera. As you can see, the eyes are not greatly out of whack. They trouble me much less than last winter and spring, although the puffiness has not gone away and the lid lag varies.

September labs

2008-09-09T16:53:00.000-07:00

TSH: 0.92
Free T3: 3.1
Free T4: 0.6

So things are pretty stable on ~60 mg propylthiouracil every day.

Hayfever last week has triggered some eye symptoms. Got an "eye headache" the other day. Any challenge to the immune system seems to goad the Graves'.

Acropachy and pretibial myxedema

2008-07-24T22:03:00.000-07:00

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

2008-07-24T21:41:00.000-07:00

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:

The right eyelid is a little more retracted and I consistently tape the eye shut at night.
I need to use far fewer vials of artificial tears.
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

2008-07-23T20:03:00.000-07:00

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

2008-06-11T07:13:00.000-07:00

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

2008-06-02T21:53:00.000-07:00

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

2008-06-01T00:25:00.001-07:00

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?

2008-05-21T13:56:00.000-07:00

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

2008-05-18T19:16:00.001-07:00

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.

April labs: hooray!

2008-04-21T13:53:00.000-07:00

I just said that I was hoping for a TSH between one and two, and free T4 and free T3 in mid-range, away from the subclinical hyopthyroid realm. Well the endo's nurse just called and that has happened, although free T4 is still a bit low. Here is the progression, with latest results in bold:

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

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

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

Last month's score was after switching to PTU at 50 mg. twice a day.

This month's score follows taking PTU at 50 mg. once a day.

I don't have a lab draw again until mid-July, along with a visit to the endo. I am weaning off the propranolol and stepping up the exercise. Also working on eliminating bad, processed food from my diet, to heal the immune system. Between that and a summer spent working at home, gardening, painting, etc., I hope to put active disease behind me.

Telogen effluvium following subclinical hypothyroidism

2008-04-20T08:52:00.000-07:00

Telogen effluvium is the name for the periodic heavy shedding that hair goes through—usually in response to some physical stress: surgery, fever, hormonal fluctuation. Hair from all over the scalp falls out, anywhere from one to six months following the stressor. And telogen effluvium is happening to me right now.

My hair was already looking a little ratty from all that I had lost last summer and fall. Hyperthyroidism tends to make hair fall out and thin its caliber (make it finer). Then anti-thyroid meds such as the ones I took tend to worsen the problem, most likely because they induce hypothyroidism. In my case, I was on the verge of overt hypothyroidism shortly after beginning Tapazole. (Here's hoping the trend is still reversing).

It is still looking ratty as I pull it out by the drain-clogging handful. I'm lucky to have a lot of hair to begin with, with lots of body, but the hair loss is still fairly evident.

The bright side of telogen effluvium is that by the time one notices it, new hair is growing in, pushing out the old. The scalp is soon covered with prickles and a new fringe of virgin hair is growing in. I managed to miss the hair growing back in the last time this happened to me, probably because I was still toxic then, metabolism working overtime.

Other "benefits" of subtle hypothyroidism: Nails become thickened, jowls become heavier, eyes become puffier and weight gets put on. Up 7 pounds since December. And my mind has become sluggish; processing speed is slower and the end result of all that labor is usually not a pearl of wisdom.

If I could do this over again, I would have really put the brakes on the ATDs a month after treatment began, because letting myself get so close to hypothyroidism did me no favors whatsoever.

Tired of this

2008-04-16T20:48:00.000-07:00

For the past two days, I've been looking half surprised. The lid retraction is worse. My eyes don't feel or function any worse—the lid is just a little tighter. Feels as if it has a little sling holding it up.

The eye symptoms wax and wane, and now the wax is max.

Currently waiting to hear labs from my endo's office. Haven't tried to call, since I have been busy. It'll be interesting to see if I am still tending toward the hypothyroid side. I feel better than two months ago, so I'm hoping for a TSH between 1 and 2, and FT4 and FT3 values in mid range. That would be nice.

My heart is palpitating a lot more, and the propranolol prescription will run out soon. Might be time to taper off completely, and quit cheating with caffeine, too.

Eye exercises

2008-04-02T22:06:00.001-07:00

That's me, doing my eye exercises.

Okay, not really. I made that about 8 years ago, just having fun with Image Ready. But doing eye exercises is something for Graves' ophthalmopathy suffers to ask their doctors about. It can extend the range of motion of eye muscles and some claim it speeds recovery—putting eyes through full range of motion in all the cardinal gazes. The drawback (and this is why you need to ask your doctor) is that looking up can increase intraocular pressure in Graves' ophthalmopathy patients. Any glaucoma suffer can attest to why this is not a Good Thing.

Why consider doing exercises? Because recovery from having double vision (diplopia) is not a sure thing.

March labs

2008-03-14T11:49:00.000-07:00

So TSH went from below 0.05 -> 0.17 -> 3.81 -> 3.28

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

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

So my thyroid hormones went back up a hair after the 9-day hiatus and a switch to PTU. I just decided to take 50 mg just once a day because my hormones look so close to swinging hypo. A little exercise, now that nursing clinicals have ended (mostly), should help boost the metabolism.

The reason I fight going hypothyroid is that doing so can exacerbate the eyes.

I just saw my regular practitioner today and she was kind enough to give me my labs. The endo's office hangs onto them until Himself can dictate a letter to me.

In January my liver function tests were quite abnormal--which the endo never bothered to tell me. Now they are fine—probably because I am no longer on the prednisone, which really did make me feel bloated and ill. It can make LFTs look funny. My creatinine was also off kilter, which the endo never mentioned. I knew it, though, and was hoping it was just a fluke.

It looks as though I am going to have to assert myself with this endocrinologist, who seems to guard information and also seems too busy to really read my chart before seeing me. Since his clinic collects $300 for each visit, I'll have to make him work harder.

Twice now, he has recommended RAI—the radioactive iodine procedure that essentially kills the thyroid off (and creates a slightly higher cancer risk). It's a pretty backward practice, which only Americans seem to prefer. everyone else in the world does what I am doing, with drugs to reestablish a euthyroid state.

Visit to the eye doctor, labs

2008-03-10T16:55:00.001-07:00

Here's the current state of my "thyroid stare." The lid retraction doesn't show, although I have taken to taping the eye shut at night.

I just visited the ophthalmologist today, and he said things are fair to middling: corneas not too dry, proptosis steady at 22 mm. for each eye, intraocular pressure "okay,"double vision no worse than before, and most importantly, vision and optic nerves good. I asked him about seeing slightly less red in one eye. He said that it should not be concerning unless it is a definite bleaching out of the color red in the central--not peripheral--vision field. I don't think the difference is striking enough to pursue, since I am not sure if it is new or something I always had.

I go back in June for a check, with visual field testing, as I had last time. The doctor hopes that by October my disease will have burnt itself out and the swelling will have subsided. He holds out little hope for resolution of the proptosis (eye bulge) but nobody thinks my eyes look any bulgier than they always were, so no big deal. I hate the swelling the most, since it makes me look old and tired.

I keep forgetting to tell him and my endocrinologist about my theory of having had euthyroid GO in 1993-94. Doubt it matters.

I am cutting back on PTU and hoping for the best, since even 10 mg of Tapazole had me on the verge of hypothyroidism--my free T3 and free T4 had been on the threshold of going under normal limits. Who knows where they are now, after the med holiday and switch. Labs drwan tomorrow, and maybe I can pry the values out of the endo's nurse this week.

Scleral injection

2008-02-26T22:42:00.000-08:00

Here you see my swollen eye and in the corner a good example of "scleral injection," which is a fancy way of saying bloodshot eyes. There is a tangle of veins and a beefy red patch where the affected eye muscle inserts.

Eyes are the same as ever, and a little worse, since I ate a lot of nori this weekend, which contains a lot of iodine. Oh well.

I keep telling myself I can concentrate on really getting well once nursing school is over.

Good-bye Tapazole, hello PTU

2008-02-19T08:39:00.000-08:00

I was off Tapazole for 9 days after I got some sores in my mouth. Labs the same day showed the white cell count to be within normal limits, which is good, because mouth sores on this drug can point to "agranulocytosis," a type of low white count that can be fatal. I expected to be put back on Tapazole or switched to propylthiouracil (PTU) on visiting the doctor again.

And so last Wednesday I started Tapazole again—and promptly got a mouth ulcer two days later. So I looked up my total white blood cell count (WBC) on my clinic's web site, just to see how "normal" it had been.

Well, the latest WBC had been within normal limits, but it had been down to 5 thousand, when my last three WBC had averaged 9 thousand. I'm not sure the busy endo appreciated that, since he told me he had been known to stop people on Tapazole with only a "slight drop" in their WBC. So I stopped the Tapazole and called again today.

Now the plan is to switch to PTU 50 mg PO bid, and have a lab drawn as planned on 3-11. 100 mg a day is a rather low maintenance dose. I see that one common side effect is whitening of the hair. Cool. Not.

Who knows if this was just a run-of-the-mill canker sore, or what, but with the potential for disaster so high, nobody, including me, wants to take chances. The fact that I almost never get canker sores and then got a third one within 2 days of resuming Tapazole is a little more suggestive of a true problem.

The rather unsubtle moral of this story is to be your own best advocate, especially with someone like an endocrinologist, a type of specialist in short supply and great demand. Mine was too busy to spot a trend in my WBC that may have been significant.

Back on Tap

2008-02-13T17:08:00.000-08:00

Today was my second visit to the endocrinologist. I had been off Tapazole for a little over a week because of concerns about a potential side effect, but since my labs were all normal. I'm back on—at only 5 mg per day. If all goes well, I'll be on it for about 18 months.

My TSI antibody levels at 24% are not exceedingly high; they are average. The antibody level—and the mildness of the former hyperthyroidism—bodes well for a remission, he says. He thinks my eyes look better, although I say the lid retraction on the right eye is worse than in December. The degree of proptosis has stayed the same (20 mm for both eyes this time; 19 and 20 last time. The ophthalmologist got 22 and 23).

He had a resident along and let her feel my goiter. He also pointed out to her how taut my eyeballs feel.

The scale was unkind, showing a gain of 7 pounds since early December, which is a "good" sign when it comes to most Graves' patients. As for me, I am cleared to exercise again, with a caveat to watch my heart rate. I might get to go off the propranolol if I tolerate exercise poorly while on it.

Crappy med. I don't miss the heart palpitations, but everything else about being on propranolol stinks, in my opinion.

So, back on Tapazole and labs in another month. I may only need to check with the endo every 4 months or so. I asked him again about my low insulin-like growth factor, and he said it might have just been because I was sick. A reaction similar to how ovulation is sometimes suspended during periods of illness.

Sleepless eye

2008-02-09T12:31:00.000-08:00

Here's a photo of my pumpkin and me. His eyes are just fine (and a nice chocolate color to boot). My right eye is as swollen as ever. My husband noticed me sleeping with it open for the first time last night, as I sat there zonked out on the davenport (it's clinical time in nursing school, so I get very little sleep midweek). He could see the pupil, he said.

I have noticed that if I don't put the Lacrilube goo in before bed, the eye bothers me more the next day, but so far, Lacrilube without taping seems to do the trick.

I won't tape the eye shut unless the Lacrilube stops working. The idea of taping my damn eyelid shut just takes the cake. Won't do it unless I have to.

Labs, February 2008

2008-02-08T06:53:00.000-08:00

Am off Tapazole for a week until a scheduled appointment with the endocrinologist. As of last Monday, though, my labs—liver, blood count and thyroid—were all normal. TSH is now up to 3.1. Free T4 is 0.6. Free T3 is 2.4—so everything is low-normal. The mouth sores resolved, too.

The fly in the ointment is a slightly worsening eye. Still hoping to avoid extensive double vision. I find myself swiveling my head more to look at things above my head and to the sides. Happily, I can look down and to the left without any problem.

Off Tapazole—argh!

2008-02-05T17:00:00.000-08:00

Brushing my teeth this AM I noticed that a swatch of gum along my molar was eroded and bleeding, and so was a spot by a canine tooth. Mouth sores are something to watch out for on Tapazole or any antithyroid med, so I called the doc's office to report it. They just called back to tell me to discontinue the med, and the endo's office would contact me tomorrow about doing something else. I might wind up just guzzling soy milk and broccoli, or on propiothiouracil (PTU), which is related to Tapazole but in some ways safer.

And in some ways plus dangereux.

The most common cause of mouth sores is a low white blood count. Other causes are a little more dangerous, but also quite rare. The dose I was on—5 mg bid—should not have caused anything because it was pretty low. We'll see, I guess, when the blood count comes in.

I feel good otherwise (just loaded down with work). Something tells me my thyroid levels are looking very good, but now that could reverse, depending on the drug holiday I have to have.

Another eye image

2008-01-25T09:13:00.001-08:00

Here's a quick cam shot showing how the right eye stays open more when looking down. I hadn't realized quite how apparent it must be to others, although I realize that my appearance is not as shocking as that of some Graves' sufferers. Not shocking at all, in fact; I just look a little more haggard than usual. Still, I don't like it.

On the other hand, an acquaintance told me the other day that she has been diagnosed with a pituitary tumor that gives her an intractable migraine. No matter what she does, she rates her pain as constant and moderate. And she goes to school, works and raises several children, one of them quite ill.

So, then, you may offer me a little cheese to go with my whine.

4 days without palpitations

2008-01-23T18:01:00.000-08:00

I cut my propranolol (InnoPran—timed release) in half, gradually, and am now on 80 mg rather than 160. Haven't felt a palpitation since cutting the dosage. My heart rate is back up to about 60, on average.

I wonder if I could begin to cut it out entirely. It did help the nervousness. Perhaps the last semester of nursing class is not the time to throw such a crutch away.

The itsy bitsy appetite . . .

2008-01-23T15:28:00.000-08:00

My appetite for food is gone. In fact, I have some symptoms of gastroparesis (sluggish stomach peristalsis) . I woke up four days ago and disgorged food I had eaten 20 hours before, and ever since, more than a few bites of food fill me up. More than that and it sits like a medicine ball in my stomach for the next 24 hours.

Diabetes is the main cause of this. But it is usually longstanding diabetes, plus I don't have it in the first place.

Hypothyroidism is another cause, and that's what worries me, so I've dropped the Tapazole to 10 mg per day, in two doses. And I'm following my appetite and sticking to light stuff. Oatmeal, Jell-O, whatever. Tonight we're having roast chicken, mashed potatoes and gravy, and if I am not an idiot today, I will measure my portions in molecules.

(Apropos de rien, my husband, whose name is Michael, once got a piece of junk mail addressed to "Molecule A. P_____." How deflating is that? Being called a molecule! A real `WTF' moment.)

Will start in with gentle swimming and walking again, too. I'll bring my little boy, who could use some mid-winter exercise.

Calling my current digestive problem "gastroparesis" is probably overkill, since that is a serious problem, but the fact remains, my digestive system has largely rolled over and gone to sleep. It did that when I was pregnant, too, with the same sort of results . . . yakking Doritos at 3 a.m.

Eyes: ouch. Prednisone isn't good for much in my case, but it does keep the aching orbits at bay.

My nursing instructors have asked after my health, including my emotional stability. I'll be fine. Even in the thick of my tremors and anxiety, my clinical instructor rated one of my main strentgths as being confident and unflappable, and establishing great rapport with my patients. The trick, apparently, is stoicism. My confident façade crumbled only in matters of manual dexterity--and now I have that back again.

Adding another picture . . . the discrepancy in size of left and right eye is obvious if I do not have alert expression on my face. I am so ready for the quiescent phase to kick in. Maybe the eye headaches will stop, then.

January 8 labs

2008-01-18T11:36:00.000-08:00

Well, now the labs suggest why I have begun to feel good the last week: they're back in normal range, except for TSH, which will take some time to come up to the 1–2 range desired. I don't actually know what the values are, as the doctor's office forgot to enclose them, but normal free T3 and T4, as well as AST, ALT, CBC and creatinine sound good to me.

"Continue Tapazole at your current dosage" the letter instructed.

I need to be careful not to go hypothyroid, lest the eyes get worse.

Another problem: my heart still skips and does nutty stuff. The heart palpitations must have kicked in at some level that constituted a subclinical problem, and which has not yet been resolved.

Eyes are as annoying as ever. I read someplace that they will continue to bother me for as long as the TSH receptor antibodies are active, and I will continue to be somewhat moody during that time, too. Quick—where's an anti-antibody pill?

Update 1-19-08: The labs came: TSH now 0.17 uIU/mL (lower limit 0.3). Free T4: 0.7 ng/dL (normal range 0.6–1.2). Free T3: 2.5 pg/mL (range: 2.1–4.1).

So TSH went from below 0.05 to 0.17
Free T4 went from 1.3 to 0.7
Free T3 went from 5.2 to 2.5

Antibodies, from November:
TPO: normal, at 1 IU/mL (0–11 normal range)
TRAb: 24% (>= 16% is considered positive)

The bummer is a creatinine a hair high and an estimated glomerular filtration rate (eGFR) a hair low, at 52. It's never been off before, so hopefully this represents a temporary kick to the kidneys from all the prescribed drugs, and not a real problem with incipient kidney failure.

Second update: The reduced eGFR probably was related to the muscle wasting going on (hard to climb stairs) and maybe even to reduced kidney perfusion from the beta blocker I was on. I need two more poopy eGFRs before I need to worry about "weak kiddleys."

Antibodies, paternalism, and feeling good again

2008-01-15T19:08:00.000-08:00

Call me a control freak (you wouldn't be far off), but I want to know my damn labs! They were taken a week ago and I have heard nothing. Nothing. Last time, it took 2 weeks and a dictated letter from the endocrinologist. That's nice that he wants to put his spin on things, but I know how to interpret my own labs, thank you. I will have to ask to be copied next time.

And yes, I called my clinic after hours and tried to wheedle the values out of the RN on call, but she would not do it.

On the other hand, after months of poopiness, I have felt like a million bucks for the past two days. Amazing! I can concentrate on a task for more than a few seconds again! And yet another reason why I want to know my labs—I don't want to plunge into hypothyroidism—for one thing, it can make the eyes worse. The last semester of nursing classes start next week, too, and I need to be on my game for that.

I see the endo in a few weeks and will ask him to humor me and just have the raw labs made available to me.

Then there are antibodies. Just browsing this weekend I was reminded that people who lack TPO (the peroxidase antibodies) but have high levels of TSH stimulating antibodies (me, that is) have a higher than usual instance of eye problems. I need to find ways to lower the antibodies a.s.a.p. Diet and stress reduction seem a good place to start.

Almost done with the prednisone. It does not seem to help lid puffiness, nor does it decrease the diplopia, but it does curb the aching eyes.

Out of the mouth of a Graves' patient

2008-01-11T13:26:00.000-08:00

Speaking of Babs, what a crusty old lady. And I identify with her 100%, I'm afraid. I remember not believing my eyes when I read that, one Mother's Day back in the '90s, when an admirer asked her if he could give her a Mother's Day card, she ripped into him and told him, "Of course not. I'm not your mother. Give a card to your own mother."

Now I understand. Graves' disease empties one of tolerance for silliness.

So, in honor of that old crab, I am compiling a list of my favorite Barbara Bushisms. I don't agree with her politics, but I have to hand it to her, putting up with all that nonsense from the Great Unwashed. And for staying married and not having car accidents, either.

Oh, wait. She has a chauffeur. Smedley or Rochester, or something like that.

Anyhow, tell it as it is, Babs! 'Cause it's late, you're tired, you're shaky, cross-eyed and sweating bullets, and who really gives a shit, right?

Clinton lied. A man might forget where he parks or where he lives, but he never forgets oral sex, no matter how bad it is.
I just don't like having an almost 60-year-old white-haired son.
I married the first man I ever kissed. When I tell this to my children, they just about throw up.
It's been different. I started driving again. I started cooking again. My driving's better than my cooking.
My son, George, has been a bad, bad boy! Right, George?
One thing I can say about George... he may not be able to keep a job, but he's not boring.
What I'm hearing, which is sort of scary, is they all want to stay in Texas. Everybody is so overwhelmed by the hospitality. And so many of the people in the arena here, you know, were underprivileged anyway—this, this is working very well for them.
Why should we hear about body bags and death? It's not relevant. So why should I waste my beautiful mind on something like that?
I can't say it, but it rhymes with rich.

Lipstick excellent Graves' antidote

2008-01-11T05:31:00.000-08:00

Like the famous Graves' ophthalmopathy sufferer at left, I find that grooming makes up a little bit for the loss in pulchritude. I don't know what Babs uses, but I like Revlon's "cherries in the snow," myself.

I also did something I swore I would never do: got hair highlights. Pregnancy made my hair all one color and I have missed the highlights, but swore I would never hit the dye bottle. Now all that is out the window, and I have all these nice caramel streaks.

What next? I read someplace that Graves' patients do well except for two things: car accidents and divorces. (Note to self: practice having patience with everyone, and do a better job with your son than Babs did with hers.)

Waiting

2008-01-09T21:19:00.001-08:00

Here's a new photo of the eyes, just to show the mild lid lag when looking down. Sorry about displaying the nose hairs, but I guess all God's children got them.

The uneven closing, which started a week or so after the swelling, was what really bothered me. I associate noticing it with working a shift on the med-surge floor where I had nursing clinicals. Every time I looked down to write on my clipboard, the left lid seemed to sag shut, when in reality it was the right not closing as easily.

My eyes are hurting me worse, feeling sandy; I just bought another $36 worth of eyedrops since I blew through what I have. Tears Naturale and Liquigel work fine for the day, with a healthy squirt of LacriLube in at least the right eye at night. It does not always stay shut. LacriLube is a tube of petroleum jelly with mineral oil, and tends to have moisturized the face by morning. My husband sort of likes the sheen, for what that is worth.

The prednisone makes me feel sick, full and totally unwilling to eat anything. Can't wait till that's done.

Had a lab draw yesterday. I don't expect to be euthyroid yet, based on my crazy heart, which periodically rattles its cage with erratic beats.

Slogging through the snow

2008-01-04T16:05:00.000-08:00

My endocrinologist told me not to exercise while recovering from the mild hyperthyroidism (which still seems to be simmering, masked by the InnoPran). Well nuts to that, I finally said, and took my son up the hill in our back 40 for some sledding. I thought I would keel over from the sheer effort needed to walk through shin deep snow up that hill.

Then the sled wouldn't slide because the snow was all wrong, but that's another story.

Anyhow, here comes my husband, trucking along in snowshoes with a pole, zooming past my floundering figure. That is just so unlike us. He flounders, I zoom, ordinarily.

After he got back tot he house, he sent our son out to me with snowshoes. Well, that turned everything into cake. So maybe I'm not as debilitated as I feared . . . I just needed my own pair of snowshoes.

Update: 1-5-07: Last night, about 2 hours after I climbed that hill, my heart started beating like the drum solo in "Take Five." All kinds of crazy beats, probably PACs, or premature beats of the upper heart chambers. You know, that skipped beat and then the extra hard thud of the heart. With runs of 6 and 7, it got me a little nervous, although it calmed down during my sleep.

This has happened before, on days when I would walk the length of a parking lot and up and down the halls of my school (I like to park far away from doors). By the time I sat down and got my computer booted up, the PACs came on for a few hours, despite a full dose of beta blockers.

Now, how does that work? I know that exercise boosts secretion of thyroid hormones, but the heart beats erratically because the excess thyroid hormone causes more epinephrine and norepinephrine receptors to form, not because of a flood of thyroid hormone per se. I wonder what the mechanism of this reaction to exercise was—new beta adrenergic receptors formed within hours? A delay in blocking? Some other hitch in the pharmacokinetics of the propranolol?

Anyhow, it is not fun to have your heart keep you awake.

The dreaded pred

2008-01-04T15:38:00.001-08:00

For the past two days my double vision has gotten worse, and so has the tic and the lid retraction, so I refilled my prescription for a prednisone burst. 60 mg. for 4 days, then 40 for the next 10. It has some effect, which I only realized after going off of prednisone a couple weeks ago and getting more swelling. It also had the added (and unusual) side effect of wiping out my appetite.

But the thing bothering me is a narrowing field of vision that is not double. I still can do most work and read without moving my head too much, but if I look 40° up from the horizon, now I see double. One image slides below the other and goes cocked counterclockwise a bit. It used to be better—more toward the utter limits of my visual field.

I see that my clinical assignment for the coming semester is at the same hospital and with the same teacher as before. None of us were supposed to get the same hospital assignment, but I did, almost certainly because some sympathetic instructor wanted me to have a more manageable level of stress.

Let's just hope I don't scare the patients with a piercing, wall-eyed glare . . .

According to Mary Shomon's book, Living Well with Graves' Disease, only 38% of people with double vision have it go away on its own. Poop and double poop.

Is it hot in here, or is it just me?

2008-01-04T07:31:00.000-08:00

When in September the heart palpitations and hot flashes set in, I of course wondered if I weren't in for an early "change." And at 42, it was not unreasonable to expect menopause to be 8 or 9 years off and hot flashes to begin years earlier. My nursing class was orienting to a hospital for clinicals when I about melted in a series of hot flashes, and no one else felt too warm. I asked. It was then that I realized something was going on.

Another problem I noticed having was with fine motor coordination. Once, I was giving a PPD test, which is an injection placed delicately between layers of skin on the inner forearm. My patient was a rather nervous lady with schizophrenia, so I was trying to distract her from her distress at being poked with a needle while simultaneously sliding it in. Well. My hands shook so that the needle popped right back out of the skin and I had to do it twice. Poor lady. The same problem happened any time I had to flush an IV, replace a bandage, or anything requiring close work. The patient and sometimes the instructor would be looking, too, so it seemed even more of a problem. (Add sweat droplets rolling off the end of my nose to complete the picture)

I don't know how many times I said, "I don't know why my hands are shaking, because I don't feel nervous!" Once, a watchful spouse asked me if I were nervous as I irrigated and packed her husband's decubitus ulcer. I felt so embarrassed, because I really was not nervous; I had been dealing with wounds and bed patients in one way or another for over a decade.

During that time I also had to start my first IV. I was dreading it, but for some reason it went in slick as anything, thank goodness.

The full monty, January 2008

2008-01-03T16:14:00.000-08:00

This is just a front-on photo of the eyes. The right eye is the most troublesome, with a lid that closes hard, restricted gaze and lots of puffiness. It is especially bad today. The left eye seems mostly normal to me, except for redness, grittiness and puffiness.

Sometimes, at the end of the day, the lid seems to retract more and I get a bit of a stare. It seems dependent on stress, oddly enough.

I'm really hoping that a few months from now I won't be posting something drastically worse. I'm hoping that this is a repeat of 1993, if indeed I had GO back then.

Google-eyed all my life

2008-01-01T21:33:00.000-08:00

Just for comparison, here is a photo of myself at age 20. Think it's possible that a Hertel exophthalmometer would have measured 22–23, as it does now?

The big light-up

2007-12-27T20:04:00.000-08:00

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

2007-12-27T18:40:00.000-08:00

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

2007-12-27T18:10:00.000-08:00

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.

Euthyroid Graves' in 1993?

2007-12-26T18:32:00.001-08:00

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

2007-12-26T18:11:00.000-08:00

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

2007-12-26T17:34:00.000-08:00

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.