Introduction

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"

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

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

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?

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?

"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

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

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

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

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

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:

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

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

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.

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. :-(