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.