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.