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.