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.