March labs

So TSH went from below 0.05 -> 0.17 -> 3.81 -> 3.28

Free T4 went from 1.3 -> 0.7 -> 0.6 -> 0.7

Free T3 went from 5.2 to 2.5 -> 2.4 -> 2.8

So my thyroid hormones went back up a hair after the 9-day hiatus and a switch to PTU. I just decided to take 50 mg just once a day because my hormones look so close to swinging hypo. A little exercise, now that nursing clinicals have ended (mostly), should help boost the metabolism.

The reason I fight going hypothyroid is that doing so can exacerbate the eyes.

I just saw my regular practitioner today and she was kind enough to give me my labs. The endo's office hangs onto them until Himself can dictate a letter to me.

In January my liver function tests were quite abnormal--which the endo never bothered to tell me. Now they are fine—probably because I am no longer on the prednisone, which really did make me feel bloated and ill. It can make LFTs look funny. My creatinine was also off kilter, which the endo never mentioned. I knew it, though, and was hoping it was just a fluke.

It looks as though I am going to have to assert myself with this endocrinologist, who seems to guard information and also seems too busy to really read my chart before seeing me. Since his clinic collects $300 for each visit, I'll have to make him work harder.

Twice now, he has recommended RAI—the radioactive iodine procedure that essentially kills the thyroid off (and creates a slightly higher cancer risk). It's a pretty backward practice, which only Americans seem to prefer. everyone else in the world does what I am doing, with drugs to reestablish a euthyroid state.

Visit to the eye doctor, labs

Here's the current state of my "thyroid stare." The lid retraction doesn't show, although I have taken to taping the eye shut at night.

I just visited the ophthalmologist today, and he said things are fair to middling: corneas not too dry, proptosis steady at 22 mm. for each eye, intraocular pressure "okay,"double vision no worse than before, and most importantly, vision and optic nerves good. I asked him about seeing slightly less red in one eye. He said that it should not be concerning unless it is a definite bleaching out of the color red in the central--not peripheral--vision field. I don't think the difference is striking enough to pursue, since I am not sure if it is new or something I always had.

I go back in June for a check, with visual field testing, as I had last time. The doctor hopes that by October my disease will have burnt itself out and the swelling will have subsided. He holds out little hope for resolution of the proptosis (eye bulge) but nobody thinks my eyes look any bulgier than they always were, so no big deal. I hate the swelling the most, since it makes me look old and tired.

I keep forgetting to tell him and my endocrinologist about my theory of having had euthyroid GO in 1993-94. Doubt it matters.

I am cutting back on PTU and hoping for the best, since even 10 mg of Tapazole had me on the verge of hypothyroidism--my free T3 and free T4 had been on the threshold of going under normal limits. Who knows where they are now, after the med holiday and switch. Labs drwan tomorrow, and maybe I can pry the values out of the endo's nurse this week.

Scleral injection

Here you see my swollen eye and in the corner a good example of "scleral injection," which is a fancy way of saying bloodshot eyes. There is a tangle of veins and a beefy red patch where the affected eye muscle inserts.

Eyes are the same as ever, and a little worse, since I ate a lot of nori this weekend, which contains a lot of iodine. Oh well.

I keep telling myself I can concentrate on really getting well once nursing school is over.

Good-bye Tapazole, hello PTU

I was off Tapazole for 9 days after I got some sores in my mouth. Labs the same day showed the white cell count to be within normal limits, which is good, because mouth sores on this drug can point to "agranulocytosis," a type of low white count that can be fatal. I expected to be put back on Tapazole or switched to propylthiouracil (PTU) on visiting the doctor again.

And so last Wednesday I started Tapazole again—and promptly got a mouth ulcer two days later. So I looked up my total white blood cell count (WBC) on my clinic's web site, just to see how "normal" it had been.

Well, the latest WBC had been within normal limits, but it had been down to 5 thousand, when my last three WBC had averaged 9 thousand. I'm not sure the busy endo appreciated that, since he told me he had been known to stop people on Tapazole with only a "slight drop" in their WBC. So I stopped the Tapazole and called again today.

Now the plan is to switch to PTU 50 mg PO bid, and have a lab drawn as planned on 3-11. 100 mg a day is a rather low maintenance dose. I see that one common side effect is whitening of the hair. Cool. Not.

Who knows if this was just a run-of-the-mill canker sore, or what, but with the potential for disaster so high, nobody, including me, wants to take chances. The fact that I almost never get canker sores and then got a third one within 2 days of resuming Tapazole is a little more suggestive of a true problem.

The rather unsubtle moral of this story is to be your own best advocate, especially with someone like an endocrinologist, a type of specialist in short supply and great demand. Mine was too busy to spot a trend in my WBC that may have been significant.

Back on Tap

Today was my second visit to the endocrinologist. I had been off Tapazole for a little over a week because of concerns about a potential side effect, but since my labs were all normal. I'm back on—at only 5 mg per day. If all goes well, I'll be on it for about 18 months.

My TSI antibody levels at 24% are not exceedingly high; they are average. The antibody level—and the mildness of the former hyperthyroidism—bodes well for a remission, he says. He thinks my eyes look better, although I say the lid retraction on the right eye is worse than in December. The degree of proptosis has stayed the same (20 mm for both eyes this time; 19 and 20 last time. The ophthalmologist got 22 and 23).

He had a resident along and let her feel my goiter. He also pointed out to her how taut my eyeballs feel.

The scale was unkind, showing a gain of 7 pounds since early December, which is a "good" sign when it comes to most Graves' patients. As for me, I am cleared to exercise again, with a caveat to watch my heart rate. I might get to go off the propranolol if I tolerate exercise poorly while on it.

Crappy med. I don't miss the heart palpitations, but everything else about being on propranolol stinks, in my opinion.

So, back on Tapazole and labs in another month. I may only need to check with the endo every 4 months or so. I asked him again about my low insulin-like growth factor, and he said it might have just been because I was sick. A reaction similar to how ovulation is sometimes suspended during periods of illness.

Sleepless eye

Here's a photo of my pumpkin and me. His eyes are just fine (and a nice chocolate color to boot). My right eye is as swollen as ever. My husband noticed me sleeping with it open for the first time last night, as I sat there zonked out on the davenport (it's clinical time in nursing school, so I get very little sleep midweek). He could see the pupil, he said.

I have noticed that if I don't put the Lacrilube goo in before bed, the eye bothers me more the next day, but so far, Lacrilube without taping seems to do the trick.

I won't tape the eye shut unless the Lacrilube stops working. The idea of taping my damn eyelid shut just takes the cake. Won't do it unless I have to.

Labs, February 2008

Am off Tapazole for a week until a scheduled appointment with the endocrinologist. As of last Monday, though, my labs—liver, blood count and thyroid—were all normal. TSH is now up to 3.1. Free T4 is 0.6. Free T3 is 2.4—so everything is low-normal. The mouth sores resolved, too.

The fly in the ointment is a slightly worsening eye. Still hoping to avoid extensive double vision. I find myself swiveling my head more to look at things above my head and to the sides. Happily, I can look down and to the left without any problem.