"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.

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.

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.

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.

Dear Ms. Shrdlu:

Got a letter from the endocrinologist telling me what I already knew about my lab results: they are good and my dose of PTU should remain the same.

I have had two decades' worth of trouble with sex hormones as well, and asked him to draw some labs on those, too. It amounts to very atypical PCOS that doesn't seem to come from insulin resistance, is not helped by metformin and never affected my fertility, anyhow. But it is annoying. I'm pleased to see that while testosterone and androstenedione are elevated, they look a lot better than 10 years ago.

The official boilerplate doctor's response to my shin and painful fingers: "So?"

Posting a new picture, with son, mugging at the camera. As you can see, the eyes are not greatly out of whack. They trouble me much less than last winter and spring, although the puffiness has not gone away and the lid lag varies.

September labs

TSH: 0.92
Free T3: 3.1
Free T4: 0.6

So things are pretty stable on ~60 mg propylthiouracil every day.

Hayfever last week has triggered some eye symptoms. Got an "eye headache" the other day. Any challenge to the immune system seems to goad the Graves'.

Your numbers are good, ergo you also feel good

Had my quarterly visit to the endo again, with mixed results. Labs look okay, if a hair lower than optimal, with TSH climbing slowly. That much is good, and I would like the FT3 and FT4 to be a few tenths higher, so I felt a bit better.

The bad part is that I may be showing signs of pretibial myxedema (the swollen shins—luckily no red discoloration so far), and my distal finger joints still hurt, and more of them. I think it's thyroid-related because the pain disappeared when I was crawling toward hypothyroidism. "Could be the beginnings of acropachy," the endo said. Acropachy is the clubbed fingers that only a fraction of a percentage of Graves' patients get. So far they look okay, but they hurt.

Can't say I'm happy to be drawing the short straw and showing moderate eye disease and the shins and fingers stuff. Why couldn't this course be mild, as it was the first time around, in 1993? (and Dr. Endo agrees that I most likely had GO back then, even though I had no signs of thyrotoxicosis)

I mentioned the labile moods and impatience to the endo and he knows nothing about the long-term mental and emotional sequelae of Graves'. I'm supposed to be sweetness and light now that the thyroid has been drugged into submission. I'd send him a few abstracts on the long-term emotional impacts of Graves' from NIH . . . if I thought he'd have time to read them.

All in all I came away with the impression that an endo is good for controlling the thyroid, but nearly useless for the autoimmune and psych manifestations. Have to be my own advocate, I guess. Well, that's nothing new.

Labs, with July in bold:

TSH went from below 0.05 -> 0.17 -> 3.81 -> 3.28 -> 1.87 -> 0.47 -> 0.89

Free T4 went from 1.3 -> 0.7 -> 0.6 -> 0.7 -> 0.8 -> 0.8 -> 0.8

Free T3 went from 5.2 to 2.5 -> 2.4 -> 2.8 -> 3.0 -> 3.2 -> 2.6

June labs

I have been feeling irritable and achy and having heart palpitations, so I increased PTU from 50 mg. daily to 75 mg (50 in AM and 25 in PM) daily, asked for labs this month.

After a week on the increased dosage, I feel better, although the sore joints persist.

Here's the hormonal progression, with the latest figure in bold:

TSH went from below 0.05 -> 0.17 -> 3.81 -> 3.28 -> 1.87 -> 0.47

Free T4 went from 1.3 -> 0.7 -> 0.6 -> 0.7 -> 0.8 -> 0.8

Free T3 went from 5.2 to 2.5 -> 2.4 -> 2.8 -> 3.0 -> 3.2

So everything is normal, although I suspect that I was slipping into a less-than-optimal zone, based on the way I felt. The physician's advice was to continue the current PTU dosage.

While there is a wide range of "normal" TSH, most people seem to do best in the 1–2 range, and indeed, I felt best there, too.

As an aside, I'm curious to see what my TSH was historically, the times I'd had it checked in my 20s and 30s for OB checkups and other reasons. I suspect that I have tended to be hypothyroid through the years.

May eyeopener

Greetings from the month of May. This is the first month I have not had labs drawn, and unless I become very symptomatic, I will not have them drawn until mid-July.

As you can see by the photo at left, my right eye still has a startled appearance. It's not too bothersome aside from having to scrape tape adhesive off my eyelid and cheek in the morning. I am worried that the lid retraction and puffiness will not resolve on their own. They might, they might not. It might take minor surgery to get the lid to close more on its own.

This marks the seventh month of active eye disease. the eyes will be fine for weeks or even improved, and then I'll have a day of swelling and eye pain and afterward will have reached a new level of lid retraction. I wonder if the overmedication with ATDs and low FT3 and FT4 are responsible for the exacerbations.

Other symptoms are the occasional heart palpitation and some weird twitches, mostly of the right eye and lips. I have more patience than I did (which is not saying much, for those who know me), and no more bouts of "Graves' rage"—the hormone-fueled disinhibition that makes Graves' patients difficult to live with.

And hair—it's still falling out, though not quite by the handful. A fine fuzz is growing in, too. I'm off beta blockers entirely, now, so if they had any effect on hair loss, that should have passed by now. Here's to regaining my former crown of glory.

I also have the chance to rest and de-stress for a time, since I've completed nursing school. Now to take the boards, relax a while, and then go off to the salt mines.

April labs: hooray!

I just said that I was hoping for a TSH between one and two, and free T4 and free T3 in mid-range, away from the subclinical hyopthyroid realm. Well the endo's nurse just called and that has happened, although free T4 is still a bit low. Here is the progression, with latest results in bold:

TSH went from below 0.05 -> 0.17 -> 3.81 -> 3.28 -> 1.87

Free T4 went from 1.3 -> 0.7 -> 0.6 -> 0.7 -> 0.8

Free T3 went from 5.2 to 2.5 -> 2.4 -> 2.8 -> 3.0

Last month's score was after switching to PTU at 50 mg. twice a day.

This month's score follows taking PTU at 50 mg. once a day.

I don't have a lab draw again until mid-July, along with a visit to the endo. I am weaning off the propranolol and stepping up the exercise. Also working on eliminating bad, processed food from my diet, to heal the immune system. Between that and a summer spent working at home, gardening, painting, etc., I hope to put active disease behind me.

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.

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.

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.

January 8 labs

Well, now the labs suggest why I have begun to feel good the last week: they're back in normal range, except for TSH, which will take some time to come up to the 1–2 range desired. I don't actually know what the values are, as the doctor's office forgot to enclose them, but normal free T3 and T4, as well as AST, ALT, CBC and creatinine sound good to me.

"Continue Tapazole at your current dosage" the letter instructed.

I need to be careful not to go hypothyroid, lest the eyes get worse.

Another problem: my heart still skips and does nutty stuff. The heart palpitations must have kicked in at some level that constituted a subclinical problem, and which has not yet been resolved.

Eyes are as annoying as ever. I read someplace that they will continue to bother me for as long as the TSH receptor antibodies are active, and I will continue to be somewhat moody during that time, too. Quick—where's an anti-antibody pill?

Update 1-19-08: The labs came: TSH now 0.17 uIU/mL (lower limit 0.3). Free T4: 0.7 ng/dL (normal range 0.6–1.2). Free T3: 2.5 pg/mL (range: 2.1–4.1).

So TSH went from below 0.05 to 0.17
Free T4 went from 1.3 to 0.7
Free T3 went from 5.2 to 2.5

Antibodies, from November:
TPO: normal, at 1 IU/mL (0–11 normal range)
TRAb: 24% (>= 16% is considered positive)

The bummer is a creatinine a hair high and an estimated glomerular filtration rate (eGFR) a hair low, at 52. It's never been off before, so hopefully this represents a temporary kick to the kidneys from all the prescribed drugs, and not a real problem with incipient kidney failure.

Second update: The reduced eGFR probably was related to the muscle wasting going on (hard to climb stairs) and maybe even to reduced kidney perfusion from the beta blocker I was on. I need two more poopy eGFRs before I need to worry about "weak kiddleys."

Antibodies, paternalism, and feeling good again

Call me a control freak (you wouldn't be far off), but I want to know my damn labs! They were taken a week ago and I have heard nothing. Nothing. Last time, it took 2 weeks and a dictated letter from the endocrinologist. That's nice that he wants to put his spin on things, but I know how to interpret my own labs, thank you. I will have to ask to be copied next time.

And yes, I called my clinic after hours and tried to wheedle the values out of the RN on call, but she would not do it.

On the other hand, after months of poopiness, I have felt like a million bucks for the past two days. Amazing! I can concentrate on a task for more than a few seconds again! And yet another reason why I want to know my labs—I don't want to plunge into hypothyroidism—for one thing, it can make the eyes worse. The last semester of nursing classes start next week, too, and I need to be on my game for that.

I see the endo in a few weeks and will ask him to humor me and just have the raw labs made available to me.

Then there are antibodies. Just browsing this weekend I was reminded that people who lack TPO (the peroxidase antibodies) but have high levels of TSH stimulating antibodies (me, that is) have a higher than usual instance of eye problems. I need to find ways to lower the antibodies a.s.a.p. Diet and stress reduction seem a good place to start.

Almost done with the prednisone. It does not seem to help lid puffiness, nor does it decrease the diplopia, but it does curb the aching eyes.

Waiting

Here's a new photo of the eyes, just to show the mild lid lag when looking down. Sorry about displaying the nose hairs, but I guess all God's children got them.

The uneven closing, which started a week or so after the swelling, was what really bothered me. I associate noticing it with working a shift on the med-surge floor where I had nursing clinicals. Every time I looked down to write on my clipboard, the left lid seemed to sag shut, when in reality it was the right not closing as easily.

My eyes are hurting me worse, feeling sandy; I just bought another $36 worth of eyedrops since I blew through what I have. Tears Naturale and Liquigel work fine for the day, with a healthy squirt of LacriLube in at least the right eye at night. It does not always stay shut. LacriLube is a tube of petroleum jelly with mineral oil, and tends to have moisturized the face by morning. My husband sort of likes the sheen, for what that is worth.

The prednisone makes me feel sick, full and totally unwilling to eat anything. Can't wait till that's done.

Had a lab draw yesterday. I don't expect to be euthyroid yet, based on my crazy heart, which periodically rattles its cage with erratic beats.