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.

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.

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'.

Acropachy and pretibial myxedema

Wednesday my endocrinologist suggested that I may have some form of dermopathy (skin abnormality) and perhaps the beginnings of pretibial myxedema and acropachy.

Pretibial myxedema is a deposition of a mucinous substance in the skin of the shins, basically, thanks (or no thanks) to autoimmune attacks upon susceptible tissue there. It takes all kinds of forms, including one that looks like elephantiasis. The most common form in one study appeared to be nonpitting edema. Nonpitting edema is also known as "brawny" edema, and might describe the slight swelling of my own shins, especially the left one.

Acropachy describes clubbing of the fingers (and sometimes toes), as well as skin and joint changes in the fingers. X-rays will show fuzzy looking bony growths of the fingers and sometimes other long bones. Sometimes the fingers don't club at all . . . they just hurt.

What my endo found in addition to the puffy shins were overly fleshy hands. It led him, last December, to test me for excess growth hormone. He suspected acromegaly, though what he found was a deficiency of growth hormone, which may or may not be related to the thyroid stuff.

Now he thinks that the fleshy palms and sore distal finger joints may point to acropachy.

I read a little more about it and found out that most acropachy doesn't hurt, but when it does, the pain is frequently intermittent (Check), and in the distal joints (Check). Clubbing of the fingernails may not occur, or then again, the whole hands may be affected by swelling (Check).

Pretibial myxedema most commonly manifests itself as the brawny edema, thought it may be discolored or wartyin texture. Both it and acropachy are most common in people currently smoking, and in people with extremely high levels of TSI antibodies (My antibodies were "moderate"), and both PTM and acropachy represent the most extreme manifestations of Graves' disease.

Lucky me! The only thing that cheers me up is that the studies show that the joint pain disappears, and in a significant proportion of cases, the PTM and the acropachy improve or remit, given time.

Eye check-up today

Today Dr. P. took a look at my eyes and pronounced them "fairly stable." From my point of view, three things have changed since I saw him last March:

1. The right eyelid is a little more retracted and I consistently tape the eye shut at night.
2. I need to use far fewer vials of artificial tears.
3. I only have isolated days of eye pressure and orbital pain. "Hiccoughs" of pain.
   

Everything else is the same: the swelling, the injection, the double vision while gazing up and to the right, too. My proptosis measures the same as in December: 22 mm. in the left eye and 23 in the right. March's measurement was 22/22, which is within the margin of error with the Hertel instrument.

The ophthalmologist thinks I had this before, in a less severe form, given my history of puffy gritty eyes lasting 3 or 4 months, back in 1993. He also thinks that while this bout is worse, I will not progress to the Marty Feldman stage, will not lose vision and will not need orbital recession surgery. If time does not lower my right eyelid, I may need to see a plastic surgeon about advancing it so I can stop taping it shut at night and stop looking like Bill the dadburned Cat, but that will take another 24 months or so, to make sure that my eyes are done.

Visual field testing was fine, although staring at that white, featureless background was kind of psychedelic after a while. I started seeing great waves of rose color in my left eye, which messed up my perception of some of the dimmer flashes of light. So the test said "Marginal" rather than "Within normal limits," as it had for the other eye. But it also said, "Low test reliability." Eye presure is good, optic nerves look good, etc., etc.

So the relative stability of signs and symptoms uggest that I am in what they call the plateau phase of GO right now. It's a time during which symptoms ease up a bit or at least don't get worse, with some blips of activity. Up next is a resolution phase, in which symptoms go away or improve a bit.

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

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.

Telogen effluvium following subclinical hypothyroidism

Telogen effluvium is the name for the periodic heavy shedding that hair goes through—usually in response to some physical stress: surgery, fever, hormonal fluctuation. Hair from all over the scalp falls out, anywhere from one to six months following the stressor. And telogen effluvium is happening to me right now.

My hair was already looking a little ratty from all that I had lost last summer and fall. Hyperthyroidism tends to make hair fall out and thin its caliber (make it finer). Then anti-thyroid meds such as the ones I took tend to worsen the problem, most likely because they induce hypothyroidism. In my case, I was on the verge of overt hypothyroidism shortly after beginning Tapazole. (Here's hoping the trend is still reversing).

It is still looking ratty as I pull it out by the drain-clogging handful. I'm lucky to have a lot of hair to begin with, with lots of body, but the hair loss is still fairly evident.

The bright side of telogen effluvium is that by the time one notices it, new hair is growing in, pushing out the old. The scalp is soon covered with prickles and a new fringe of virgin hair is growing in. I managed to miss the hair growing back in the last time this happened to me, probably because I was still toxic then, metabolism working overtime.

Other "benefits" of subtle hypothyroidism: Nails become thickened, jowls become heavier, eyes become puffier and weight gets put on. Up 7 pounds since December. And my mind has become sluggish; processing speed is slower and the end result of all that labor is usually not a pearl of wisdom.

If I could do this over again, I would have really put the brakes on the ATDs a month after treatment began, because letting myself get so close to hypothyroidism did me no favors whatsoever.

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.

Off Tapazole—argh!

Brushing my teeth this AM I noticed that a swatch of gum along my molar was eroded and bleeding, and so was a spot by a canine tooth. Mouth sores are something to watch out for on Tapazole or any antithyroid med, so I called the doc's office to report it. They just called back to tell me to discontinue the med, and the endo's office would contact me tomorrow about doing something else. I might wind up just guzzling soy milk and broccoli, or on propiothiouracil (PTU), which is related to Tapazole but in some ways safer.

And in some ways plus dangereux.

The most common cause of mouth sores is a low white blood count. Other causes are a little more dangerous, but also quite rare. The dose I was on—5 mg bid—should not have caused anything because it was pretty low. We'll see, I guess, when the blood count comes in.

I feel good otherwise (just loaded down with work). Something tells me my thyroid levels are looking very good, but now that could reverse, depending on the drug holiday I have to have.

4 days without palpitations

I cut my propranolol (InnoPran—timed release) in half, gradually, and am now on 80 mg rather than 160. Haven't felt a palpitation since cutting the dosage. My heart rate is back up to about 60, on average.

I wonder if I could begin to cut it out entirely. It did help the nervousness. Perhaps the last semester of nursing class is not the time to throw such a crutch away.

The itsy bitsy appetite . . .

My appetite for food is gone. In fact, I have some symptoms of gastroparesis (sluggish stomach peristalsis) . I woke up four days ago and disgorged food I had eaten 20 hours before, and ever since, more than a few bites of food fill me up. More than that and it sits like a medicine ball in my stomach for the next 24 hours.

Diabetes is the main cause of this. But it is usually longstanding diabetes, plus I don't have it in the first place.

Hypothyroidism is another cause, and that's what worries me, so I've dropped the Tapazole to 10 mg per day, in two doses. And I'm following my appetite and sticking to light stuff. Oatmeal, Jell-O, whatever. Tonight we're having roast chicken, mashed potatoes and gravy, and if I am not an idiot today, I will measure my portions in molecules.

(Apropos de rien, my husband, whose name is Michael, once got a piece of junk mail addressed to "Molecule A. P_____." How deflating is that? Being called a molecule! A real `WTF' moment.)

Will start in with gentle swimming and walking again, too. I'll bring my little boy, who could use some mid-winter exercise.

Calling my current digestive problem "gastroparesis" is probably overkill, since that is a serious problem, but the fact remains, my digestive system has largely rolled over and gone to sleep. It did that when I was pregnant, too, with the same sort of results . . . yakking Doritos at 3 a.m.

Eyes: ouch. Prednisone isn't good for much in my case, but it does keep the aching orbits at bay.

My nursing instructors have asked after my health, including my emotional stability. I'll be fine. Even in the thick of my tremors and anxiety, my clinical instructor rated one of my main strentgths as being confident and unflappable, and establishing great rapport with my patients. The trick, apparently, is stoicism. My confident façade crumbled only in matters of manual dexterity--and now I have that back again.

Adding another picture . . . the discrepancy in size of left and right eye is obvious if I do not have alert expression on my face. I am so ready for the quiescent phase to kick in. Maybe the eye headaches will stop, then.

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.

Slogging through the snow

My endocrinologist told me not to exercise while recovering from the mild hyperthyroidism (which still seems to be simmering, masked by the InnoPran). Well nuts to that, I finally said, and took my son up the hill in our back 40 for some sledding. I thought I would keel over from the sheer effort needed to walk through shin deep snow up that hill.

Then the sled wouldn't slide because the snow was all wrong, but that's another story.

Anyhow, here comes my husband, trucking along in snowshoes with a pole, zooming past my floundering figure. That is just so unlike us. He flounders, I zoom, ordinarily.

After he got back tot he house, he sent our son out to me with snowshoes. Well, that turned everything into cake. So maybe I'm not as debilitated as I feared . . . I just needed my own pair of snowshoes.

Update: 1-5-07: Last night, about 2 hours after I climbed that hill, my heart started beating like the drum solo in "Take Five." All kinds of crazy beats, probably PACs, or premature beats of the upper heart chambers. You know, that skipped beat and then the extra hard thud of the heart. With runs of 6 and 7, it got me a little nervous, although it calmed down during my sleep.

This has happened before, on days when I would walk the length of a parking lot and up and down the halls of my school (I like to park far away from doors). By the time I sat down and got my computer booted up, the PACs came on for a few hours, despite a full dose of beta blockers.

Now, how does that work? I know that exercise boosts secretion of thyroid hormones, but the heart beats erratically because the excess thyroid hormone causes more epinephrine and norepinephrine receptors to form, not because of a flood of thyroid hormone per se. I wonder what the mechanism of this reaction to exercise was—new beta adrenergic receptors formed within hours? A delay in blocking? Some other hitch in the pharmacokinetics of the propranolol?

Anyhow, it is not fun to have your heart keep you awake.

Is it hot in here, or is it just me?

When in September the heart palpitations and hot flashes set in, I of course wondered if I weren't in for an early "change." And at 42, it was not unreasonable to expect menopause to be 8 or 9 years off and hot flashes to begin years earlier. My nursing class was orienting to a hospital for clinicals when I about melted in a series of hot flashes, and no one else felt too warm. I asked. It was then that I realized something was going on.

Another problem I noticed having was with fine motor coordination. Once, I was giving a PPD test, which is an injection placed delicately between layers of skin on the inner forearm. My patient was a rather nervous lady with schizophrenia, so I was trying to distract her from her distress at being poked with a needle while simultaneously sliding it in. Well. My hands shook so that the needle popped right back out of the skin and I had to do it twice. Poor lady. The same problem happened any time I had to flush an IV, replace a bandage, or anything requiring close work. The patient and sometimes the instructor would be looking, too, so it seemed even more of a problem. (Add sweat droplets rolling off the end of my nose to complete the picture)

I don't know how many times I said, "I don't know why my hands are shaking, because I don't feel nervous!" Once, a watchful spouse asked me if I were nervous as I irrigated and packed her husband's decubitus ulcer. I felt so embarrassed, because I really was not nervous; I had been dealing with wounds and bed patients in one way or another for over a decade.

During that time I also had to start my first IV. I was dreading it, but for some reason it went in slick as anything, thank goodness.