Another eye image

Here's a quick cam shot showing how the right eye stays open more when looking down. I hadn't realized quite how apparent it must be to others, although I realize that my appearance is not as shocking as that of some Graves' sufferers. Not shocking at all, in fact; I just look a little more haggard than usual. Still, I don't like it.

On the other hand, an acquaintance told me the other day that she has been diagnosed with a pituitary tumor that gives her an intractable migraine. No matter what she does, she rates her pain as constant and moderate. And she goes to school, works and raises several children, one of them quite ill.

So, then, you may offer me a little cheese to go with my whine.

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.

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.

Out of the mouth of a Graves' patient

Speaking of Babs, what a crusty old lady. And I identify with her 100%, I'm afraid. I remember not believing my eyes when I read that, one Mother's Day back in the '90s, when an admirer asked her if he could give her a Mother's Day card, she ripped into him and told him, "Of course not. I'm not your mother. Give a card to your own mother."

Now I understand. Graves' disease empties one of tolerance for silliness.

So, in honor of that old crab, I am compiling a list of my favorite Barbara Bushisms. I don't agree with her politics, but I have to hand it to her, putting up with all that nonsense from the Great Unwashed. And for staying married and not having car accidents, either.

Oh, wait. She has a chauffeur. Smedley or Rochester, or something like that.

Anyhow, tell it as it is, Babs! 'Cause it's late, you're tired, you're shaky, cross-eyed and sweating bullets, and who really gives a shit, right?

• Clinton lied. A man might forget where he parks or where he lives, but he never forgets oral sex, no matter how bad it is.
• I just don't like having an almost 60-year-old white-haired son.
• I married the first man I ever kissed. When I tell this to my children, they just about throw up.
• It's been different. I started driving again. I started cooking again. My driving's better than my cooking.
• My son, George, has been a bad, bad boy! Right, George?
• One thing I can say about George... he may not be able to keep a job, but he's not boring.
• What I'm hearing, which is sort of scary, is they all want to stay in Texas. Everybody is so overwhelmed by the hospitality. And so many of the people in the arena here, you know, were underprivileged anyway—this, this is working very well for them.
• Why should we hear about body bags and death? It's not relevant. So why should I waste my beautiful mind on something like that?
  
• I can't say it, but it rhymes with rich.

Lipstick excellent Graves' antidote

Like the famous Graves' ophthalmopathy sufferer at left, I find that grooming makes up a little bit for the loss in pulchritude. I don't know what Babs uses, but I like Revlon's "cherries in the snow," myself.

I also did something I swore I would never do: got hair highlights. Pregnancy made my hair all one color and I have missed the highlights, but swore I would never hit the dye bottle. Now all that is out the window, and I have all these nice caramel streaks.

What next? I read someplace that Graves' patients do well except for two things: car accidents and divorces. (Note to self: practice having patience with everyone, and do a better job with your son than Babs did with hers.)

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.

The dreaded pred

For the past two days my double vision has gotten worse, and so has the tic and the lid retraction, so I refilled my prescription for a prednisone burst. 60 mg. for 4 days, then 40 for the next 10. It has some effect, which I only realized after going off of prednisone a couple weeks ago and getting more swelling. It also had the added (and unusual) side effect of wiping out my appetite.

But the thing bothering me is a narrowing field of vision that is not double. I still can do most work and read without moving my head too much, but if I look 40° up from the horizon, now I see double. One image slides below the other and goes cocked counterclockwise a bit. It used to be better—more toward the utter limits of my visual field.

I see that my clinical assignment for the coming semester is at the same hospital and with the same teacher as before. None of us were supposed to get the same hospital assignment, but I did, almost certainly because some sympathetic instructor wanted me to have a more manageable level of stress.

Let's just hope I don't scare the patients with a piercing, wall-eyed glare . . .

According to Mary Shomon's book, Living Well with Graves' Disease, only 38% of people with double vision have it go away on its own. Poop and double poop.

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.

The full monty, January 2008

This is just a front-on photo of the eyes. The right eye is the most troublesome, with a lid that closes hard, restricted gaze and lots of puffiness. It is especially bad today. The left eye seems mostly normal to me, except for redness, grittiness and puffiness.

Sometimes, at the end of the day, the lid seems to retract more and I get a bit of a stare. It seems dependent on stress, oddly enough.

I'm really hoping that a few months from now I won't be posting something drastically worse. I'm hoping that this is a repeat of 1993, if indeed I had GO back then.

Google-eyed all my life

Just for comparison, here is a photo of myself at age 20. Think it's possible that a Hertel exophthalmometer would have measured 22–23, as it does now?