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.

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'.

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

Eye exercises

That's me, doing my eye exercises.

Okay, not really. I made that about 8 years ago, just having fun with Image Ready. But doing eye exercises is something for Graves' ophthalmopathy suffers to ask their doctors about. It can extend the range of motion of eye muscles and some claim it speeds recovery—putting eyes through full range of motion in all the cardinal gazes. The drawback (and this is why you need to ask your doctor) is that looking up can increase intraocular pressure in Graves' ophthalmopathy patients. Any glaucoma suffer can attest to why this is not a Good Thing.

Why consider doing exercises? Because recovery from having double vision (diplopia) is not a sure thing.

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.

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.

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.

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.

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.

All in the family

The lady at left is my paternal grandmother, sometime in the late 1920s. If you look closely, you can see an asymmetry in her eyes and a goiter, although I think she's darn cute, and my grandfather certainly thought she was a dish!

When she was 17 and working as a hired girl, a guest at her employer's house, a physician, noticed a tremor as she served supper and did dishes, and then told her that she had a goiter. Untreated, she told me, her problem got worse after each baby, until she could hardly speak or function. She finally had a thyroidectomy sometime in the late 1940s. I remember the fine white necklace of a scar describing an arc above her collarbone.

Did she have Graves' disease? I'm not sure. But she just died, age 100, so it hardly held her back!

Thyroid trouble tends to run in families, and it makes no difference what form it takes. In their seventies, my mother and her sister have become hypothyroid. In another branch of the family, several members in all generations suffered from thyroid problems. Thyroid problems seem to have converged on me, genetically speaking.

Medications

Rather than just ablate my thyroid with radioactive iodine, I want to do a trial of Tapazole, possibly for a year and a half, along with alternative methods of dampening the thyroid and calming the immune system. Currently I take 20 mg of Tapazole (down from 40 mg for the first two weeks), 160 of propranolol (Innopran, an extended-release form), and alprazolam, for when the jitters get to be too much.

Graves' disease has turned me into a horrible grouch (actually, I was pretty grouchy to begin with), and my 5 -year-old deserves much better than that, so I take the alprazolam!

Initially, my regular physician started me on atenolol, a selective beta blocker that calms the heart but not the peripheral receptors, so I still felt like a big tuning fork—even my tongue had tremors. My endocrinologist gave me to understand that propranolol actually prevents some conversion of thyroxine (T4) to triiodothyronine (T3), and of course it makes the patient feel more relaxed by blocking the peripheral cholinergic receptors. I tried to wean down to 80 mg last week, but then on Christmas Day felt like a tuning fork again. I need to be more patient.