You're flushed, sweaty, shaky, and jump at the sound of a falling chad. Eyes red and bulging, you yell at Glen Beck on the flat screen. And those nihilistic Republican governors raise your blood pressure and cause your heart to palpitate. The very mention of Michelle Bachman in Iowa causes you to eat a hunk of pie, then another, while cursing everyone from John Birch to Ronald Reagan and the asses they rode in on.
Except you keep losing weight in spite of all that pie, and that lump in your throat won't go away. Pretty soon your legs are so weak, you have to pull yourself up the stairs, and your friends start asking you, "Are you sick?"
Is it Tea Party Derangement Syndrome, or is it Graves' Disease? Graves' disease, a form of autoimmune hyperthyroidism, might explain a lot. It made Marty Feldman look funny, George H. W. Bush incoherent, and Bar a bitch. What follows is a primer on Graves' Disease, and a caveat for Americans who seek treatment for it here in the United States.
This story is also a personal one, since I am in persistent remission from Graves' Disease
If the pituitary is the "master" gland, then the thyroid is at least a strongman
It's that pink butterfly you see in the neck at right. Every body system, right down to cellular metabolism, is affected by thyroid functioning, so it is one of the first things physicians check when a lot of problems seem to be going on, from depression to heart trouble.
The thyroid produces two major hormones triiodothyronine (T3), and thyroxine (T4), and the pituitary governs the rate of secretion through a negative feedback loop. Thyroid running too low, and the brain pulses out more Thyroid Stimulating Hormone, or TSH. Running too fast? Then the brain slows or stops its secretion of TSH. The lab range for TSH is currently 0.3 to 3 μU/ml, with a real-life range of 1-2 μU/ml being more probable in healthy people.
In Graves' there are antithyroid antibodies that con the thyroid into pumping out abnormally high levels of T3 and T4, completely independent of the pituitary, which gives up making TSH entirely.
But in Graves' disease, the thyroid gets all the accolades when it shouldn't. Those same antibodies quite often attack areas of the skin, bones and, most famously, the eye sockets. More about that below.
Who Graves' disease hits
Like all
autoimmune diseases, Graves' strikes women five times more than it does men. The typical patient is likely to be a woman entering middle age. She may have recently given birth, and she has a whole raft of autoimmune diseases in her family. An aunt has MS. A grandmother might have had Hashimoto's Thyroiditis. A brother might have psoriasis. She herself might have plenty of allergies. If she is older, she might have a less obvious form of Graves', labeled as "apathetic" form.
My story, part I
Graves' disease is a forever diagnosis, but it does go into remission. When I was 28 and living in Mexico, I began to drop weight rapidly, and although it was hot, I sweat so much that I depleted my potassium, and had a few days where I did have to pull myself up stairs. Potassium and Pedialyte fixed me up for a while, then my eyes became puffy and gritty. Since this was urban Mexico, I attributed the eye symptoms to a cold, or reaction to the pollution. But those eyes stayed swollen for 3 months after I returned home.
Things gradually got better, except for a tender throat. A friend I had not seen in a long time did say, "I remember that your eyes were always so big, but I didn't remember them protruding like that." I thought very little of it, and indeed did not know I had had any disorder until 2007.
Fast forward to 2007, when a whole bunch of things declared themselves: a heart murmur, high systolic blood pressure, joint aches, tremors, sweatiness and hot flashes. And as I worked my way through nursing school, I became very distractible, cranky and impulsive. While I do have ADHD, this was on a whole other order of magnitude. I felt like a squirrel on angel dust. Imagine a sweaty, crabby squirrel on angel dust starting your IV!
Then . . . my right eye swelled, and they both began to bulge and water. Stairs became a challenge again. To be more concise, I had the Graves' back at age 42, most likely triggered again by a recent pregnancy.
I asked my primary doctor to test my thyroid, and we got the answer: no detectable TSH in my blood, high T3 and T4, and the presence of a moderate load of anti-thyroid antibodies. Couple that with bulging eyes, and it was clearly Graves'.
Signs and symptoms
I mentioned quite a few signs and symptoms above. Here's a list from Mayo Clinic:
Common:
- Anxiety
- Irritability
- Difficulty sleeping
- Fatigue
- A rapid or irregular heartbeat
- A fine tremor of your hands or fingers
- An increase in perspiration
- Sensitivity to heat
- Weight loss, despite normal food intake
- Brittle hair
- Enlargement of your thyroid gland (goiter)
- Change in menstrual cycles
- Frequent bowel movements
Less common:
- Excess tearing and sensation of grit or sand in either or both eyes
- Reddened or inflamed eyes
- Widening of the space between your eyelids
- Swelling of the lids and tissues around the eyes
- Light sensitivity
- Ulcers on the cornea
- Double vision
- Limited eye movements
- Blurred or reduced vision
And a few very rare signs that I'll toss in here:
- Ragged nails (onycholysis)
- Clubbed finger or toe tips
- Swollen reddened, thickened shins and tops of feet
- fluffy-looking excrescences of bone at the ends of joints.
- Assorted skin abnormalities
Graves' ophthalmopathy
The eye symptoms happen mildly in just about everybody with Graves' but some unlucky sufferers—especially smokers—get disfigured by their eyes, which bulge, fail to close at night, redden, shed tears and tend to freak people out. At left you see someone with an active, severe case of Graves' ophthalmopathy.
The antibodies basically attack the bellies of the oculomotor muscles, swelling them with a mucoid deposition, and that in turn causes the herniated fat, the bulge, the double vision, and sometimes even the loss of vision. Severe ulceration of the corneas, severe double vision and the loss of vision as the optic nerve is crowded are all good reasons to have steroid therapy and even surgery to make more room for the eyes. Sometimes this entails chipping out sections of the bone of the orbit, exposing the brain and the patient to considerable risk, but also giving the patient a shot at a more normal life.
Sometimes prismatic lenses are all that is required to restore functional vision.
And here's an annoying catch: the thyroid symptoms and the eye symptoms run their own courses. Correct the thyroid function, and the eyes could take another 30 months to "burn out" and go back to some semblance of normal. Sometimes, the eye symptoms are the only manifestation of Graves' disease, but that's usually not the case.
My story, part II
So, I was understandably worried about what my eyes might do, once given the diagnosis of Graves. I felt like Mr. McGoo with that swelling around the right eye, as you can see in the linked photo. I was using lots of vials of eyedrops and by the time the second photo at left was taken, I had to tape my right eye shut at night. I looked like Bill the Cat.
At the same time, I began seeing an ophthalmologist, who pronounced my eye disease moderate, since I also had some double vision in unimportant fields. All he could do for me was watch and hope for the process to slow and "burn out," as my thyroid returned to normal. He also told me that it is common for only one eye to be affected by Graves' ophthalmopathy.
Above right is a current mug shot, three years after my diagnosis. My eyes look okay, but you can see something is wrong. I still have some slight swelling and double vision. My right eye will never again have the mobility of its partner, it seems, and I'll have to swivel my head a little more to see things in binocular vision.
Risks
Left untreated, Graves' Disease is rarely fatal these days, according to most experts. The main cause of death associated with Graves' is cardiac; what began as frequent PVCs or PACs can segue into atrial fibrillation, stroke and death, given time. But the process is a long one. One fairly recent death that may have been related to Graves' disease was that of Marty Feldman, who died quite young of cardiac arrest after a startle; however, Feldman had some other cardiac-unfriendly habits as well.
"Thyroid storm," a potentially fatal hypermetabolic crisis, is another complication of the disease, far more common before modern treatments for hyperthyroidism were developed. Long-term, the thyroid has a 90% chance of becoming nonfunctional after Graves' has remitted.
Graves' will also leach calcium from the bones, hastening osteoporosis. It can also cause infertility and miscarriage, and the delivery of some very endocrinologically sick babies. Other than that, the serious effects seem limited to psychological and ophthalmological ones. As one physician told me, "My patients tend to have trouble with car accidents and divorce." I'm not sure how firmly his tongue was planted in his cheek, but I do know many Graves' patients who complain that the mood swings and anxiety that persist, even once thyroid balance is restored, can cause lifelong problems. Vitality, mentation, even job performance can be affected.
My story, part III
I mentioned that, while "thyrotoxic," I was acting like a squirrel on angel dust. And I was such a bitch! (Bar, I totally get you, now. Hang in there, sistah). I was a banshee, yelling at my husband and my child, and while taking a beta blocker, propranolol, helped me calm down while my thyroid was returning to normal, once off the propranolol, I was still a bundle of nerves. To make a long story short, a small dose of fluoxetine wiped away the anxiety.
Fluoxetine increases available serotonin in the brain, which was fortunate for me, because some studies show that hyperthyroidism permanently monkeys with that neurotransmitter balance.
I will happily eat Prozac for breakfast for the rest of my life to be rid of that horrible anxiety.
Treatment: medical and surgical
There are basically 4 treatment modalities:
- Ameliorating symptoms with beta blockers during the time the hyperthyroidism is being treated. Beta blocker blood pressure medicine like propranolol block the super sensitivity that the Graves' patient has acquired to adrenaline. It's a symptom controller, not a remedy.
- Anti-thyroid drugs (ATDs) of varying types block output of T3 and T4, forcing a euthyroid state and giving the body time to heal itself. Remission is a frequent benefit. The drugs can be hard on the bone marrow and liver, and require monitoring.
- Thyroidectomy removes all or part of the thyroid. This tends to cure the hyperthyroid part, may require thyroid replacement hormone therapy, and does little to stop the anti-thyroid antibodies. You need a good surgeon—one good enough to spare your little parathyroid glands, which you need for calcium balance.
- Radioactive iodine treatment (RAI). With this, you take a radioactive iodine pill and it destroys your thyroid. Downsides are that you have no more thyroid function, and if you have the eye component of the disease, it may get much, much worse after RAI. And there's the small risk of cancer from the radiation.
Graves' in America (Hint: we're not `number 1')
Time to haul out the soapbox, because RAI is the treatment of choice here in the U.S. I have no idea why. Furthermore, wouldn't it be better to use a pill to restore normal thyroid function rather than kill the gland off altogether? European endocrinologists sure think so. RAI is a last resort for them.
As I said, the thyroid is not the main culprit . . . it's the faulty immune system, producing all those antibodies, attacking all those tissues, not just the thyroid.
My story, part IV
"Toxic diffuse goiter," my endocrinologist told me. "And you do have Graves' ophthalmopathy. I think I'll start you on methimazole and we can schedule RAI in a few weeks."
"No we won't," I said.
"I can always try propylthiouracil on you, then."
"I mean, we won't be doing RAI at all. I want the ATDs."
And he blinked at me and did what I said. It took a little fiddling, but a year on propylthiouracil put me back into remission, without detectable antibodies. The Endo tells me I have an excellent chance of remaining in remission for good.
And I still have my thyroid, and my TSH is always around 1 these days. I check it every 6 months.
Thank you
For reading my little disquisition on Graves' Disease. Fortunately, most of you will not have this particular endocrine sledgehammer splatter the yolk of your life; you have to settle for disruptors like the Koch brothers.
I will be in and out to entertain any questions or comments.