Tuesday, March 16, 2010

The Butterfly Effect

Ah, genetics. The fault, dear Horatio, is not in our stars, but in our genes.

I don’t gamble; I can’t stand what is, to me, the decision to just throw money away. I’m not a lucky person. I’m a person who will methodically try every possible path in the labyrinth until one leads out. That’s the only thing that has ever worked for me, and I rely upon it.

If our genes can be compared to a hand of cards that we’re dealt in life, I’m screwed destined to life as an autoimmune disorder patient. Every female on the maternal side of my family, myself included, has had Hashimoto’s Thyroiditis, an autoimmune hypothyroid disorder. My body makes antibodies that attack the thyroid, the butterfly-shaped gland at the base of the throat that controls metabolism. I suspect my sister, who won’t get tested, has it as well. My brother has Psoriasis, an autoimmune skin disorder, which comes with its own special version of autoimmune arthritis. So, the Force is strong in my family /end sarcasm.

It’s very rare for autoimmune disorders to strike preschoolers. I chalk that up to the stress of our incredibly dysfunctional family life, which I’ll get to later. Film at 11.

Before my fifth birthday, I became “the fat kid” overnight. That would have been the first of many thyroid crises. They are scary. During one of the scariest, when I was working on my undergraduate degree, I was running 35 miles each week and eating only three small bowls of rice a day, and gaining a pound a day. The terror this generated was what prompted me to insist to yet another gatekeeping GP that I be sent to an endocrinologist. That guy, God bless him, found a goiter that he estimated to be around 20 years old judging by how fibrous it was. At that same appointment, I was given a prescription for thyroid medication and the correct test for diagnosing hypothyroidism. At the next appointment, I learned the test had been positive. I was ecstatic. Finally, what I’d known all along was validated—I had a thyroid problem. I wasn’t lying to myself about how much I was eating, or exaggerating how much I was exercising. I wasn’t imagining a choking feeling in my throat all the time; that was the goiter. I was 25 when I was first diagnosed.

That visit started a long journey toward finding the right thyroid treatment for me. I didn’t feel right on synthetic thyroid medication, but had to fight to get the appropriate dosage and to be placed on natural thyroid. That fight is heating up again, by the way; the company that makes natural thyroid has been having problems with production, and the medication is back-ordered at many pharmacies. Some pharmacies have stopped even ordering it. Others have sporadic shipments. This has created a situation in which some thyroid patients are having to call around to multiple pharmacies to make sure the pharmacy has some of the medication first. What I was doing was calling pharmacies, finding out what they have on the shelves, then calling my doctor, who would write out a prescription based on what is available. Many patients are doing this; there are people taking one-and-one-eighth pills, one pill one day and ¾ of a pill the next, and so on. At present I’m taking a natural thyroid supplement that is compounded at a pharmacy that takes orders for custom prescriptions. That could be jeopardized at any time, though, because as shortages continue, patients on natural thyroid go looking for other sources, and then there is competition for the natural thyroid that is available.

On the scale of Calamities, this one isn’t that bad; much worse things can happen to a person, but this is what’s happening to me, my personal calamity. I have some other medical issues, but those, and how they are being dealt with, well…I’ll wait and address those in some other posts.

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