Fat is a symptom, not a disease, Part Two: Hypothyroidism

About five years ago, I started developing severe symptoms consistent with hypothyroidism: crushing fatigue, widespread pain, weight gain, and other issues. I'd had them to some degree for several years before that, but for the first time in my life, the symptoms were interfering with my ability to work.

My doctor at the time, we'll call him Dr. H, did blood tests, and he told me that my thyroid levels were "normal". With every other thing ruled out, and some other things ruled in, he finally concluded that I had fibromyalgia, and got me started on some medications that were supposed to help. These medications helped the pain and depression somewhat, but I was still exhausted most of the time.

A few months later, I asked him to do another thyroid test. He told me that it was a good idea, since the standards for "normal" had been changed, and that my previous test, while "normal" at the time, now was outside of that range. The phlebotomist took a few vials, and I heard back a couple of weeks later that my levels were "normal". Now, at the time, I had not done my homework. I was still not fully aware of the extent to which I had to advocate for myself with doctors. Too trusting and naive, I didn't actually get told what the numerical results of my test were, only that they were fine.

Fast forward to a year ago, when I changed my primary doctor to someone I'd met through work, a very intelligent man who was very knowledgeable about hypothyroidism and fibromyalgia. Dr. D was of the opinion that, even if the test results appear to be normal, when a patient exhibits symptoms of hypothyroidism, it may be beneficial to treat for it anyway. He said that about half of the people in such circumstances show improvement with the thyroid medication.

Additionally, my previous doctor only tested for TSH, the chemical your brain sends to your thyroid to tell it to make the thyroid hormone. Basically, if you aren't making enough thyroid hormone, the pituitary gland keeps pumping out TSH, which reaches a high level because it's the equivalent of the pituitary gland screaming at the thyroid to step up production. So a high level of TSH will show that the thyroid's not responding enough to shut up the pituitary gland. In my opinion, that's a bit like determining if someone is deaf by whether or not their spouse is screaming at them to be heard. Maybe you can draw some conclusions from it, but it doesn't necessarily mean anything if the spouse isn't shouting.

In many people, the TSH test will not show hypothyroidism; people with fibro especially seem to be harder to test because of a biochemical feedback loop (and no, I don't know where my source for this is; I had it in a newsletter or something) that results in a normal-appearing TSH level. So, to see if there's enough thyroid hormone being produced, the most accurate way is (and don't be shocked here) to test for the actual level of thyroid hormone. Now, to me, that seems kind of common-sensical, but I guess it's more expensive to do the full testing.

The long and short of it is that, once Dr. D did the full panel of tests, it showed that I was, in fact, not producing enough thyroid hormone. He had already started me on the medication, however, preferring to begin treatment immediately instead of waiting. It can take a long time to get up to the proper dose, because you start very small and work upward toward the dose that works for you, so he didn't want to make me suffer any longer than necessary.

It has only been in the past couple of months that I've finally been up to the right amount of medication. My energy levels have noticeably increased--I can actually feel that my metabolism has revved up a bit. I feel cheated, though--I could have been feeling like this four years ago if my last doctor had been doing his job and using his brain. I don't know how much the years of hypothyroidism have actually damaged my body, and if I'm going to recover somewhat from that, it could take a very long time.

Left unchecked, hypothyroidism can damage the heart, kidneys, and mental state, and can cause osteoporosis and anemia, among many other problems. Because of the metabolic effects, it causes weight gain, and makes weight loss, even through intense dieting and exercise, nearly impossible. Hypothyroidism is NOT difficult to test for--and is fairly simple and inexpensive to treat. As such, there is NO excuse for anyone with the condition to remain untested and untreated; anyone exhibiting symptoms should be taken seriously by a doctor, instead of being treated like they are not worthy of medical assistance until they lose weight.

Educate yourself on the symptoms, and don't accept no for an answer if a doctor doesn't want to do the tests. Make sure you know what tests are being run, and if they aren't the full panel, ask why--insist that it be done. Don't accept a qualitative answer like "normal"--get numbers, and compare them to the latest medical literature. If your literature shows a result different from your doctor's qualitative answer (outside the normal range, when the doctor's said you're normal), find out why your doctor's opinion is different. If you find that you're not getting straight answers or considerate treatment, get another doctor. Remember, it's YOUR body, YOU have to live in it. It does not belong to your doctor, and you don't have to accept your doctor's word as gospel.

I sincerely hope that my experience can help others get the treatment they need.