I was diagnosed with hypothyroidism my freshman year of college. I was seventeen and fatigued in a way that didn't seem entirely related to, let's say ... the vigorous exercise of my freedom from parental oversight and control. I was given medication to artificially replace the thyroid hormones my body wasn't producing, and I didn't ask any questions. What could I have asked? What should I have known to ask, especially in light of the diagnosing doctor's approach, simple and pragmatic: this medication will solve the problem; thus, there is no problem.
What I could I have asked are the questions I have been asking recently. Like, for example, what caused my hypothyroidism? Why is my body not producing enough thyroid hormone? Could this condition have other, related effects on my body? Is there a relationship between this condition and the fecundity of which I am currently, seemingly, exhibiting a lack?
At the first miscarriage-related appointment, I asked the nurse to test my thyroid hormones as well as hCG. The results showed that at the time the pregnancy was lost, my thyroid-stimulating hormone (TSH) levels were high, meaning that despite the medication I was taking, my body was not receiving enough thyroid hormone and thus was trying very hard, and very unsuccessfully, to make itself produce some. (TSH is the hormone that stimulates the thyroid gland to make thyroxine, or T4, the thyroid hormone. If the T4 level is too low, meaning the body is hypothyroidic, the body releases more TSH in an attempt to stimulate the production of T4. If the body has a problem producing T4, the TSH level will remain high.)
I've since read that a TSH level below 2.5 is recommended for women trying to get pregnant – and, of course, stay that way. Mine was 8.31. I asked my gynecologist if there could be a link between that and the miscarriage. "Maybe," she shrugged.
I followed up with my generalist and asked him, too, if there could have been a link. "Maybe," he, too, shrugged.
I understand the shrugs. Really, at that early moment of pregnancy, it could have been anything.
My TSH and T4 levels looked better after an increase in the dosage of thyroid medication. The generalist asked me to return in six weeks for another follow-up, which took place yesterday.
During those six weeks, I spent some of my interminable free time researching hypothyroidism, which I should perhaps have done, oh, half a lifetime ago, when I was first diagnosed. There are two primary causes: the first, a deficiency in the portion of the brain that produces the thyroid hormone; the second, an autoimmune disease in which the body attacks its own self, the thyroid in this situation.
The two can be distinguished by the presence of anti-thyroid antibodies in the blood, which would indicate that the hypothyroidism is caused by an autoimmune problem. While the treatment for both is the same – taking the thyroid replacement medication that I'm currently taking – the implications of each are very different.
When I went to have my blood taken in anticipation of the follow-up appointment, I asked the nurse to test for the presence of these anti-thyroid antibodies in addition to TSH and T4. She wouldn't; it hadn't been pre-authorized, and the doctor wasn't there yet. I waited until he arrived (which luckily happened before I had to resort to having one of these). I explained what I wanted, and the reasons for it. He didn't understand why I didn't already know, why this test hadn't been done before. "It's usually done at the time of initial diagnosis," he told me.
I found out yesterday that anti-thyroid antibodies are indeed present in my blood. So it's not just hypothyroidism that I have, but also an underlying autoimmune disease, with all these potential related complications: subfertility, infertility, recurrent miscarriage, and other later-term pregnancy complications that I don't really want to think about right now because the first three on that list are enough for the moment. And it's not just that – having one autoimmune disease puts a person at higher risk for others.
Next step: an appointment with an endocrinologist, to take place in two months (I guess he's busy), which leaves me plenty of time to finish Guidelines of the American Thyroid Association for the Diagnosis and Management of Thyroid Disease During Pregnancy and Postpartum (available here, for those interested in thyroid issues) and to make myself as informed and as annoying a patient as possible.
Better late than never.
That SUCKS, it sucks seriously hard that you have to contend with this, but I suppose at least you have a possible reason and an answer, at least there is something they can try to fix. I know it was a massive blow when we found out about Kitts issues, but in many ways I feel more in control since we found out. I have something real to battle against now. I also found I could relax more as until we get the help we need my hopes are not so high. I am so sorry you are going through this, but I hope it feels like at least with answers you are moving forward.
ReplyDeletethat sucks. I hope you can get the answers you need from the endocrinologist....
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I am so frustrated with the medical community right now! I know you're kicking yourself for not asking/researching earlier, but we get so little real information from doctors. I hope they figure it all out and it solves your fertility problems!
ReplyDeleteOh I'm so sorry to hear that. Stupid doctors piss me off. I hope the time goes quickly until your next appointment. Maybe call them and tell them to call if there are any cancellations?
ReplyDeleteI'm sorry. This is so annoying and frustrating. Why do we sometimes have to play our own doctors? Shouldn't they know what they are doing?
ReplyDeleteI really hope your endocrinologist will be on top of everything and you'll get the treatment you would have deserved long time ago.
I'm sorry that you've uncovered such a disconcerting fact about your own health. It's horrible to learn that your own body has betrayed you. I hope the endocrinologist will have some solid answers for you (instead of just a shrug) and that you can move forward with a viable fertility and general health plan.
ReplyDeleteYet another unfortunate example of how necessary it is for us to advocate for ourselves. So frustrating having to make all of these fertility and health connections on our own. Seems to me that nobody takes anything seriously unless it's a four alarm fire. Bah!
ReplyDeleteps - I had a strange dream about being in Switzerland last night. It was beautiful and I seem to recall eating some delicious treats.
I hate it when you learn vital health information years later. I have the same thyroid issue and when I was researching low AMH I saw it could be caused by auto-immune diseases. Of course, we have no idea if that is actually the case with me. I'm hoping the increase in medication will solve your problems. Also, I'm really glad you posted this because it reminded me that I have to get my levels checked soon!
ReplyDeleteUgh. Doctors! They try, they really do. I have kicked myself for trusting without asking more questions. I think we all need to learn enough about our bodies to be annoying patients. Those docs need to work hard to outsmart us.
ReplyDeleteGood for you for advocating for yourself--as you said, better late than never. It sucks that the medical community can't be more forthcoming with seemingly important bits of information and that we often have to educate ourselves and ask the right questions. I'm so glad you're doing that. Take care of yourself!
ReplyDeleteI didn't know that thyroid problems could be related to auto-immune issues. I read a book several years ago about auto-immune disorders and thought it was pretty amazing. It was the Auto-Immune Epidemic by Nakazawa & Kerr. Hopefully you can get started on the path to addressing the issue.
ReplyDeleteThank you all for your support, input, and ideas! I just posted an update after seeing the endrocinologist yesterday and am feeling a lot better about managing the diagnosis. It is so true that we really do need to be our own advocates, especially when there can be such a lack of coordination between different specialists.
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