This month’s Carnival of Aces topic is “living asexuality,” and since I saw this ask mention hypothyroidism, it’s been on my mind. I thought now would be a good time to explore it especially in light of this month’s topic. (Warning for medical talk, and brief mention of corrective rape, but mostly this is just focused on symptoms and treatments.)
I think I may have mentioned before that I have hypothyroidism, but I haven’t really gone into detail about what that’s been like—or, especially, its interactions with PTSD and how asexuality complicates both.
Laura also has hypothyroidism and wrote about her experiences here. It’s a pretty common disorder, and more common in cis women—I have met quite a few people who have had it over the years, both before and after I was diagnosed, and all of them by coincidence.
I have no idea how long I have had thyroid problems. I was diagnosed at 23 or 24 (the diagnosis itself took a couple of months), but I had been having symptoms that could have been related for much longer than that. And the only reason they found out that I have hypothyroidism at all is because I decided to try some medication for PTSD, so they screened me for it (along with a bunch of other things, like diabetes). PTSD shares some of the same symptoms—poor memory and concentration, depression, and fatigue (from PTSD affecting the quality of sleep). Some of my other symptoms could have been explained by other factors, too—like dry skin could’ve been the result of living in a dry climate. So I think it went undiagnosed for a long time.
When they finally caught it, it was because they noticed my TSH (thyroid-stimulating hormone) levels were abnormally high, and my thyroid gland wasn’t responding. They examined my thyroid and found a node, which I had to have checked via ultrasound. It appeared to be nothing to worry about after all, though, so beyond that, the cause of my apparent thyroiditis was never investigated. I would guess it is most likely autoimmune, since that’s the most common cause in countries with enough dietary iodine and I have no other risk factors, but my endocrinologist hasn’t been concerned enough to test for antibodies or anything like that.
I didn’t come out as asexual to any of my doctors. “Decreased libido” can be considered a symptom of hypothyroidism, and I wasn’t willing to subject myself to acephobic comments. I always checked “no” to the question of whether I’d experienced a “loss of sexual desire” anyway, because it’s not really a loss if it was never there, is it? Besides which, I did have some level of responsive desire, under the right conditions. So none of that ever seemed especially relevant. I had decent therapists (one for individual therapy, two others running a group) to whom I was out as asexual, and they were good about it… but they couldn’t prescribe medications, so they had to send me to see a psychiatric nurse—who, as it turns out, was about to retire, so I ended up having to see two. I wasn’t comfortable coming out to either of them—especially the replacement, who was extremely unprofessional and just generally awful. I still can hardly believe it to this day, but when I went in for my first appointment with her, she didn’t even show up. At all. And I was left waiting for hours, until someone figured out how long I had been waiting, and realized she just wasn’t going to come to work that day. All of this was while I was dealing with some pretty extreme anxiety symptoms, and before my thyroid problems had been treated.
Initially, the medication they gave me for PTSD was Wellbutrin, which was a baffling decision to my most recent doctor. The reason was because I had severe migraines which had only ever been alleviated by a medication that has bad interactions with SSRIs—so you could say it was a choice between pain and suffering. I’ll come back to the migraines in a minute, but first…
Bupropion is one of few antidepressants that do not cause sexual dysfunction. A range of studies demonstrate that bupropion not only produces fewer sexual side effects than other antidepressants, but can actually help to alleviate sexual dysfunction. According to a survey of psychiatrists, it is the drug of choice for the treatment of SSRI-induced sexual dysfunction, although this is not an indication approved by the U.S. Food and Drug Administration. There have also been a few studies suggesting that bupropion can improve sexual function in women who are not depressed, if they have hypoactive sexual desire disorder (HSDD).
It was entirely a coincidence, but I ended up being prescribed a medication used to treat HSDD! And, entirely unsurprisingly, it did nothing to increase my sexual desire!
It also increased my agitation and irritability levels, and did nothing to actually alleviate my PTSD symptoms—in fact, I think my anxiety and insomnia got worse—so I got off of it after several months (perhaps even up to a year).
But I was only able to switch to a different medication after my thyroid levels stabilized, and my migraines went away.
Yep, that’s right. My extreme, severe, frequent and chronic migraines which had plagued me for my ENTIRE LIFE went away after my hypothyroidism was treated. I have only had them very rarely since, and with nowhere near the same severity.
Headaches are not really a symptom of hypothyroidism, though—they were more of a side effect of the combined symptoms of insomnia and fatigue. I’m sure I would have had migraines anyway—both of my parents suffer migraines, and genetics is a factor. But the hypothyroidism and the PTSD combined to trigger such obscenely bad headaches that I ended up having to quit my job, and I’ve never been able to work a job with regular hours since.
I could never get enough sleep, when my thyroid levels were messed up. I would sleep so heavily that I couldn’t hear any alarms, no matter how loud and annoying I made them.
And at the same time, I always had insomnia. Actually getting to sleep would take hours and hours of just lying there in the dark. I actually tend to wake up when the lights go out, not get more sleepy—no matter how exhausted I am physically. And then when I finally slept, there would be nightmares.
I don’t wish that experience on anyone.
Now that my condition is treated, things are so much better. But my thyroid levels are still subject to occasional imbalance. I’ve been informed that with hypothyroidism, it’s generally expected that the condition will gradually worsen over time, and then I’ll probably have to increase my dosage of levothyroxine. Once a year, I get my hormone levels tested—so I can easily bat away the “it must be your hormones” line of invalidation (not that it actually comes up very often for me). I have instructions to come back to get them re-tested if at some point I start experiencing symptoms again. The trouble is, medications for PTSD can also mimic the symptoms of hypothyroidism. Many of them have side effects like fatigue and weight gain, so for a long time while I was still trying to take SSRIs, I would be unable to tell whether I was having symptoms or side effects.
I decided ultimately to stop taking any SSRIs, because dealing with side effects from them makes it so much harder to manage my hypothyroidism. It led to a feeling of constant paranoia about my thyroid levels, which just increased my overall stress and made my PTSD harder to handle in turn. Going through withdrawal when I tapered off was hellish to the point where I really questioned my decision, but at this point, I do think it was right for me. In my case, alternative treatments work better.
Asexuality indirectly—but profoundly—influenced this complicated tangle of symptoms. My PTSD was, of course, a result of someone perpetrating sexual violence against me because of my asexuality. Maybe he would have done it regardless, maybe it was just that asexuality was a weak spot that was easiest to target. It doesn’t really matter—it still happened. And my asexuality made getting treatment for both PTSD and hypothyroidism that much harder, even though my doctors don’t know about it and my therapists have been mostly okay with it. Just bringing it up at all has been very stressful. And I got lucky, because if I hadn’t had therapists who were okay with my asexuality, I would never have gotten far enough along in therapy to try medication for my mental health condition, which means I would never have been screened for any other conditions. The only reason my hypothyroidism was diagnosed at all was because I got lucky with supportive therapists.
How many more years would I have lived with untreated hypothyroidism—a physically disabling condition, especially when combined with migraines and PTSD—if I hadn’t had supportive therapists?
Not everyone has been so lucky. Let’s do everything we can to support each other, and to increase the odds of finding competent, supportive treatment.
Cross-posted to Resources for Ace Survivors.