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.
13 thoughts on “Asexuality, hypothyroidism, and PTSD”
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This is a really interesting post Elizabeth, thank you for sharing your experiences for the carnival!
Thanks for sharing your story. I’m sorry you had such a rough time of it. It may be different for you for a number of reasons, but my thyroid levels have been largely stable over the long term; I’ve been taking levothyroxine for nearly 30 years now and have rarely need to have my dosage adjusted by very much. Even when it is, there were never any symptoms, its just that TSH was out of the normal range when I had my annual lab work done. I hope that it will be the same for you as time goes by and not be too difficult for you.
I keep thinking “Does it really sound that bad?” and then remembering wait yeah, those were the Hell Mode days for me. These days I don’t really have any thyroid-related issues other than terrible not-funny jokes by the pharmacists who happen to see me wearing an ace pride shirt and obviously don’t know the first thing about asexuality. So far, my levels been very stable. It’s good to know that yours have been too! I think it’s pretty likely that my endocrinologist was just being especially cautious and thorough about everything (the C-word came up during the diagnosis), so I’m not terribly worried now. It mostly just made the side effects of the meds I tried much more difficult to detect, because they weren’t significantly different from when I was having hypothyroid symptoms. I’ve found a much better alternative to that type of medication now, fortunately.
Thank you for sharing Elizabeth! Aaaa time to add this to my tiny pile (mostly made up of things you’ve linked/posted) of sexual disorder umbrella stuffs.
Ha, glad you found it useful!
And hey, guess what I got in my email this morning after this post? Spam from a drug marketer hawking, among other things, FLIBANSERIN. Oh yeah, sure Sprout, I 100% believe you’re not going to market this to asexuals at all. *eyeroll*
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This is a reminder that I should get tested for TSH/T4 (again) and antibodies now that I have health insurance again (wow, it’s been almost two years since I got tested for TSH/T4).
I hope that all goes well with your levothyroxine treatments, and that you find a satisfactory way to manage your other issues.
Thanks, and don’t worry, everything is well managed now. :) Thyroid is super stable and I have found a medication that helps for both PTSD and migraines (on the now-rare occasion that they show up).
Wow this is an interesting point that I hadn’t considered before. I’m asexual and got hyperthyroidism a few years back (as a result of a really bad virus) and I’ve been on the border of overactive thyroid ever since (which is the opposite of what you’re talking about, I think) but I wonder if that’s affected my sexuality at all? I rememeber I had a sharp drop off in sexual desire that never truly came back but I’m struggling to remember what I felt towards people…
Anyway, thanks for sharing this thought-provoking post!
Yeah, hyperthyroidism is the opposite, although it does share some of the same symptoms as hypothyroidism. It’s possible that the drop off in sexual desire might be a symptom. In my case, it was weirdly the opposite of what would have been “expected” because once my thyroid condition was treated, I felt a drop off of interest in sex. I don’t think it was related to anything physical, though—it likely had more to do with psychological triggers making me feel more sex-repulsed than I had been previously.
One thing that may be worth mentioning is that it’s possible for hyperthyroidism to eventually turn into hypothyroidism over time. I went through a time in high school where my symptoms matched hyperthyroidism better, so that may have been the case for me.
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You know, I’ve never put all my health issues into relation like that – I’m not a survivor, but hypothyroidism, migraines and heightened levels of androgenes? Check. (Yeah, I have “too much” testosterone for a cis-woman, and a very low libido, no, it doesn’t have to make sense.) I do wonder whether a lot of my migraines could’ve been avoided if they’d checked my TSH before prescibing me an androgen-blocking pill. Which wrecked my blood magnesium levels, which no physician realized, so: migraines. To the point where I had to go through freaking NSAR-withdrawal once. Is not fun.
That being said, my TSH levels have been stable for a good ten years now, and as a pharmacist, I mostly meet people whose levels have been stable for years, too, so: If feasible, get the check every year, but there’s usually no reason to panic.
I’m demisexual with ptsd and Hypothyoidism. I felt alone with this. My attacker was a drunk woman, but she wasn’t the problem it was my so called friend who allowed it to happen.
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