The thyroid, a butterfly-shaped gland that wraps around your windpipe, produces and manages hormones that help regulate physical developments like muscle growth, metabolism, and many other bodily functions. At least 12 percent of people are born with or develop thyroid diseases, which cause their glands to produce too much or little thyroid hormones—imbalances that can affect other glands and hormone levels, including those that directly control sexual functions.
These conditions can have diverse and serious effects on bodies and minds, many of which can seriously affect people’s sex lives, directly or indirectly. Hyperthyroidism, the overproduction of thyroid hormones, often causes anxiety and irritability, tremors and weakness, heat sensitivity and trouble gaining or maintaining weight, among other issues. Hypothyroidism often causes depression and brain fog, stiffness and inflammation, cold sensitivity and weight gain. Both categories of conditions often cause severe fatigue. While some cases of thyroid disease are fairly mild, others—if left untreated—can actually be deadly.
Thyroid health advocacy groups estimate that up to 60 percent of people with these conditions don’t actually know they have them, because their symptoms could align with many other conditions. Even medical experts often take a while to recognize and diagnose thyroid diseases. Once someone gets a diagnosis, finding the right individualized treatment can take years. Changes in people’s bodies and lifestyles lead to constant shifts in gland function and hormone balances throughout our lives, so even after finding effective treatments, people’s thyroid symptoms can resurge later, forcing them to start the exploration process all over again.
On top of all that, thyroid researchers admit that they have not prioritized patients’ sex and wellness concerns. Recent studies suggest that, on average, at least 40 percent of people with thyroid conditions experience sexual symptoms, either directly caused by shifts in their overall hormone balances or as secondary results of fatigue, pain, or other direct symptoms. People with penises may experience higher than average rates of erectile dysfunction, premature ejaculation, or delayed ejaculation. People with vaginas often report difficulties with self-lubrication and in reaching orgasm. People of all genders with thyroid issues report significantly decreased sexual drive and arousal.
If people get effective treatment for their thyroid issues—usually hormone suppression drugs or replacement therapies, but sometimes surgeries or other invasive procedures—medical experts say they should be able to minimize or even eliminate most or all of their symptoms, including sexual ones. Some thyroid health advocacy groups have started to create resources to help people mitigate the sexual effects of these conditions and advocate for their sexual wellbeing when interacting with doctors. Medical experts have also called for greater research into the effects of thyroid diseases and their treatments on people’s sex lives.
Still, candid details of people’s experiences of sex with thyroid diseases, especially in their own words, are few and far between. VICE reached out to Paula, who has Hashimoto’s disease—an autoimmune disorder and one of the most common causes of hypothyroidism—and her partner, Victor, to talk about how they manage the effects of thyroid disease in their sex life.
Paula and Victor’s names have been changed to protect their privacy. This interview has been edited for length and clarity.
Paula: I was diagnosed with Hashimoto’s disease when I was 30. I’m 36 now. After I got my diagnosis, I realized that I’d had symptoms since I was in college, although at the time I wrote them off as me just being a tired student. In my late 20s, those symptoms got so bad that I could no longer write them off as “just in my head” or “part of getting old.”
I slept way more than anybody else I knew. I had chronic inflammation that tended to coalesce in my upper back. My hair was falling out; the edges of my eyebrows disappeared. I could eat 1,000 calories in a day and work out five days a week and gain weight. It was really hard to focus. I could barely keep my super low-stress job. With fatigue, when you want to do something but you know you will run out of energy in the middle of doing it, even if you enjoy it, then you start to feel like it’s not even worth trying to do it. I couldn’t find the motivation to do even fun things.
Even after I got my diagnosis, it took two years to get to a point where I was mostly symptom-free—it was a process of getting incrementally better, changing my doses of medications, seeing what happened, waiting for blood tests, then starting over again.
Victor: We’d been married for over three years by the time Paula got diagnosed. Before that, I didn’t even know what a thyroid was.
Paula: My symptoms actually got really bad after I started hormonal birth control about three months before we got married. I’d never been on it before, and there’s not a lot of literature in medical journals about how it can affect thyroid function. But, based on similar stories I’ve heard from other people with thyroid diseases since I got diagnosed, I think that, while it wasn’t the only thing, it contributed to making my symptoms worse.
Victor: I saw a fairly rapid decline in our sex life right after we got married. Part of me thought at first that it was just the standard marital trope, where once you settle in you stop having sex. That was disappointing and frustrating to me, because we hadn’t had a lot of penetrative sex at all before we got married. I don’t think we talked much about it back then, though.
It didn’t take long for us to connect Paula’s thyroid disease to our sex life after she got her diagnosis, because she is a really-do-your-homework kind of person. It was a relief to learn that our limited sex life was the result of that.
Paula: Yeah, my libido fell right through the floor. It’s actually the one symptom I’ve never been able to resolve—even when, from the spring of 2018 to the fall of 2020, I would say I was mostly thyroid symptom–free. That seems to be common with people with Hashimoto’s who I’ve spoken to. In mid-2020, I also went to a therapist in part to try to figure out if my libido issues are caused by something other than my thyroid condition. We’ve discussed it a lot, but I don’t think that my therapist thinks I have any acute mental issues with sex that are affecting this.
I want to crave sex. It can be hard to get that point across to people. I remember being horny all the time when I was younger. I know I was capable of that, and I know that I miss it. I just genuinely don’t crave sex anymore—not the way Victor does. His libido is much higher than mine, and physical intimacy is one of the main ways he shows and receives love best. I just struggle to be in the right frame of mind to be physically intimate.
We don’t have sex very often now, and when we do, I’d say that half of the time it’s because I know it’s been a long time and Victor really needs the emotional and mental boost that connection’s going to give him and I want him to have that, and half of the time it’s because I want to have sex myself.
Victor: I’d say we have penetrative sex once every two months now, and sometimes less often than that. We do have moments of mutual stimulation—fooling around—that don’t turn into full-on penetrative sex maybe once a month though. When Paula’s symptoms got bad, the energy level of our sex declined, as well. It got… I don’t want to say run-of-the-mill…
Paula: [Laughs] You can say that!
Victor: Our sex started to become just like checking the box, going through the motions.
Paula: Because of my thyroid issues, it’s hard for me to gain muscle and I don’t have a lot of strength. I can’t hold myself in more athletic positions for long enough to matter. It’s a feat for me to even have the energy to dedicate to sex. So, I’d say our sex is pretty vanilla, yeah.
Our sex is definitely pretty logistics-heavy, too. Like, before my symptoms got really bad I never had a problem with lubrication, but now if we don’t use a whole lot of lube and make sure to keep things lubricated, it’s just not going to feel good for me. I don’t have trouble orgasming when I can get into sex. But when I manage to feel a bit horny, even just breaking the flow to put in my diaphragm can ruin the experience for me, and block off the path to climax.
My main goal in sex now is just to be intimate with Victor, though—to physically express love for him. If I get an orgasm out of it, then that’s great. I don’t feel the need for that the way a lot of people do. I sometimes feel like I’m letting Victor down as a partner because I feel like I so rarely have, or am willing to devote, the energy for sex and we have that intimacy so rarely.
Victor: We’ve had plenty of conversations about how thyroid disease affects Paula’s life in general, but we actually haven’t talked a lot about how it affects our sex life beyond chalking up our lack of sex to the condition, and expressing our frustrations.
I know how much effort it takes for her to be able to have sex and how rare it is for her to want sex. I don’t want to raise the topic in ways that might make her feel bad about that. I would rather that Paula feel better about things than try to focus on having more sex with me. I’ve gradually come to accept that this is something we can’t control right now, and so it’s just something we have to live with. I don’t try to initiate sex much anymore, actually, because I’ve learned to wait for Paula to let me know that she has the energy for it.
Paula: I never feel pressured by Victor to have sex more than I want to. The guilt I feel about not being able to have more sex is really my own internal guilt. We are in the process of looking for a couple’s therapist to get some support in learning to reconcile our libidos and to make sure that we’re on the same page in communication and understanding on our sex life, and in general.
Victor: It is important to me that we do a lot of cuddling when we go to bed and when we wake up to maintain our physical intimacy. Even before her diagnosis, actually, Paula required daily foot rubs, as well. Early on in our relationship, I got annoyed at times that this was an everyday thing. But over the last few years, it’s become another form of intimacy for me. I don’t get as much physical pleasure out of those foot rubs as she does. But it physically connects us like sex.
Paula: I actually get virtually the same thing out of cuddles and foot rubs that I get out of sex.
Victor: I give damn good foot rubs.
Paula: He does!
Victor: Masturbation doesn’t really work for me, because I’m on an SSRI antidepressant, which makes that kind of … fruitless, I guess? It hasn’t changed my libido at all, though. That does make it harder for me to orgasm when we do have sex, especially if we’re using condoms as well as her diaphragm for birth control. That delay can be nice, actually, because it means the sex lasts longer—and I want to make the most out of sex when we actually do have it.
Paula: [Laughs] From my perspective, it seems like you’re OK when we have sex and you don’t climax as well—like, you’re still satisfied with the intimacy that we’ve had overall.
Victor: I mean, I’m always a little disappointed if it can’t happen, but yeah.
Paula: While I have a really good relationship with my doctor, I definitely sense that my low libido isn’t a symptom she’s worried about mitigating when we make adjustments to my treatment. I’ve brought it up with her multiple times and she has never addressed it. In fact, low libido is an acknowledged thyroid disease symptom, but I’ve never heard a doctor talk about it proactively with a patient.
I don’t know if that’s because they don’t think it’s worth addressing, or they don’t have a means to address it. Either way, it’s frustrating. This is a limitation that negatively affects life. I know when I bring this up again this summer, as we try to adjust my treatment, I’m going to have to say, “I want to change this, and I’m not going to let you get away with not addressing it anymore.” With sex and thyroid diseases, you really do have to advocate for yourself like that.