As 21-year-old Toria Christie scrolled through TikTok, she started to cry. “I was so sad when I first saw [those videos],” she tells me. “Like, so sad.”
Christie doesn’t habitually cry at TikTok. But on this occasion, she was searching her lifelong condition, hypopituitarism — when the pituitary gland doesn’t produce enough hormones to be able to control other glands throughout the body — and she found some videos [of people purporting to be experts] that left her feeling angry and deeply upset, because they were suggesting that people with hypopituitarism “can’t feel romantic love”.
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“A rare condition called hypopituitarism means that its sufferers are unable to feel romantic love,” reads one video as the user slumps forward in (seeming) despair. In another, the user is sharing “stone-cold facts about love”, and confidently asserts that “people who suffer with hypopituitarism are incapable of feeling romantic love at all.”
But this is (stone-cold) misinformation. Of course, TikTok is rampant with these health conspiracy theories, but in 2024 it’s not just TikTok; the same false messaging is wafting around X, Instagram and Facebook, and it’s damaging.
What is hypopituitarism?
“Hypopituitarism is a rare condition in which the pituitary gland does not make enough of certain hormones,” says Dr. Paul Jenkins, consultant endocrinologist at the London Endocrine Centre. “[It] can develop suddenly after brain injury, surgery or bleeding, or very slowly in response to a slowly growing tumor (almost always benign) of the pituitary gland.”
Betul Hatipoglu, MD is a professor of medicine at the CWRU School of Medicine, and previously a staff endocrinologist at the Cleveland Clinic. She describes the pituitary gland as a master gland, “as big as a chickpea, that sits between our eyebrows and is attached to our brain like a cherry and its stalk.
“It’s the chief of our hormonal glands — thyroid, adrenal, testis/ovaries — [and is] a centre for hormonal balance,” Hatipoglu continues. “When the pituitary gland is silenced, the end gland — the thyroid, let’s say — is perfectly healthy but does not receive any signals.”
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Hatipoglu also explains: “Panhypopituitarism means ALL the hormones are affected, whereas hypopituitarism can be just one or two hormones affected. The adrenal gland might function, but the ovaries might not, for example.”
Christie was born with panhypopituitarism, and is also partially sighted as a result of her condition. “I can’t control any hormones in my body, so all of them have to be done by medication,” she says.
Treatment for hypopituitarism
Christie takes hydrocortisone in tablet form once a day to get cortisol into her body. She takes a growth hormone injection every day, too, and, if anything goes wrong — an injury, exam stress at uni, a bereavement — Christie has to take medication to help her body cope.
Olivia*, 30, was diagnosed with hypopituitarism at age 15, after having emergency surgery to remove a pituitary tumor which slightly compromised her pituitary gland. Like Christie, Olivia now takes daily medication to supplement the hormones her body can no longer produce on its own, and like Christie, will continue to do so for the rest of her life.
There is an emotional impact — Christie tells me about her perpetual health anxiety and a lifelong suspicion that she’ll die young, while Olivia talks about the constant exhaustion of monitoring everything that happens with her body (a headache, for instance) and wondering whether it’s caused by her condition or normal life — but neither Christie nor Olivia have any issues when it comes to feeling romantic love, or love of any kind.
“I love so many people,” says Christie. “I love my mum, I love my sister. I feel love, and I give love to people, and I do that through my head [and] my heart.” Christie has also dated, and has had two boyfriends — “I don’t think the way I’ve dated is out of the ordinary,” she says.
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Misinformation about hypopituitarism on social media
Olivia was appalled when I asked her about the TikTok videos that made Christie cry. “I had no idea this kind of misinformation about hypopituitarism existed,” she says. “Honestly, I’m shocked. I don’t really understand how anyone could think that, logically?”
28-year-old Emily* was diagnosed with a pituitary tumor at age 23 and then with hypopituitarism at age 25 — “with a partial adrenal insufficiency, hypothyroidism [an underactive thyroid], no oestrogen, and no growth hormone.” Like Olivia, Emily was shocked by the misinformation that people with her condition “can’t feel romantic love.”
“[I’m] not really sure where the idea has come from,” Emily says, explaining that she’s never heard about it before and has been in a loving relationship for over three years. “I actually met my partner a couple of weeks after being diagnosed and he has been incredibly understanding.” She tells me that nothing really changes — for her, at least — when it comes to living with hypopituitarism, as “all missing hormones are replaced through the medication.”
“There is no clear evidence or scientific proof that patients with treated hypopituitarism ‘can’t feel love’,” agrees Jenkins. He does point out that untreated low levels of luteinising hormone (LH) and follicle-stimulating hormone (FSH) leading to low sex-hormone levels (testosterone and/or oestrogen) can cause low sex drive; and Hatipoglu, too, acknowledges that “the pituitary hypothalamic area is involved in many emotional and sexual pleasure contexts. If there are too many invasive tumors or surgical procedures, some of these patients can develop some emotional or sexual dysfunction that could be treated.”
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But that’s not love — far from it. “The love capacity overall is a higher brain function and, indeed, is not affected; the capacity to feel love or fall in love or love another, or nature, or one’s job, et cetera, has not been affected in my observation or experience at all,” says Hatipoglu. And if complications in the bedroom are where the idea that people with hypopituitarism “can’t feel romantic love” stems from — well, we shouldn’t be reducing the vast, soaring phenomena known as “love” purely down to sexual activity, or equating possible sexual complications with a total inability to feel romantic love.
Plus, Jenkins adds: “The vast majority of individuals with this condition are under the care of experienced endocrinologists and are being prescribed appropriate doses of their deficient hormones to restore their circulating levels back to within the normal range and as such, any physical or emotional symptoms that they might previously have been suffering should be resolved.
“The medical community needs to emphasise that there is no evidence supporting the misconception such as ‘can’t feel love’ and instead [needs] to reinforce the message that hypopituitarism is a relatively straightforward condition to treat, albeit often requiring lifelong medications,” Jenkins concludes. Emily’s experience is a prime example of this: “I actually don’t think of my health condition too deeply now that everything has settled down in the last year,” she says. “I feel very happy and settled in my life with work, family and friends.”
Even if we’re not part of the medical community, we can all do our part to keep countering this misinformation when we see it; because misinformation is what it is.
Take Olivia’s experience, for example. “I lead a life very full of love,” says Olivia. “When I love, I love hard, faithfully and unabashedly. I feel the whole spectrum of love: from heartbreak to the kind of love where your heart feels like it soars. I’m very much a ‘heart on my sleeve’ kind [of] gal — and if you knew me but not my medical condition, I don’t think anyone would formulate the opinion [that] I can’t feel love.”
*Names have been changed to protect identities.