Wwhen Cameron Whitley was diagnosed with kidney failure seven years ago, the news came as a shock. But the situation was about to get worse. His doctor decided the diagnosis meant Whitley’s hormone therapy had to stop.
As a transgender man, now 42, who took testosterone for 10 years, the impact was brutal.
“Not only have I been struggling with this new diagnosis that I’m in stage four kidney failure, now I’m being told I can’t have any more hormones,” said Whitley, an associate professor in the Department of Sociology at Western Washington University . . “I can’t describe how horrible that moment was.”
Crucially, he says, the decision was completely unnecessary. “We call it within the medical community ‘trans broken arm syndrome‘,” he said.
The term refers to medical situations – such as having a broken arm – that are not linked to gender identity, but health care providers act on the basis that there is a connection.
“We had no established sense that being on hormones was problematic. The hormones are not processed by the kidneys. So there was nothing that made it [necessary to stop them]but that was the first thing that was done,” he said.
Whitely has since transferred his care to the University of Pennsylvania, which he described as “awesome [with] wonderful trans-able care”.
An increase in the number of people coming out as transgender has led to increased use of hormone therapies, which help to change the body’s physical properties towards a certain gender.
But as Whitley found out, misunderstandings and knowledge gaps abound about its impact.
While hormone therapies are best known today for their use in contraception or to manage symptoms of menopause in cisgender women, they have been given to people undergoing gender reassignment for decades. The German doctor Magnus Hirschfeld was one of the first to offer such medication to his patients at his Institute for Sexual Research in Berlin, which he opened in 1919.
Many people who are trans say such “cross-sex” or “gender-affirming” hormone therapies are crucial: to allow them to live in a way that makes them happy and significantly reduce the risk of depression and suicide.
However, their use in younger people with gender dysphoria is controversial, not least because of their potential impact on fertility and the irreversible changes they can cause.
Until recently, gender-affirming hormone therapies in England could be given on the NHS after the age of 16, and individuals had to drugs known as puberty blockers for at least a year.
Puberty blockers interrupt the physical changes associated with adolescence, but have themselves been a key focus of concern when it comes to the medical treatment of children with gender dysphoria because of questions about their safety and clinical effectiveness.
New rules released by NHS England this month means puberty blockers will no longer be used in treatments for under-18s with gender dysphoria, except as part of a clinical trial. A spokesman for NHS England said changes to the cross-sex hormones policy were being finalized in light of the new rules.
But away from the public debate over who should get hormone therapies and when, growing numbers of researchers are beginning to delve into their impact on the body in an effort to improve health care for trans people—and for the broader population.
For transmen, hormone therapy usually involves taking testosterone – allowing the growth of facial hair and a deepening of the voice, among other changes – while for trans women means it typically takes oestradiol, which promotes the growth of breasts and an increase in body fat.
While such medications are known to change outward appearance, it was unclear how they might affect other aspects of the body — from the way internal organs work, to blood pressure and even risk factors for disease. And this is not only true for trans patients.
“Regardless of the type [hormone] therapy and who uses it, we actually surprisingly don’t know much as a healthcare profession,” says Dr. Sofia Ahmed of the University of Alberta, who is looking at the impact of hormone therapy on kidney and cardiovascular health in transgender people.
“Using hormonal contraception, for example, we know it prevents pregnancy, but we have a limited understanding of how it affects kidney function, blood pressure, cardiovascular health—and that goes for really any kind of hormone therapy.”
For trans people taking hormone therapies, medics have expressed particular concern about standard “healthy” ranges for measures such as blood pressure, kidney filtration rate or liver function.
These ranges are known to differ between cisgender men and women, but they are unclear what a “healthy” range is for trans men and women taking hormones – a situation that doctors said could put trans patients at risk of receiving the wrong dose of a medication, diseases being missed or even conditions being misdiagnosed.
Among those trying to solve the problem is Dr Devon Buchanan, a clinical scientist with Synnovis who is running a trial based at King’s College Hospital which started in April 2021 and involved 240 trans and non-binary recruit people.
“We know that those ‘normal’ ranges are affected by gender-affirming hormone therapy that many trans people take and is very important to them,” she said.
Many previous studies were small and the results unclear. “We wanted to cover a wide variety of tests and also have a larger sample size so we could be more confident about the results,” Buchanan said.
Studies have also suggested obesity rates in trans people are higher than among those who are cisgender, but the reason for such disparities is unclear. Dr. Sascha Heinitz from the University of Leipzig investigates the effects of hormone therapy on eating behaviour, metabolism, energy balance and the cardiovascular system in transgender people.
He and colleagues follow 20 trans men and 20 trans women, and the same number of cisgender participants, over a period of two to five years.
“We [are] just try to understand [whether]during gender-affirming hormone therapy, [are] there are any changes going on that increase the risk of developing these diseases,” he said.
Even if evidence points to a greater metabolic risk in individuals receiving hormone therapyas some research has suggested, further work will be needed to investigate to what extent this may be due to the body’s physiological response to therapy, changes in experiences of gender dysphoria, or behavioral changes around food consumption, Heinitz noted.
Also in Germany, Dr Sofia Forslund-Startceva from the Max Delbruck Center in Berlin and colleagues are conducting a clinical trial with 200 transgender people to investigate whether risk factors for cardiovascular disease related to changes in the composition of the gut microbiome what is known in cis men and women emerge as trans men and women take hormone therapy.
“By doing this, we can both learn more about the mechanisms underlying health disparities between cis men and cis women, and learn more about when and where and for how long in transition a trans person [is] be treated better than someone of their reassigned gender from their birth assigned gender,” she said.
Such research may also help achieve personalized medicine by providing insights into the relationship between health and changing levels of various hormones.
For example, risk factors for various diseases are known to increase among postmenopausal cisgender women, who have lower estrogen levels and higher levels of hormones known as FSH and LH compared to those who are younger.
“Where I would like to see it go, both in cisgender medicine, in intersex care and in trans care, is perhaps to recognize the importance of sex and gender in medicine and health care,” she said, adding “masculinity ” and “femininity” can exist in varying degrees in individuals.
In other words, given levels of sex hormones can undergo a profound shift over an individual’s lifespan, whether cisgender or transgender, understanding their impact can have important implications for everyone’s health care.
Work in transgender health is still a relatively new field, and funding can be a struggle, as can recruiting a meaningful number of participants who are representative of the community.
And research doesn’t happen in a vacuum: around the world, transgender issues are a hot political and social topic, whether it’s the age at which individuals can access hormone therapy or who can use single-sex spaces.
“It is my experience, also from my outpatient clinic, that there is not only a lack of knowledge, but also a lack of interest, and also people who do not want to treat transgender individuals,” said Heinitz. “I think some people just don’t want to touch the subject because it’s too hot.”
Forslund-Startceva said her impression was not that the subject had been avoided for any fear of controversy. “That said, there may be a reluctance at least on the part of some [who see themselves as trans allies] to approach it as they, as outsiders of the demographic, fear that they will not be able to conduct research responsibly,” she said.
Some advocate the “nothing about us without us” approach, and stress teams without transgender members risk misunderstanding the community they want to work with, end up not asking the best questions to inform their research, and may have problems when it comes. to communicate results in a nuanced and comprehensive manner.
“[The latter] matters when research is weaponized so quickly, because people will hold on to potential interpretations and misinterpretations and somehow use them as culture war tools that can do a lot of damage,” said Forslund-Startceva.
But the value of lived experience among researchers is contested. “You can’t bring in anything personal [the research] except for inter-individual contact, to be kind and nice,” Heinitz said.
“Having transgender individuals in this field is great. Not having them wouldn’t be so good. But I mean, it’s not important that subjects with kidney disease have a study done on kidney disease.”
Despite the challenges, scientists say the possibilities of the new wave of research into hormone therapies are exciting, offering the chance to fundamentally change health care for the transgender community and more broadly. “It has multiple layers,” Heinitz said. “It’s a beautiful field, I think.”
Forslund-Startceva agreed. “We start in the understanding that health and disease risks and responses differ between cis men and cis women, but one cannot easily conflate different components of gender or gender—is it because of lifestyle, hormones, or genetics? “
