Trans healthcare: We need to talk about self-medication

I am not a doctor. This is written from my own experiences, and those of others I know. This is also written from a Northern Irish perspective, but has relevance across the UK.
This post was written in 2014 and is now out-of-date.

This is the most popular article on this website (as of 25/02/2015). It does not contain any information on how to self-medicate with hormone replacement therapy, sorry.

As a culture, we’re great fans of rules. Regulations and systems help everything run that bit more smoothly while ensuring safety and fair play is achieved as much as possible. Engineering fraud, abuse and acts of stupidity out of systems works in the best interests of the vast majority, and I support the principles behind such restrictions. The healthcare sector benefits from strict regulation and oversight, and for the most part, they serve to benefit patients & protect them from harm.

There are, though, parts of the healthcare system where policy issues cause oversight and regulation to work against patients’ needs and best interests. Although there are larger areas of healthcare that this affects, including mental health, I’m going to concentrate on transgender healthcare.  This is an area that has evolved massively over the past number of years, and one that continues to develop as the medical consensus on progressive treatments & care pathways strengthens. Modern  healthcare provides trans, gender variant and intersex people with comprehensive mental health support, endocrine interventions, access to prosthetics and good surgical outcomes to better align their bodies with their identities, and outcomes improve with every passing year. For the first time in history, trans children have the opportunity to pre-empt puberty and develop the correct secondary sex characteristics in step with, or not long behind their peer group. Of course, it’s dependent on cooperative parents and the luck of the postcode lottery (as all trans healthcare is), but the fact that the potential for early intervention exists is fantastic. Child and adolescent gender services are still lagging behind world best practice in the UK, but they’re miles ahead of what’s existed up until now.

Adult care pathways are becoming more progressive, too, but big problems persist.

The Folks on the Gender Hill

Gender Identity Clinics have a reputation. In times gone by (and still to this date, at some clinics), healthcare providers have required trans people to navigate ridiculous and unreasonable obstacles before being granted access to treatment. Requiring stereotypical gender presentation, being “out” to everyone prior to treatment, “Real Life Experience” (the requirement to change gender presentation prior to treatment, a practice that still exists and puts patients in danger), insistence upon gender-nonconforming career changes, unhelpful mental healthcare and the rejection of patients seen to be “not trans enough” are just a few of the historical problems with GICs. In the past, clinics were places of genuine discrimination based upon gender presentation, and stereotypes and unreasonable gatekeeping were rife. It is largely improved today, but some GICs still participate in a toned-down version of these practices. We have it fairly good in Northern Ireland, and the outright requirement of stereotypical gender presentation is gone, though patients still report the necessity to conform to those stereotypes to get access to treatment. The GIC in Northern Ireland also requires a period of Real Life Experience, though permits treatment to start concurrently with the RLE instead of after it. This is still not ideal, though – there ought to be no requirement for gender presentation change for access to treatment.  Other parts of the UK have it much worse though, with many Charing Cross patients reporting that outdated protocols and stereotype enforcements are still alive and well in the London GIC to this day.

In addition to legitimate problems with GIC policy & practice, the trans community at large tends to propagate rumours at light speed, and as such, a confusing mess of Chinese Whispers leads to misinformation and false rumours being spread about clinics, which can act to scare people away from approaching them. On top of that, the number of adult clinics is relatively low across the country, and many people live very many miles away from their nearest. Indeed, across Northern Ireland, there’s only one GIC, and only one Regional Endocrinology centre that deals with trans patients, and both are in Belfast. It’s an expensive bus journey and a day’s travel from South Tyrone or Fermanagh to Belfast, so the barrier to attend appointments can be a big issue.

If we mix these problems together, we end up with people avoiding clinics or being unable to attend for other reasons. Many patients at the GIC in Belfast save up their benefits to afford to travel to appointments (by admission of the Clinic themselves), and many more can barely afford to make the monthly trips. Due to misinformation in the NHS, many people trying to get referrals to the GIC are sent elsewhere, often to spend long stays in psychology and psychiatry appointments getting nowhere fast. Until very recently, an easily-accessible central resource for info on NI trans information didn’t exist (now, and as such many people simply didn’t know they could address their issues whatsoever, and many GPs to this day still believe Northern Ireland doesn’t have any trans healthcare provisions at all! A lot of people who know the clinic exists avoid it for fear of rejection or being forced to come out, which is a fear that’s not entirely ungrounded. It takes a lot of work to undo bad reputations, and Gender Identity Clinics have their work cut out for them.

Going it alone

When trans people avoid GICs but need to medically transition, we hit a tricky dilemma. Since these people are stuck with no formal medical oversight, they are left to go it alone, quite often delving into the world of hormone replacement therapy by using online guides and crowdsourced information from the trans community. Playing around with your endocrine system isn’t the most dangerous thing in the world, but it’s certainly not something to just jump into. Through using standard hormone regimens and tweaking them to individual circumstances, uncountably many trans people (mostly trans women) who have successfully started and continued HRT with fantastic outcomes, with no sign of other ill effects. Such standard regimens and the basics on HRT administration and sourcing are available abundantly online, and the inherent safety in numbers of people successfully transitioning with DIY hormones make the option more attractive for people considering going their own way. Oestrogen is more accessible than testosterone (as T is a controlled drug), and has until recently been available through mostly-legitimate online pharmacies. Testosterone supply has mostly relied on black- and more dodgy grey-market vendors, leading to higher risks involved and less reliable drug quality.

There are notable health risks involved with self-medicating, and without monitoring hormone blood levels, it’s extremely hard to tell if levels are safe, never mind ideal for the person involved. In addition, self-medicating is far from cheap, and the uncertainty of supply can cause mental health complications, especially if the regimen is interrupted. Online stores advertise “phytoestrogens” widely – essentially plant-derived oestrogen variants. At best, they’re useless, ineffective sugar pills, and at worst they’re expensive pills filled with unregulated, unknown filler materials. Either way, they’re not worth the postage and packaging cost, and they do trans people more harm than good.

Still, we need to accommodate and discuss the needs of people who self-medicate.

Talking about self-medication

As I’ve said, there’s a significant collection of online conversations that continue to guide self-medicating trans people down the best, safest paths as much as possible – recommendations for trustworthy pharmacies, dosage advice, and even foods to avoid to regulate potassium levels if certain drugs are used. Even with the relatively “proven” (though I hesitate to say that) methodologies advised, there isn’t a whole lot of guaranteed safety when people go it alone.

The most recent RCPsych Good Practice Guidelines for Adults with Gender Dysphoria set out the best practice examples for trans healthcare in the UK, and they advise that self-medicating patients presenting to GICs should be prescribed interim “bridging” prescriptions until they get through the clinic’s assessment period, for the sake of the patient’s mental wellbeing and continuity of existing secondary sex characteristics brought on by DIY HRT. Still, the GIC in Northern Ireland requires patients self-medicating to cease their HRT before treatment is provided, which is not in line with any contemporary best practice. It is therefore no wonder that patients who have started HRT on their own don’t feel able to approach GICs for treatment out of fear that they will be forced to throw all their progress away until they’ve jumped through the clinic’s hoops.

In addition to acknowledging that many trans people self-medicate, and accommodating those people in GICs safely, we need to produce resources for people self-medicating, to both help them keep safe in the short term, but also help them arrange safe access to HRT in the medium to long term. Distance, isolation, access to information, financial worries, misconceptions about gender clinics and plain doubt can be massive barriers to trans people entering the healthcare system, and there’s a significant need for better resources.

In Northern Ireland, work is underway to develop resources to present to GPs, to help guide them in dealing with trans patients’ needs, before, during and after their time at specialised gender services. Still, misconceptions and problematic practices are rife, and I hear about GPs having  “moral concerns” about referring to GICs at least once a month. If trans people’s GPs tell them to go away, self-medication is an obvious alternative for many.

The Lesser of Two Evils

Self-medication is often talked about as if it’s the worst thing in the entire world, and those that practice it are often tarred and feathered in discussions around trans healthcare. I wholeheartedly disagree with both, and would suggest that like most things, the majority of people go down the “black market” route for legitimate reasons. A trans person being denied access to GICs by primary care providers may be helped enormously by DIY HRT, whereas not doing anything may be detrimental to their mental health. Whereas it’s true that some people in the DIY HRT community do give awful advice, the majority of advice given is based on the regimens prescribed from endocrinologists and GICs themselves. It’s nothing close to the levels of safety and monitoring accuracy as legitimate monitored HRT is, but to say it’s baseless and not founded in facts is a falsehood.

Some people have no choice but to go it alone, and for others it’s the better of two options, for various reasons. For some people, self-medication can be nothing short of life saving.

What we need to do

We need to create an environment that facilitates all trans people who want medical treatment to find it accessible and timely. That means services outside Belfast Regional and local gender services, even if it’s a trained psychologist/psychiatrist in every large hospital. Regional Endocrinology centres in Foyle. Up-to-date information for GPs on trans issues. The removal of outdated practices at gender clinics, particularly the requirement of RLE and the cessation of DIY HRT before treatment. The acknowledgement that people go it alone with hormones, and the provision of resources that help them into safer care pathways while also keeping them safe in the interim and their HRT supply constant. The further depathologisation of trans identities so that care is available without the high barrier to entry.

In addition to specific trans healthcare improvements, we need better funding for trans groups across the country, better education for those in the sector in trans healthcare issues, and better access to other sex-specific healthcare, such as abortion, cancer screening and fertility treatment.

There’s lots to do. If you’re trans, join your local trans group and make a fuss. If you’re not, ask trans people how you can help.

Hormones for all!

I’m sorry – I can’t advise on how to self-medicate for legal reasons, without exceptions.
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