A response to Twitter Hormone Callout
This article has been reposted from Liz’s personal Medium.
Transgender people who engage in hormonal therapy lie in the strange nexus of being “here (and) queer”, the idea that we are inherent, normal and okay, but also requiring medical approval (and in some cases court approval) for a range of medicinal and surgical paths that in many cases are necessary and life-saving.
Research into transgender lives and bodies is both predominantly conducted by cisgender scientists (often who publish incorrect and harmful ideas), and rare, leading to a lack of widely available knowledge in areas from statistical data to practical solutions and studies.
This becomes especially harmful when we consider that any General Practitioner (or similar medical professional) can prescribe courses of hormones and infer contraindications based on what may be outdated research, if they are willing to help transgender patients in the first place.
I myself, a transgender woman who has been on hormones for close to a decade, have only in the past year or two felt comfortable to do my own research, ask questions, and make changes to my hormonal regimen to better fit how I want to exist, fearing that this precociousness would earn me a tacit red mark in a system where gatekeeping can make the difference between gaining and losing access to hormones, surgeries and support.
In light of trying to find more information out about the way that transgender people are prescribed and take hormones, on February 28th 2017 I posted a callout to Twitter, asking a group of trans people to self-report their current hormonal landscape. This callout was meant to pose as a first probe into the international state of hormonal affairs, which would then allow the construction of a more rigorous international survey with time.
In this article I will discuss the limitations of the method and data, describe the process, engage in a discussion of the results, and conclude with what the next steps may be.
Language Note: In this article I will be using the term ‘treatment’ in relation to hormonal medication, despite the various connotations of the word. I will also be using the term ‘surgery’ to refer to the range of procedures that have an outcome of removal of the testes, among other end goals, as this has a direct correlation to the hormonal medication being taken.
Collecting the Data & Limitations
In my original tweet (pictured below), I asked DMAB/CAMAB* (Designated Male At Birth/Coercively Assigned Male At Birth) transgender individuals on hormones to DM me a summary of their current hormonal medication and country of residence. Some people additionally responded with their hormonal history and/or their surgical status.
*DMAB/CAMAB is used only at this point in the article to state exactly who I am talking about: transgender people whose bodies currently (or at one point) naturally produce/d a high level of androgens, and for the purposes of this call out, which they have medical interest in arresting.
I don’t consider birth designation to be a particularly useful tool for categorisation, and it is often hijacked to express harmful notions about transgender people by non-transgender people. Additionally, I don’t consider hormones (or dysphoria, for that matter) to be essential or integral parts of the transgender experience, but due to the nature of this article, am only referring to transgender folk who do engage in hormonal treatment.
98 people responded, whose DMs I deleted after collecting the de-identified data in a spreadsheet.
Part way through this process I asked my friend Alex Topfer, who has a background in collection and analysis of medical data, to help with looking at and configuring the data. She also has experience researching hormonal medications from when she was self medicating early in transition.
It’s worth noting that there are a range of limitations of this collection method, but that this was meant to be a wider look at international hormone use, and not a rigorous dataset for study.
Limitations included, but are not limited to:
- The sample consists of people who follow me, or follow people who retweeted my original post, which limits respondents to people on Twitter who are willing to trust me with their medical information.
- By asking participants to describe their medications in their own words, some responses are more precise than others, which limits analysis (this mostly affects the oestrogen data, as it’s far more complex in regards to specificity of drugs, doses and administration methods). Confusion between units was a frequent issue, as was a lack of detail on form of oestrogen taken.
- Additionally, by asking participants to describe their medications, there may be cases of misreporting, which could account for outliers in the data.
- There were more participants on anti-androgens than we would expect, based on comparing our results to the published 2015 Trans survey data. This is potentially due to a Twitter audience skewing younger and/or of lower socioeconomic status, which may affect access to or interest in surgery by a significant margin.
- Specific drug access is highly dependant on national availability and approach.
In summary, as expected the sample is not representative of populations either national or global, but we cannot quantify exactly how. However, the data provided is still interesting and useful for shaping future projects.
Some Initial Graphs
The 98 respondents come from 8 specified countries, with 5 participants not specifying a country of residence.
As an initial overview, of these 98 respondents, the following medications are being taken:
These medications include:
- estrogens (estradiol, estradiol valerate, and ethinylestradiol)
- anti-androgens (spironolactone, bicalutamide, cyproterone, finastride, duasteride and lupron)
- progesterones (progesterone, MPA, and Levonorgestrel)
- and others (decapeptyl)
This is not an exhaustive list of medications used as hormonal medication by trans people, but a reflection of the callout participants. For more details about many of these drugs, Transhealth.ucsf.edu is a comprehensive resource.
All 98 participants reported that they were taking estrogens, of the following kinds:
and in a range of methods including oral tablets, sublingual tablets, injections, dermal patches, and implants, though half of the respondents left the method unspecified.
Doses of both the oral estradiol and oral estradiol valerate were in the following ranges:
However, the ranges of patches and injections respectively, were:
That oral pills are far more regular in the doses calculated, but patches have a little bit more variation is in part because they are used for applying lower doses of estrogen, and varying doses may depend upon trying to find the right balance.
This said, I have colloquial knowledge of GPs prescribing patches as a long-term estrogen solution that has resulted in estrogen levels far lower than wanted or recommended. As with all of these drugs, it is worth (if possible) getting regular blood tests to ensure your hormonal levels are within regular ranges.
There are a great many variables to take into account with hormonal medication, especially as some participants left information out, intentionally or unintentionally.
One such example is that anti-androgens are taken to offset the hormones naturally produced by testes, and the removal of said organ renders anti-androgens unnecessary from that point onwards. While 6 participants noted that they had had surgery, 8 participants didn’t mention any form of anti-androgen, which may be a result of their either not reporting them, not being prescribed them, or not requiring them at all.
Another example is the two respondents who noted that they were currently self-medicating, and two who noted that they used to self medicate, but no other respondents mentioned whether or not they had self medicated either currently or at some point in their lives. As a result, no conclusions can be drawn as to how many of the respondents do or do not self medicate, we can merely point out that four respondents have at some point accessed hormones by their own means.
There are also direct national correlations between certain drugs being prescribed, due to both availability and common national practise. Two commonly visible examples of this are:
- All five respondents who noted they were using a hormonal implant are from Australia, this being due to the availability of an estrogen implant by an endocrinologist in Sydney. When I spoke with him about it, he mentioned he knew less than half a dozen other endocrinologists globally who use implants.
- Cyproterone, a commonly used anti-androgen outside of the U.S., is not FDA certified and therefore not able to be prescribed within the U.S..
Part of the intention of this call out was to be able to see some of these national differences in play so future research would be able to account for the wide range of drugs that are used in hormonal medication.
Discussion
I’ll say this upfront, hormonal medication is complicated.
Oestrogen-based drugs alone can take a great number of forms and can be administered in more than five ways, let alone the wide range of other drugs used for hormone therapy. Additionally, in an ideal medical environment, doctors monitor and remain aware of a trans person’s blood hormone levels and can adjust dosages and drugs accordingly, so while there are recommended dosages published by several groups, they remain recommendations.
Organisations often have their own recommended doses for different hormonal medications, though these are not often posted publicly — in part because these doses are often adjusted in relation to a person’s own body chemistry, a process that is individual from person to person.
The table below from transhealth.ucsf.edu contains a comprehensive scope of multiple medications.
As indicated on the above table under headings ‘Initial-low’ and ‘Initial’, current hormone methodology recommends an initial titration of hormones, that is, starting at a lower dose of estrogen and gradually increasing estrogen intake before introducing an anti-androgen, according to clinical and patient goals and monitoring of hormone levels. This remains a relatively new development, and colloquially I’ve learned that a range of doctors don’t apply this practice.
This process could explain why some respondents reported being on doses of estrogen <2mg (and not reporting androgen usage), but we can also not assume that this process might account for all reported low doses, especially when there are many colloquial reports of people being on doses both lower and longer than they would wish, at the behest of their doctors.
This being the case, it is not unfair to suggest that some of these reported low doses may possibly be due to medical negligence on the part of the practitioners administering these drugs.
Another aspect of this worth discussing is the practice of self-medicating, wherein a person will access hormones themselves (predominantly online), and take them according to either the aforementioned dose guidelines, dosage advice from peers, or a combination of both sources. Why people do this rather than accessing hormones through medical professionals can be because of wait times required before seeing medical professionals, or lack of access to trans-supportive professionals in the first place.
Many sources internationally have shown there to be an increase of transgender people seeking access to health professionals, hormones and surgeries, which in many cases can lead to those longer wait times at a point of high individual vulnerability — the previous link mentions a UK clinic that found 20% of their patients were self medicating when they arrived for their first appointment.
While this dataset does not allow us to draw any conclusions on existing rates of self-medication, it does show that it exists and is something that will need to be taken into consideration by organisations when collecting any future data. Obviously I advise that hormones are best accessed with the help of a medical professional, but there remain valid reasons why someone may not be able to, many of which come down to wider systemic failure of medical infrastructure and education.
In this light, it is also important to address the nature of the medical gatekeeping system as it applies to transgender health, and the nature of such a system being that there are a range of hoops one must jump through (or at least be seen to be endeavouring to jump through). This may result in patients feeling unable to question what may be incorrect advice given by doctors who have little experience with this area, or in patients who don’t fit constructed feminine ideals feeling unable to or uninterested in meeting these hoops and therefore being refused hormonal treatment.
One of the most available ways of helping this is to ensure that trans people who are accessing hormonal treatment have access to information about the drugs they’re using and recommended doses of those drugs being widely available to the public. Another way would be to understand that self-medicating is an approach that will be unavoidable, until access to hormonal medication is as widely available as the people requesting it, and to not see it as trying to work around a functional system, but another result of a sometimes non-functioning system.
What now
If we want, this data provides a small base from which to design a larger survey to collect reliable results. This may be a useful resource to help trans people make informed healthcare decisions.
Any further research will need to be driven by community wishes, and the wider community would need to be involved in the early stages of the design. The benefit of this research being done by trans people unaffiliated with cis researchers or organisations is it can be built to meet the needs of our community, and we can reach people who would not normally participate in research run by cis people. However this requires us to be open and accountable to the trans people participating. Part of publishing this article, while not providing any new information, is part of that accountability, and we want to thank again everyone who participated in this call out and provided information.
The most important thing that we can do from this point is to make sure that transgender people have access to information about their bodies and the healthcare systems that medicate, monitor and (ideally) support them, and it will be the goal of any future projects and research to do just that.
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