Long-term (FTM/NB) hormone therapy: Some key concerns for discussion

The mainstream discussions around transgender healthcare in India has been around surgery – access, cost, perpetual discrimination, botched surgeries, experimentation. Hormone replacement therapies are an equally important area of right to life and health. As a long-term healthcare concern it too requires careful discussion, proper information and systemic changes in the healthcare delivery mechanisms.

In this piece, I seek to highlight three aspects pertaining to long-term HRT for transmasculine and non-binary persons who are on testosterone through intramuscular (IM) injections. They are as follows: a) incorrect nursing protocols in injections; b) absence of vial delivery and costs of self-administration; c) importance of micro-dosing and slow increase in dosage for older transmasculine/non-binary persons.

When speaking of hormone therapy our first thoughts are insurmountable hurdles in simply gaining access to a good endocrinologist, getting a prescription, having enough money to buy adequate hormones, and making sure that a local health centre has a willing nurse practitioner who can give the injection. Indeed, these are the most pressing concerns faced by us on the daily. The solutions to this, namely, declaring HRT as essential under right to life and making all hormones free and subsidized for trans people, educating endocrinologists and nurse practitioners, covering HRT in insurance, and free healthcare for trans people at all health centres are required at a macro level.

There is little research on hormone therapy, and HRT protocols functioning in India with special attention for transgender persons. Two open access papers[1] I found conducted by doctors, seven years apart in two different states (one focusing on trans feminine and another on trans masculine persons), were ridden with poor assumptions, terminologies, and no real solutions or long-term care protocols. The more recent paper (from 2022) stated a need for HRT protocols and standard operating procedures, without offering a meaningful one.

The points I am highlighting here have to do with recognizing HRT as a life-long healthcare concern at the level of hospital care, while focusing on specific issues pertaining to injectable HRT (which is currently the form available for testosterone focused transition) where some of the ‘lesser’ issues are likely to create chronic hazards for trans persons. They are also relevant so that trans persons are not led to conform to the beliefs of doctors and nurses over the sounds of our own bodies, while also placing the responsibility of proper care on the medical establishment.

Incorrect nursing protocols

In most urban centres of India, testosterone is only available (under trade names Sustanon or Testoviron depot) as 1 ml glass ampoules of strength 100 mg, 250 mg and 1000 mg. The best practice protocol for IM injections of testosterone from glass ampoules must include the following:

  1. The ampoule must be carefully broken (preferably partial and outward), while wearing protective equipment
  2. Due to the possibility of glass shards falling back into the medication, it should first be drawn into the syringe using a filter needle that can keep out the glass shards
  3. The injection needle is then to be changed to a smaller 23/25-gauge one (the one usually accompanying the syringe)
  4. In the selection of sites for injecting the medication, there are three options, the dorsogluteal (DG) muscle (or buttocks), the ventrogluteal (VG) muscle (or hips) and the vastus lateralis (outer thigh) muscle. Recent studies have shown that the VG (hip) muscle is the least risky and perhaps best option for IM injections. [With a total of 6 sites (left and right), it is best to rotate the injections across each site to avoid repeated injury, soreness, lumps etc].

There have been adequate studies of ampoule-based drug delivery that highlight the risk of glass shards and particles, especially for those who are receiving drugs through this route for the long term. All nursing protocols available highlight the need for a proper practice of breaking the ampoule and using a filter needle before filling the syringe to keep out the most minuscule (invisible to the naked eye) glass particles[2]. However, in my experience, not only do the nurse practitioners follow any protocol for opening the ampoule, and not use a filter needle, they very often use an open syringe (without any needle) directly placed at the mouth of the broken ampoule to draw the medication.

Because of the nature and constitution of glass ampoules, no amount of expertise or experience can be claimed by nurse practitioners as a sure-fire protection against the hazard of glass particles. And yet, by skipping important steps in the protocol, they are exposing transgender persons on long-term injections to all potential short-term and long-term health risks of glass particle contamination.

One element of this problem is that of poor nursing and medical education and insufficient oversight in practice – a systemic healthcare problem in the country. The second element, specific to transgender persons, is the discomfort and prejudice in the minds of nurses upon dealing closely with a transgender patient and the specific drug, i.e. a hormone not considered life-saving. Even after a period of transition (where the trans person may appear to “pass”), when a nurse looks at the testosterone ampoule they experience discomfort and seek prescription verifications. The doctors regularly make it a point to highlight “gender dysphoria” / “transgender” / “female-to-male” / “transman” etc in their prescriptions, which ends up outing the patient – who is now left with the option of receiving the injections from the hospital attached to the doctor, or risk difficult negotiations with other hospitals that may be physically more accessible. The discomfort and prejudice of the nurses leads to hurried and poor service delivery, including missed steps, lack of taking consent, respecting the privacy of the patient and so on.

Further, despite more than a decade of updated research and studies that show DG (buttocks) injections come with a high risk of injuring the sciatic nerve and blood vessels especially for repeated injections, and also establishes VG (hip muscle) as the preferred location for administering intramuscular injections, almost all nurse practitioners in India continue to provide IM injections through the DG (buttocks) muscle. Even if you approach a hospital regularly, they do not consider multiple sites in the rotations. In order to do this, they would need to take a proper history and understand the frequency of injections, have a knowledge of sites etc. This never happens.

Recent research also suggests that injecting testosterone through the subcutaneous route may also have improved health outcomes and reduced risks. This is the manner in which insulin injections are delivered. Subcutaneous route has also been found to be better for absorption, lowered costs and self-administration, avoiding the accidental nicking of blood vessels, nerves and the like[3]. My attempt to initiate a discussion on this with an endocrinologist, while seeking training for self-administration, was not entertained.

Vial delivery and costs of self-administration

One of the easiest solutions for the problem of glass ampoules would be the widespread availability of testosterone in long storage vials in the market. Testosterone vials (usually carrying 10 ml of the medication in different strengths as small as 50 mg and up to 1000 mg) are not only cheaper than glass ampoules, but without the difficult step of ‘breaking’ the ampoule they not only avert risk of glass contamination but also make self-administration, or home-based administration infinitely easier for transgender persons.

For community shelters, being able to procure and store such vials (and other hormones) can also reduce the costs on individual trans persons.

The inability to procure sufficient ampoules well in advance, a lack of stock at the time of injections, and other hurdles such as travel, prescriptions, or personal crisis can prevent trans people from ensuring the proper and timely intake of their prescribed shot. The availability of vials (with subsidies for transgender persons on life-long HRT) can greatly improve our hormone therapy outcomes, while reducing other health risks as well.

There are also other costs that come with self-administration using a glass ampoule. For one, we have to invest in a proper ampoule cutter, two sets of (filter and administration) needles, and proper medical waste disposal containers. Each type of testosterone ampoule has a different form and hence a different method/pressure to be applied for proper breaking – that can only come with practice and education. There is also the risk of breaking the entire ampoule and losing an entire dose.

Most medical shops rarely stock filter needles (unless they are adjacent to hospitals). Indirect health costs also exist in that the sites for administration has now reduced to two (left and right thigh muscles), with VG self-administration requiring access to a full-length mirror, good hand-eye coordination, proper training and a lot of confidence. Without proper training from a good nursing practitioner or someone supporting you during administration it is not advisable to self-administer through the VG route.

The most important self-administration cost for homeless trans persons on HRT is the availability of a safe, sterile private space for self-administration as well as a trusted health provider nearby in case of emergencies.

Even though there are long-term benefits to good home-based administration of a life-long medication, self-administration of testosterone is not encouraged either by the healthcare workers or within the community. Healthcare workers do not grasp the life-long and life-saving role of HRT in our lives. Because all medical transition is fundamentally seen as ‘cosmetic’, healthcare workers refuse to think deeply in to the nature of their care and intervention and the best quality of life for the patient. Compare this, for instance, with insulin care. Most medical practitioners today promote self-administration and/or home-based administration of insulin. They proactively suggest means to ensure timely delivery of the insulin to the patient’s body.

And yet, they do not take cognizance of the fact that testosterone (or any other synthetic hormone) – as part of HRT – for a transgender person is an essential element in the healthy functioning of their body and its internal ecosystem. Therefore, it must be taken at regular intervals, in the right dose and in the most convenient, safe and cost-effective manner, independent of immediately available infrastructure. Despite requesting doctors and nurses multiple times, especially before travel to unknown places, to train me in self-administration, they mostly refused or evaded the matter entirely.

Self-administration is also an empowering step towards taking control of one’s own body, being able to meet needs in a self-reliant manner, adhering to proper protocols and giving our bodies the respectful treatment it deserves (and has never received in medical establishments). The capitalist medical industry is also invested in charging transgender persons (anywhere from INR 30 to INR 200 per injection) nursing fees – even as all protocols are routinely flouted – which will not be possible if more of us adapt to and practice self-administration.

Within the community, self-administration is generally discouraged due to fear, lack of knowledge, bad experiences from failed attempts and such. In some cases, there is also fear of needles, and other physical or mental health disabilities that prevent embracing self-administration. However, home-based or community-based care would mean that someone is trained and able to administer for those who cannot self-administer. Since most trans people visit hospitals on their own, that is yet another condition that prevents health workers from proactively training for self/home-based administration.

Therefore, even though health providers can actively make a case with pharmacies for introducing wide spread vial-based delivery of testosterone in the market, and push for home-based/community-based safe self-administration of a life-saving hormone, they continue to see each of us as “outliers” with minimal needs, and merely repeat customers who should shell out exorbitant charges and face irregular care with all its potential risks.

Importance of micro, slow dose increase in older trans persons

This section is based largely on my own experience as well as the observation and intermittent discussions on health outcomes with other trans persons who have started testosterone in their very late 20s and early 30s. Even though in many cases people below 18 can be tried as adults in India, they are not allowed to exercise positive self-determination and medically transition. Therefore, most trans people who are able to begin hormone treatments (especially without family, job or other forms of support) do so from their late 20s.

While doctors may make a note of this in their files, because there is an absolute absence of holistic thinking, and a lack of understanding as to the state of our bodies, the trauma, nutritional status, nutritional access, and other variables of life, they may sometimes apply the “global” protocols of HRT on our older bodies or simply proceed with the intention of ‘speedy’ transition. They sometimes also presume, with unfortunate good intention, that hasty results can make up for lost time.

As such, they start us off with doses as high as 250 mg (usually of Sustanon, once in three weeks) at the very beginning. Each body is different, and introducing a hormone that alters the body from inside-out must be a careful exercise – even in bodies that appear to be completely healthy.

A few learnings from my experience. Despite my first endocrinologist wanting to start me off on 200 mg (two ampoules of 100 mg), I resisted and stated that I wanted to start on the lowest dose available (i.e. 100 mg). After the first dose, he wanted to immediately raise it to 250 mg. Again, I refused and for two years I took Sustanon 100 mg. Sustanon, because of its composition of four esters, is usually prescribed once in three weeks. After following this for the first three months, I slowly started taking Sustanon 100 mg once in two weeks. Because of the cost of travel, nursing charges, pandemic and other factors, I trained myself in self-administration and maintained the routine of dosage and frequency for two years, as best possible. After which I had to unfortunately return to hospital-based administration.

Those in my age group with similar co-morbidities [such as vitamin deficiencies (D, B12), experience of homelessness, poor sleep and food schedules, lowered access to nutritious diets, lack of access to mental and physical fitness, substance use and chronic underemployment, and an intact “female” reproductive system producing “female” hormones in the body], who were put on 250 mg, with dosage increased at shorter intervals, reported frequent ill-health, especially bone health (despite being on Vitamin D supplements), uncontrollable changes in the body, and often undesirable changes (such as increased balding), sluggishness, and severely lowed mental health outcomes. Without self-administration or home-based administration, lack of regular access to the drug, they also faced difficulties in maintaining a proper schedule for hormone intake. The co-morbidities, including very often chronic pain, also increased overall health costs.

After two years on Sustanon 100 mg, as I noticed that the changes have plateaued, I switched to Testoviron Depot 100 mg (single ester) once in two weeks, which most studies suggested as better for low dose and short interval intake. This switch changed the pace of transition, without adverse effects to my overall health even though I still struggled with the other co-morbidities. Slowly, I reduced the time interval further to once in twelve days. Thus I went from 100 mg a month, to 200 mg a month, to 200-300 mg a month, gradually over four years, with a change in the testosterone composition at the two-year mark. I am now in an effort to replace one dose to 250 mg, and retain the second dose at 100 mg, thereby taking my monthly intake to 350 mg.

A review of my testosterone levels show good progress and stability, so far. Though I can’t bear costs of reviewing any of the other health variables, listening to the body has allowed to maintain a degree of basic functionality with slow but sure change. This pace has allowed for my body to not discard its overall health, the costs of which I can never bear. Though there are multiple social barriers due to the slowed pace of transition, I have at least been able to reduce adverse health costs at my end. Having returned to hospital-based injections, however, means that all the risks of poor nursing protocols have also now returned.

That endocrinologists haven’t applied much thought to combining carefully observed, individualized HRT, with globally sound administration protocols, is reflected in my interaction with the second endocrinologist. After knowing that I had been on Sustanon 100 mg for two years already, she was first keen on increasing my dose immediately to 250 mg. After repeated refusal I told her to prescribe me Testoviron Depot 100 mg. At the yearly review, after seeing my results, when I asked her if she would now prescribe 250 mg, she said it is unnecessary and that I can continue at the current dose. She too refused to encourage self-administration.

Endocrinologists in different parts of the country have not only been increasing dosages within a short time, they have also been prescribing doses as high as 1000 mg, within 2-4 years on HRT, on bodies that are not Caucasian, privileged, or fully healthy – dealing with severe life situations precipitated by caste, class and transitioning through homelessness and poor living conditions. This not only creates undocumented adverse health outcomes (with long-term impact, not unrelated to earlier mentioned poor nursing protocols as well) but also takes away the transgender person’s control over their body. Research so far has established injectable testosterone HRT as a safe long-term therapy. And yet, why are (mostly marginalized) trans people here on injectable testosterone so often facing chronic health issues, soon after starting HRT?   

It is necessary for community care to extend to these conversations and for us to take into consideration the adverse conditions under which we are seeking transition and change. It is necessary to promote slower change to respect the individuality of our bodies and everything that it has gone through till the point of starting HRT. It is important also because the medical establishment is fundamentally punitive of transition and consciously or unconsciously seeks to divest us from being able to control our bodies and our transition desires.

Slowing it down is a fundamental step towards truly connecting with our bodies, listening to what is happening and how we are feeling through our transition journey. And more importantly, aligning it with the actual resources available with us to take care of our body and its overall health needs through these life-altering changes.

Conclusion

It is important that the healthcare providers and trans healthcare advocates demand for the availability of free and subsidized low dose (starting from 50 mg) testosterone vials in the country, for recognizing HRT as a life-long healthcare concern, and for making sure that trans persons are empowered to decide the dosage and frequency of administration based on their bodies’ responses, health and other relevant factors, with complete access to self-administration/home-based administration. Doctors and nursing staff must not only adhere to proper and updated scientific administration protocols, but also provide information and training for self-administration as standard operating procedure, freely as part of holistic care.

The availability of all of the above is also relevant for transgender persons who may have chronic illnesses or health conditions that prevent them from being able to accept the currently marketed high doses, for intersex persons with hormone imbalances, or intersex persons who need to transition out of the gender they were socialized into but have to observe intake for a significant period of time due to androgen insensitivity, and for non-binary trans persons who only wish for a mild transition. Younger trans persons who wish to begin transitioning while still at home without experiencing sudden changes will also significantly gain from this.

By not including these essential aspects in our healthcare discussions that are central to democratizing transition and health access, we face the situation of transitioning as a life-long sentence of adverse and unrecognized chronic health conditions – giving away our bodies to the medical industry – one onslaught after another, rather than a freeing experience of regaining control over one’s body.


[1] See, Practices for accessing hormone therapy in male to female transgenders in Maharashtra, India (2022) and Outcome and preferences in female-to-male subjects with gender dysphoria: Experience from Eastern India (2016)

[2] See https://academic.oup.com/intqhc/article/33/2/mzab091/6295061

[3] See https://transguys.com/ref/research/subcutaneous-injections

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