One person said she had been using patches (pictured) and pills prescribed by the GP but had not been seeing any body changes (file image). Photo: BMJ
Some transgender patients are turning to the internet to buy gender-affirming hormones, saying they are not getting the support they believe they need from the health system.
They say taking unprescribed hormone treatment is risky, and they would prefer to receive treatment under medical supervision.
Auckland Sexual Health says demand for its services from trans patients has increased six-fold since 2016.
National guidelines for gender-affirming health care have been rolled out to GPs around the country, but some in the trans health sector say work is still needed to upskill many doctors.
'I would just like people to listen to their trans patients more'
Aucklander August Ward had hoped to medically transition with her GP's support but ended up resorting to do-it-yourself hormone treatment.
Ward said she had been using patches and pills prescribed by the GP but had not been seeing any body changes.
She made numerous visits to the GP over a three year period but was still within the acceptable male range for estrogen which was frustrating and she felt desperate, she said.
"So I switched to buying injectable estrogen from the internet, which helped a lot."
In an attempt to find out why the hormone treatment she was receiving from her doctor was not having the desired outcome, Ward said she did some online research.
Treatment guidelines from other countries were quite different to New Zealand's, she said.
"Like they recommend that you have higher estrogen levels in order to achieve the changes that you want."
Ward said her doctor may have been worried about blood clots associated with higher estrogen levels, but she did not believe that was "so much of a risk".
Ward's doctor told her that she was already on the highest possible dose of patches and pills and that estrogen injections were not prescribed for trans people in New Zealand - but that turned out not to be true, she said.
Buying estrogen online was straightforward other than needing to use crypto currency to purchase it, she said.
The hardest part was working out what dose to take and self injecting the hormone, she said.
Ward said she informed her GP that she was injecting the estrogen and although the GP was not happy about it and would not aid her in doing it, the GP did inform her what to look out for in terms of side effects and continued to monitor her hormone levels via blood tests.
Ward felt that injecting estrogen was the right decision for her although she said trans people should not have to resort to using the internet to source it.
Asked what changes she would like to see as a result of her experience, Ward said it would be very easy for GPs and Auckland Sexual Health to prescribe estrogen injections.
"I would just like people to listen to their trans patients more."
'It's really difficult to get in NZ' - Trans on Campus
Avery Zavoda from the University of Auckland group Trans on Campus said it was very common for people not to respond to one or more forms of estrogen that was available to them.
"Because of that they need to resort to injectable estrogen but unfortunately it's really difficult to get in New Zealand and because of that they have to get it online."
More than 100 trans people in the wider New Zealand trans community sourced their estrogen online, Zavoda said.
Those who did source injectable estrogen online were encouraged to talk to their GPs by others in the trans community, Zavoda said.
"Where it does fall down is where the GP does deny the monitoring tests and does deny this oversight ... and that's when it can kind of fall apart, when the doctors tend to just deny it because they don't want to see people doing it."
Some GPs, particularly in larger organisations, were being held back by those who had shaped New Zealand's guidelines on injecting estrogen for trans people, with the guidelines in this country differing from those overseas, Zavoda said.
"Injectable estrogen is technically [and legally] available in New Zealand to prescribe, unfortunately that's not particularly backed up, or well resourced within New Zealand, internationally it is."
Not having that information readily available meant GPs and clinicians often lacked the confidence to do what was right for their patients, Zavoda said.
Funding for the national guidelines sat with Te Whatu Ora, Zavoda said.
It was essential to provide GPs with accessible information about what was available for their patients knowing that it would be backed up nationally, Zavoda said.
Not yet known if injectable estrogen safe enough to include in guidelines - Stephenson
GP Cathy Stephenson, who co-authored the national guidelines around gender-affirming healthcare, said the guidelines were only part of it.
"What we don't yet have is the accompanying education and upskilling of the workforce so that all our GPs feel competent and safe to work in this space."
However, it was coming and Te Whatu Ora was keen and had provided some funding for it, she said.
One of the main points the guidelines outlined was that "the earlier we can provide safe, close to home, gender-affirming care for trans and non-binary people - the better the outcomes", she said.
"The guidelines also talk about using medication that's got a long-established evidence base, and that has been used over many years so that we understand the risks and the safety profiles."
Currently the guidelines did not consider that injectable estrogen fell within that safe level of evidence, she said.
That was probably because injectable estrogen had not been used for many years within the trans community, she said.
"What we do know is that when you first inject estrogen you tend to get very high and often fluctuating levels in the body and they may go well above physiological female levels of estrogen."
At this stage it was not known whether or not that was safe and it was probably associated with an increased risk of blood clots and even of cancers, she said.
Until more was known it was hard to know whether to put it into the guidelines, but it was a rapidly changing field, she said.
"My hope is that over the coming years we will understand more and more about which medications are best and which ones will get the best outcomes for individuals."
