After my last post I feel it’s a good idea to go over the dangers of doing DIY HRT. I’m sure most people are aware, but it’s one of the things that can’t be overstated. If you’re thinking about DIY then it pays to be aware.
The biggest risk is the product. Without proper certification you have no way of knowing what standards the product is made to, if the ingredients are pure, or if it’s safe to use at all. While they may be as good as licensed pharmaceutical companies you can’t be sure of this and they have no accountability for the product made. Despite what doctors here in New Zealand think, even compounding pharmacies have oversight.
If you have access to a commercial lab you can validate the products, and some people do this, but it’s an expensive option.
Secondly, if you’re taking medication without oversight from a medical professional they may unknowingly prescribe something with a bad interaction. This is unlikely with hormones but it’s definitely a risk.
And finally, it’s illegal, at least here in New Zealand. Possession of prescription medicines without a valid reason (eg a prescription for yourself or your dependant) is an offence, though I’ve never heard of anybody prosecuted for non-controlled substances. Same goes with importing them, though again if it’s not a controlled drug and it’s your first time it probably won’t be severe.
Of course if I do decide to get my own HRT I won’t write about it or where I get it from
Starting my transition journey was pretty easy everything considered, I started later in life and had no (recorded) mental health issues which eliminated a lot of the gate-keeping. It still took four months from telling my doctor I wanted to start HRT to getting it because of Process.
Living in Auckland the main clinic is Auckland Sexual Health Service (ASHS), and as most GPs are not familiar with transgender healthcare they often forward questions to ASHS. ASHS have a very particular view of what transitioning looks like, at least for transfeminine people - you will be binary transgender and aiming for gender-confirmation surgery (even though that’s essentially not available…). If you step outside that box the best you’ll get is “this is our recommended treatment” with no change, the worst is refusal to provide HRT.
Once I started HRT the problems started appearing. It was plain sailing for the first year, I didn’t encounter the problems I hear a lot. I started oestrogen and testosterone blockers at the same time - having no dominant sex hormone is a recipe for depression, and I stepped up to the full dose of oestrogen within a year. I even switched anti-androgens between cyproterone acetate and spironolactone a couple of times before settling on spironolactone without an issue.
Then I wanted to look at progesterone. I know progesterone is controversial, the scant research that has been done on trans women is inconclusive, but anecdotal reports said it has effects I was looking for and as bio-identical progesterone is now available the risk is minimal. The answer I always got was “there is no evidence it has any effect”, which is true but omits that there’s no evidence that it doesn’t. I eventually found a sympathetic GP who’d prescribe it to me, but it was a mission to get there and only oral progesterone is available in NZ (see my rant about Medsafe) which has far lower bioavailability (about 5%) compared to transdermal delivery. Synthetic progestins have better oral availability, but they have other problems.
As part of that I switched to oestrogen patches from pills to give more consistent, and hopefully higher, hormone levels. I was looking at switching to injected oestrogen for better absorption but it turns out that ASHS are using their position to force GPs away from prescribing injections rather than considering patient wishes. ASHS have also instituted an arbitrary limit of 500pmol/L of oestadiol even though many other countries consider 1000pmol/L the limit - or rather levels above this as supra-physiological. This is important as high oestrogen levels are clinically linked to blood clots. My level on patches is around 450pmol/L at the moment.
After a year on patches my skin is getting quite irritated though, and that coupled with the patch shortage has made me consider switching to injections again. Pills affected my liver, so I’d rather not go back on them.
It’s also notable that the only oestrogen for injection sold in New Zealand is oestradiol valerate, which requires twice-weekly injections and has a rather rapid release profile. Other esters like oestradiol cypionate and oestradiol enantate have much longer life and and only need injections fortnightly. See Medsafe again.
So that’s where I ended up. I can’t get the oestrogen levels I’d like on pills, the patches irritate my skin and aren’t available, and progesterone isn’t available in the form I’d like. I don’t want to DIY this, it’s far more risky than the approved medicines, but if they refuse to prescribe and the alternatives are not working what else can you do?
If the specialists who control HRT considered patient wishes rather than their own opinions we wouldn’t have as many people on DIY and I certainly wouldn’t be considering it. I don’t think they should be changing the standard regime, but when somebody asks for injected oestrogen or progesterone then they should follow the informed consent process - let us know the risks and alternatives and make our own decision about our bodies.
I’m going to start a series of blog posts here, hopefully with contributors to show the extent of the problems faced for transgender people in New Zealand. It’s far from the worst place in the world to transition, but we could do so much better.
I intend to cover:
- Lack of access to medications with low risk profiles such as bio-identical progesterone.
- Refusal to consider injected oestrogen even in the face of shortage of oestrogen patches.
- Incorrect dosing of medications with high risk profiles at inappropriate doses, like prescribing 100mg of cyproterone acetate for over a year.
- Requiring people to go on extended periods with no sex hormones.
- Gatekeeping transition with mental health requirements.
- Dismissal of non-binary transition goals.
- Extended wait times for consultations.
- The lack of medical autonomy granted to transgender people.
And what ever else comes my way.
Why?
Hopefully I can get enough voices to get some attention. It’s very hard to find out who makes the policies or give them feedback, so shaking the tree a bit might get us heard. My goal is to improve access to medication options so people aren’t forced to DIY to get the transition they desire.
Contributing to this series
I can’t just tell my own story - that would be boring. I would like to hear from others in the New Zealand community about the problems they’ve faced, or if they’ve opted out of the medical system and are doing DIY hormone therapy. All contributions will be held in confidence, I don’t need your real name if you don’t want to share it.
You can contact me via Mastodon (or other activitypub platforms), @sitharus@cloudisland.nz or @blog@thea.hutchings.gen.nz, via email at transgendernz at thea.hutchings.gen.nz, or via the comment form on this blog (just between you and me, it doesn’t check the name or email fields).