My journey to considering DIY HRT
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.