A UK forum is encouraging a desperate parent of a trans identified male to seek out DIY hormones, without consulting health care professionals, how is this dangerous advice legal?

[SingleSexSpacesInSchools]

OP "If anyone could help me to understand, I would be extremely grateful. I just want my daughter to be alive and happy in her own skin as much as possible ."

Responses: "diy is reliable and safe, there are communities that will be able to help, and really all it is getting a blood test every now and then to check how low or high a couple numbers are and adjusting accordingly."

Full details here:
https://www.reddit.com/r/transgenderUK/comments/1rw0bac/please_help_parent_to_a_16_year_old/

How is this even slightly legal? The pro anorexia sites were shut down right? The pro suicide?

Did you even look at your own link?

This was your link https://pmc.ncbi.nlm.nih.gov/articles/PMC7894249/

It wasn't one study, it was a systematic review of the literature - all the studies they could find.

"We searched PubMed, Embase, and PyscINFO from inception to October 2018 and updated the search through June 10, 2020, for studies assessing QOL, depression, anxiety, and death by suicide among transgender participants of any age in the context of gender-affirming hormone therapy [20]. We also reviewed the reference lists of previous reviews and hand-searched the International Journal of Transgenderism. Using DistillerSR [21], 2 reviewers independently screened titles, abstracts, and full-text articles. Differences were resolved through consensus adjudication."

And after looking at them all, they concluded that the data was largely junk and proper research was needed.

Which I hope you would agree would mean that people certainly shouldn't be around saying that they're safe and efficacious and people are being 'forced to go DIY' when actually the fact is that people are being duped into 'going DIY' by snake oil salesmen who are lying about the evidence.

I find it absolutely fascinating that this 'medical treatment' that is so precise and clear that young kids can completely understand that it is necessary for their needs is totally invisible to adults. Every time we get a link it goes to something that says the complete opposite!

The guy I know who posted online that they wouldn't give him drugs if there was a problem is a nice guy. I wish I'd been able to help him more and sat down and talked to him about Ben Goldacre and Margaret McCartney who have written extensively about organisations and big pharma getting stuck on an idea without really exploring it properly leading to so really dodgy 'articles of faith' within medicine itself because of a lack of critical thinking and re-evaluation.

This guy had recently had a diagnosis of ND and had also posted about being sexually assaulted.

He breaks my heart.

The idea that I'm hating on anyone is as far from the truth as it gets.

What I see are the massive gaps in understanding and misinterpretation and massive gaps in research. The question for me is why? Why has that been allowed to happen? There's always a reason and usually one that involves lobbying and health care providers deliberately covering their own arses rather than going on the principle of do no harm.

A few years back I went through all the data I could on child birth and individual hospitals. I actually messaged MNHQ explaining my concerns and saying that the data was showing a widespread scandal and that a large number of hospitals were behaving in a way that was likely harming women. You could see it in the data. MNHQ didn't want to pursue it at that time saying they were focused on a campaign about postnatal care which is fair enough. Obviously subsequent developments have shown up issues...

I see the same sort of patterns here with lots of people doing things on little more than trust that doctors know better than they do, and doctors doing it because that's the way it's always been done or because they've got an ideological belief they are following. Rather than the science leading the way. It's not difficult to spot areas of medicine that are being driven by motivations other than evidence based medicine. They are heavily promoted or advocated for. And attempts to question it are aggressively shut down with emotive arguments rather than scientific evidence.

I am where I am on this subject precisely because due process was never done on the use of these drugs, due process has been actively blocked and because all critical questioning has been shut down by men who wear balaclavas and threaten politicians.

you’ve just described my 20 year old male relative. Many of them fit this description almost exactly, don’t they? So vulnerable to exploitation.

The problem there is that you’d expect there to be stark differences in medical issues for a traumatised, anxious, depressed and mostly autistic population than the general population.

This is discussed in the protocol for the puberty blockers study as to why new research is needed rather than a fishing exercise through old data. They say that the gender clinics didn’t even record whether their patients had significant prior childhood trauma before confirming they were trans and setting them on their medical path.

If you don’t know whether a patient has childhood trauma or not, how can you compare their outcomes to a comparable population?

Proper clinical research states in advance what is being looked at, considers confounding factors and tries to control for them. At the very least it records them.

Yes. Into anime. Autistic. Social life all online. All have identical political opinions. This isn't something that is normal if it's a naturally occurring phenomenon.

One link for those who think "they wouldn't prescribe it if it wasn't safe" https://archive.is/Pze1A

I looked at @CassOle link to that one case study. Read ‘locked in syndrome’ and felt horrified. Years ago I looked after a young woman, a mother, who had a stroke with locked in syndrome. It means that they cannot move their body but they are completely cognitively intact. For that poor, scandalously advised young women in the case study now has a lifetime of being immobile thinking about how they wished they hadn’t taken testosterone. It is heartbreaking.

This is a good comparison: One word for those who need to be more sceptical: OxyContin. Purdue Pharma and the Sacklers who ran it spent decades and many millions creating the conditions that enabled them to make billions off the drug.

CSHs and PBs will eventually become another example of how early warnings were ignored along with the many examples listed in this document: https://www.eea.europa.eu/en/analysis/publications/environmental_issue_report_2001_22

Tributyltin
asbestos
DES
benzene
Oestrogenic steroid hormones

All had early warnings that were suppressed or ignored. All because of money. And happening again. Always small groups of people making millions off the distress of and harm to larger groups.

Ironic that social contagion from social media (which makes millions for a small group of men) leads to gender distress in young people and the solution is to give them harmful drugs (thus making millions for a small group of mostly men).

I wonder though whether @TiredOfYourLies will actually take on board the discrepancy between what they have said compared to what has been pointed out as being false. That this poster has made blanket statements that are not accurate and amount to misinformation, particularly in light of side effects of testosterone in female people.

I hope so, in that, I hope that they stop telling any other person that the drugs they personally have chosen to take are safe and effective for all.

There are many many young men like this. A spiral of damage unfolding in real time.

And the education or healthcare professionals who could and ought to help stop the damage add fuel to the fire instead whilst feeling virtuously smug. It’s criminal. And will only stop if it hurts the wallets of healthcare professionals.

What do you think should be done about the lack of evidence? Should the treatment be withdrawn from trans people? Show new studies be done?

Incidentally, I’m getting the impression that you think the ‘gold standard’ clinical trial is some sort of unreasonable expectation, the unicorn of clinical research.

Clinical trials are a basic expectation for all new medications before they are approved for use by the FDA and the EMA. They all have to go through them. So yes, I not only would like to see proper clinical trials, I would expect them.

That cross sex hormones have not gone through them is because their use was established before drug approval laws tightened up massively (e.g. post thalidomide). Homeopathy was the same, that was offered on the NHS in England until 2017 when pressure was put on them to properly examine the evidence, the conclusion was homeopathy didn’t work and the NHS stopped offering it.

As for ‘it would be impossible to design a trial’ handwringing - look at the design for the puberty blocker family of trials. They were quite smart about it.

If there is à lack of evidence that it is safe and effective then the NHS should stop offering it.

If people are saying ‘it must be safe if you can get it on the NHS’ while they are injecting god knows what from internet drug dealers in their bedrooms, then that is a big problem.

For a start, misinformation should stop being spread and the groups responsible for the misinformation should be held accountable.

It should be acknowledged very clearly and very publicly that there is a lack of evidence.

Any clinician who is giving information with links to studies that are weak and misleading should be stopped from continuing to do this and to actually state clearly that there are concerns about the appropriateness of these hormone supplements.

Tbh if the drugs do work you wouldn't expect this group of individuals to be amongst the most troubled precisely because all the mantras about it being magic. Even this lack of good outcomes for a significant number raises its own questions.

I’ve asked you a few times now and you haven’t answered. Do you think quality research should be done to establish if the treatment is safe and effective?

I did answer. I said I would expect them to be done. I don’t think the NHS should be offering unproven medications, particularly if people are then using that as an endorsement of the medication.

Do you think the NHS should prescribe cross sex hormones and puberty blockers to children before quality research has been undertaken?

That’s where your lack of a comparable control group to compare outcomes is an issue.

If they didn’t do a basic baseline assessment of issues, then who are you comparing against?

Exactly this, I don’t know what the desired outcome of gender treatment is, but it doesn’t seem to achieve anything very much.
If you were designing a trial what outcome would you be hoping for? Happiness? You don’t become the other sex, you generally don’t pass, all the other problems with your mental health and neurodiversity and family and employment don’t magically resolve.
It does stack up a load of physical issues on top of whatever is already going on, and surely antidepressants would be better?

Incidentally, @TiredOfYourLies I’m glad that you are sticking around and continuing to engage in discussion even though you are having to accept that some things that you thought are not true. Lots of other people would have buggered off well before now.

As long as the studies are not done on children who cannot consent or on vulnerable adults who cannot consent, then studies should be considered.

However, we already know that there is not just explicit pressure applied but there is now well documented fear within people on these drugs that they shouldn’t discuss their health issues and concerns. So, at this stage, how is that effect countered?

It also needs to be long term tracking, so done in stages over decades rather than just a few years.

The pressure applied to gender clinic patients to not allow their information to be shared for the Cass report easily shuts down impartial reviews by any appointed independent group. And we have had detransitioners be very clear that when they started to seek peer advice for negative side effects from any treatment they were told to stop discussing it and this was before they made any decision to detransition.

By all means, get the studies started and underway, but how does any accurate and full information get collected in this current political climate?

I will admit that I did think the evidence was much stronger and less contested. Reading the study you linked about the potential health issues was a little scary. The studies were still small sample sizes so a proper follow up study is needed.

Even knowing this upfront I still think I would’ve decided to transition tbh. The idea of going back to how I was before is one that scares me more than the potential health issues

Surely the ideal first step would be to try to trace people who have already gone through this treatment to understand what the outcomes have been for them? I find it very curious that clinics which have been offering these treatments are so reticent to share the data they have

People with delusions exist. They will always exist. They have socially & medically adapted their lives. Etc etc.

What we differ on is the actual issue & treatment. You are no more than your biological sex. You may have dysphoria which you’ve managed via various methods but ultimately you live with a mental health condition.

I genuinely hope you stay safe and well.

I think some people are secretly hoping that it will turn out these drugs have ruined people’s lives. I’m rather hoping for the neutral outcome where it turns out they were relatively well tolerated but actually, not taking them has just as good outcomes for future cohorts.