Transgender Meds: A Call for Reports
This post is an invitation to report on drugs prescribed to transgender people. These include cross-sex hormones – testosterone for women, estrogen and progesterone for men, hormone-blocking agents like Lupron given to children with gender dysphoria to stop the physical changes of puberty, and other drugs like finasteride, spironolactone and birth-control pills prescribed to manage the transition from male to female or female to male.
We welcome reports from users of all ages and genders, but especially young people. This is a controversial subject. RxISK doesn’t have a position on the larger issues. But we believe the people going through the experience are in a unique position to contribute.
Here’s what we can offer:
- You can file a “RxISK Report” describing your experience, good bad or strange, and get it sent to you as a PDF to share with your doctor or anyone else you choose. It asks about the details of what happened, your medical history, other meds you’re taking, etc. etc. and gives a score which is a rough estimate of the likelihood your problem is related to meds you are on.
- This info goes into RxISK’s database. If you check “Yes,” your (ANONYMIZED) data can be shared with in house in RxISK, but with no-one else without your permission.
- If you check “Yes, you can contact me” then RxISK (and only RxISK) may get in touch to clarify your story, ask if we can use your experience, or put you in contact with someone who might be able to use your experience with your co-operation in a genuine fashion to shed a constructive light on some aspect of transitioning.
- You can also look up FDA adverse event reports on drugs of all kinds, check out our blog and join the conversation.
- We are happy to look at potential blog posts – these can be anonymous – covering an experience on meds or with the services dishing out these meds.
Click here to file a RxISK Report.
Why should RxISK get involved?
The number of people who identify as transgender has exploded in virtually all Western countries – especially among young people. This chart shows the rise in referrals to London’s Tavistock clinic, the NHS’ central youth gender identity service:
The types of young people seeking help at clinics like Tavistock is changing rapidly. Ten years ago, the typical person was a boy (about 2/3 were male) who had shown pronounced “feminine” tendencies in childhood: preferring dolls to toy trucks and dress-ups to sports, and sometimes insisting he was a girl. Studies found that about 80% of such children adjusted to their “natal sex” as they went through puberty, with a majority growing up to be gay or lesbian adults.
Now the gender ratio is reversed, with 70% being girls seeking a female-to-male transition. The ages are changing as well: Large numbers of teens, especially girls, are presenting as transgender who had not seen themselves this way prior to puberty.
Until recently, drugs and surgery were choices facing a small number of transgender people, mainly adults. Only when a child’s longstanding “gender identity disorder” persisted into their teens would clinics discuss physical treatments. For adult patients, most required months of counseling and at least a year of “social transition” to living in their preferred gender role.
But in most countries now the focus is shifting to “affirmative” treatment. This means supporting the gender identity expressed by the patient at his or her first visit, and offering drug treatments as early as possible—for adults, teens and children. A federally-funded study of such treatments in the USA recently lowered their minimum age for puberty-blocking drugs from 13 to nine. Testosterone is offered to girls in their mid-teens with parental approval, along with double mastectomies at age thirteen. For those aged 18 and up, the new standard is the “informed consent clinic,” where patients can receive cross-sex hormones in as little as an hour after reading and signing a statement about the drugs’ risks and benefits.
Testosterone & Estrogen
In late 2016 RxISK picked up a new FDA bulletin that warned of adverse effects from taking high doses of testosterone, as well as withdrawal effects on stopping. It was directed at adult males – athletes “abusing” black-market hormones and men taking prescribed testosterone (for a “Low-T” in middle age syndrome.)
We passed this along on Twitter – and immediately got inquiries about “why no warning for females”? It seemed like a good question. Our initial impression is that this was about testosterone prescribed to women to boost their sex drive (a medically trendy practice a few years ago). But in fact these were girls and young women seeking a female-to-male transition, otherwise known as “transmen.”
Here’s what that 2016 FDA warning said about testosterone’s risks for men:
Reported serious adverse outcomes include heart attack, heart failure, stroke, depression, hostility, aggression, liver toxicity, and male infertility. Individuals abusing high doses of testosterone have also reported withdrawal symptoms, such as depression, fatigue, irritability, loss of appetite, decreased libido, and insomnia.
Transmen have noticed these mood effects even more than those born male. Some feel depressed; others feel a perpetual sense of rage. Many do report feeling extra energy and confidence while on “T”, but may also notice an inability to cry and a general numbing of emotion. Atrophy of the uterus and vagina often leads to chronic pain that makes a hysterectomy necessary after a few years on T. There are also “masculinizing” effects they didn’t bargain for, like severe acne, weight gain, male pattern baldness – and an increased risk of heart disease.
Because this is overwhelmingly a younger group, the long-term cardio-vascular risks are not easy to assess. But a recent American Heart Association conference heard evidence that transmen have at least twice the risk of cardiac events of women who don’t transition – even when exercise, smoking, diabetes and other risks are factored out.
For transwomen taking estrogen and other female hormones, the cardiac risks are better known: Their rates of heart attack and stroke are somewhat higher than natal men, and four times higher than natal women. Cross-sex estrogen treatments can also cause depression, fatigue and muscle weakness. That said, while there are likely a number of premature deaths, there are also a lot of transwomen who appear to do well.
Lupron & Puberty Blocking
Lupron is a drug for which RxISK has already gathered plenty of reports, thanks largely to the efforts of Lynne Millican who runs a Lupron Victims’ Hub.
Lupron’s potentially toxic effects have been reported for the past thirty years by women taking it for endometriosis pain, or in fertility clinics to boost ovulation. Osteoporosis and other bone and joint problems are the most common, leading to disabling pain for many women. There’s also memory problems, depression and fibromyalgia.
Lupron is approved for precocious puberty in children. People given Lupron as children for this problem have reported bone thinning and joint and muscle pain. The effects are similar to those in adult women, and can persist into adult life. And in 2017 the FDA required AbbVie, the makers of Lupron, to issue new warnings about psychiatric side effects (including suicidal impulses and aggressive behavior) and seizures in children.
(In 2002 AbbVie’s predecessor, Abbott Labs, paid an $875 million fine for illegal promotions of Lupron, including outright bribing of doctors.)
Finasteride & Androgen Suppressors
As part of a campaign to raise awareness of enduring sexual dysfunction after antidepressants, isotretinoin (Accutane) and other drugs, RxISK has featured finasteride (Propecia), and had a lot of reports from people affected by it.
When used to treat male pattern baldness in men, finasteride can utterly shut down sexual function – and in a subset of men, this can be permanent. In some people it also causes suicidal depression.
It is also now being taken by born-male transwomen to suppress their natural testosterone. And it’s also offered to transmen to counter excessive hair loss caused by “T” injections. The side effects can be hard to spot when you’re already in emotional turmoil, as this transman found out.
The acne drug isotretoinin, also an androgen suppressor, can have very similar effects.
Then there’s spironolactone, the most common T-suppressor. A problem for transgender patients is that talking about the downsides of their drugs is often frowned on by peers and any criticism of cross-gender treatments can be dismissed as “transphobic.” But even avid transgender activists seem to agree that spironolactone is a nasty drug. One young transwoman found the effects so bad that surgery to remove their testicles seemed like a much milder alternative.
Drug Combinations
It’s here that gathering RxISK reports may do the most good. Many young people who arrive at gender identity clinics have previously been diagnosed – possibly inappropriately – by someone as Autistic Spectrum or ADHD. Others have faced traumas like severe bullying, sexual abuse or parental loss. As a result, many are already on medications for depression, or anxiety when they arrive at the gender clinic.
Antidepressants reliably interfere with sexual function. Who knows what their effects might be on youth who are just starting to sort out their sexuality? What are the effects of combining antipsychotics like Abilify or Seroquel with Lupron, or testosterone? How about anticonvulsants taken as “mood stabilizers” with finasteride or spironolactone?
One doctor has boasted of seeing young patients “go from four psych meds to none” after a successful gender transition. How common is that situation? Would that doctor have noticed the trans-person who was once on nothing and is now on a bagful of meds?
Knowledge is power
Recently we’ve heard from a growing online community of young de-transmen who have “de-transitioned”. Most were on testosterone and other drugs; some had surgery. They’re pretty angry at the clinicians who, as part of a gender transition is a one-size-fits-all solution to your problems package, sold these drugs as utterly safe.
There are also parent activists: some of these are critical of the whole youth transgender trend, others just wondering why no one knows anything about the long-term health effects. Concerns about the lack of knowledge about the drugs cannot easily be dismissed as transphobia – in April, five longtime clinicians at the Tavistock Clinic resigned to protest what they saw as an overuse of hormones and puberty blockers in children who might simply be lesbian or gay.
Transgender people themselves, who clearly can’t be dismissed as transphobic, have questions too, as some of the links in this blog make clear.
We hope RxISK can be a place where people can report their experiences with meds, without having to declare themselves as pro- or anti-anything.
Pretty well no-one who reports experiences on meds to regulators, doctors, academics, medical journals, or governments is ever validated. This failure to validate sells everyone short.
One of our recent contacts said “more knowledge, when making big decisions, is hardly ever a bad thing”. Information however is not the same thing as knowledge – validation turns information into knowledge and power. When it comes to validating experiences on meds, this is where RxISK aims at being different.
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According to multiple news outlets in the USA, “answers” to thorny questions about youth gender transition and long-term health are on the way. The National Institutes of Health has given $5.7 million to four academic medical centers to study the question.
But somehow, this news doesn’t reassure me. And it makes me think independent efforts to get a grip on the facts – like RxISK – are sorely needed. The reason? Well for starters, all four clinic directors (in San Francisco, LA, Chicago and Boston) are already major public advocates for medical gender transition for kids at ever younger ages. They’ve already announced that their study will “examine the impact” of drug treatments on kids’ overall well-being … but will also “document the safety” of these drugs. It sounds like they have their minds made up, and may be building their careers accordingly.
This article on one young patient at the Chicago clinic really blew my mind:
“Born as David, Diana is male-to-female transgender and one of about 200 patients Dr. Garofalo sees at the Lake View clinic … In Diana’s case, for much of her childhood, she didn’t even realize she was transgender. She had identified as gay. It wasn’t until she was 12 and saw an episode of Oprah about transgender women that she realized her situation was more complicated.”
“She asked her mom to make an appointment with Garofalo. The doctor immediately put her on Lupron … ”
Whoa. Mind you, I wouldn’t try and tell kids like this who they really are, or what they should do with their lives. And I wish them well no matter what path they take. But whatever is going on with Diana, it does not exactly sound “biologically hard-wired in the brain” to me. And whatever the doctor thinks he’s doing, it sounds very reckless and one-size-fits-all. If Diana does run into trouble on this journey, I doubt we’ll hear about it from Dr. Garofalo.
https://www.chicagomag.com/Chicago-Magazine/June-2015/Doctor-Rob-Garofalo/
Difficult territory; online transgender clinic …
Why do GPs have to prescribe for gender dysphoria?
29 June 2016
GPC warns the regulator’s demands could force GPs to treat outside their competence, Jaimie Kaffash finds
http://www.pulsetoday.co.uk/your-practice/regulation/why-do-gps-have-to-prescribe-for-gender-dysphoria/20032145.article
GPs should initiate hormones in patients with gender dysphoria in specific circumstances, the GMC has advised.
The regulator said GPs should be capable of initiating treatment to mitigate a risk of self-harm or suicide where a patient is already self-prescribing with black market drugs and continue to prescribe as part of shared-care arrangements.
Ongoing row
It is the latest in the ongoing row over GPs’ role in treating transgender patients, which has been brought to the fore after NHS England refused to designate the treatment of people undergoing gender reassignment as non-GMS work in service specifications drawn up for commissioners in June 2015.
The service specifications said GPs would be expected to provide ‘bridging prescriptions’ for hormone therapy and carry out safety monitoring procedures, interpreting blood test results and hormone levels – which NHS England said was the ‘non-specialised’ element of the pathway. This has now been endorsed by the GMC.
But the GPC has raised concerns about this with the regulator, pointing out that GPs should not be initiating prescribing outside their competence, and that the shared-care arrangements stipulation ‘places a worrying expectation on any GP’ to continue prescribing specialist medication.
In response, a letter from GMC chief executive Niall Dickson detailed the ‘exceptional circumstances’ when GPs are expected to initiate medication:
The patient is self-prescribing with hormones from an unregulated source.
The bridging prescriptions are intended to mitigate risk of self-harm or suicide.
The GP has sought the advice of a gender specialist and prescribed the lowest acceptable dose.
‘Not specialist’
Mr Dickson added: ‘We don’t believe providing care for patients with gender dysphoria is a highly specialist area requiring specific expertise.
‘Our understanding is that the same, or similar, hormone medications are commonly used in general practice for treating patients with prostate cancer or endometriosis.’
But GPC chair Dr Chaand Nagpaul told Pulse that GPs should not be undertaking this care.
He said: ‘We don’t believe GPs should be prescribing even in exceptional circumstances, because that is clearly outside of their competence and the guidance, which says patients should be first seen by the specialist.
‘It is unlikely that indemnity bodies will see “exceptional circumstances” to be a mitigating factor should a problem arise from the GP’s prescription.’
He added that the shared-care arrangements mean GPs will be expected to prescribe hormones that ‘are not licensed in patients in this situation’.
Dr Nagpaul said: ‘The more important thing is that the GMC is being highly reductionist in the management of patients with gender dysphoria. It isn’t about prescribing, it is about managing patients who need ongoing comprehensive care.’
The GMC has acknowledged there are commissioning deficiencies, he added, ‘and that is what needs to be tackled’.
How to comply with the GMC guidance
Unfamiliar conditions can seem daunting and imposing, but meeting the new transgender guidance from NHS England and the GMC should be fairly simple for GPs – and, hopefully, rewarding. This is set to become part of routine general practice, with GPs supporting the rising numbers of people seeking help.
Here are five tips on how GPs can manage this group of patients.
1 Gender care is a recognised medical condition with clear treatment pathways recommended by the NHS. The charity GIRES has helped create an online learning resource with the RCGP that can help if you are unsure: elearning.rcgp.org.uk/gendervariance
2 There are high rates of self-harm and suicide among these patients, so refer for specialist care. At the very least, the patient should be referred to their local gender identity clinic (check the NHS website). Waiting times can be as long as four years though.
3 Don’t be afraid to diagnose. Many patients will tell you they have always felt they were assigned the wrong gender. They may be living in their preferred gender role publicly or in private and may be taking hormones they have acquired out of desperation.
4 Don’t forget the drugs used are common prescriptions. The medication for transgender care includes well-known oestrogen therapy used for treating female menopause and finasteride, which is given to men with benign prostatic hyperplasia.
5 Use the everyday skills GPs are good at. This condition causes great upset at home, at work and in public. Patients need a caring and kind approach, and a safe source of prescription medication, and blood tests to monitor hormone levels.
Dr Helen Webberley is a GP in Monmouthshire and runs an online transgender clinic
could force GPs to treat outside their competence – that’s nothing unusual …
Interesting to find Finasteride there, in point number 4, described as a ‘common prescription’ – not a word about possible side effects!
Heads up that the language used in the description above is offensive and may be very unwelcoming to the trans people you are hoping to reach. Calling trans men “women” and trans women “boys” or “men” is super non-affirming. Saying that trans men are on testosterone is much more appropriate than calling them women.
Just hoping to educate about a potential barrier to being of service to the community that you intend 🙂
BBC2 News : Health 22nd July 2019 :- Trangender Treatment : Puberty Blockers Study Under Investigation.
Mostly concentrated on the Tavistock which is being investigated by the Health Research Authority . A snipet – ‘after a year on puberty blockers there was a significant increase in youngsters who had tried to harm or kill themselves.:
The Tavistock had ignored warnings from a study and it seems practiced almost as a law unto themselves – old habits die hard.
Update – legal challenge has been made
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NHS use of puberty blockers legal challenge begins
By Alison Holt
Social affairs correspondent, BBC News
8 January 2020
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Legal action is being launched against the NHS over the prescribing of drugs to delay puberty.
Papers have been lodged at the High Court by a mother and a nurse against the Tavistock and Portman NHS Trust, which runs the UK’s only gender-identity development service (Gids).
Lawyers will argue it is illegal to prescribe the drugs, as children cannot give informed consent to the treatment.
The Tavistock said it had a “cautious and considered” approach to treatment.
Papers were formally lodged on Wednesday by the lawyers for the complainants.
The Tavistock will have three weeks to submit its response, after which a judge will consider the case and decide on the timings of any hearings.
Referrals up
The nurse, Sue Evans, left the Gids more than a decade ago after becoming increasingly concerned teenagers who wanted to transition to a different gender were being given the puberty blockers without adequate assessments and psychological work.
Since then, she says, even younger children are being given the drugs, which block the hormones that lead to puberty-related changes including periods and facial hair.
The number of young people referred to the Gids rose from 678 in 2014-15 to 2,590 in the past year.
Of these 2,590:
more than 1,700 wanted to transition to male
624 wanted to transition to female
most were in their early to mid-teens
171 were under 10
Ms Evans said: “I used to feel concerned it was being given to 16-year-olds.
“But now, the age limit has been lowered – and children as young as perhaps nine or 10 are being asked to give informed consent to a completely experimental treatment for which the long-term consequences are not known.”
‘Too young’
The mother, known only as Mrs A, has a 15-year-old with autism who is on the waiting list for treatment at the Gids.
She told BBC News her child presents to the outside world as a boy but, while she is happy to allow that, she is extremely concerned about the possibility of drugs that are not fully understood being prescribed.
“I’m worried that they will look at her age and say, ‘Well, she still says this is what she wants and therefore we will put her on to a medical pathway,'” Mrs A told BBC News.
“And given her communication of what she feels internally is slightly different because of her autism spectrum, I worry that what she says and what she means are often two different things.”
What are puberty blockers?
They are drugs which can pause the development of things like breasts, periods, facial hair and voice breaking
They can be prescribed to children with gender dysphoria who feel their sex at birth doesn’t match up with their gender.
This is meant to give them more time to weigh up their options before they go through the physical changes of puberty.
Although puberty blockers are described by the NHS as reversible, Gids acknowledges that their impact on brain development and psychological health is not fully known.
Read more: What are puberty blockers?
Mrs A said her child was too young to really assess the potential impact of puberty blockers on the rest of their life, including such things as fertility.
“As an adolescent, what we think will make us happy is not necessarily what will make us happy,” she told BBC News.
“It might help us in the short term – but it might not help us in the long term.”
‘Rated good’
A Tavistock and Portman NHS Foundation Trust official said: “It is not appropriate for us to comment in detail in advance of any proposed legal proceedings.
“The Gids is one of the longest-established services of its type in the world with an international reputation for being cautious and considered.
“Our clinical interventions are laid out in nationally set service specifications.
“NHS England monitors our service very closely.
“The service has a high level of reported satisfaction and was rated good by the Care Quality Commission.”