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.