The case of the missing guidelines
No treatment plan exists to help those who stop blockers and hormones
*Please note: this article is not intended to give medical advice. The information provided below is meant as a call to hospitals, clinics, and providers to take steps to provide clear, comprehensive and ethical care for those who may choose or be forced to stop puberty blockers and cross sex hormones. Always speak to your provider before making changes to any medications you have been prescribed.*
With rising concern for the impacts of medical gender transition for children and teens, twenty states in the U.S. have passed laws that regulate the use of puberty blockers, cross sex hormones, and surgery in children and adolescents.
Most of these new laws will impact the children and adolescents who have already started treatment with puberty blockers, cross sex hormones and surgery. There are currently no guidelines or recommendations for these patients and families for safely stopping these interventions.
For a number of years, detransitioners have been asking for these guidelines, but to no avail. For example, the Endocrine Society has not published any guidelines, and WPATH removed their detransitioner chapter in the recent Standards of Care (SOC) 8.
Here is the rub: Gender affirming care is based on the belief that medical intervention is necessary to change the body to fit the innate gender identity of an individual, and in this case, a child or teen. Therefore, the established idea is that once a patient starts cross sex hormones, they will remain on these drugs for the rest of their life in order that their external physical characteristics more closely align with their internal identity. This idea is taken so much for granted in the affirming care model, that even when patients experience adverse psychological or physical reactions to medication, clinicians do not discontinue their treatment.
This established idea, however, ignores the reality on the ground. The reality is that many people, both children, teens, and adults, choose to stop treatment with these drugs. Many individuals who detransition stop taking hormones. Many people who identify as non-binary or trans opt to only take these drugs for a limited period. And with the passing of new laws restricting medical interventions for minors, some children and teenagers may be forced to stop medications due to centers closing and legal limitations.
In yet another example of how reckless this entire industry has become, patients and their families have been left to figure this out on their own.
At minimum, the Endocrine Society should release titration guidelines to assist patients in the slow reduction of dosing of puberty blockers and hormones. The American Academy of Pediatrics should release immediate guidelines to pediatricians including both titration guidelines and lab value guidelines. The AAP should also immediately release guidelines to pediatricians addressing the recommendations for the use of birth control for menstrual suppression and guidelines addressing the mental health needs that occur for individuals who are stopping steroids.
With this lack of guidelines, what follows is an overview of basic information about what an individual might consider if suspending treatment, as well as what providers and gender centers should be doing immediately to support and guide the patients in their care.
Puberty Blockers
Puberty blockers are given either through an implant or through an injection.
Implants: Patients with an implanted puberty blocker will need to secure a provider who will remove the implant. Many will choose to leave it in until it has ceased its function (the known timeframe for this is not clear). But these implants should be removed eventually and not left in the body indefinitely. There are risks that the implant can begin to deteriorate over time and can become very difficult to remove, breaking into pieces that require more invasive surgical interventions to remove.
Providers who have implanted a blocker should immediately identify all patients for whom they have implanted a device. Regardless of what state one is operating in.
Hospitals and universities operating (or who have closed) a center should have clear tracking sets and provide guarantees to these patients who have had a device implanted that they will provide the removal when the device has reached its recommended removal date or any time before if so requested by the patient or their legal guardians.
Injections: Some patients will have been provided puberty blockers in an injectable form (not implanted) and will simply have the drug cease to function.
Hospitals, universities, and providers should immediately identify all patients that have had any puberty blocker initiated for gender related care.
These patients should be offered long term bone health care, including bone density screenings, and counseling for bone health.
These patients should notify their future care providers that they have used these drugs for long term monitoring.
Patients should be provided long term follow up care for unknown long term risks.
Cross Sex Hormones- Masculinizing
Based on current data, testosterone is the cross-sex hormone most widely prescribed in gender clinics across the United States. Testosterone is a steroid and as such it is a serious drug. Stopping testosterone can lead to serious complications and withdrawal symptoms. Patients who are stopping testosterone should be provided titration guidelines for the slow reduction of the dosing.
Hospitals, universities, and providers should immediately identify all patients that have been prescribed testosterone.
Patients should be immediately provided titration guidelines for patients who will be stopping this drug. The titration guideline should consider the route of drug delivery (patches, gels, IM injections, SubQ injections).
Titration guidelines should be created to consider the length of time the patient has been prescribed the drug and the maximum dose they were prescribed.
Patients should be counseled on birth control options and menstrual suppression options.
Patients should be offered mental health care. Stopping this drug will likely have withdrawal symptoms that will affect mood and mental health. Testosterone is a known mood enhancer (it gives a boost of energy and changes mood). Patients should be counseled to seek out pathways to treat underlying depression, anxiety, or mood concerns.
A number of individuals who have been started on testosterone will find that baseline issues such as PCOS are still present and might need treatment (testosterone is often prescribed and then PCOS is just ignored).
Patients should also be counseled on pelvic floor pain, pelvic floor therapy options and be advised to consider gynecological screenings. Patients should be instructed to notify future providers of their history taking testosterone (it will have an effect on cervical cancer screenings and even cellular changes in the genital area that should be monitored).
Patients should be offered voice therapy.
Patients should be offered screening for and treatment of other underlying mental health issues, autism screenings and treatment, conversion disorder treatment, borderline personality disorders, ADHD, bipolar depression, and other serious mental health concerns should be provided care.
Patients should be provided long term follow up care for unknown long term risks.
Hospitals, universities and providers should be mandated to identify the patients for whom they prescribed testosterone and should be required to provide follow up resources and referrals. Many of these patients had serious medical care (especially mental health) needs prior to receiving cross sex hormones for medical gender care, and should not be tossed aside now that the easy ‘give em T’ era is closing. They should be tracking and following these patients and they should be provided the necessary long term follow up care.
Cross Sex Hormones- Feminizing
Feminizing hormones are a more challenging area to consider when discussing ceasing their use. In masculinization, testosterone is the only drug that is used, even if its delivery might vary. In feminization, the options are much more complicated and varied.
What many lay people do not realize is that implanted and injectable “puberty blockers” are used into adulthood to reduce the body's testosterone production. Therefore, some patients will be on a combination of blockers and hormones.
The variation of possible drugs being given and their combinations requires that a medical specialist create a plan for suspending treatment and actively monitor it. A general pediatrician should be able to assist in a titration plan to stop testosterone. A specialist might need to remove a blocker and create a titration plan to slowly reduce the combination of feminizing hormones that a patient might have been prescribed. An older adolescent who is on a combination of a blocker and feminizing hormones should not just cease the feminizing hormones while the blocker is still in due to the concerns for the effects on bone health.
Hospitals, universities, and providers should immediately identify all patients that have been prescribed feminizing hormone drugs.
Patients should be offered follow up visits to create a plan for titration and if removal is needed for blocking drugs to be removed.
Patients should be offered similar bone health follow up care.
Patients should be provided similar mental health care as those ceasing testosterone.
Patients should be provided voice therapy.
Patients should be provided long term follow up care for unknown long term risks.
These patients should notify their future care providers that they have used these drugs for long term monitoring.
Closing: A Call for Ethical Care
Hospitals, universities, and providers who are still in the business of giving children and adolescents puberty blockers, cross sex hormones, and surgery should immediately create pathways to ensure long term care for their patients. They should have ways to track and identify these patients within the electronic medical records and they should be creating internal processes to identify, assess, and provide long term follow up and care.
It is not ethical to be starting patients on these interventions without having considered what the long term care needs might be. It is not ethical to continue to start these interventions without having completed a long term risk assessment, and it is increasingly poor legal practice and poor risk management practice at the administrative level to continue to operate in the manner that these centers have been operating.
It is also not ethical to just be in operation one day and shut the doors the next, often without transparency with the patients and their families. Centers should have contingency plans made NOW, in every state. And centers should be discussing these plans with current patients NOW.
Centers in every state have a duty to care for their patients, even if a state has passed legislation ceasing the continued prescribing of puberty blockers, cross sex hormones, or surgery that is not a free pass for centers to just drop these patients into the cold.
Providers should continue to see patients, should create and educate on titration plans for slow reduction of cross sex hormones, and they should be able to quickly scale up the care that they should have been providing in the first place (and some factiously claim that they were all along): true mental health care.
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