An RN & mum of a trans-identified young adult on perils of off-label cross-hormones as first-line treatment for gender dysphoria

Mumtears is a registered nurse, a wife, and mum of two daughters, currently aged 23 and 20 years old. She lives with her husband of 27 years, the father of her two daughters. She says: “Because of my currently unpopular thoughts, and because of not wanting to cause harm to my family, I feel I need to remain anonymous. I also started a blog a while ago, but- frankly- I haven’t kept it up. I am not very technologically sophisticated. If you want to read what there is in my blog, you can find it at myheartandhope.wordpress.com.” She can be found on Twitter @Mumtears1 and is available to interact in the comments section of this post.


by Mumtears

I have been a registered nurse for 30 years. From childhood, I always wanted to be a nurse. I really feel like being in the nursing profession was a “calling” for me.

While going through my post-secondary studies, studying for my Bachelor of Nursing degree, I recall being taught that, in all conditions, medical and nursing treatments should always begin with the least invasive way to treat that condition. I was taught that this was best practice care for the human body.

I have had many years’ experience working in Acute Care Pediatrics at our local children’s hospital. It was there that I learned that children are not simply “little adults”. Pediatric patients require specific attention and care, due to their rapidly developing minds and bodies. Their bodies and minds function very differently from adults. Medications and treatments are all prescribed based on the child’s body weight. They also cross different developmental stages at different rates on their way to becoming adults.

For the past 7 years, I have been working at a very busy family practice, caring for all types of patients with all types of concerns, from birth to the very elderly. I work with a family physician who also specializes in transgender care and sexual health. I have seen, assessed and cared for countless adult transgender patients. They comprise a combination of male-to-transgender and female-to-transgender patients.

Almost 5 years ago, my youngest (then 16) daughter expressed to her dad and me that she “thought she should be a boy”. That was the day our family life changed in ways we never anticipated. Throughout childhood, our daughter never presented as stereotypically “masculine”. She never outwardly expressed to us any kind of discomfort. She appeared to be mostly happy. A bright spark. She loved to play outside: doodle with chalk on sidewalks, sandbox play, climb trees, ride bikes. She smiled often. She loved building with Lego, playing Polly Pockets and with tiny toy horses. She enjoyed making tiny crafts, including models of people and animals made of Sculpey clay.

She was also very academically smart, reading beginner short novels before entering Grade 1. She taught herself how to tie her shoes and how to ride a bike. With the help of her father, when she was about 8 years old, she built one amazing bicycle from two used bikes purchased at a garage sale. In Grade 4 she challenged a Math unit about fractions and passed the final exam with flying colours, even before the unit began. She was musically advanced, playing beautiful piano tunes at age six, wonderful tenor saxophone solos in junior high. We had her tested for giftedness by a school psychologist. He told us that she was “just below” the gifted category.

We parents did begin to notice some general, social discomfort in late junior high, but we assumed that this was normal teen awkwardness, which can happen during puberty, so we were not concerned about it. We were absolutely blindsided by her proclamation that she thought she would be a boy.

My older daughter never had a temper tantrum when she was a toddler. I thought it was down to good parenting. How wrong I was. When our younger daughter was born, she behaved quite differently from her sister. Different personalities, which was not surprising to us because my husband and I are also very different from each other. Our youngest daughter started having temper tantrums at 18 months of age, which lasted 4 long years. Then, it was like a light switch turned on. Suddenly she realized she could settle her emotions down by reading quietly, alone on her bed. After just over 4 years of a frequently chaotic time, our house and family seemed to be at peace again. It was lovely.

Thinking back to this time in early childhood, I thought my daughter’s gender discomfort might be a similar phase for her. I still think it might be. I pray that, with time and life experience, she will develop an acceptance and comfort about her female body, and a knowledge that being the female sex does not have to place limits on her happiness and what she can accomplish in life.

drawing-testosterone-injectionBefore daughter told us she thought she should be a boy, I had already seen and assessed countless adult transgender patients. They comprised a combination of male-to-transgender and female-to-transgender patients who ranged in age from late 20s to early 50s. I admit that I when I first started working in family practice, I was very naïve about what “transgender” means. I noticed that all of the adult transgender patients I met also had comorbid mental health issues, which had not been fully resolved and, in some cases were severe/debilitating. My professional duty was (and still is) to provide excellent, compassionate nursing care to these patients. My personality is compassionate, empathetic and caring. I learned some of the transgender lingo; for example, “top” and “bottom” surgery. I’ve administered countless testosterone injections. I’ve changed the dressing on the donor arm of a young 20-something female-to-transgender patient who had recently undergone phalloplasty surgery. And now, after I administer these injections, I’ve found myself in the staff washroom, trying to compose myself for my next patient. Watching female erasure (in particular) causes me much sadness, partly due to what is going on with my own daughter. But mostly due to the fact that I am an adult female-born woman.

As I already said—but it’s worth saying again–I was taught that, in all conditions, medical and nursing treatments should always begin with the least invasive way to treat that condition. I was also clearly taught that pediatric patients have smaller, ever changing and rapidly developing bodies and minds, and need to be treated differently from adult patients. I was taught that physical, mental, and emotional development in children is ongoing, well into the early to mid 20s. Because of my knowledge about child development, both body and mind, I don’t understand why the medication Lupron is being given to healthy-bodied children. This medication is approved for use to treat adults with advanced prostate cancer and endometriosis. In children it’s used to slow down precocious (early-onset) puberty. It’s only in the past few years that it’s being prescribed for children who have gender dysphoria. This is an off-label use for this drug and it’s being given to healthy-bodied children even though there has been no research done to determine its safety or efficacy regarding gender dysphoria.

And we know that puberty blockers lead in most cases to cross-sex hormones. Why is the current first-line treatment for gender dysphoria in young, healthy bodies off-label, unstudied cross-hormone prescriptions? Young adult females can go into a family doctor’s office, state “I’m transgender”, and be handed a Rx for Androgel. This is what happened with my daughter, over a year ago. She never filled that particular prescription. However, last week she notified her father and me that she plans to start taking testosterone. She’s in a lengthy queue to be seen by our city’s gender specialist/psychiatrist and is impatient. She gave us no concrete reasons for wanting to start taking testosterone. She demonstrates little outward discomfort when she is in our home or when interacting with extended family.

She had one visit with the same family doctor who gave her the previous Androgel Rx. She told us that he told her what side effects could occur (while reading from a computer screen). She told us that he did not discuss reproductive planning with her, and that he gave her no written information about any of the side effects. She told us that he gave her the prescription and some bloodwork requisitions. This family doctor did not take a multidisciplinary team approach; he acted on his own. He did not refer her to an endocrinologist to check her hormone levels. He did not send her to any mental health professional, who could have assessed her for the source of her discomfort and possibly provided her with other less-invasive treatment options, such as cognitive behavioural therapy. How is the way in which this family doctor gave my daughter this off-label cross-hormone prescription medically ethical? In my province, family physicians can be the primary prescriber of cross-hormones. While using a multidisciplinary approach might be a good practice, it is not mandated. I’m currently trying to find answers via our provincial and national medical associations. The answers I’m looking for aren’t forthcoming.

I know that in no other medical or other health-related case would something like this happen, with regard to the prescription of off-label medications. I’d like to give you another home-based, common-sense example: Young adult child says to parent: “I have a really bad headache.” Think about this. Would it make any sense for the parent’s first response to be, “Your dad has some leftover oxycodone from his recent surgery, which he no longer needs to take- here, have some!”? Of course not. What would make medical/practical sense would be to first check that the young adult isn’t dehydrated. It is known that dehydration can cause headaches. “Try drinking some water and see if you feel better”. That would be the least invasive thing to try at first. If drinking water didn’t help the headache and if the young adult child had no know allergies or health conditions, it would be appropriate to next offer them acetaminophen, dosed per the package instructions. It is known that acetaminophen is a very effective analgesic, with a low incidence of side effects. If the headache persisted, perhaps it would be appropriate to then try a non-steroidal anti-inflammatory, such as Advil. There might be some inflammation in the neck or jaw muscles, causing the headache, which, if reduced, could relieve the headache. It is known that Advil is a mostly safe anti-inflammatory medication, with low potential side effects.

Recently I attended a Medical Education Session, which was held at a recent clinic retreat. The session was about low testosterone levels in adult males and testosterone replacement therapy. What I learned is, that for male bodied patients, the recommendation is that if the testosterone bloodwork result is low, it is important to clearly understand the patients’ symptoms concerns and general health. If the patient’s symptoms are low and the patient is not concerned, then giving the patient a prescription for testosterone is not advised. This is because there are also many side effects that can happen from taking testosterone, which can cause negative symptoms/concerns for the patient–especially if these male-bodied patients also have other health concerns. I learned that this is appropriate safe medical care for male-bodied patients.

I’ve done my own learning about testosterone. The pharmacy companies’ printed drug information about testosterone products states that this medication should not be given to women. It has never been studied in female bodies. Also, there are no long-term studies which indicate safety or a positive result for females who take this medication. Physicians are prescribing it “off label”.

I have been trying to learn as much as I can about gender dysphoria and its treatment. I have read many studies, documents, medical association websites, etc., and continue to do so.

When I learned about the newly recognized “rapid onset gender dysphoria”, I realized that much of its description matched what we were/are witnessing in our youngest daughter. Currently there is little known regarding care or treatments for young people presenting with rapid onset gender dysphoria. And few physicians are even aware of this phenomenon. There has been a dramatic increase, over a short period of time, in the number of teens and young adults who are seeking care for being transgender. And the demographic for which sex is declaring transgender has also changed. There are now more natal females than males with this concern.

With all that I have learned about rapid onset gender dysphoria and current treatments for it, I have more questions: Why are these off-label testosterone prescriptions being given to young healthy-bodied female patients as a first-line treatment for gender dysphoria? Especially since it is known that testosterone causes permanent body changes in female bodies, making it an invasive and irreversible treatment. Why are physicians prescribing these off-label cross-hormones without doing further assessments to ensure that this is the best treatment for their patients? I believe these are reasonable questions to ask. I believe these are prudent questions to consider. It is not transphobic to ask these questions. Many parents are asking questions like these. If you’re a parent wanting to learn more and connect with other parents, you can check out: https://gendercriticalresources.com/Support/index.php


Afterword:

I have recently learned that my daughter has likely started her testosterone prescription already. I found the receipt for it in her room at home, for low dose Androgel, from a pharmacy our family never uses, so I know that she has purchased it. She is currently living away for university, in a city which is a 2-hour drive from our home, studying in an arts program there. She has never told any of our close extended family anything about her gender dysphoria. We all live in the same city and see each other fairly frequently. Our older daughter (a graduate with a degree in Cultural Anthropology) knows and supports her sister’s claims, but that is all.

androgelOur younger daughter had the opportunity over Christmas (two Christmas dinners actually), to tell anyone in her extended family about her plan to start testosterone. She hasn’t said anything to any of them. Nothing about her gender dysphoria. I’m sure that it will be upsetting to many of them. My daughter and I text back and forth. We text about her activities (theatre, parkour). About her classes (she studies hard and gets excellent grades). About her saxophone practice (she recently was accepted into the university’s wind orchestra). I am proud of the person she is. I see so much potential for her to become an amazing woman and I am sad that she wishes to erase her female body. Frankly, I believe that “gender” is a crap concept, which is why I don’t discuss this with her. Ever since she first told us her thoughts, we have been clear in telling her our concerns. It’s up to her to think about what we have told her. We hope that she will undergo some work to understand the source of her discomfort, but we know that the decision will be hers to make. She tells us that she loves us. We have clearly told her that we love her and always will. We financially help support her post-secondary education. We want her to have many good job opportunities. We want her to have a good life and be happy and healthy. I dread her voice changing. I dread seeing her beautiful face change. And I find myself wondering if she actually needs to go through all of this, in order for her to “find herself” and come out the other side. The birth name we gave our youngest daughter means “strong”. I thought this would serve her well. We continue to use her birth name because we have not given up hope. As parents, we were never prepared for any of this. And as a registered nurse, I am very disturbed by all of it.