How To Get What You Need From Your Doctor
A guide to patient self-advocacy when you're trans
I fidget as I sit on the paper-lined exam room bed, my feet dangling.
It’s just another exam room. I’ve been in rooms like these my whole life. My family has a medical background. I was the primary caregiver for my dad when he died, slowly, from cancer three years ago. I know what to do in rooms like this. It’s just another exam room.
Except this one belongs to the guy who I’m hoping will prescribe me HRT.
The door opens, and he turns out to be a short fellow with a beard that peeks out from the early-COVID-era mask he’s wearing and a pronoun pin. The last bit isn’t surprising; this place has a reputation, locally, for being one of the places to go for HRT. If I were standing, I’d tower over him, and I’m not really that tall.
“Hi,” I say from behind my own mask, which I’m deeply grateful for. My beard shadow is horrendous, even though I’m wearing a ton of makeup to hide it and I’ve just started laser to get rid of it.
“Hi, there,” he says cheerfully. “Zoe, right?” I nod, butterflies fluttering in my stomach. “So, here to talk about HRT, huh?” he asks, and suddenly it’s not five or six butterflies but a storm of them. I feel like I’m going to burst.
“Yep,” I squeak out. He settles into a chair next to me and pulls out some paperwork. Side effects, disclaimers, asking a bit about my backstory—blah blah blah. I know these things. Just about the first thing I’d done when I realized I was trans was to dive headlong into the medical literature about hormone replacement therapy.
He’s… talking down to me. Not a lot. Not badly. But I don’t like this sort of relationship with the medical staff I work with. I teach graduate classes on pharmacy research writing. I’m published in the medical research literature.
“Hey,” I say, interrupting him. “Maybe we got off on the wrong foot.”
“Oh?” he asks, clearly a little surprised.
“I know all this stuff. I’m actually a doctor, just a different kind that you are, but I work under the biomed umbrella too,” I say. “I’m looking for someone who’s willing to treat me under the UCSF Standards of Care; they’re a lot more nuanced and detailed than the Endocrine Society or WPATH, with a better standard of evidence. Is that going to be something you’re good with doing?” He blinks in surprise. This, clearly, wasn’t what he was expecting.
“I…” he hesitates for a moment, shifting gears. “I usually do WPATH here, but some of my patients like to go for more individual approaches, so as long as there’s good guidelines, I’m willing to work with you.” I nod, noticing what he hasn’t said.
“I’m guessing you haven’t read the UCSF—University of California San Fransisco,” I correct myself mid-stream, spelling out the name of one of the oldest and most prestigious gender care clinics in the world, “Standards of Care, then?” He shakes his head no, but I see a flicker of recognition at the name of the clinic. “I can get you a link to their online provider portal so you can read them over yourself. Want me to talk you through the nutshell version for starting HRT, so you have an idea of what I’m thinking?” He sits back, considering for a moment.
“Sure,” he says eventually, but there’s a note of skepticism I can’t help but miss. A fair number of doctors get irritated by patients as knowledgeable as I am, preferring to use a more one-size-fits-all approach, and I’m starting to worry that that’s the kind of doctor this guy is. Still…
“A lot of it runs on the same principles as WPATH,” I start off, hoping to soothe his bruised ego. “Just a couple of important differences. First, they endorse a wider target window for levels. Basically, anything within the normal physiologic range for cis women is okay by them. Second, they endorse testing at trough, rather than mid-cycle, because it leads to more reliable test data.” These are important to me, even if they’re not the big ask I want to make of him; the Endocrine Society demands tightly-constrained estrogen target ranges and tests in the middle of a dosing cycle, which often leads to hormone levels well within cismasculine ranges. I want nothing to do with that.
“Yeah, that seems fine,” he says. Good. Time to step up to the next parts.
“Cool,” I agree. “There’s a few options it offers that I’d like to take advantage of too. The first is that they don’t require upward titration of estrogen if a patient doesn’t want it, because that’s not an evidence-based practice,” I break out one of my big guns here, but keep it low-key. Before he can say anything, I continue, “and they recommend a more frequent levels testing schedule than WPATH when we’re working to get patient levels to target zones, because of how quick the half-life on estrogen is. Six weeks instead of twelve is their best practice.” There are a lot of big holes in the research on HRT, and this is one of them; I don’t want to tip-toe my way up to something workable and take a year to get there. I’ve lived thirty-five goddamned years without estrogen. I won’t take another day if I can avoid it, and oral estrogen has a short half-life.
He shifts in his chair. This is one of the more major departures from WPATH. I mentally cross my fingers.
“Six weeks is no problem,” he says, and that, at least, is good. “And we can start you on a stronger dose than I normally start with, but I do want to see how you react to it before we open up the floodgates. Estrogen allergies are rare, but I don’t want to put you in the emergency room if we can avoid it.” Rare doesn’t begin to cover it, but… well, six weeks, and he won’t ever be able to use this dodge again. I take the compromise with a nod.
“Okay,” I say. “One last thing I’d like to do, if you’re okay with it.” He shifts again, and I sense his patience is wearing thin. Inside, I groan. He is that kind of doctor.
“What is it?” he asks.
“I don’t want to do spironolactone as my antiandrogen,” I say, dropping the bombshell and barreling forward before he can say anything. “UCSF observes a number of problematic side effects on transition, particularly with breast development. Boobs are really important to me, and spiro’s diuretic function is going to be a problem with me. I drink a lot of water. I’d rather go with bicalutimide, which UCSF notes as a backup, or ideally just go for estrogen dominance.” This is a bit of stretching the truth; UCSF isn’t exactly wild about bica, but I really don’t want to be on spiro.
“I think I’d like to try a four miligram starting dose of estrogen for you, and we’re going to go with spiro,” he says firmly.
“I drink almost three liters of water a day—” I say, trying to explain that I’ve got a history of kidney stones, and I have to drink a lot more than most people to keep them under control.
“I’m not comfortable starting people off with bicalutimide. There are risks for liver toxicity,” he says, ignoring my request to try for estrogen dominance. “We can talk after your first levels test.” Risks, yes. Long-term risks, which aren’t relevant because I’m going to be fighting for estrogen dominance… but it’s clear I won’t win this fight.
Three and a half weeks into HRT, I call his office, sobbing because I haven’t had a full night’s sleep in weeks—I’m up to pee three or four times a night on the 200 milligram per day dose of spiro he’s slammed me with, and I’m so tired I feel like I’m dying. Begrudgingly, he lets me stop and prescribes me the bicalutimide I asked for in my first visit.
As we continue forward, it becomes clear that he never read the Standards of Care I asked to be treated under. Nine months after my first dose of estrogen, I find a new prescriber. She has no problem letting me direct my own care. Things get better, and fast.
Coming to patient self-advocacy
Patient self-advocacy first got taken seriously in the 1980s, and like so many parts of modern life, we owe it to members of the disabled community, who wanted a greater say in their own care. Afterward, it expanded into cancer treatment and chronic pain, and from there to pretty much all of medical care, because patients who are able to have their stories heard, listened to, and acted on have much higher quality of life, a reduction of the severity of their symptoms regardless of what causes them, more effective use of preventative healthcare options, more effective medication, and improved surgical outcomes.
In short, when we can have our needs and stories heard and acted upon, almost every single medical outcome improves, no matter what disease, illness, or condition we’re talking about. It’s a pretty big deal.
But it’s not easy. It takes a lot more effort for a doctor to work with their patients than it does to simply hand out pronouncements, so a lot of physicians aren’t a terribly big fan of patient self-advocacy, especially since the overlap with nonsense like anti-vaxing is pretty big.
And the thing a lot of patients who want to be effective self-advocates miss is that it takes more effort on our parts to be an effective self-advocate as well, because we need to effectively educate ourselves so that we can actually be an equal in the decision-making process and not just be an irritation. After all, the “I googled my symptoms,” meme comes from that exact thing.
When you get down to it, for effective patient self-advocacy to work, you need:
A doctor who’s willing to collaborate
A patient who’s educated about their own medical situation, and especially their rights as a patient
A patient who can clearly and simply describe what they want or need, and why they want or need it
For both the doctor and the patient to be willing to learn and try new things
If you don’t have any one of those four, all you’ll get is a mess.
The doctor’s side
I’m gonna be plain here: unless you’re a medical professional, your doctor knows more about medicine and biology than you do. There’s a good reason why doctors are the gateway and the gatekeepers on a lot of things. People can hurt themselves pretty badly without someone who knows what they’re doing to keep them safe—just look at the nonsense that’s been going on with ivermectin in the COVID pandemic.
Doctors have a lot of ethical responsibilities, but in the end almost all of them boil down to a single point: their responsibility is to maximize the lifespan of every patient they see. Because of this, doctors are notoriously and understandably hesitant to try riskier treatments of any kind when something that’s usually considered to be safer is available.
But, well, safety is relative, like with my spironolactone. I have a long drive to work. Driving while exhausted? That’s way, way riskier than any of bicalutimide’s side effects. 1 in 103 Americans will ultimately die in a car wreck, and driving tired is the single biggest risk factor for that, even more than driving drunk.
This is why a doctor absolutely needs to be willing to listen, in detail, to their patients, and to give them time, for patient self-advocacy to work. A lot aren’t, because they rush from appointment to appointment in overbooked clinics.
So, when you meet a new doctor, ask them directly: “I’m a patient who self-advocates. Are you willing to work with me in designing my care?” It’s better to part ways early if they’re not.
Your side
I’m gonna be plain here: you know more about your body than your doctor ever will. You’ve lived in your body for decades. You know its quirks. There’s a good reason why patient self-advocacy makes for so many improved outcomes.
After all, as I’ve said in dozens of articles: biology is messy. There are exceptions to just about everything.
A good doctor views an appointment as a chance to learn from you about your unique body and what it does. But, in the same way, you have a responsibility to them to be ready to be an equal participant in that conversation, because for you the meeting is a chance to learn more about the medicine and biology of the body you know. That means you need to do some vocabulary work to get yourself ready.
No matter what condition we’re talking about, there are groups and professionals out there to help get you that education so that you can self-advocate—many of them through your local LGBT+ Center! Better yet, the best medical organizations will have nurse-navigators on staff to help you. As a trans person, this is doubly important, because there are a lot of gaps in what we know, we still use old research that isn’t reliable anymore in a bunch of places, and there are a huuuuuuge number of community myths, especially about HRT. This is very much a situation where both doctors and trans patients are often clinging to myths and superstitions that aren’t supported with data.
To get you up to speed, one of the best things you can do is to actually read the parts of the Standards of Care that you want to use to guide your own care—and there are more than one! For HRT, I recommend the UCSF Standards of Care, which are easier to read than most… even if they’re a bit dense and dry in places. Sorry about that, but there really isn’t anything for it. There’ll definitely be confusing language in any medical document you read (again, unless you’re a medical professional), but a search is just a tab away, and can help you pick up that language. More, it’s okay to pick and choose the parts that apply to you, and if you don’t understand what you’ve read, it’s okay to bring those parts as questions to your visit with your doctor. If you’re transmasculine, you relly don’t need to read about antiandrogens, do you?
The second thing you need to do is set aside—at least, for the doctor’s appointment—the things that other trans folks tell you about a lot of your care, but which we don’t have evidence to support. Some of them might be true. There are studies going on right now to try to find answers about a lot of those things, but we don’t have those answers now. At the same time, you’ve got to remember your doctor’s ethical responsibility to, first, do no harm. You don’t want to end up the trans equivalent of an ivermectin-user, and they can be legally liable if you do.
In simpler words? Progesterone might have something to do with breast development, and finasteride might slow down bottom growth for transmascs, but right now we’ve got zilch in terms of research data to support either of those ideas and decent evidence that says they don’t. There are a lot of other things the trans community says about HRT that’re just like that.
In short? Speak your truth clearly and proudly, but also be ready to listen.
The third thing you need to do is understand your rights as a patient. These change a lot from country to country, so you’ll have to look up your own, but the United States’ patient rights, for instance, are mostly part of doctors’ own codes of ethics. Some of them have been written into law, but most are ethics items. There are a couple in there that are common everywhere, though, and I want to point them out:
[Patients have a right:]
To receive information from their physicians and to have opportunity to discuss the benefits, risks, and costs of appropriate treatment alternatives…
To make decisions about the care the physician recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.
Emphasis mine. This means that you have a right to ask for other options if you don’t like what the doctor recommends, and to have that request respected—unlike how my first HRT doctor didn’t respect my request to not be prescribed spironolactone.
And you always have the right to say no to a medication you don’t want to take.
To obtain copies or summaries of their medical records.
This means that your doctor should always be willing to tell you exactly what your hormone levels are when you ask. Always. Most countries have written this right into law.
Finally, and maybe the most importantly:
Patients should be able to expect that their physician will cooperate in coordinating medically indicated care with other health care professionals, and that the physician will not discontinue treating them when further treatment is medically indicated without giving them sufficient notice and reasonable assistance in making alternative arrangements for care.
This means that your doctor can’t just dump you. If they don’t want to work with you anymore, or if you don’t want to work with them anymore, they have to help you find a new doctor, and they can’t hold your HRT hostage when they do. A lot of trans folks are scared to speak up when they talk to their doctor because they’re afraid of having their hormones taken away. Let me be clear: if your doctor does dump you or hold your prescription hostage, not only can (and should!) you report them to their licensing organization, you can probably sue them for malpractice.
Cooperation
The last critical part of patient self-advocacy is for both you and your doctor to be willing to listen and learn. New research is coming out constantly, and both you and they are likely to miss something important that new research has found. This can be tricky on both ends, and one of the big reasons why appointments can run longer when you’re advocating for yourself. That’s normal.
Listen to your doctor’s concerns. They’re not just covering their ass. At the same time, your doctor should give equal weight to yours. If you don’t feel like you’re being listened to, say so. It’s their literal job to listen.
After all, biology is messy.
I was very fortunate in my choice of physicians. I needed a new PCP anyway (mine had moved), so my research librarian partner did what she does and found a wonderful physician in an LTBGTQ+ focused practice. I live in a big blue city, so that's a thing. My current PCP is aware of all of the major standards of care for trans patients, and she's willing to work with patients to meet their own reasonable needs and goals.
She uses a six-week testing window when establishing levels or making changes, then longer windows once things have stabilized. She insists on trough readings rather than mid-cycle, and I completely agree with that. She started me on transdermal estradiol, and the patches were great until they stopped working. At that point she gave me options - injections, trying a higher transdermal dosage to counteract lower absorption, or other delivery methods - and let me choose. After a week of waffling, I went with injections.
We also talked a lot about antiandrogens. I had done a lot of research on spironolactone and alternatives, and I wasn't very happy with any of them. The option she suggested was no antiandrogen at all, just going straight for estrogen dominance, only adding an antiandrogen later if that failed. That was absolutely the right call. My T level dropped to basically zero within six months and only bounced back briefly when the patches stopped working.
I'm not an expert in biomedical science, but I do have a math degree and a solid grasp of statistics, and I know how to read a scientific paper when I have to. I've been lucky in that most physicians treat me as a well-informed adult, don't talk down to me, and allow me to make my own informed choices. If they don't, I go elsewhere.
Doc, this was EXCELLENT. Thank you for writing this and for making so many important points accessible to the community. We need more of this.
I wish I'd known some of this at the start of my own HRT journey, and my experience was pretty typical. I waited months to get an appointment with an endo who really wasn't that interested in listening to me or my experience. My lab numbers started changing and he didn't tell me, didn't warn me that a problem was growing. By the time I finally discovered the issue for myself, he decided (unilaterally) to take me off T for an undefined period of time. The withdrawal was horrific and ramped up dysphoria for me in ways I could not have anticipated. Spoiler: I found a new doctor who is more interested in having open conversations with me about my care, and I'm steadily getting back on track. Getting there, however, was brutal.
Informing ourselves is so important, but so inaccessible to most folks. There are access barriers, language barriers, educational barriers, financial/economic barriers... And above it all is this terrifying power dynamic when any of us walks into a clinic to see a physician. I don't know how to solve those problems, but articles like this one are a great start to making that conversation available. Thank you.