Informed Consent

green-lightI walked out of my appointment at Callen-Lorde, on Thursday morning, with a box of 30 packets of 25mg of 1% testosterone gel (Perrigo brand, expires 5/2018) and a signed Informed Consent form.

The week before the appointment I kept flip-flopping. When I walked in, I didn’t know if I was going to bring it up again. I didn’t know if my new Nurse Practitioner even remembered that was why I came in a year ago, when I had my intake with her predecessor, but, right after she asked me how I was feeling, she asked me if I wanted a prescription. I squeaked out “Yes.” She said my blood work looked good, my cholesterol was down, and if I chose to use hormones she’d monitor my progress and work with me.

She took out the Informed Consent form, and quickly ran down the risks: increased cholesterol, increased number of red blood cells, acne, and increased risk of heart disease, high blood pressure, stroke, and liver inflammation. Then she read me the irreversible body changes: deepening of voice, facial and body hair, fat redistribution, and male pattern baldness.

I signed, she signed, and another Callen-Lorde staff member signed as the witness. It took less than two minutes. She asked me if I wanted to set up a follow-up, and I told her that I wanted to wait a while before I started, if I started, and that I’d set something up when I had a plan.

Before I left, I asked her if she had other clients who took low-dose testosterone and how they fared on it. She said that everyone was different, but that it was not uncommon to start on a 1/2 packet (12.5mg) and wait and see what happens and how it feels. The gel is slower and less of a shock to the system than injection. It is matter of personal preference, but she hadn’t worked with anyone who regretted starting.

As often as I’ve read about the risks, I was surprised at how jarring it was to hear them said out loud. I’ve read a lot about testosterone, and rationally I know what I am getting myself into. Hearing the word “stroke” shook me up. I believe in informed consent. I believe that it is the patient’s responsibility to be their own expert. I don’t want anyone else to determine whether I am a good candidate for taking testosterone. I don’t want anyone else to question whether I am trans enough, or whether someone who isn’t interested in a full binary transition should be allowed to start testosterone at all.

I signed the form. I understand the health risks, but I don’t have a good sense of the probability of each risk, or how low-dose affects the probability of each risk, or how my age affects the probability of each risk. I signed the form the same way I click Accept every time Apple upgrades my iOS. I signed with the assumption that if I do start testosterone, and I get regular blood work, then my NP can catch anything before it gets out of hand. I didn’t read the fine print. I hope I don’t have to.

I can’t clearly articulate why I’m thinking about taking testosterone or exactly what I want to get out of it. I know I don’t want to transition to male, but I want to blur the line. I don’t know if I would feel better on low-dose testosterone. I don’t know how my body, hair-line, and voice would respond to it.

When I came home, I put the testosterone in a drawer. I felt a little giddy. Relieved. I was tempted to break out a packet and put some on, but I hadn’t even told Donna, my partner, what happened. The light’s turned green, the engine’s running, but my foot’s still on the brake, and I don’t know if I want to ease off the pedal.

Notes: This set of guidelines from UCSF is one of the few that specifies a protocol for starting non-binary low-dose testosterone. UCSF recommends between 12.5mg and 25mg of daily topical gel to start (or 20mg/week injected). The common starting protocol for trans men is 50mg/week by injection, working up to 100mg/week.

This list of “Things They Didn’t Put on Your Informed Consent Sheet” was written by a trans man after his first year on T and provides more food for thought.

20 thoughts on “Informed Consent

  1. Lesboi

    Well, the toe is in the water, I see. Good for you. What you do now is still up to you but you have the goods should you dare to use them. I think about those risk factors like this, but I’m not an expert: I consider the fact that about half the population of the world is on testosterone in some form or another (biologically produced or manufactured, sometimes a combination thereof) and by choosing to switch from being an estrogen based being to a testosterone based being I’m just swapping one set of risks for another. MTFs that take estrogen are subjected to a similar long list of possible risks and side effects but we’ve had estrogen running through our systems for a long time and it hasn’t killed us yet, though I know it could. If you’re relatively healthy, which it appears you are, your risks are no higher than the average healthy male for stroke or heart attack, high cholesterol, etc. Just my two cents for what it’s worth.

    Liked by 5 people

    Reply
    1. Jamie Ray Post author

      The toe is poised right above the water but at least the water is mine. There are a lot of trade-offs – the risks of transitioning are far fewer than the risks of suppressing my transness and imploding. I’m cautious about the heart risks because it runs in the family – but my cardiologist (who is helping me control my cholesterol) told me that it was safe for me to take testosterone as long as I get regular bloodwork and don’t treat Atorvastatin (generic Lipitor) as a get out of jail free card. In other words, exercise, eat healthy, and don’t drink too much.

      Liked by 1 person

      Reply
  2. sam davies

    Hi Jamie Ray, I began low dose T in February with the gel. Almost immediately, I developed a rash on my labia I would describe as feeling like a case of sunburn, on the lips; pun intended. Stopped the gel. Actually used an antibiotic. I couldn’t tell whether the rash went away due to the antibiotic or because I discontinued the T. Both happened simultaneously. In April, I tried again. Same symptoms. Two weeks ago, I decided to go back on T, this time injecting the lowest dose imaginable. Again, the rash. My PA-C is convinced it’s the oil the T is suspended in.Sesame oil/cottonseed oil are common. I am like you as I don’t want to be male and want to add T to see where it takes me. My body and mind want the experience of it. I wish you the best possible outcome and look forward to reading your thoughts on your process.

    Liked by 1 person

    Reply
    1. Jamie Ray Post author

      Sam, thanks for your note. The rash sounds nasty – I hadn’t heard of anyone having that reaction to gel (I’ve heard a lot of reactions to different injectable forms of T). I’m still very unsure of what I’m going to do with it, but at least now the decisions are on me (Donna has given me an unenthusiastic go ahead for low-dose, but doesn’t want me to go through major binary changes which is ok because that is not what I am looking for either).

      Liked by 3 people

      Reply
  3. A Country boy

    I so admire you , and I wish the hell I knew you way back when I began , you are a very smart and wise person to just take your time, think things through then do what is best for your own self, you took a huge step getting the gel and informed consent , and lining up a doc that will work with you , no small feat to be sure , Kudos to you my friend, be damn proud lot’s of people are not as smart about it as you are…

    Liked by 2 people

    Reply
    1. Jamie Ray Post author

      I’m smarter and wiser now, but if I was in my twenties I’d probably be full speed ahead doubts be damned. Now I feel like a wishy-washy hand-wringing worry-wart. I’m lucky to be in NYC where I can go to a LGBT clinic that uses informed consent and is open to serving the whole trans spectrum. I’m very wary of the traditional authoritarian transgender psych/medical model of transition, and the pressure to look and act like a cis man – which is just not who I am. I’m just trans.

      Liked by 1 person

      Reply
      1. A Country boy

        I really respect you, to me you are doing everything that is right for you so you won’t be stuck 20 years down the road thinking crap maybe i went a bit too far , just keep on doing what works for you, there is no time limits and no phases you must reach in x amount of time… just keep on doing what feels right for you. 🙂

        Like

  4. Cairtheand

    Agree with Lesboi that if you´re healthy you´re not at high risk. In the first two weeks, I did have a quicker heartrate (nothing too fast though) but it ended up stabilizing. Headaches also went away. It´s just like your other kind of medicine I think in the sense that your body needs some time to go through the motions (but you are smart enough to know when something is off or discuss it with the doc…)

    Looking forward to hearing more good news 🙂

    Liked by 1 person

    Reply
    1. Jamie Ray Post author

      Thanks for your support. I’m probably making a bigger thing out of the risks than I need to because for many, many, years I didn’t take any drugs at all – and I have a thing about trying not to take antibiotics, painkillers, and even over-the-counter stuff. So being pro-active about a drug is a big thing for me to do. Mostly if I start I have to stick with being monitored and following up and not ignoring any signs…or any effects that I’m not happy with.

      Liked by 1 person

      Reply
      1. Cairtheand

        I can relate. I take about one aspirin per half a year, only if the pain is quite dramatic. Have managed to stay off antibiotics for a very long time (which is great now that I think about it).

        Liked by 1 person

  5. ayellowcrayon

    Hi Jamie,

    I wanted to ask a question if that’s ok. I’ve followed your blog for a really long time, and apreciste your slow and considered approach.

    Your last post about de-transitioning women has link to other blogs, which I have read and appreciated, but which I have put me in a spin (esp CrashChaosCats) as their blog is so well articulated. A lot of what they are writing about has made a lot of sense to me (interms of why I transitioned, what were the circumstances that lead to it etc) I find that at almost 2 years on T im still looking for answers.

    My question is:you said you aren’t threatened by the stories of women who de-transition, I just wondered where your though process is at with that and how you file away their stories compared to your own?

    Liked by 2 people

    Reply
    1. Jamie Ray Post author

      You ask a really good question. I think some of Crash’s posts should be required reading for anyone considering transition – and I relate to a lot of what Crash says – even though Crash’s trajectory and mine are very different.
      From my perspective the issue is how do I experience and manage my dysphoria, and what is the best way for me to deal with it. I don’t think a panel of doctors and psychiatrists or therapists can decide that – I think it has to be worked out individually (at one’s own pace). I don’t think the medical model that is used (developed in the 1960’s) is a good model for most transgender people. I think there is a whole spectrum of trans and gender-non conforming people out there and telling us that there is a one-size-fits-all way to transition, and that you have to either be a normative woman or a normative man does a lot of damage – and that damage is true whether you try to remain in your birth gender or you go for a binary transition. Crash speaks to the latter damage – and disavows being transgender – and rediscovers feminism and women’s spaces.

      I guess I’m not threatened because I’m fairly sure that I am trans – but I think a binary transition would feel as false to me as it eventually did to Crash. I’m transmasculine, but I don’t think I’m a man. I’m not comfortable saying that the only alternatives are binary transition to male or identifying as female. I tried to be a gender non-conforming female for a long time and I can testify to the damage that comes from suppressing one’s transness. It is really hard to find a way to be authentic in either gender binary. Maybe for me it is sufficient to be open about that and try to alleviate my dysphoria (name change and top surgery) without necessarily trying to “pass” as male.

      Liked by 2 people

      Reply
  6. halitentwo

    I read this several times. As I read I kept saying, “holy shit Jamie!” under my breath. In a Wow, that’s so cool kind of way. I feel giddy for you and I don’t even have a stash of T in my drawer! I can’t exactly say why I think it’s so awesome. I guess I think of you as the brother I wish I had. I appreciate your analytical thoughtfulness and your maturity in not racing to an unknown finish line. I’m teetering on the edge of testosterone myself, it’s nice to be in similar places with someone I respect and admire. Thanks again for sharing your journey.

    Liked by 1 person

    Reply
    1. Jamie Ray Post author

      It is still safe in a drawer! Filling the prescription was not pre-meditated (or pre-medicated) – Callen-Lorde has its own pharmacy and my NP sent the prescription directly to it for me to get it filled – without thinking I went downstairs and picked up the package on my way out of the building. It was a little surreal. But I am a little giddy.

      Like

      Reply
  7. anexactinglife

    I think once the communication with Donna is open, you are ready for whatever you choose to do! I also think that since everyone has some testosterone, by increasing it you are just moving to another point on a continuum, and not necessarily crossing a line (unless you want to.)

    Liked by 1 person

    Reply
    1. Jamie Ray Post author

      I like that perspective – of adjusting the amount of T in my system as opposed to introducing something completely new.
      Because I wasn’t expecting to come home with it, Donna was not prepared for me to spring it on her. And I just blurted it out, without a lot preparation – but better to be open than to hide it from her. As I wrote to Hali, above, it is all a little surreal.

      Liked by 2 people

      Reply
  8. Widdershins

    The thing with intersections is there are more than two options. Turn off the main road for a while, take the scenic route, stop at a truck-stop and have a burger … you get the metaphor. 😀

    Like

    Reply
    1. Jamie Ray Post author

      To match you metaphor for metaphor, sometimes I feel like I am in the middle of a corn maze, and that I am only one turn away from getting out into the sunshine – other times I feel like I’m going to need a machete to whack my way out.

      Liked by 1 person

      Reply
  9. Liam

    Congrats on getting your prescription! Just start taking your T when you feel ready. You’ll know when the time is right for you.
    They don’t have informed consent here, which sucks big time, as I’ve had to wait two bloody years to finally be allowed to go on T. Go figure. And then, when I was finally allowed to go on T, I got put on a low dose (25 mg), which I really didn’t like.
    Looking back, if was probably best for me to start low, as I had the most horrible migraines during the first few weeks, but that was only the first couple of weeks. After that I’ve been absolutely fine. So yes, I have more acne than I ever had in my life, but it’s still not a lot. It’s a little annoying at times, but most of the time I hardly even notice. And I’m absolutely loving what T is doing to my voice.
    I do not like having to apply the gel, though. It is bothersome and irks me. On my next visit to my endocrinologist, I’ll definitely ask her to put me on injections.

    Liked by 1 person

    Reply
    1. Jamie Ray Post author

      Informed consent is a good policy as long as you do due diligence in the research. I think gel is a good way to start and ease into T, but it is slower to absorb and give results – most guys in the US who are going for a binary transition start on injection or only do gel to make sure they are not having an adverse reaction to the T. I’m glad to hear that you are getting voice changes on the gel – since that is what I am most looking forward to. When I read blogs from guys in the UK it seems that they are kept on gel for much longer than in the US – the protocols for starting are different.

      Liked by 1 person

      Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s