Partner on HRT; side effects are not unwelcome, but complicated. NSFW
November 26, 2020 1:59 PM   Subscribe

This will be NSFW. I can’t stress this enough. Anyways, my (basically-cis F) partner has been on a testosterone replacement regime for about a year. There have been some side effects; nothing major,, but we may be at a bit of a crossroads here.

So, my (mid-30s, mostly-cis F) partner has been on HRT (testosterone) for almost a year now. It’s been really amazing for her in pretty much every way; she’s physically better, has more energy, I’ve seen her mental health improve by leaps and bounds. And the major physical effects have been pretty minimal; but there have been a couple very obvious physical effects; mainly bottom growth, but also subtle masculinization effects like slight facial/body hair, and some slight voice changes. Now, it’s not entirely unwelcome, but her endocrinologist is talking about tapering her off the T (her blood levels are on the high side of normal, but nothing of concern, according to her endocrinologist), and my partner, let’s call her J, isn’t a big fan of stopping. She wants to keep on going with it, she’s ok with the changes (full disclosure, I am too, not that it really matters; but I’ve been nothing but supportive of the whole thing) to the point where she’s looking around for a new endocrinologist. Now, YANHD, nor are you giving me (or her) any sort of medical advice, but has anyone gone through this? There doesn’t seem to be any harm to it, so I’m of the opinion to just let it go, but the last doctor wanted to taper it down.

On the one hand, I’m perfectly ok with everything going on (not that it’s my call; but I’m genuinely supportive, and it’s not any sort of a turn off.) Seeing her mental, physical, and spiritual health blossom like this has been amazing, but on the other hand, I’m a recovering addict, and I know doctor-shopping. I’ve been there (for entirely different substances, but I recognize the pattern), so there’s a little red flag here for me. I’m inclined to not say anything unless she sees a whole bunch of doctors. Am I wrong here? I just want to be supportive, but at the same time, I don’t want to get into an addiction with someone else, when I’ve fought so hard to put mine behind me.

Thanks and love you all.
posted by anonymous to Health & Fitness (25 answers total)

 
So what was the reason the current endocrinologist gave for tapering her off if her levels are not a concern? Are they worried it will eventually begin to cause major problems? Is there a reason why a lower dose can't be an option?
posted by Young Kullervo at 2:28 PM on November 26, 2020 [4 favorites]


Also, I hear you that anything which seems like doctor shopping is triggering to you, but I don't think this is what your partner is doing.

Trying to find a doctor who will listen to you, support you and give you the treatment you need is not the problem. The real problem is that it can be so hard to find a good doctor who will listen to you in the first place.
posted by kinddieserzeit at 2:34 PM on November 26, 2020 [14 favorites]


When you say "the high side of normal", what do you mean? Normal for a cis woman or for a cis man? Do you know why the doctor wants to taper it down?

I've been on testosterone as part of my medical transition since early September, though from what you've described here I imagine I'm on a much higher dose than your partner. When I see my endocrinologist to monitor my T levels, they will compare them to the normal range for a cisgender man, since that's the sort of range I'm looking for in order to experience male puberty. This is obviously different if someone is taking HRT for other reasons than gender transition.

I'm guessing (for now) that your partner's doctor is comparing her levels to those of a cis woman, since it sounds like your partner is still (somewhat) identifying that way and doesn't want to become fully masculinised. In which case, there's nothing wrong with her staying at those levels in terms of her physical health, she's unlikely to end up going into the danger zone of potentially troublesome side effects (extreme mood swings, messed up energy levels, etc) until she's above cis male ranges.

It's difficult to say for sure what's going on here without knowing why her endocrinologist is suggesting she taper down. If it's just because of the changes, then your partner has every right to want control over those and if she's happy with them and fully aware of what she's consenting to (since some of the changes can be permanent), then she should absolutely find a doctor who is willing to support her in what she wants to do. If there's some underlying health issues like high blood pressure or high cholesterol (both impacted by increasing T in the body) or other problems, then maybe it's time to consider what's going on.

Ultimately, your partner is the one who gets to make an informed decision about this. It's natural to be concerned, but I would caution you about using language to do with addiction around this. Testosterone is not an addictive substance, she's not addicted to it, she's just enjoying her body and herself. If her doctor isn't willing to give her what she wants, she has every right to find another doctor who will. And believe me, it is very, very difficult to get a doctor to prescribe a controlled substance like testosterone unless they want to.
posted by fight or flight at 2:37 PM on November 26, 2020 [19 favorites]


I also find it problematic to compare HRT to substance abuse/addiction when it sounds like this treatment has been fantastic for your partner and is not causing any problems.

(Last comment from me. Sorry, I kept hitting post too soon)
posted by kinddieserzeit at 2:37 PM on November 26, 2020 [10 favorites]


fight of flight has given a good answer. I'll also mention that how hormones balance against each other is extremely individual.

I agree with what other people said about there not being enough information here to really comment--we need to know the doctor's reasoning. You don't mention your gender, but if you're a man or a broadly gender-conforming woman, you may not realise the sorts of pressures placed on afab people perceived as gender non-conforming. My concern (which is laden with all kinds of biases from my own experience as a transmasculine person) would be that your partner is experiencing some level of masculinization, however slight (given that you mention changes), and her doctor, consciously or not, is reacting to that and deeming it unacceptable. Or even something as mild as having been taught to taper as soon as possible on the presumption that all patients see masculinization as unacceptable. Particularly she is butch or otherwise gender non-conforming, if she didn't get a clear explanation of why tapering is appropriate at this juncture, I think a second opinion is warranted.
posted by hoyland at 2:58 PM on November 26, 2020 [9 favorites]


I think getting a second or even a third opinion -- from reputable doctors who don't have an agenda and will present any risks evenly -- is completely understandable and probably a good idea.

"Shopping" would mean looking for a doctor who focuses more on pleasing patients than on taking good, balanced care of them; so, I hope your partner will read between the lines of any (legit) reviews she finds.

You might need to come to an understanding about how much risk is reasonable for the improved mood; and how much risk of having a new approach yield a temporary lower mood she's willing to accept for a better long-term solution; and how much work you both are willing to do to find other solutions.
posted by amtho at 3:44 PM on November 26, 2020


Partner is not transitioning to male, right? They should talk to a doctor about the risk:benefit picture. Then if they choose to continue a dose within a normal range, they need to make sure the doctor is aware of their choice. At that point, doc shopping seems like a plan. to be honest, it sounds rather appealing.
posted by theora55 at 3:46 PM on November 26, 2020


I cannot see any downside to doctor-shopping in pursuit of good health.
posted by flabdablet at 7:55 PM on November 26, 2020 [4 favorites]


From the OP:
For clarity:

J is not transitioning. She is happy where she is in the blurred kind of enby space leaning toward cis F. Dysphoria isn’t really a thing here.

Using language of addiction; I apologize if I hurt anyone. Not the intent at all. But it does seem like an addictive thing w/her. She’s 100% all about the effects, and doesn’t want to quit no matter what. Maybe I wasn’t clear enough in the original post, but she is super into the effects of the T. Enough so that when she got recommended to taper down, her immediate response was to go somewhere else to get it. To the point where she’s looking at overseas pharmacies if she can’t find another willing doc. I didn’t mean at all to insinuate that HRT is like addiction, but I recognize that behavior with her. And on the one hand it concerns me a bit, but on the other hand, it doesn’t seem to be hurting anyone, and outside of my concern for this, we have the greatest relationship ever. She’s truly the love of my life, my missing piece. Maybe this clarifies things some? I just want what’s best for us both, now and going forward. And I’ll step out now. Thanks, y’all.
posted by LobsterMitten (staff) at 8:10 PM on November 26, 2020 [3 favorites]


I'm not sure this rises to the level of drug seeking behavior any more than the years of my 20s I spent gynecologist hopping to find someone to give my childless unmarried uterus an IUD, or to prescribe enough birth control I can run pill packs back to back and skip every period for the rest of my days. There is no medical requirement for me to bleed with regularity, and finding doctors who don't have a hang up that a woman's body should be a particular way is my right as an autonomous person.

Bodies are hard. Your partner has a right to find an affirming doctor.
posted by phunniemee at 8:47 PM on November 26, 2020 [12 favorites]


Yeah. FWIW I have a cis female friend who, when she asked doctors about testosterone, had some really crummy experiences. She said they wouldn't/couldn't speak plainly with her about its effects on energy and focus: instead they seemed uncomfortable and talked awkwardly about "side effects." She felt like they were 100% centred on the implications for her femininity, and were confused about why she wasn't too. (And one doctor asked her if she'd discussed the idea with her husband, ughhh.)

So maybe your partner's endocrinologist is starting to gender-police her?, in which case I'd say she is responding totally appropriately by seeking out someone who won't do that.
posted by Susan PG at 9:41 PM on November 26, 2020 [7 favorites]


It's pretty common for doctors to set their standards for testosterone (and other problems, like PCOS) around cosmetic feminine-standard benchmarks like hair growth. I've had some interesting conversations with a friend who was realizing that the definition of pathology doctors were using for her PCOS is basically "makes you look too masculine" and the struggle she had was trying to find a doctor who would actually tell her about the side effects she *cared about*.

Mostly, I just want to say, it seems like the standard you're using for "addictive behavior" is "caring too much". I get this, I use it too - if I get twitchy about not having something it's usually time to take a step back and reconsider. But that reconsideration might turn up "no, I need this, those assholes can't keep me from it".

Think back 20 or 50 or 80 years, or zero years, and imagine someone doctor shopping to get an abortion, or to be allowed to continue on the only nausea meds that worked for their chemo treatment, or to be allowed to keep an out of wedlock baby, and it's obvious that the same behavior is not ALWAYS caring "too much" - sometimes it's caring the exact right amount. Sometimes you listen closely to the doctors and you realize what they are telling you is "I don't care what you want."

Basically: It's OK to care strongly, as long as the thing you care about isn't itself a problem.
posted by Lady Li at 11:39 PM on November 26, 2020 [11 favorites]


I'd suggest finding a physician in you're area who prescribes HRT for transitioning. Then there can be be an honest conversation about what she wants (not to fully transition, but to reap some of the benefits of T on her mind and body) and discuss how to do that most healthily, and that she does feel better and is very comfortable with the changes that have happened thus far.

I think it can sort of bypass some of the gender issues, while letting them focus on what T means for her specifically and the pros and cons of continuing where she is at.

As for doctor shopping, these areas are so rife in discrimination that doctor shopping is almost necessary . And it's not bad to seek out medical treatments that make one feel good mentality, physically and emotionally. Addictive substances have a slightly different component at play. In that in most cases the use is a coping mechanism for something else, and behavior that is detrimental to oneself and others. Of course addiction can be more complicated than that. But, this doesn't seem to fit that pattern.
posted by AlexiaSky at 12:45 AM on November 27, 2020 [2 favorites]


Coming back to this: I'm glad you got some good advice and you're both feeling more solid about things.

I would definitely recommend looking specifically for a doctor who deals with gender transitioning, though keep in mind that you may have the opposite problem -- even among doctors who treat trans people, non-binary folks still face a bit of a lottery when it comes to being treated properly and not just forced along the road to some binary state.

One thing you could do would be to seek out non-binary advocate or social groups in your state and see if there's anyone that they would recommend for this sort of treatment. Word of mouth and personal recommendations are valued highly in the trans community for this reason, it's good to find a doctor who has been vetted by others.

And just to address this concern: she is super into the effects of the T.

It's difficult to describe to a cis person what it feels like to finally have your body match your mental image of yourself. There's a reason that trans people use the word "euphoria"(as in gender euphoria, the opposite of dysphoria) about the changes to our bodies or lifestyles that let us live authentically. I can't get enough of the little hairs I have growing on my belly and my face, I'm constantly examining them and obsessing over them. I suppose it can resemble something about being addicted, but I promise you, she's just happy to be herself.
posted by fight or flight at 2:41 AM on November 27, 2020 [4 favorites]


To the point where she’s looking at overseas pharmacies if she can’t find another willing doc.

Okay, time out. In the US, T is a controlled substance and this is way more illegal than obtaining estrogen without a prescription. Insert all kinds of disclaimers about my own biases, but this makes me think that if J has contact with trans people, she's not in transmasculine* spaces (there's a fair bit of talk in "general" trans spaces about self-medding and essentially zero in transmasculine spaces, and I'm guessing that's where the online pharmacy idea came from).

*For historical reasons, you'll find often FTM in the name of things online and "FTM" was a way bigger tent than people assume now. Likewise, I use 'transmasculine' as a very broad tent (for me, vocab-wise, transmasculine replaced ftm). Anyway, if she has felt like "that's not me, they don't want me", that's a mistaken impression for a lot of places.
posted by hoyland at 4:34 AM on November 27, 2020


Ah yes, I didn't see that!

Obtaining testosterone to DIY is a risky thing to do, not only legally (and it is VERY risky legally - possession of a controlled substance without a prescription can result in a fine and jail time in most states in the US), but because it means she'll be dosing without the overview of a health professional monitoring her levels.

Though this may sound alarming with your substance abuse background, keep in mind that, as hoyland said, some communities online advocate for DIY hormones (given how difficult it is for many people to access them legally), so your partner looking into this route isn't necessarily a sign that she's going off the deep end or anything, just that she might be uninformed.

Ultimately, what she needs to do is find a doctor who will, legally and safely, give her the treatment she wants. This is absolutely possible and obtainable as a goal.
posted by fight or flight at 5:13 AM on November 27, 2020


The description you provided, plus some googling, makes me want to try it. Maybe she just feels so much better that she can't get over it.
posted by theora55 at 6:42 AM on November 27, 2020


I get that when your frame of reference is addiction and recovery, it is very scary to hear your partner say "I am looking for a new doctor to get this substance, and I'm considering breaking the law."

But here are some things people have famously broken the law or crossed borders to get: AIDS treatment, birth control, cheaper insulin, cheaper antibiotics, acne medication, dental care. Websites that sell DIY hormones also sell prescription antacids and asthma inhalers. People doctor-shop for lots of reasons: because their doctor is a jerk, or won't listen, or is sexist or racist, or because their condition is rare and their doctor is ignorant about it.

The people who do these things aren't generally in the throes of a chemical that impairs your judgment, or of withdrawal so agonizing they can't think straight. They don't neglect their relationships and abuse their partners to get DIY antacids. They don't chase a high or escalate their antacid dosages. They don't switch to administering antacids in more and more dangerous ways. They don't commit bigger and bigger crimes — nobody escalates from DIY antacids to robbing a drugstore. They just, like, keep taking the antacids that are working for them.

So why break the rules at all, if they're not addicts?

For some people it's financial. If you can't afford good insulin here, you might go elsewhere; if your doctor insists on prescribing you the most expensive kind when a cheaper kind still works, then you're probably going to switch doctors.

For others, it's about bias. If your doctor is too homophobic to prescribe AIDS treatment, you switch doctors. If it's early in the AIDS crisis and the whole medical establishment in this country is too homophobic to provide affordable AIDS treatment, you break the law and import it yourself.

So ok. A lot of trans people are showing up here and talking about our experiences. In my case, at least, it's not because I think your partner is trans. It's because I can tell you, from my experience as a trans person, that this is an are where there's tremendous medical bias. Family doctors and even "straight" endocrinologists are terrible at handling hormone treatment. They make people jump through absurd numbers of hoops to get it, threaten to take people off it for offensive reasons like "I will find you less attractive if you do this," offer better treatment to straight white people than to anyone else, and all sorts of other awful things. Doctor-shopping and DIYing are normal in our community because of this bias and frank malpractice.

(You might think: "Well, my partner is different. You've been diagnosed as trans, so of course you need this medication. But she hasn't." Well. The standards for diagnosing someone as trans are themselves absolutely terrible, and many of us don't get formally diagnosed.)

And then... well, we DIY hormones, and we go on having a normal life. No escalating doses. No neglecting our families. No serious criminal record. Often things improve for us a lot and stay better. Because these aren't addictive or mind-altering substances, they're just an ordinary medication.

Tl;dr: The things that are red flags when you're dealing with mind-altering drugs stop being red flags when you're trying to get by in the face of capitalism, ignorant doctors, or bias. Your partner is a sober adult making sober adult decisions and you should let her.
posted by nebulawindphone at 7:01 AM on November 27, 2020 [13 favorites]


(Er, all that said, I agree that DIYing testosterone can be dangerous. The fact that she's considering it is not a red flag, but she should pursue all available options first, and seek out as much information as she can before even considering it.

Also, she should keep in mind that changes to her voice are permanent, could continue to increase, and can be hard for some people to hide. And that even if she hasn't had her facial hair or hairline situation change yet, they could change in the future. This is one of the frustrating things about hormone treatment when you're not straightforwardly trans, is that you can't pick and choose effects or decide when you want them to stop.

But none of this precludes a little good old-fashioned doctor shopping, which is, like I said, to be expected in an area where doctors who aren't specifically trans-focused are so frequently clueless.)
posted by nebulawindphone at 7:08 AM on November 27, 2020 [1 favorite]


I DIY'd testosterone as a treatment for severe depression when I was younger.

At the time I'd lost faith in medication after experiencing serious side effects and limited benefits from the half dozen SSRIs I'd tried and I felt like I was treading water while I relied on regular exercise to keep me alive.

I had my blood checked and found I had normal hormone levels but I'd read online that some people used testosterone as a mood stabiliser and honestly I didn't have a lot to lose at that point.

At least for me, testosterone worked. It suppressed my emotions in a similar manner to SSRIs but made me feel calm and happy instead of apathetic and listless. I'm a cis male so the androgenic effects were less of a concern but the worst side effects I experienced were mild acne, increased blood pressure and weight gain.

If your partner had a similar positive experience, I'm not surprised that they are considering obtaining it illegally because the almost overnight cessation of depression is something that is hard to describe.

The reason I gave up on it is that at the dosage level I found I needed to achieve the mood stabilising effect it effectively shut down my hormonal system and to keep using it I would have either had to regularly cycle it like a bodybuilder or accept a probably limited lifespan.

What I would caution you and your partner about is that stopping testosterone can be challenging from a mental health perspective. For me it was comparable to the worst SSRI withdrawal induced depression I've experienced. I hope the lower dose your partner is on would lead to less severe effects.

If they decide to stop taking it, pay careful attention to their mood, especially for the first couple of months. They may also want to talk to a therapist/counsellor/psychiatrist about this in advance.
posted by zymil at 9:11 AM on November 27, 2020 [3 favorites]


I was a little harsh in tone earlier. I want to point out that I know it's human nature for us to interpret the world through our personal experiences. I understand why everything looks like addiction once you've been through it. But stop and think about it. Let your higher brain work through the logic to show you that instinct I'm this case is not right.

Also, codependency goes hand-in-hand with addiction, and several of your turns of phrase and viewpoints make me think you might have a touch of that going on.

And I still strongly suspect you and your partner are grappling with feelings you aren't aware of or can't talk about.

I stand by my earlier comment, and though it may be hard to hear I think it contains some very important points worth considering.
posted by liminal_shadows at 12:00 PM on November 27, 2020


[One comment deleted. AskMe isn't a place for just unloading on the OP. Skip the insults and keep it constructive, or just pass the thread by.]
posted by LobsterMitten (staff) at 12:02 PM on November 27, 2020


Her desire to find a new doctor* wouldn't worry me from an addiction standpoint. Liking testosterone, disagreeing with one's doctor about the cost/benefit analysis of treatment, and wanting a new doctor are all pretty separate from the phenomenon where people lie to medics so they can abuse opiates.

If she were experiencing actual health problems as a result of the testosterone, I'd be worried. But that's not the situation you describe.

*If she starts ordering from overseas that would worry me, but more in a "are you sure you know what you're doing" way and less in a "I'm concerned you're nurturing an addiction" sort of way.
posted by hungrytiger at 8:27 PM on November 27, 2020 [1 favorite]


Something I forgot to mention earlier is that if your partner isn't already they should consider taking Finasteride or another drug that blocks testosterone conversion to DHT. DHT is a strong androgen associated with male pattern baldness among other things.
posted by zymil at 10:03 PM on November 27, 2020


At least for me, testosterone worked. It suppressed my emotions in a similar manner to SSRIs but made me feel calm and happy instead of apathetic and listless. I'm a cis male so the androgenic effects were less of a concern but the worst side effects I experienced were mild acne, increased blood pressure and weight gain.

I'm obliged to comment here (more for posterity than the OP, I think) because, while zymil is reporting a positive experience, he's (inadvertently) wandering close to repeating one of those "facts" about testosterone that is used to try and dissuade transmasculine people from medical transition (obviously taking testosterone will turn you into a dangerous ball of rage while dulling your emotions entirely /s). Mood can be very tied to hormones (as, uh, anyone who has experienced depression as PMS will tell you) and depending on your "baseline" mood (and hormone levels) adding $hormone can result in everything from "I suddenly have feelings" to "I'm not feelings things intensely, but in a good way" (which is how I understand zymil), even if those are polar opposites. (And the occasional person does get "this really doesn't agree with me and I'm stopping".)

My own experience was that any effect on my mood was a slow burn--I noticed after like six months on testosterone that my mental health had improved. Of course, I had also had top surgery (which was my major transition goal) in that time, which is an enormous confounding factor.
posted by hoyland at 11:48 AM on November 28, 2020


« Older We cannot come get your pie   |   Inspire my Christmas tree Newer »

You are not logged in, either login or create an account to post comments