Walking the Tightrope

Managing risk on DIY HRT

Foreword: I am not a medical professional. As should be obvious from the content of this article, I emphatically recommend working with a medical professional to manage your hormone replacement therapy wherever possible.

To be clear: this article is looking at HRT which is not commercially-produced. Some people DIY HRT using commercially-produced hormones obtained on the gray market, and used without the supervision of a doctor. That type of DIY has its own set of risks and realities, which this article does not address, though some risks, such as legality and the perverse incentives to maximize each vial, overlap.

This article is going to have a lot of nuance in it.

Understandably so. DIY HRT has been an essential pillar of the trans community for decades, and remains so to this day as a result of governmental discrimination, abusive healthcare systems, and uncaring doctors. It is lifesaving healthcare. We, as trans people, are actively and constantly victimized by pharmaceutical companies which hold our very lives in their hands, hostage to quarterly profit margins.

At the same time, getting and using DIY HRT is a crime in most Western countries—sometimes a felony, depending on where you live and what type of HRT we’re talking about. Where I live, the United States, illegally obtaining testosterone is a felony, punishable by up to a year in prison. Not jail. Prison. And that’s not even getting into the safety issues that this article is going to deal with directly—issues that mean that DIY is inherently and unavoidably more risky than conventional, commercially-produced HRT.

So, I feel the need to state a few things very clearly at the beginning here.

1. I emphatically support the existence and use of DIY HRT by trans people when:

   1. The person going on DIY HRT is fully aware of the risks of doing so, AND

      1. There are no legal options to obtain HRT OR

      2. When it acts as a bridge to conventional, physician-administered HRT in a situation where waiting would be seriously harmful.

2. I have never done DIY HRT, and would not personally do so except as a last possible resort.

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An online acquaintance of mine who lives in another country and relies on DIY HRT asked me a pretty simple question this week. Her question? “Hey, I noticed that a vial of estrogen I’ve been using is kind of cloudy. I just warm it back up and shake it a bunch to get the estrogen to redissolve, right?” And she sent me a picture, with a fresh vial on the right, for comparison.

I told her she needed to throw the questionable vial out immediately. That, yes, what she was seeing could something called sedimentaion, where a little bit of her hormones had solidified in the vial, and that reheating it and shaking would make it dissolve again… but that there was a real chance that it was mold or bacteria, which is always a risk with injectable medicines. Because she was on DIY, that risk was significantly higher than it would be if she was on commercially-produced estrogen.

She hadn’t known. At all.

And she’s not the first person I’ve known known on DIY HRT who was unaware of risks from doing so.

I’m a scientist. At a fundamental level, I believe that a person can only consent—to treatment, to a study, to anything—if they are fully and completely informed of the risks of doing so. This article exists to do that, following the model of harm reduction, as a form of tactical technical communication.

Without informed consent, there can be no consent.

Understanding the risks

No medicine is guaranteed 100% safe. Whether you’re taking Tylenol or chemotherapy, there’s a chance that that drug could hurt, or even kill, you. The entire goal in pharmacy, as a field, is to use drugs to do as much good as possible while minimizing the harm that those same drugs will inevitably do.

When we’re dealing with HRT in specific, there are a few risks that are particularly important, just because of what the drugs do and because of how we take them. Some of these risks are shared with other drugs, or even all drugs, but they all still need to be respected.

1. Degradation over time. The whole point of drugs is that they are active—that means unstable—chemical compounds, meant to be used and changed by the body; if they weren’t active, they wouldn’t be useful at all. While they’re safe to store for a while, the chemicals in your drugs will slowly change, transforming into different chemicals which will have very different, and sometimes very harmful, effects on your body. This is the reason for expiration dates, and why you need to regularly throw out old medicine.

   1. Pills tend to be shelf stable for a much longer period of time than injectable medicines. While 90% of drugs remain medically effective—just less so—after their expiration dates, almost all drugs which do not are injectable.

      1. The best option to protect injectable drugs for long-term storage—storage in a refrigerator—will cause injectable HRT to precipitate into sediment, which is a complicated way of saying that the chemicals will un-dissolve from the oil that’s meant to carry them. If they’re not correctly redissolved afterward, the HRT won’t work properly.

2. Infection risk from injections. Subcutaneous and intramuscular injections are the safest kinds of injections for someone to do, but every single time a person injects, no matter what they’re injecting, there’s a chance that they’ll infect themselves when they do it.

   1. Especially with intramuscular injections, which deliver drugs to a place in the body without a lot of bloodflow (and therefore not a lot of oxygen), anerobic bacteria or fungi can do terrible things to the human body. People die from this. People lose limbs to this.

   2. All commercially-produced injectables must contain powerful antimicrobial chemicals in them as a preservative. Reputable DIY producers also include antimicrobial compounds, but may be more limited in what compounds they can use, and how much they use.

   3. Antimicrobial compounds break down relatively quickly. They are only certified for 28 days after the first time a needle punctures the rubber nipple of a vial, and for a maximum of one year of stable, sterile shelf-life. When a vial has been in service for 28 days, it should be thrown away, and if it’s been in storage for more than a year, it should be thrown away, because that’s as long as the antimicrobials have been proven to be safe and effective.

      1. DIY HRT is usually compounded at much higher volume and/or concentration, which means that a single vial will take much longer to exhaust—to draw from one well-respected online DIY pharmacy, sometimes more than a year past first use. You can see how this doesn’t exactly meet standard safety guidelines.

         1. The reason for this is that while the chemicals in HRT are generally very cheap—maybe $0.50 per vial—the labor, processing, equipment, shipping and, frankly, the risk involved, as the manufacturer is doing something illegal by black-letter law, make DIY HRT fairly expensive on a per-vial basis.

   4. This does not mean that the antimicrobials in a vial of HRT, whether DIY or conventional, are exhausted after one year of storage or 28 days of use. It means that that’s as long as we have been able to consistently prove that they work. When you go beyond those windows, you’re taking on extra risk.

      1. As an aside: it’s pretty rare to use up a whole vial of HRT in a month, and that’s true for a lot of injectable meds, to the point that drug wastage is a real problem. If those antimicrobials could be made to work consistently for longer than 28 days/1 year, don’t you think that hospitals, clinics, and insurers would be pushing awfully hard for that exact thing?

   5. Because of all this, infection risk from DIY HRT is significantly higher than from conventional, pharmacy-produced injectable HRT.

3. Purity problems. DIY HRT producers—whatever type of HRT we’re looking at—get their base chemicals from producers around the world, but mostly from suppliers based in China. Unfortunately, purity and quality control of these base chemicals is a constant problem because China often doesn’t enforce its own production regulations. It’s a problem that industrial pharmaceutical companies struggle with constantly, and something that compounding pharmacies—the professional equivalent to DIY HRT labs—have to vigilantly test against. All too often, instead of the estrogen or testosterone powder a pharmacy orders, they get inert filler garbage.

   1. It’s such a common problem in DIY HRT that we have for-us-by-us safety testing services, which see a fairly high amount of use.

   2. Industrial and commercial pharmaceutical companies purity test each batch of medical chemicals before it enters the manufacturing chain, usually with a mass spectrometer. This is impossible for DIY producers, because the equipment you need to do it is ruinously expensive—as much as $100,000 per machine.

   3. Sometimes, very, very bad people will pretend to be legitimate HRT producers, even assuming a person’s identity to do so, in order to take advantage of people. When they do, if they send anything at all, it’s usually inert at best or harmful at worst.

4. Sterility. This issue, unfortunately, is a key risk for DIY HRT that professional pharmaceutical companies have mostly solved. Industrially-produced and commercially-compounded drugs are made in multimillion-dollar facilities built to create sterile, aseptic environments. DIY HRT is… not.

   1. Because of this, the only real sterilization that’s possible for DIY producers is terminal sterilization, using an autoclave. It’s very effective at killing bacteria and fungi, but does nothing for anything else that finds its way into a vial, like skin or hair cells from the person producing it. In particular, terminal sterilization can do nothing about prions, which are misfolded protiens that can make people sick.

      1. As a reminder: preservatives in HRT, like benzyl alcohol, do not sterilize. Alcohol and the like can only sanitize, not sterilize.

That’s a lot, isn’t it? Let’s break down the main risk differences between conventional and DIY HRT, in simpler terms:

1. DIY hormones are more likely to be impure than commercial-grade HRT.

2. DIY hormones are more likely to be contaminated than commercial-grade HRT.

3. DIY hormones are more likely to go bad while they’re in use than commercial-grade HRT, even when perfectly manufactured.

4. Because of the way that DIY HRT is usually produced and distributed, and because getting a new supply is inherently risky, there’s a perverse incentive to use DIY injectable hormones long after their safety windows have run out.

These risks apply no matter how reputable the DIY producer is. Now, don’t get me wrong—if you have to do DIY, working with someone who has a very good reputation is definitely for the best, and those producers are going to get as close to lab-grade HRT as they can.

But they can’t get all the way there. Nobody ever got rich making estrogen (and not many making testosterone), and that includes big pharma—if it were more profitable, they’d be more worried about the regular shortages of testosterone and estrogen that seem to constantly plague us. But that means that DIY labs will never meet the stringent safety requirements that compounding pharmacies and mass production facilities absolutely require to make HRT. The financial margins just aren't there.

Staying as safe as possible

Given all of this, the first thing that anyone who’s thinking about going on DIY HRT needs to understand is that DIY HRT is not safe. It is not unsafe. But it’s also not safe. It exists in a never-neverland in between the two, sometimes closer to one, sometimes closer to the other.

DIY HRT is not safe. It is not unsafe. But it’s also not safe. And that’s okay.

And that’s okay. If you need to medically transition, as long as DIY HRT reduces the harm you’re facing, you’re still generally going to end up better than not being on HRT at all. Untreated gender dysphoria is considered by the Endocrine Society, the AMA, and most other medical organizations to be what’s known as an Important Medical Event or a Serious Adverse Event (depending on the organization that oversees your medicine), the same general category as a heart attack or a stroke. This sort of thing kills people.

We want, and deserve, to live full, joyful lives, and if that means medical transition for you, not being on HRT really isn’t an option—and that’s a stance supported by doctors worldwide.

So, if you’re going to go on DIY HRT, it’s a good idea to maximize your safety, and the best way to do that is to follow the safety regulations that industrial pharmaceutical companies have to follow, and that organizations like the FDA expect patients to follow when they use these drugs. Here’s a simple checklist to do it:

1. Your golden rule in all cases is the same as the golden rule for food safety: When in doubt, throw it out.

2. Only get your HRT from the most reputable producers.

3. Whenever you switch to a new supplier, and every once in a while just for good measure, get your HRT tested.

4. Get your blood levels checked regularly by a private lab—at least once a year. Bad estrogen or testosterone levels can be deadly in the long term.

5. If you’re using injectable DIY HRT:

   1. Once you start using a vial, it’s only good for a month. After that month, you need to throw it away.

   2. Spare vials are only good for a year. Don’t stockpile.

      1. Yes, this is much more expensive than using up what you bought. How much money is your life, health, and safety worth to you?

   3. Don’t add air to your vial when you’re filling your syringe. Yes, it’ll make it harder to fill up your syringe, but every bit of air you add adds potential contaminants to the vial and degrades the antimicrobials in the vial.

Always, always remember: safety regulations were written in blood. People died for these rules. You deserve to live a long, full, and happy life in transition.

Please be safe.