r/asktransgender • u/drewiepoodle glitter spitter, sparkle farter • Jan 29 '16
Why we recommend against DIY
There was an article in the Washington Post about the dangers of self-medding HRT. It lays out all the reasons we keep bringing up when someone asks about DIY. I know there are many of us who do not have access to knowledgeable doctors or have unsupportive parents. And there are many of us who have successfully gone down the road of DIY. However, please bear in mind that there ARE risks, and you should always try to transition under the support and care of a medical professional.
Link to article
How the Internet black market profits off trans discrimination
EDIT: Just to be clear, we understand that for some, there is no other option except to DIY. We just recommend that it be the LAST RESORT.
EDIT 2: If you're looking for an Informed Consent clinic in the U.S., try Planned Parenthood
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u/SkybluePink-Baphomet Jan 29 '16
Ah shit, washpo linked to us. Well here come the 10,000 troll posts.
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u/Gorgyworgy Feb 03 '16 edited Feb 03 '16
if anybody wonders, I do DIY because there's no options but that. In denmark there is just no other way. I got denied for being mentally ill - and its illegal to treat trans patients in denmark now. unless you're sexologisk klinik, and they treat it as a mental illness, and if you have one of those before you ask for help, they deny you because you're already in psychiatry or unstable. They require RLE and weird shit, or did, not sure,they also ask of a bunch of degrading processes, and they take years to get anywhere with you.
So yeah. fuck that.
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u/contravariant_ Feb 05 '16
DIY hormones saved my life. I had transphobic Russian parents, there was no way I could have told them and got them to take me to a doctor. Instead I ordered estradiol and spiro from inhousepharmacy to a PO box ever since I was 14 and that was the best decision I've ever made. It saved me from testosterone and puberty and made it so that I could socially transition and get a legit prescription at 19 and now I'm a happy full time girl. This is why seeing forums attack DIY HRT people hurts me so much, it seems like well-off old transitioners attacking the less fortunate young ones where it hurts the most. If not for DIY, my body would be ruined and I would likely not be alive right now. Mods, PLEASE don't go this route.
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Jan 30 '16
I... didn't think of calling PP to ask if they do informed consent services. o.o
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u/Elle65 Feb 03 '16
There is a problem with the WaPo article and some of the resulting assumptions, which is that all DYI hormones for MTF transitions are the same. Nothing could be farther from the truth. I speak from a position of knowledge as someone who DYI for a long time and am only now about to go into the system because a local PP clinic near my small town has begun to support trans people.
First, not all estrogens are the same. Ignorant doctors (and there are still very many of them) often write scripts for Premarin, which is extracted from mare's urine and is now known to be quite hazardous and probably should be banned. Estrogen Ethnyl is also been found to be dangerous. Estradiol Valerate is the preferred version, and can be very safe.
Further, the method of delivery is hugely important. Pills are probably okay only for the very young. Patches and injectables are far, far safer for everyone. There are clinical studies done with male prostate cancer patients who have been given up to SIX patches at once without any cardiac or thombolytic events. If you have a doctor who wants to put you on Premarin, you are actually safer to DYI and buy Estradiol Valerate. Just because you are going to a doctor doesn't mean you are safe. Doctors vary.
There are admittedly scary stories out there. However, without knowing what kind of estrogen we are talking about, and equally important, how it is administered, there is no way to really assess what that means and what the risk is. As the saying goes, the devil is in the details.
I believe whether you go to a doctor or DYI, you have an equal need to learn as much as you possibly can about you medical and health situation, ask tough questions, think critically and make decisions for yourself accordingly. Thank god for the Internet, that's all I can say. If I had the Internet when I was a kid, my life would be very different, believe me! My point is, you can learn.
I do think the day and age when DYI is or was necessary is slowly drawing to a close. Before long most people will be near enough to an informed consent clinic, like Planned Parenthood, that will provide the right hormones, delivered in the right way, in the right environment, and this will all be irrelevant. But this has been a long time coming, and for the underaged trans person, societal education may still be the only real hope, besides turning 18. Some of us just have to wait.
Obviously, none of this applies to FTM hormones. Testosterone is a completely different chemical and has a completely different risk profile.
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u/drewiepoodle Feb 03 '16
First off, we emphasize that DIY should be a LAST RESORT, for both MtF and FtM.
We also have to remind everybody that we are NOT doctors, and as such, have NO authority to dispense medical advice, EVEN THOUGH, many times, we have to educate our doctors as to what to prescribe us, up to and including medication and dosages.
Yes, sometimes we are FAR more knowledgeable than the doctors we see, the fact remains that everybody's body is different, and transition should always be done under the supervision of a medical professional.
And as for your last statement of testosterone, it is no different than estrogen. It can, and has been, taken by many men, over a long period of time, with no detrimental side effects IF DONE WITH CERTAIN PARAMETERS.
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u/ske105 Jan 31 '16 edited Jan 31 '16
I don't recommend against DIY, I ensure it's known to be a last resort - there's a difference. DIY saved my life. I tried it before my planned suicide. I'm alive and happy today. It can be dangerous, and it's a big risk without blood tests. Bad things may very well happen, it's unpredictable. But I very much doubt we have people jumping into something that will cause irreversible changes and possibly cause significant health implications without a second thought. It was a massive consideration to me and it is has been to everyone I've spoken to. Informing people of all the facts, fully, without bias is key. People can make their own decisions once they have the necessary information (and it's becoming ever harder to find reliable information with gatekeeping-esq recommendations such as these).
But sometimes, DIY is damn important, because we don't always have access to suitable healthcare and support. So I honestly think it's wrong to say that you "recommend against it" as a statement. We should not actively promote it (unless it is the best option), but if we want to help people we need to create an inclusive atmosphere, one which provides valuable education on the risks and doesn't shun any mention of DIY. In my view this recommendation is far too general to be useful and does not contain adequate information in the post. If DIY for all trans people was suddenly to disappear or become illegal, I guarantee that we would see a lot more deaths.
When trans communities start recommending against DIY, it's not unreasonable to imagine a scenario in which vulnerable people will be left without the valuable hormones they may require, when future legislation is made to control the import of prescription drugs into places like the US and UK.
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u/1fabunicorn Jan 29 '16
Was this posted because of me?
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u/drewiepoodle Jan 29 '16
No, we do this from time to time, because a lot of people dont understand why we recommend against DIY. So we need to post a reminded every now and then to reiterate the fact that we ALWAYS recommend that people transition under the care of a medical professional.
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Feb 02 '16 edited Feb 02 '16
This post is pretty inappropriate and useless.
Just let people make their own decisions, people know what DIY is about, they know it doesn't involve doctors and has some different risks.
There are so many legit reasons to go DIY and shaming and scare-mongering folks who go that route ISN'T HELPING. (And yeah,... minors with unsupportive parents who deny them treatment is one of those legit reasons, this isn't a fucking game this is LIFE SAVING MEDICAL TREATMENT that it's socially acceptable to deny to your child, just because that's acceptable to most cis folks doesn't mean it should be acceptable to us.)
Who tha fuck is "we" anyway, so now y'all speak for the whole userbase of r/asktransgender?
Just lovely.
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u/contravariant_ Feb 05 '16 edited Feb 05 '16
Yep, one more reason to emigrate to r/ask_transgender .
minors with unsupportive parents who deny them treatment is one of those legit reasons
Me right here. DIY saved my life. Puberty, the exact time when getting hormones is a time critical matter that will affect whether you can look normal for the rest of your life, is exactly the time when the medical establishment won't let you get them without the consent of your transphobic parents. And of course the mods are siding with the establishment and the parents, because they're already past that stage and have the money and the ability to get prescriptions. "Sure, you can have that tumor removed easily now, but the operation has its risks and you can't legally consent to it because you're under 18. What if you change your mind later? Wait until you're over 18. So what if it will be inoperable by that time?"
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u/catherinecc Feb 13 '16
There was an article in the Washington Post about the dangers of self-medding HRT
link?
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Jan 29 '16
We should make better online guides and easier blood work stuff... Some doctors could help with that, do some non profit work, and that's just how it's gonna have to be until people aren't ultra phobic and we actually have health care
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Jan 29 '16
It's important that we let people know DIY is an option. That isn't to say it should be the recommended method. And we should certainly emphasize the risks of DIY as well as the benefits of medical supervision.
However if we keep the information from people, that is a risk as well. We shouldn't force a choice on people in that manner.
The gatekeeper model has not done trans people any great favors. Many of us have had to go DIY out of desperation, and I know it has saved lives.
Transition is fraught with risks, and we shouldn't ignore them. We need to be able to make informed decisions though. And we can only do that when we have all of the information.
I look forward to a day when people don't choose DIY because it just isn't necessary.
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u/rmuser Jan 30 '16
Is this just a purely reactive move to being linked to from the Washington Post? Basically just some PR thing? There isn't some stark division between online pharmacies and seeing a doctor. I see a doctor. My health insurance refuses to cover some of my HRT medications and I order them online because they're less expensive.
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u/tranletterwhypanda Jan 30 '16
DIY could also be a bit of a shame thing a shortcut to not have to tell a doctor who might not understand what's going on. Where instead you have a friend you trust to get you what you need. It's not ideal, but it might be the only way they're comfortable transitioning
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u/TheOtherLena Feb 01 '16
Oh yes you are all so understanding have a fucking cookie
Let people post about DIY, let people ask those questions and let us help those fucking people if you understand that many of us have no other option and no one else to turn to then.
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u/badschema Jan 30 '16
I don't care if some nebulous party elsewhere in the world benefits from capturing my demand. I'm okay with that, provided they deliver reliably and are reasonably transparent about what they are selling and can give me enough information to make an informed decision about taking mysterious internet drugs (which they generally do).
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u/CarmineCerise Jan 29 '16
Oh god I hope the mods don't start acting like the people at Susans.
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u/Isaac_The_Khajiit Jan 31 '16
They couldn't even manage to get quotes from someone who had something bad actually happen as a result of self medding..
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u/LincaF Feb 03 '16
I'm personally doing diy because Spiro is just not effective for me. I had been on it for months and my T levels had not changed (200 mg a day). Cypro actually does something, though to tell the truth at this point if I could get a <$5000 orchi then I would do that
I can't find a single place that will do it for me under 20k... an orchi! And most won't even talk to me because insurance doesn't cover it
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u/[deleted] Jan 29 '16
Honestly, I'm really disappointed the mods have taken this attitude.
When I first came here in 2013, I was able to start HRT because I was able to use this sub to do research and ask questions. I posted multiple questions, got a lot of answers, and spent like a month using the search function and absorbing as much data as I can (the sub was about four years old at the time, so there was a lot). I was on DIY until I found a doctor I could afford (yay working for a shitty startup that didn't offer insurance or pay their employees what they're worth... so glad I got out).
I don't want to see this place turn into Susan's or Laura's. There's a reason those forums are widely detested by the community.
I will say, though, that anyone doing DIY needs to do copious research. I spent a lot of time digging up whatever information I could find, including looking up specific medical literature (thank you, Endocrine Society, for publishing your treatment guidelines for free) and using a variety of sources to study how the endocrine system works in general.