Hormones are always a touchy
subject amongst TS people. Since it is required by the HBGDA to be in therapy
for minimum of three months to qualify for cross gender hormone therapy, and
since most endocrinologists won’t treat TS patients anyway even with the letter
testifying that you meet the HBGDA requirements, lots of gals feel compelled to
self medicate. The risk is that the sex hormones are the main controls of the
endocrine system, which directly and indirectly controls vastly complicated
chemical systems that regulate some of the most critical body functions, not
just the control of secondary sex characteristics that we often attribute to
them. So with proper health care so difficult to obtain it has become common
for TS to have to resort to self med’ing. As a result
it is also sadly common for people to do irreparable damage to themselves,
their bodies doing it.
I never pass up a chance to
speak out against it, but as you can read from the following thread, my warning
is often not headed. This thread started when a gal named Sarah joined the
forum and was lamenting how long of a wait it was to get in to see a Doctor in
the
I apologize in advance for
the emotional undercurrents and bad spelling! But I didn’t edit the posts.
There is good information here and it highlights the problem quite well on both
sides of the issue.
Susan wrote:
Welcome to the
forums sarah! waves!
I actually know how it feels to have to wait and wait and feel like your body
is going south on you in the meantime. If I remember right, the first
batch of hormones I got was from a crooked endocrynologist
who basically looked at me and went, "Yeah you're a t-girl all right"
(I came dressed en-femme with a trans friend named
Karen).
It turned out my therapist was going to give me a letter for hormones, but she
just wanted to make me go 12 sessions before she'd tell me weather or not I was
going to get a letter. The idea I might do 12 sessions and then haver her say, "you're not
ready" or something scared the crap out of me. Because it could have
meant that I'd run out of money before getting estrogen, so that's why I jumped
the gun and went to an endo who didn't require a
letter.
Because going to a crooked endo turned out so well
for me, and self-medicating my dossage turned out
better than what he perscribed, it's shaped the way I
view hormones and their neccesity for t-girls early
in transition. To me, it's psychological life-blood. Once you start
to view testosterone as a poison to your feminitiy,
estrogen just becomes so very important to mental health.
I could totally see myself smuggling estrogen into prisions
where they no longer provide hormone treatment to trans-prisoners, like in
Tori wrote:
12 sessions... the end
of the world? Try
waiting 40 years.
"so that's why I jumped the gun and went to an endo who didn't require a letter."
and that was the right think to do??? you just totally trashed the endo,
said he sucked yet it was so good??? What are you saying girl??? So you got
impatient, went to a quack... he gave you shit for care... then you just did
what ever... and got lucky and ended up (so far as we know now) okay??? And
that is the best way??? That is incomprehensible! You can't mean that???? Read
what you just wrote!!! It makes no sense???? Would it not be better to educate
doctors to treat us properly? What is your acceptable risk factor??? If one in
ten girls dies from self med'ing... is that
acceptable??? If one in one hundred dies, is that okay??? How about one in one
thousand? If I killed a person for every ten thousand lights I sold, I'd be
responsible for hundreds of thousands of peoples
deaths!!! I frankly don't want that on my conscious. Do you? Oh, now I could
say well if they didn't have that light they might have tripped on a step and
died anyway... so it is okay, the benefit outweighs the risk. But if you're
trying to get insurance as a doctor it ain't going to
fly! While you are smuggling drugs into prison you better make a stash for
yourself cause when you get caught you're going to
need them??? How about give some money to
You make so much sense so often, guess it's okay for you to space out
sometimes... but geeze????
Okay... I said how I feel, sorry to sound miffed. I respectably, yet strongly
disagree! And until you ban me from the forum I'm going to say how I
REALLY feel...
Susan wrote:
Quote
If one in ten girls
dies from self med'ing... is that acceptable??? If
one in one hundred dies, is that okay???
So long as it's less than the number who would die from being treated by an endocrynologist or less than those who would get suicidal
and commit suicide while waiting, then yes, of course it is. Perahps it sounds silly now 6 years later to say I couldn't
wait one more month for estrogen. Illogical really.
But at the time, it felt very urgent. Stopping my body from masculanizing felt like a life-or-death situation.
The idea of having that choice, life or death, in the hands of another scares me.
I call my first endo crooked, which he was because he
didn't follow the HBSOC, and if I remember right, didn't actually have the
legal right to perscribe me hormones but got the
signature of someone who did in his office. On the other hand, I greatly
admired him. He respected my ability to choose what to do with my body by
disrespecting the HBSOC and bending the law.
He didn't do these things to profit for himself. He didn't make any extra
money putting his neck on the line like that. He did this because he truely felt it was the best way to help unemployed and
low-income transsexuals who couldn't afford to pay a therapist to make that
decision for them. Kind of like "Unlawful
good" alignment in dungeons and dragons.
I'll never say to a transsexual that they should be self-medicating instead of
seeking professional treatment. In the same way that I'll never say someoen should be using a home-electrolysis kit instead of
going to a professional. But if someone says they can't afford
electrolysis, or their endo is providing poor care,
I'll suggest it as an option.
----
By the way Tori, I know this really is kind of off-topic... but are you feeling
OK? You seem to be going through a lot emotionally in the last few
days. Something is obviously really bothering you and I think it might be
best to get it out. It isn't what you're saying, because I know we're in
the same place we always have been on this issue in our oppinions,
but it's how you're saying it indicates you're working through a lot of hurt
right now. So what's up?
Susan wrote:
Quote
Susan... some day one
of your friends is going to die. Some kid you know will commit suicide, a
friend will die of AIDS... something will jar that sense of immortality...
BTW, in my mind, the illegal activities I do are not immoral because they help
people and on rare occasions save lives. Smuggling drugs to prisoners is
like equivlant to me with getting food to the hungry,
except one's illegal. I understand your point of view; to you
self-medicating is an unneccisary and extreamly dangerous activity.
If someone turned around and advised injecting silicone into their breasts, or
sharing needles to inject estrogen, I would go off the handle because such
practices are often fatal. To you it feels like I am advocating such
fatal activities. To you it feels like I am steering young impressionable
trannys into an early death.
I just don't see self medication as neccisarily more
dangerous than following an endocrynologist perscription. The fact that my first endo perscribed way too much
progesterone for me (I take 1/14th what he perscribed
now) just left an impression on me as strong as whatever event left an
impression on you.
Again, sorry for de-railing the topic.
Tori wrote:
Oh... BTW you
miss read one word I guess from this quote;
"BTW, in my mind, the illegal activities I do are not immoral because they
help people and on rare occasions save lives."
I wrote "immortality" not immorality, I don't believe you are lacking
morals, only that you feel invincible. Typical for young people to feel
invincible, they will never die. As you get older you will become more aware
how fragile life is. It's a matter of perspective, not that you are "wrong"
or bad... just young and strong and healthy... all good things but they give
you a different perspective from me.
However I must still state that I'm very disappointed that you feel compelled
to advertise that self med'ing is the way to go. You
my dear are not even close to being qualified to judge the relative risks. As
if injecting silicone is over the line but injecting estrogen is just fine.
Lannie is right, lots of young impressionable gals are
going to read your posts and think, hey? That's the way to do it. Granted
perhaps it was the only way for you to do it... but why advertise it?
Let's say I absolutely had to do sex work to keep my family alive... pretty
good risk of contracting aids... but I simply had to do it. And say I
survived... should I be out there telling everybody who was interested;
"hey don't worry about loosing your job! The only real way to transition
and pay for it and feed your kids is to do sex work anyway. It's the best way
to go... here's how..." I think not! I think it is incredibly reckless to
promote self med'ing as perfectly fine... and I will
not stand down! That is a poor choice regardless. And yes many get lucky, but
many won't. And you make it out to be so impossible to do it by the book. I can
not agree, and can not sit quietly and imply by my silence that I agree. If you
never want to hear that from me again... heck this is your forum, and your
deal. Kick me off!
And yes Helen... I'm bleeding heart liberal. Sorry? But I feel unable to not
comment when I hear bad advice being promoted as good advice. True all can
decide for themselves... (and undoubtedly will...)
funny also because I probably have a better biology and physiology background
than any of you. But whatever... I would be untrue to
myself to not stand up and say I feel you are wrong
Susan wrote:
Quote
wrote
"immortality" not immorality,
Doh! You're right. I totally
saw "immoral" everytime I glanced at it.
Quote
If you never want to
hear that from me again... heck this is your forum, and your deal. Kick me off!
Tori, stop suggesting as such. I wouild never
push you away just for having a different oppinion.
Also, I don't take it personally when someone has a different oppinion than me. You just believe one thing I advocate
is harmful to the community rather than helpful. I don't take it
personal, and I know you don't mean it to be personal.
You're right that it's dangerous to just take estrogen without having blood
tests to check for blood clot risk or doing a liver panel, or just having
estrogen and testosterone levels monitored. I don't ever tell people
"self-medication is the best way to do it" If I ever posted as
such, or mentioned as such then point it out and I'll change the post or edit the
show. Helen's right that I consider it an alternative to suicide or going
without.
My friend Julia went without estrogen for 3 years while I was in Tahoe.
She accused the TG community of "abandoning her". This was
self-inflicted self-pitty of course. When I was
homeless and she was homeless I split my estrogen with her so that she wouldn't
have to go without. Of course, I got a job and got my perscription
filled before having to go through withdrawl, she
wallowed in her own misery, totally forgetting that I would have let her sleep
on my couch and take my estrogen. ... but I'm side-trackign myself. My point is that in her case, she
shouldn't have gone without estrogen during those years. She should have
kept up her perscription in whatever way
possible.
I admit I've become a loudmouth with regards to advertising my life and what
I've done, including self-medication. But just because I advertise things
in my life; shouting! hitch-hiking, self-medicating,
waking-up next to the toilet after drinking... doesn't mean I advocate those
aspects of my life. shouting! I'd be perfectly
fine getting guests on my show like Karen Saint Pierre to talk about possible blod-clot risks from estrogen therapy, a tranny who was raped hitch-hiking, or TeeG
to talk about alcoholism (ala show 30).
Not that I'm saying I'm an alcoholic mind you, or that I hitch-hike often!
But again, I know it's nothing personal. We just have disagreaments
over the size of the risk involved. And it's just that we disagree
slightly about an issue, not about each other. So always, feel free to
warn others on the forum of risks you feel are important or problems you've
seen self-medicators run into. I'm not trying
to squash your oppinion. really.
Feel free to express.
Gina wrote:
Estrogen will
stop balding, but not reverse it. But my mother got a bald spot in her
40's. Wearing a wig is a womanly thing to do. I was able to wear my
own hair through my late 30's, and hated the idea of wearing a wig. But I
got used to it, and once it's on, I forget all about it. From there, any
hassle related to it isn't a dealbreaker to my mindset, it's just part of being beautiful.
The following is a completely rhetorical question.
Why is it that you take the responsibility to decide your gender, but don't
have the courage to self medicate?
In today's information economy, you have access to every bit of information
that any doctor has. But more than that, you have time to read it.
More than that, you really care. Every one of us has the ability and the
opportunity to become more of an expert on this than any doctor (except maybe
Marcie Bowers.)
If you decide to do it, you start doing it. Then once you are already
doing it, you tell your regular GP that you been doing it, and are going to
keep doing it. Then she will tell you the stuff you already know about
it. She will strongly recommend that you stop. You are unrepentant,
it's your decision to make, and you made it. She will then follow what is
called "the harm reduction protocol", and write you a perscription for bloodwork.
Susan wrote:
You know, funny
this thread came up again. Today i went to get
the results for my latest hormone level check and ended up deciding to get a refferral to an endocrynologist.
There's no endocrynologist in town so I'll have to
buy a bus ticket to a real city like
last time I had them checked, my estrogen levels were
normal, and my T levels were really high, like twice that of normal. Now
my T levels are 7 times normal and my estrogen levels are sky-rocketing as
well. All I've done is lower my progesterone dossage.
So I'm stumped how to fix this.
Gina wrote:
I think there
is only one thing gonna fix that. In one of the
classic TS biographies (The Woman I Was Not Born to Be)
she actually did cut her own balls off. In those days, American surgeons
would not remove them, only tuck them up in the body,
out of sight. So, I guess alot of transwomen
did it themselves, before
Anyway, your balls are not like little light bulbs churning out 100 watts of
testosterone every day, no matter what. You have testosterone re-uptake
receptors too. When they are not collecting enough testosterone, they
tell your balls to ramp up production. So, if you are taking a
testosterone blocker, your body is probably interpreting the situatiion as an escalating crisis in not being able to
produce enough testosterone, and continuing to try and increase production of
same. Even if you are not taking the blocker, something has gone haywire
in your reuptake, and the situation will continue to escalate.
: ( Sorry.
You could take the kind of massive estrogen dose that is used for court-ordered
chemical castration, or get the surgery.
Tori wrote:
"Why is it
that you take the responsibility to decide your gender, but don't have the
courage to self medicate?"
Because I'm smart enough to know when an expert should be
used. Of course feel free to design your own swimming pool light
fixture. Or perhaps just drop a lamp in your bath tub! Some things just are
beyond DIY. Like frankly I'd prefer people designing bridges and airplanes I
use to be formally trained! There is a famous quote "a little knowledge is
a dangerous thing" but whatever. My endo has
been wonderful and my hormone ramp up and results have been flawless. I'm quite
happy with how I've done it. There is a huge difference between courage and
foolishness.
"You have testosterone re-uptake receptors too" you must be talking
about the negative feedback loop with lutinizing
hormone and the pituitary. Yeah, it's all pretty complicated, but it can be
done right. So funny that you suggest that one should self medicate and yet you
just abandon Susan's situation as if it isn't fixable? She is already scheduled
for
Gina wrote:
The key word in
self-medicate is SELF. I am not going to tell anyone what to do.
That is the crime of practicing medicine without a license.
I am a librarian, and we draw dark lines between providing information and
making recommendations. If anyone perceived something I said as a
recommendation, they need to look closer. Could,
conditional tense, informational presentation of options.
Regarding the self castration, in one of her early shows, Susan said she tried
to do this, and backed down. So, remarking on how this had been rather
common 40 years ago was informational, by way of comparing eras, and not meant
to be any recommendation.
The idea that Susan might fix this problem by having an ori
before her
I have a high opinion of doctors, and those who feel safer with doctors are
well justified. My point was that I don't see it as a requirement, in
this population.
Tori wrote:
When you make a
statement like "...courage to self medicate..." you are making a
pretty strong statement. As if to not self medicate is cowardly? And my guess
is if Susan had been under the care of an endo she
would not be having these problems, so wasting 3-4k on an ori
at this point wouldn't be needed. Probably way more money than she would have
spent paying a doctor to help her. But that is water under the bridge.
"My point was that I don't see it as a requirement, in this
population."
Why? Because we are of less value and expendable???
Should people do underground abortions on poor women but rich girls can go to
someplace and get one done by a doctor? So we shouldn't worry about Roe VS
Wade? It is your body, your health! Why would you not want to treat it as well
as possible? Get the best care you could? I just don't get the cavalier attitude
of people in this community regarding something as critical as their endocrine
system. People are so quick to dispense "informational presentation of
options" that sound like solid advice... but then feel justified that it
is only information not a recommendation. That's not a very dark line to a 17 year old TS reading this forum my dear! No matter
how the semantics play out!
Lucky for me only boys feel compelled to prove they are brave in our society...
women can feel free to use common sense!
Gina wrote:
You're putting alot of words in my mouth. I think it is
substantially rude to set my up as a strawman, by
asking a question, giving what you think might be my answer, and then trashing
it.
The reason why, that I would have given, if granted the
opportunity to answer for myself, is that, in this population, I think the
majority of people know more than most doctors. If they don't,
they should be moving in that direction.
Regarding self-medication, I don't think I implied that people should go
doctor-free. You may recall that I went into detail about how to broach
the subject to one's GP, and obtain their assistance with the process. In
Susan's specific case, had she done this, the testosterone issue might have
been managed better. But my point was, having decided to go on hormones, one should simply do so, and then go to the
doctors.
If someone has decided to go on hormones, and wants to get started - but is
being delayed by doctor issues - then I think fear and courage are
issues. However, it does not follow logically to say that if one action
is brave, then failure to take that option is cowardly.
I think you are taking this too personally.
Tori wrote:
Frankly in my
opinion your suggested approach is irresponsible. You suggest that it is wrong
and a crime to practice medicine without a license yet you give "suggestions"
as to how to proceed as if an authority on the subject. Your assertion "I
think the majority of people know more than most doctors. If they don't,
they should be moving in that direction" hardly would seem to apply to so
many gals, it's pretty well out of reach of a typical high school TS or someone
unable to finish college. Which might describe a more typical
gal considering self medicating on hormones than a person with a sound
background in biology or physiology. Your own approach would suggest
that even your knowledge of this subject is limited, to simply start
I only hope that Susan can get her system settled out in time for her surgery.
I’m not sure if Dr. Supporn requires any labs prior
to surgery, I know some surgeons do to assure you really are off hormones and
that there is nothing counter indicative to surgery, but even if he doesn’t,
having her levels be way out of line, and in flux prior and during her surgery
might add substantial risk to her recovery. I wish her the best! *Fingers
crossed*
Gina wrote:
It is against
my professional ethics as a librarian to practice medicine - on someone
else. It's also against the law, but that's a lesser consideration to me.
Self-medicating is the practice of practicing medicine on yourself. It's
my right as a human being to self-medicate. It's Sarah's right too, and
anyone else's. Nor is it beyond anyone's reach to understand. I
have seen a great number of people become experts on a great number of subjects, that interested them - even though they are not as
good at learning stuff they don't care about.
The fact is, and this applies to any medical condition, one factor stands out,
over all others, in correlation with positive outcomes. That factor is
when the patient takes charge of her/his own treatment. This whole
fucking American mess, where we have the most expensive medical treatment of
any industrialized nation and also the worst outcomes of any industrialized
nation, is the product of a paternalistic medical establishment that encourages
hyper-dependence on medical practicioners.
Nobody should know this better than the transexual
community. Moreover, Deirdre McCloskey's book makes this crystal
clear. Finally, while money may be a hinderence
to many people seeking expert medical advice and treatment - money is not a hinderence to the treatment of ignorance. Public
libraries all over the world offer free treatment for ignorance on a daily
basis.
If you don't know, you don't get the best treatment. It's that
simple. So I stand behind my statement that everyone should be
"moving in that direction."
You don't seem to understand the concept. You go into such great detail
about how hormone regimen is supposed to be personally attuned to your
particular body. For once, you are right. But, your endo has hundreds (if not thousands) of patients, with a
huge variety of different conditions. You have only you to worry about,
and only your condition to pay attention to. And no
worries that you are going to sue yourself. Thus you are better
qualified to fine tune your regimen than your doctor. Does this mean that
you don't work with your doctor? Of course it doesn't mean that.
Doctors are good sources of information. Use them. But be in charge.