The All-Purpose Amateur Transsexual Endocrinologist and Therapist

[LeaP]

Lallie was kind enough, in another recent thread, to complement me on being a "fount of knowledge." While it was a nice compliment (thank you, Lallie), it got me thinking about the limits and dangers of amateur knowledge. And trust me on this – I am an amateur.

The topic was short-term, high dosages of certain hormones. I responded at great, long-winded length (as much because I found it helpful for me to think through the detail as well as to provide a useful answer). Many of us post this kind of response, citing all kinds of sources. We assimilate, educate, judge and weigh competing and partial information, make inferences, and draw conclusions … even propagandizing our points of view on occasion (not that I ever do that, of course…).

In doing so, we can come off as a lot more authoritative than we actually are. As with others on HRT, I find the biochemistry interesting. But the fact that I have done a ton of reading and am able to argue a given point or individual into the ground because of information at my disposal doesn't make me right. (And believe me, there are plenty of others that can argue me into the ground, too.)

Sometimes I fear that people take the ideas and conclusions and associations that we put out there with way too much faith. In the recent thread that triggered this, Kathryn asked me to weigh in – and here is the key – not because I know more than she does about the particular topic, but because she was looking for a possibly different perspective on much the knowledge we both possess.

She did so because she, like me, knows that we are not experts in the field. She is trying to feel her way through something with as much care as she can muster. She knows there isn't necessarily a single "truth" that will provide certainty. No "aha" or "Eureka" facts, points, or special bits of knowledge. Heaven knows I don't think I can provide truth.

So why bother?

Simple. Because with all of our limitations, lack of training, sometimes ridiculous and ignorant conclusions, etc. – sometimes we are the only people dealing with the topic as it relates to transsexuals. Which is why we influence the medical agenda. Why we end up educating our providers. Why our politics wind up influencing everything from standards of care to legislation.

Transsexuals live in treacherous medical territory. Anyone should be engaged in their own care and question their providers. Rarely do people have to do it at such a level of research and detailed knowledge. By all means jump into the science if it interests you, but you can also avoid the need by staying on the well trodden path and not becoming an example of what not to do.

Sometimes the simplest advice is the best advice. Work with a therapist. Go slow. Don't go to extremes with dosages. Be diligent with your bloodwork if you are on HRT. Plan. Communicate carefully. Follow the SOCs. There are a lot of these. It sounds so simple. In fact, do these things and you will almost certainly do better than the person who latches onto some bit of information and does something unusual with it.

Be careful what you read here. I am an IT manager, not a doctor.

[celeste26]

I guess one such subject is the use of Spiro. There are hundreds of Drs even endocrinologists who prescribe Spiro. This in spite of the cautions by the manufacturer of side effects, and the fact that they do not include
mtf transition as a "on label" use for their drug. Everyone of us who use spiro do so hopefully with those provisions in mind.

I might suggest that none of us are the experts, so how are we to make such decisions? Is it responsible for us to just trust our Drs? Have they read all the facts available and simply made their private decision? Or are they merely following in the well trod path that so many others have used too. Early on, thirty years ago, they did not use spiro, now they do, things change.

Lea wrote :"Transsexuals live in treacherous medical territory. Anyone should be engaged in their own care and question their providers. Rarely do people have to do it at such a level of research and detailed knowledge. By all means jump into the science if it interests you, but you can also avoid the need by staying on the well trodden path and not becoming an example of what not to do. " I could not agree more, ultimately it is our bodies and our responsibility. Being in a hurry only produces unnecessary risks in a field with plenty of risks already.

Even with the all the risks there has been plenty of great results so we know there is some pathway that can be followed.

[LeaP]

...
I might suggest that none of us are the experts, so how are we to make such decisions? Is it responsible for us to just trust our Drs? Have they read all the facts available and simply made their private decision? Or are they merely following in the well trod path that so many others have used too. ...

A major point of my post is that we are often the closest thing available for expertise on TS medical care, unfortunately. There IS no expertise to be had on much TS physical medical treatment, excepting perhaps the surgical sphere. There is simply no adequate, peer-reviewed research. What does pass for expertise is a mixed bag of anecdote, cobbled together inferences from non-TS research, informed opinion from the general application of medical principles, and practitioner experience.

I'm not denigrating these, but they vary wildly in quality and depth. Unless a practitioner has taken an interest in TS treatment, they typically will be unaware of even the most basic information that IS available. Even a good endo doing careful prescribing and quality monitoring may not be aware of a treatment guideline and not be prepared to handle issues with a TS patient to their needs. (A recommendation to cease hormones, for example, would not be well-received ...)

Those in places with gender clinics (e.g., the UK) have it better in some respects. At least there is consistency and a known process. Treatment, however, is subject to the same limits of knowledge and, unfortunately, alternatives may be even more problematic when issues arise.

[Kathryn Martin]

This is really an interesting thread. There are some real trans care experts out there but they are few and far between. In fact, most of us go into our first endo or doctors appointment armed with reports, guidelines, and as much knowledge as we can gather not to tell but really to ask the right questions. I love broad perspectives on just about everything. (even though some of you would disagree with this self assessment). On very significant philosopher once said that it takes 12 people to adequately describe an object by perception of the object alone. Since trans care is one of the areas in which even physicians pat around blind in a dark room (and if they do see something their glasses are always tinted non-trans) for us as much information as we can gather is always best. I often turn to my sisters for advice regarding trans related issues. With their perspective, medical perspectives and my own ever growing judgement on these matters I have been able to navigate everything very safely over the last several years and have not had medically any bad experiences in transitioning and out the other side. In fact, my body's ability not only to tolerate but from a general health perspective to benefit from transition (not just the mind) is considered quite remarkable by my physician. On one of last visits he actually said that a lot of the health damage I have over my life time could have been avoided if I had transitioned early. Fancy that......

[Angela Campbell]

This is why I speak occasionally about why I chose the Doctor I did. I spent time and researched. I talked to my therapist who recommended 3 Doctors and outlined what he knew about the way they practice and how the office staff is, mostly from what he hears from his patients.

I also talked to other trans women in my area and asked who they went to and why. I did internet searches to find the history of the practice, and found a good bit of information.

I also did research to learn as much as practical about transsexual HRT, including what medications used, dosages, results often seen, and side effects and other concerns.

It is our responsibility to manage our health and our transition. We have to ask the questions and then question the answers. There is no sure thing but it is possible to make a good educated decision, and then get the best chance of having good results. Listen to everyone and then check it out for yourself. Transitioning is a risk all the way around, and the medical community as a whole is not supportive and does almost no research or studies on the subject. We are somewhat on our own here.

@Celeste......True Spironolactone is being used "off label" for our purposes. So is estradiol, progesterone, and any other drug which can be used for transition. None are specifically intended for use to change a male body into a female body. We have to do what we can.

[Starling]

Lea, I did call you a fount of information, not of truth, so I anticipated your disclaimer of absolute knowledge. But it is good to be conversant with the science, just as it is wise to be your own case manager.

Kathryn says her doctor told her early transition would have prevented damage to her health. That really interests me, because while on HRT I discovered I had cardiovascular disease; so I stopped it, knowing estrogen increases the risk of clotting. But so does stress! Perhaps an earlier intervention by an educated caregiver...

Meanwhile, I'm currently "tutoring" my regular therapist on the subject of TS. Next time she has a patient like me, she'll know a little more about it.

:) Lallie

[mbmeen12]

I am in the corner listing and reading here. I am too on that border of transitioning to HRT (very late too) and I have sought counseling to a Dr who was not expert in transgenders(which ended after several sessions). What we have here on this site are very articulate good people with very honorable intentions. Big picture Emanuel Kant the philosopher is something I try to aspire too. With that being said, I read that similar philosophy/advice in these same posts. I thank you all for being there in this cyber/ internet place and keep writing/ opining etc...//Kara//

[Lilo]

Lea, super-like. Health is everyone's resposibility. Yes, a well prepared Dr is a must. However, I also point out that they only see a snapshot of us every 3-6 months. One csn learn a lot from everyday experiences of others but take this with a grain of salt. My observation is that many of us tend to overextend our physical control of our bodies. GGs do not typically have control over hormone levels and it would be seen as 'crazy' for them to request HRT when these are in normsl biological ranges. Issues emerge from our conflics of social adaptation and slow biological changes. Drs will always prefer the most 'gentle' therapy in order to avoid harm elsewhere. Social interactions in this forum and personal experience or self-study can help us accept the slowness of the process and its social implications.

[Angela Campbell]

But the fact that I have done a ton of reading and am able to argue a given point or individual into the ground because of information at my disposal doesn't make me right. (And believe me, there are plenty of others that can argue me into the ground, too.)
.

I know I usually argue when I am not right or not sure if I am. When I know I am right I do not argue I tend to just say "screw you" and move on.

[Marleena]

I just wanted to say I love the title of this thread and your disclaimer at the bottom.:) That is all...

[melissaK]

All that has been said above rings true. Keep in mind the myth that we are all alike, we are not. Each of us is unique set of DNA. DNA variation means its exceedingly rare any two of us look alike let alone act alike. And its no different inside of us. Some of you reading this probably have two gall bladder ducts, most don't. Take that into brain chemistry or hormones in our body and you can begin to have an idea of the complexity.

Where I am going with this point is this - when you seek care you will have a chance to influence your care to solve YOUR version of transgender issues. Please do not think the "one size fits all" Standards of Care (SOC) will be a perfect fit for you and will lead you to Nirvana (or Shangrila or the promised land). You will do well to know the SOC (they are reputable guidelines), but you should know yourself as best you can and know when you need to ask for a variation from them in your care to accommodate your unique differences.

Profoundly unhappy with being a man and certain I am and always have been a woman, I tried to pursue traditional SOC MTF protocols for a cross the gender divide transition, and it was not a good fit for me at all. I have chartered a course into "gender outlaw" land and I live on HT, with breasts, long hair, and a penis. My clothes are what I want to wear based upon how I feel about any particular place I am going to be, or who I am going to be with. This suits me well. My life works better than it ever has. It is not part of the traditional SOC.

I think we often ask questions here because some steps we are expected to take in a traditional transition feel so wrong to us. Its not a reason to despair, just keep in mind some advice from someone who did the whole MTF gender change surgery thing and realized it didn't take her to Nirvana, Kate Bornstein, who says: "Do what ever you have to do to make your life worth living."

[LeaP]

... Since trans care is one of the areas in which even physicians pat around blind in a dark room (and if they do see something their glasses are always tinted non-trans)

... On one of last visits he actually said that a lot of the health damage I have over my life time could have been avoided if I had transitioned early. Fancy that......

I love the characterization of "tinted non-trans"!

Interesting comment on damage and it makes me wonder about a few of my own issues. This is a very worthy thread topic in its own right, Kathryn.


I know I usually argue when I am not right or not sure if I am. When I know I am right I do not argue I tend to just say "screw you" and move on.

Funny - but how true. I do the same.


I just wanted to say I love the title of this thread and your disclaimer at the bottom.:) That is all...

I was having fun with the title. I was strongly tempted to word the disclaimer as "I'm a manager, Spock, not a damn doctor!"



Where I am going with this point is this - when you seek care you will have a chance to influence your care to solve YOUR version of transgender issues. Please do not think the "one size fits all" Standards of Care (SOC) will be a perfect fit for you and will lead you to Nirvana (or Shangrila or the promised land). You will do well to know the SOC (they are reputable guidelines), but you should know yourself as best you can and know when you need to ask for a variation from them in your care to accommodate your unique differences.



All well-taken. The lack of applicable research and the need for knowledgeable flexibility on the part of medical providers is complicated that much more by the myriad of alternate paths. The little that does exist speaks primarily to transitioners.

[celeste26]

Angela: My post was not whether something was on or off label use, but about how we educate ourselves in things that even experts disagree about. Even the so called "well worn path" has its risks. We are all free to find our own answers and the responsibility of their consequences.

I dont want to get into some "I'm right, no I'm right" disagreement. My research leads me away from Spiro while others towards it.

Peace,
Celeste

[Angela Campbell]

I was having fun with the title. I was strongly tempted to word the disclaimer as "I'm a manager, Spock, not a damn doctor!"


But I did stay at a Holiday Inn Express last night!