Monday, 18 June 2012

DIY endocrinology, now available on the NHS

    A friend recently mentioned that she has decided to take a short-cut, to self-medicate with estrogen rather than submit to the interminable wait for hormones through official channels.
    It's her choice, and on reflection I don't think it would be mine. Though I'd be happy if I could secure a hormone prescription before going full-time I'm at peace with the notion of an RLE requirement if that's what it comes to for me because I subscribe to the view that living as a woman is more important than  accessing any particular treatment. But she's at an advanced stage of desperation and who am I to judge her decision. I've made my views clear enough in the past on the whole sorry mess of self-medding becoming the de facto route into hormone therapy.
    Something she said made me take notice though, something I'd heard the same thing from others but had never before considered the implications. Her doctor is happy to give her regular blood tests to allow her hormone levels to be monitored, but is not prepared to give her any advice or referral based on those tests.

    That's right. We do endocrinology here, but you? You're on your own!

    It's understandable I guess, they stray into a huge legal quagmire if they offer official support for strictly unofficial use of medication. Sure, they are qualified and experienced to give advice on basic endocrinology even if they aren't world-class experts -  they do it every time a natal woman comes in for HRT, to name but one of many endocrine issues they face - but they need the endocrinology in question to be under their control to be able to do it properly. In offering the blood tests they're going out on a limb somewhat, doing the best they possibly can for their patient without exposing themselves to malpractice claims. Can't blame them for that.
    This is not a good situation though, because even though it provides the requisite information it still means the patient relies on DIY endocrinology. You'll probably have heard the DIY endocrinology line somewhere in this sphere, that endocrinologists just use a trial and error process to get the levels right and it's so simple anyone could do it. How dangerous a half-truth can be.
    I can't help thinking yet again that the whole situation is an unholy mess. A lot of transgender people seen to end up self-medding through necessity and though the medical profession frown on it they provide just enough help to facilitate it. But not enough help to enable the patient to do it in complete safety.
    Yet again I wish there could be a grown-up conversation on the subject. I see other clandestine medicine being provided without question - to drug addicts, or to teenagers needing contraception - and I can't help thinking that if it's legally safe for those kind of services to be provided then there must be a way for it to be so for endocrine advice to be given to a self-medder. I wonder whether the atmosphere of reluctance to do so comes from fear within the medical profession of a perceived rather than genuine legal threat.
    After all, there are people facing real medical issues because of this, and isn't fixing that what a doctor does? Can you be nicked for simply practicing your profession in that situation?

13 comments:

  1. I hear what you are saying Jenny and as far as the GP(s) are concerned I would have to agree with them. Self medicating is dangerous and people who do so take a risk with their physical health. GPs are in the same position when dealing with drug addicts too, they can only monitor and advise. For those who feel they should be taking hormones, as in the case os transgendered folk, they have the right to consult the medical fraternity in respect of their taking medications if they do it through the proper channels. I had a psychiatrist who was also a medical practicioner and he was able to prescribe my medications. Consequently he was then responsible to ensure I was properly monitored. He did that through my GP as he was based in London and I live in Southport. My GP was only too happy to fulfill her duty toward me and I suppose she was legally bound to do so too. My approach would be if you want to take hormones do it legally, that is through the proper channels.

    Shirley Anne x

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  2. I'm in complete agreement with Shirley Anne on this one, though I'm also heartened to hear that your friend's doctor is happy to give her regular blood tests. That should give early warning of any complications... and let's face it, there are risks.

    I would, however, like to dispel a misconception; one does not have to go through an RLE before hormones are prescribed, or even be living full-time in ones new gender. My experience is that hormone therapy is giving me a more feminine appearance and helping to calm my anxieties, so it makes a lot of sense to commence the hormones before attempting anything as far-reaching as an RLE. Wise therapists and clinicians recognize this.

    For the record, I was prescribed oestrogen gel some 13 months after first attending the Gender Clinic. Getting the referral and first appointment took a while beforehand, so all-in-all it was about 18 months. Not too long to wait for doing things properly, I reckon, though thankfully I wasn't suffering from severe depression at the time.

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  3. Hi,

    Firstly, don't get me wrong, as I agree entirely with what you are saying, and self med'ing is not my first choice nor is it my desire. Also, in no way am I considering this path as a short cut. You will see from my blog http://sophiedarlings.wordpress.com/2012/05/28/the-third-option/ I have been wrestling with what to do and how to go about things.

    I was foolishly expecting that by privately approaching a fully qualified endocrine specialist then I could pre-med with 'professional blessing'. I know the risks, I preach the risks to friends who themselves are self med'ing. Which is why I have had full blood test done prior to starting anything.

    But, what are you to do when the professionals (who were quite happy to receive £300 for 40 minute consultation) decline after they realise that I don't want just a generic chat. I needed proper advice as to whether a combination of medication is a safe, and how to guide my GP over the coming months as to what to look out for so that my health could be properly monitored. That is still my aim, as I say in my blog, I do not want to die trying. But they have so said NO, There are rules, procedures, guidelines which prevent them from helping.

    So while I still play the waiting game for gender clinic to acknowledge my referral and actually request funding, I know that I need a helping hand so that when I start my RLE I can turn it into a success. Waiting till the end of the year for my golden ticket appointment, starting RLE, then at some point later commencing hormones will in my mind only lead to everyday fail.

    I'm saying all this so that people understand that I'm not foolishly going to blindly self med (which many people choose to). I have undertaken extensive research and am trying to figure out how I can safely (with support from medical professionals) pre med. I am against idea of self med'ing, I'm wrestling with the whole dilemma in my head as not even I can resolve clearly that what I want to do is ok. But I don't have any choice, I'm not being allowed to have any choice, the system is forcing my hand and until I am comfortable with my decision (which I am not) I will not even be placing an order let alone administering anything.

    I'm sure that everybody has their own reasons and rationale as to why they themselves go down all sorts of paths, but without the context of understanding as to what lead them there, who are we to judge.

    Great blog Jenny, always love reading them, people should listen to what you have to say :)

    Soph
    x

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  4. I think making a person wait until RLE is cruel and unusual punishment.

    The policy in the Province of Ontario, Canada used to be one year full time before hormones, since reduced to three months I believe.

    Considering all the delays in seeing counselors, getting doctors appointments etc why make the committed transitioner wait a minute longer.

    I started hormones prior to transition though I had to "fire" my original GP, who basically stated she would never prescribe them. I went ahead and got the necessary blood tests while I searched for six months to find a doctor who would take on a transsexual patient.

    I had a prescription after my first visit.

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  5. The stories and experiences related here are truly horrific. My hope is that any and all utopean social democrats will take heed. Compare this centralized gov't. controlled, 'one size fits all' bureaucracy, where one is subject to what ever "rules might be rbitrarily imposed to that simple concept of individual freedom of choice..

    Is it any wonder that we, who still aspire and subscribe to American Exceptionalism view any form of socialized medicine with such horror and distain.

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  6. Morning all,
    I guess my point is not about the advisability or not of self-medding but the practical reality, that it's becoming the de facto route into hormones and that the duty of care is not being served by pretending that it isn't or by not providing adequate support.
    I understand completely why people find it necessary to do it - believe me, it's tempting! - and simply being censorious towards self-medders isn't going to help.

    @Angela, it's true, some people do manage to score prescriptions without RLE. But people like you are the exception, not the rule, and your clinic is probably more sympathetic in that way than mine.

    It's funny really, the contrasting attitudes of Brits and North Americans to each others healthcare systems. You're horrified because sometimes the medical establishment here denies particular routes and because well-off people subsidise the indolent, while we're horrified because poor people die in America from easily treatable conditions and people find themselves kicked out of health insurance cover because they are sick. TBH I don't want to stray off-topic into the politics, save to say I'm just as damn glad we have the NHS as you are that you don't :)

    The decisions behind the RLE-before-hormones route, however fair or not, are nothing to do with Government or national politics and everything to do with the prevailing view of the gender medicine establishment. As I understand it they see the hormones-before-RLE route as more likely to generate regretters. Which is a reasonable basis, even if not necessarily a popular one.

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  7. "prevailing view of the gender medicine establishment"...IE,
    the NHS...."they see the hormones-before-RLE route as more likely to generate regretters. Which, (IN YOUR OPINION) "is a reasonable basis, even if not necessarily a popular one."

    IMO, Simple, KNOWLEGABLE, diaganosis base on reality based, (empiricle) evidence, or just plain commonn sense, should suffice to determine suitabe candidates for HRT and SRS.

    I suppose that might require some RATIONAL thought on the part of the gatekeepers, but then I imagine that would run afoul of the "prevailing view of the gender medicine establishment".

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  8. Hey, I did say it ain't popular.

    Besides, anyone who doesn't like it can go private, just like you do in the USA.

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  9. FYI...In US hospitals are required by law to provide treatment irrespective of ability to pay. They pass these un-reimbursed costs, incurred treating mostly illegal/undocumented immigrants and "indolent" n'er do wells, onto their insured and/or paying customers, thus raising the costs for the rest of us.

    So despite this RLE prior to HRT policy on the part of the 'gender medicine' establishment being unpopular, your stated position is tat it is a "reasonable" policy. How myopic can you be?

    I would disagree with your assessment, Jenny. Withholding appropriate medical treatment to satisfy some unsubstantiated policy or belief on the part of the "gender medicine establishment", is just plain ignorant and cruel.
    But then what more can be expected from a bureacracy that has absolutely NO understanding of what it means to be born trans-SEXED, and believe that SEX and gender are the same and just some variation of some mythical "spectrum".

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    1. Your Reality Check needs to be rebooted, most of the people who have to rely on hospital treatment rooms for their general health care are not "indolent n'er do wells" most are working at the only jobs they can find in this sh**y economy; jobs that do not pay for health insurance or a living wage for that matter. Or if the company does offer HC the deductibles are so high that only the upper level management could afford them. Most hospital get 3 dollars for every dollar they spend from the government to pay for indigent care.
      The reason that our healthcare expenses and hospital cost run high is because of the insurances companies and their inflated voodoo costs they try and squeeze out of us the taxpayer.

      Right now there is not a single world wide bureaucracy that understands the trans experience and how to fix or deal with us

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  10. http://genderreality.wordpress.com/2012/06/21/a-short-history-of-the-transvestitetransgenderist-movement/#respond

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  11. Kay/Sarah

    I actually tend to agree with your comment. "Indolent" was Jenny's term and I never meant to imply a 'world-wide' bureaucracy. Again my reference was to Jenny's "gender medicine establishment".

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  12. "I'm not being allowed to have any choice, the system is forcing my hand..." ~sophiedarlings,(above)

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