Self-medication

    • 588 posts
    April 22, 2006 7:26 AM BST
    For anyone with too much respect for doctors' opinions on HRT: Wake up. And consider yourself lucky if you are living in a country where you can self-medicate - i.e. are allowed the use of your own brains. There may be some really caring doctors around, with respect and understanding for our needs. (For US & Canadian citizens: GLMA.org) But from all I've read and experienced over the last year there seems no reason to assume this to be the rule.

    ...

    A month has passed now since the chief psychiatrist at our GID clinic said I would receive a letter about my HRT in a few days. After 10 days or so I called the clinic and was told I would have a new appointment with the endocrinologist instead, after Easter. Well, the first week after Easter is over. Three more weeks has passed, and no letter, no appointment. Monday I will have to call again, the same as a month ago, and most probably will be told there is an appointment sometime in May. And the psychiatrist prescribing me my estrogen patches ? Well, he openly admits he knows less about HRT than I do. But he will not prescribe anti-androgens, even if he knows the GID clinic recommends it. So, that is what I have to put up with: The endless delays of the GID clinic, or the contradictory behaviour of my therapist.

    And from what I've read on the net this kind of behaviour is common, especially within the Nationalist Healthcare Systems. Which on the other hand gives some reason to believe many private doctors may act in an "understanding" way simply to make money. A well known problem when it comes to any kind of medical treatment.

    ...

    None of these approaches really gives much reason for respecting their opinions on TS HRT in itself. Where they really could be of help is with the general monitoring of our health. Sadly though, this too often means they will insist on less than effective "HRT". Most probably caused by lack of true empathy and understanding.

    ..

    These facts make me wonder, of course, why anyone, living in countries were selfmedication is possible, would deny themselves necessary and right treatment. After all, it's just a question of following advice that can easily be found on the net. And in my opinion that is what ought to be our focus: Real discussion of maximal HRT and how this can be achieved in the safest possible way, with or without the help of doctors.
    • 588 posts
    April 22, 2006 1:02 PM BST
    I have no problem with seeing there is some reason for concern - for those being forced into self-medication by doctors more or less clearly signalling that professional help could mean months and years of renewed pain and suffering , and then, insufficient HRT dosages. Discussion of this situation is what I really am advocating. The way I see it part of the problem is that those who are self-medicating - for one reason or another - are best served by open discussion, instead of simply saying they should follow the advice of more or less randomly chosen doctors, or psychiatrists who insist we have a "disordered identity" - on a par with any other psychiatric patient.

    ...

    When it comes to DVT (Deep Vein Thrombosis) I have some experience with my doctors' opinions on this. My private psychiatrist knows I have an iron health, that leaves the question of inheritance - in my case very low risk as there are no history of DVT in my family. This was also a major concern of the endocrinologist at the GID clinic. I was asked some pretty simple questions about my health, like the ones mentioned. And they really are questions any sane person could answer for themselves, I think. That means, of course, that TSs with major drinking or smoking habits, or other serious health issues should be careful with HRT anyway, with or without the advice of doctors.

    And so we're left with the question of sanity. And the major problem here are the possibility of a few very disturbed MEN. Sadly, it can seem that these few cause more concern than the far greater number of ts WOMEN in real need of treatment. No real surprise - mens rights and interests always comes first. Of course, just like in the general population there are also ts women with different sorts of mental problems, and so, in need of extended support during transition, professional or otherwise. It has been claimed though that transsexualism entails being less prone to mental problems. (My therapist confirms this. I'm one of the most stable and sensible persons he has ever met... ) As for suicide... it's a well known fact that many young tgirls are being selfmurdered. (by less than assuring doctors, and by society at large.) In my age group possibly as much as up to 50% before the age of thirty. Most of them, probably, without any kind of treatment. And I can confirm that the chances certainly were there, in my case, several times over a period of nearly 30 years. Talking to someone about it earlier, a doctor even, might have been a good idea. But then, no doctors really seemed to care much about our problems, not publicly, not in my country anyway.

    And in my opinion their ways hasn't really changed much. Treatment of transexualism is at the bottom of the pile when it comes to priorities. My personal experience over the last year confirms the same. My psychiatrist even admitted he had put my life at risk by letting me wait over summer for any kind of prescription. And even worse: If it were up to the doctors at the GID clinic I would still be waiting, or dead. It makes me wonder how many have been murdered over the years by being denied treatment. No records are kept of the girls and women dying while being tortured with these endless delays. But then, who really cares...
    • 588 posts
    April 22, 2006 6:48 PM BST
    You're right, of course, Lucy. In my case it is a question of patience. I'm glad though, that I do get estrogen prescriptions from my private psychiatrist, or else I don't know what might have happened...
    xx
    • 588 posts
    April 23, 2006 8:04 PM BST
    Well, honestly, patience...

    I really think the extent of it is difficult to understand, for anyone having more or less free access to HRT. I do agree of course, that for me, in my situation, it certainly is a question of patience. That is, in the sense that patience means sheer survival. Days go by in pain and uncertainty and there's no way out. Today I stood with a scalpel in my hand and wondered if self-orchiectomy really could be the solution. I know, they say it could leave too little skin tissue for the SRS. But I'm not so sure. This afternoon I found out that the incision is supposed to be made along the bikini line. Quite easy to see actually that the testicles can be pushed up and out. Now, I really don't know if I can do it, but it helped me thinking about it. It means I have an alternative and may be able to force the doctors into giving me the treatment I need. It took me 5 months of patience to get a prescription for 50mcg patches. And the truth is I absolutely lost my patience, and hit the doctor's desk so hard my hand went numb. After another 5 months of patience I did a similar thing - hit my chest repeatedly, so hard it left yellow and black marks. And I yelled at him: This is what you and the murderers at the GID clinic are doing to me. Hitting me. Hitting me. Hitting me. (And it's true, he still says I am one of the most stable persons he has ever met. An interesting case, I'm sure: How much pain can this extraordinary stable human being take..... ) And only then was he willing to prescribe me 100mcg patches.

    The last couple of days, I have been realizing that summer soon is here. That means the same could happen as last year. There could be another postponement until August before I get the full HRT. Which isn't really full TS HRT anyway, but only a minimal regimen.

    And just like last year I have been starting to think about what to do. Back then, in June and July I was about to starve myself to death. I could see no other way. The true reason why I came out in February was, after all, that I could no longer live on with the body I have. During the previous months I had tried to order hormones from abroad but they were stopped at the customs. From December until early February I was on two different kinds of herbals, and had an allergic reaction. Finally, in early March, I asked my therapist to write me the necessary prescription. And he said we should talk about it after Easter. After Easter... that is where we are now. One whole year later. One whole year of extreme patience. And I still cannot get the medication I need.

    My thoughts about self-medication ? Well, truth is I have tried the exact opposite for a whole year. And it has meant a year of torture. Torture. Torture. Torture. Torture. Torture. That is in fact what I was thinking, over and over again, when I was out walking, restlessly, for a couple of hours earlier today. Now, one way of relieving this torture would be the self-orchiectomy. I'm certainly not advocating it. But I'm glad I have one last option.
    • 588 posts
    April 24, 2006 10:35 AM BST
    So, I guess, I am in fact advocating self-medication, as in too many cases the only real alternatives are even more desperate measures.

    Patience, once more...

    This morning I called the GID clinic. More than a month has passed since I was told I would receive a letter about my HRT in a few days. Three weeks have passed since I was told I would have a new appointment after Easter, with the endocrinologist. And, well, there will be no appointment "after Easter". Instead, I was told they hope I can have an appointment in May sometime. They hope. Maybe with the endocrinologist, maybe with one of the psychiatrists... Maybe maybe maybe... it's really the essence of torture.

    This time I was quite open, and said I considered it clear proof that making me suffer must be the intention. And I actually think so. In principle it's no different from the way things are done in any concentration camp. On the one hand the guards are "just doing their job, just following procedures" - but on the other hand they are acting, unconsciously, with evil intent - as "just doing a job" really means acting as if individual human beings does not truly exist. And the result is much the same too: Killing off a vulnerable minority.

    This is a major reason why I am advocating self-medication. It's a sheer necessity, with the negligence too many doctors are showing. With the experience I have I would recommend self-medication any day, just to avoid the risk of being seriously maltreated.
    • 588 posts
    April 24, 2006 8:36 PM BST
    Thanks, Brina It may be of help. I will certainly place an order. And then I'll just have to see. As mentioned, I have tryed ordering from a couple of web pharmacies earlier. But they did not enclose a prescription. Still, the same could happen again, I guess - my order may be confiscated, as the national regulations here state there should be a letter of recommendation from a doctor. Which could be a way of avoiding self-import with the help of the inhouse doctors. But I will give it a try.

    Sorry to hear about the pneumonia. And I must say the sideffects remind me of the "outsider state" I had to live with for so many years. I certainly hope I will not have to return there

    And my psychiatrists unwillingness... you're right, it can seem much the same as your experience. Lack of knowledge about transsexualism and HRT among doctors otherwise doing a more or less decent job, it's common I guess. But there's also stubbornness. Even if he says he has very little knowledge about HRT he still has this too personal view of "non bio-identical" medication as significantly more dangerous than the "bio-identical" estrogen patches he is prescribing. Which may perhaps make some sense, but it's still wrong if it means a too high dose of estrogens instead of a combined regimen including anti-androgens.
    • 588 posts
    April 26, 2006 11:11 AM BST
    Let me add some more words, after what happened on monday 24th - the message I got that the chief psychiatrist at our GID clinic lied to me one month ago. Really a confirmation of what I've had to put up with from the clinic for more than a year. Well, I should have guessed perhaps. After all, anyone with some knowledge of the history of psychiatry knows how these things can be..

    The way things work for me - and I'm sure it must be the same for so many others - is that I get these after-reactions. While meeting with anyone at the GID clinic we simply have to act "sensibly" - i.e. swallow most of their arrogance and lack of common decency, their insults and lies. And so, after being abused, we are on our own again, and left with the wounds inflicted upon us by our tormentors. This happened to me this morning. Yesterday I managed keeping a fairly good mood, but then the reaction was there, and even worse than before. I guess this is much the same problem the patiently suffering victims of these prison guardians have been living with ever since the psychiatrists took over some of the work of police and clergy more than a hundred years ago. We're supposed to act "sensibly" - psychiatrists, police, priests, they will accept nothing else. So, any normal act of aggression must be suppressed until we are on our own. And then we take it out on ourselves.
    • 588 posts
    April 26, 2006 3:23 PM BST
    Progressiveness, well... an important part of the problem is the fact that the GID clinic is seriously underbudgeted. In 2002 they were simply shut down. So much for the progressive attitudes of my country...

    My major problem though is the strictness here when it comes to any kind of drugs. We have one of the worlds most "well-functioning" customs systems So, any prescription medication ordered from abroad - and being labelled as such - will most probably be stopped. I have tried four times in all. And every time they sent me this letter saying I would have to bring a statement from a doctor if my parcel was to be released And well, then, I guess, the break-in really is what's left. Or leaving the country. Which I would like any way of course.

    Still, when it comes to progressiveness... you could be right in some respect. The doctors here could be considered a special case. It's only some days ago now it was mentioned in several of our newspapers. One of the headlines were: Closed culture in an open society. The articles also made it quite clear that very few norwegian doctors dare tell how things really work within these closed systems. Which in my opinion only serves to show the less than responsible attitude of the great majority. Lacking budgets and suffering patients in the most seriously underbudgeted areas are the most important consequences of course.
    • 588 posts
    April 28, 2006 11:40 AM BST
    Well then... the end of this story, for now. As expected i got an appointment with the endocrinologist in May - May 29th - even later than i would have thought possible, and more than two months after i was told i would receive a letter about my medication in a couple of days. (The psychiatrist's decision, not the endocrinologist...)This means, of course, that i cannot know if i really will have my prescription before summer. After what has happened i have no reason to expect any particular outcome of the next meeting. That is, of course, the major lesson learnt over the past year: The words of these genuinely disordered people mean nothing, appointments mean nothing, the pain and suffering of the patient mean nothing. I guess that is what they call professionalism. As opposed to us amateurs recommending self-medication.

    So, I repeat my first words on this thread: Consider yourself lucky if you are living in a country where you can self-medicate - i.e. are allowed the use of your own brains. There may be some really caring doctors around, with respect and understanding for our needs. (For US & Canadian citizens: GLMA.org) But from all I've read and experienced over the last year there seems no reason to assume respect, understanding, or a caring attitude to be the rule when it comes to the treatment of transsexualism.
    • Moderator
    • 1652 posts
    April 22, 2006 2:38 PM BST
    I agree with you, Sabina that open discussion on the subject of hormone use should be encouraged. I don’t advocate self-medicating, nor do I advocate blindly following the orders of a single physician. There seems to be a myth going around that doctors know the “right” dosage for someone, that they know what will be safe and effective. Quite simply they don’t; they will prescribe a very low dose, watch out for any warning signals in blood tests, and will be very reluctant to increase that dose regardless of any effects, or lack of them. This is not necessarily going to be in the patient’s best interests and therefore I believe it is essential to do one’s own research, and be able to discuss one’s own regime with their doctor, and understand exactly what is being prescribed, and why.
    Frankly I’m tired of seeing in the hormones forum that whenever someone asks a specific question there inevitably follows a barrage of advice to go and see a doctor. It may be sensible advice, but it doesn’t really help much, and it does say as much at the top of the page anyway.
    I hesitate to comment on Susan’s assertion that 3 of her friends died “from un-supervised HRT”, it being obviously a very sensitive issue, but I feel I ought to for the benefit of balanced discussion. Brain tumours are not a risk generally associated with hormone use, a post-mortem could not show that a brain tumour had been caused by such. Whether or not a suicide is brought on by the psychological effects of hormones is entirely debatable, in my opinion highly unlikely that this would be the sole reason for someone to kill themselves. Even if it was, what would they have done without hormones? Personally I would have sunk even lower into depression had I not started taking them and noticing the beneficial effects. For the record, the psychological effects the hormones had on me, though subtle, were and still are wonderful.
    DVT of course IS a known risk associated with some hormones, but it’s more likely to be a risk if you are in a high risk group, perhaps a heavy drinker or smoker.
    Incidentally I’ve also had friends die from a brain tumour and DVT, and know people who committed suicide, none of them were taking hormones.
    My point being, it’s not the hormones that are dangerous, it’s irresponsibility and recklessness (or just the frailty of the human body). Hence it’s the doctor’s job to be overtly responsible and careful.
    A low to moderate dose of oestrogen is not specifically, particularly dangerous, and topical/parenteral administration reduces any slight risks even further. It would of course be sensible to monitor liver function, blood pressure and so on, which is the only real reason for medical supervision. Feminising HRT is not an exact science, there is no “right” formula, it’s a question of sucking it and see. No doctor in the world knows exactly how hormones will affect you until you try it, and hence they rely on you relaying that information back to them. They are not gods, they are middle-men.
    Be sensible, be educated, and do what is right for you.
    In your case, Sabina, just try and be patient!
    xx