Help, daughter HRT

[vee]

I am the parent of an Mtf transgender person. She has been self medicating with female hormones for nearly two years. She has been seen at the Nottingham gender identity clinic for a year. So far the clinic say that there is no clear diagnosis and they will not refer her to an endocrinologist so that she can take HRT safely.

Her GP has tried referring her to an endocrinologist but this did not work as the endocrinologist contaced the GID clinic and as they have not yet recommended hormones he refused to see her. What do I do? How can I get her medication monitored and see that what she is doing is safe? Please don't say that I should persuade her to stop taking the drugs as this is not an option, she is fairly suicidal as it is.

[Jessica Merriman]

This is so tough I don't have an answer. I do want to let you know I will be thinking of you two and will be here for any support I can give. It sounds like you love your daughter very much and it is great to see you refer to her as she and her. I know it means a world of peace knowing she has your support and obvious love. Keep in touch with us on her progress and PM me if you need to talk, vent or cry. I can honestly say WE here on this site support you fully and genuinely. Here is a BIG HUG for you and your daughter. 

[Kaylee]

Page 15 of the new NHS interim guide mentions something called "bridging" endocrine treatment that can be prescribed by a GP while waiting for an endocrinologist.  It might be worth looking into

http://www.cliniq.org.uk/sitebuildercontent/sitebuilderfiles/nhsenglandinterimgenderprotocolcpag12072013.pdf

[Gina_Z]

She is being held up at the GID clinic. The reasons are either good or bad. Can you consult with them? 

[anjaq]

I think it is easier to get antiandrogens to stop puberty and delay it to allow time for a diagnosis? Maybe try that? Or speak to the gender clinic and find out if it can be sped up. Maybe try another GP/endocrinologist, too? I guess they will be careful at treating minors though.
I wish you the best and your daughter a good and timely way to get where she wants to be!

[Lo]

In the US here we have a system by which you can get HRT without a referral or diagnosis, called 'informed consent'. Basically you find a doctor or clinic that is willing to operate on that model with patients. They explain to you what HRT is, the risks and side-effects, and then you sign a form stating that you understand and want to proceed anyways. I've only ever heard of this being done for trans* people over the age of 18, so I'm not sure how a guardian plays into it. It might be worth looking into.

[vee]

Thanks so much for the replies everyone. Just to clarify my daughter is 20 so not a minor and we live in the UK. It just feels like we are banging our heads against a brick wall and I am very worried about her safety.

[vee]

Any thoughts about what to do if your child's gender dysphoria is so severe that they want to die and have already attempted suicide and the NHS won't do anything? At the moment we are planning to go to Bangkok for SRS.


Edited per the TOS

[Bardoux]

There is a private clinic down in london called Trans Health : http://www.transhealth.co.uk/.

I was told that in order to commence HRT at Trans Health with Dr Curtis, you would have to see the in house therapist there for 2-4 sessions, who would then pass on their assessments. I've been their myself and have quite a few friends who also went there after feeling so disgruntled by the healthcare system and how very unforgiving the system appears to be for those they consider non-binary. It's not cheap and i know it's quite a way from Nottingham, but it certainly is an option. He will also be able to write referrals/ documents for surgeries as well.

I highly recommend that when your daughter does start to receive Hormone replacement therapy, that she asks for oestradiol patches instead of pills. A lot easier on the body and more effective imo.

Hope this helps! and feel free to PM me with any questions

[anjaq]

So i guess the best tipps are that IC model if that exists in the UK or that London clinic looks good if you can get an appointment there in time.
I totally relate to your daughters situation. I was absolutely in the same one when I transitioned. I was about 20 when I was having my revelation about what is going on and it took me until I was 22 to really decide something has to be done as my dysphoria about my body became unbearable and then I hit the information that to get HRT to stop my body from changing was over a year of therapy away in which I would have to "dress like a woman" without HRT. I wish your daughter the very very best of luck in getting treatment as soon as possible because at age 20 and in her situation, when she is anything like me, she is really suffering a lot from not getting this. Make this clear if you go to another clinic, tell them that she is called by her new name and accepted as that for however long it is the case, if so. Confirm to the docs that this issue was visible in the past already. You are a great mum, I wish i would have had a mum like you at that age and not one that on top of it told me to move out, but rather one that goes to online forums to find a way to get me the pills I needed.


Edited per the TOS

Edit: I apologize. In the edited section my intention was to refer to the possibilities of using IC as an alternative or to look for other medical professionals who can legally administer HRT (e.g. a different gender clinic, different endocrinologists,...). I was trying to point out that my personal experience was that when I was at that age, I did as well look for a route that was faster than the internal guidelines one of my gender therapist used as I felt the same severe dysphoria specific to that particular age. That gender therapists was used to have 40+ year olds in his office for whom a few months longer may have been a different situation than during late puberty. I know that for them it was not great either, but at age 20, physical changes still happen rapidly, so in my personal opinion, the dysphoria about that is greater. So I relate to that pressure and I hope you can find a proper alternative route if you encounter a person who is blocking your path. No single person should block that for you and I found that different gender therapists or endocrinologists had different internal guidelines about the timeline they would use for administering HRT and not all of them were that long. I found a very helpful GP at that time who was supportive.

[vee]

Thank you so so much for your reply. It sounds like you were in exactly the same position as my daughter. On the one hand I understand the GID clinic's belief that you should dress and live as a woman before they will prescribe hormones in case the person might be mistaken, but on the other hand it is a very cruel requirement for those who have no doubt as it must make the chances of abuse etc far higher and the discomfort worse.

When my daughter first told me we went to Dr. Curtis' clinic but were pretty much turned away and told to go and get counselling. My daughter is very shy, has massive social anxiety issues and consequently has great difficulty expressing herself, so she can not talk about things easily with people, but she is also very intelligent. One thing I do know about her is that ever since she was small, once she has made her mind up about something she does not change it, so although the professionals remain unconvinced that she is transexual I feel sure that if she says she is then she is, whatever the professionals might think.

I tend to feel that if you are self harming and contemplating suicide because you hate your body, then that is pretty good evidence of body dysphoria. Yes, I know there are some cases of people with schizophrenia who have body dysphoria and once the schizophrenia has been treated it goes away, I have read the research. Schizophrenia is not relevant in my daughter's case so I can rule that out.

[vee]

Just a general note to all the people who have kindly taken the trouble to message me on this site. Thank you all for your input, I am reading your messages but cannot reply to you via the site yet. Not sure how this all works, I think it is because I have not been posting for long enough. Anyway, I am reading what you are saying and really appreciate it. It is incredibly helpful to have input from people who have had the same issues and really understand where my daughter is coming from.

[anjaq]

Thank you so so much for your reply. It sounds like you were in exactly the same position as my daughter. On the one hand I understand the GID clinic's belief that you should dress and live as a woman before they will prescribe hormones in case the person might be mistaken, but on the other hand it is a very cruel requirement for those who have no doubt as it must make the chances of abuse etc far higher and the discomfort worse.

Yes I agree and I had the impression that one of the perks of transitioning in the 2010's is that this "requirement" of an extended period of "real life test" before HRT has been softened. I understand that the therapists want to be safe about other issues but frankly if a person is determined to do this, all they can do is to see if that is persistent and if there are no other significant issues that could be a cause. However I must say that this is a valid process. I have a friend who transitioned at the same time and age as I did and he later detransitioned. While I cannot say if that could have been foreseen during therapy, it shows that it is not always that easy. For me personally, getting HRT was equivalent with transitioning, while "dressing" was something I was not particularly fond of. I know that nowadays fashion has changed again, but to my time and with girls of my age, it was very much the norm to wear jeans, T-shirts and sneakers. Slightly different cuts and colors than boys clothes of course but still - when my therapist asked me about doing a "real life test" I had to tell him that I did not want to wear anything else than the clothes I was comfortable with which were already "female" in that I chose the female version of these which was not THAT different though. So I relied in my transition mostly on HRT, covering and removing facial hair, changing my voice and allowing my manners and body language to express who I am. This would have been much harder without HRT, but overall I think it produced a much more natural transition for me because I did not have to develop too much of a "fake" feeling while I was doing this. I would have felt more "fake" and then questioned my transition or transidentity if I "had to dress up" daily just to be myself. I know this does not work for everyone but for me personally it did and my gender therapist issued me a letter for SRS in a very short time because he saw me just as I was and am without a cover of clothing or makeup between us and obviously he still saw that I am gendered female.

I am not sure if I missed that but does your daughter express herself openly or is she still hiding behind a male facade part of the time? How does she encounter the gender therapists?

When my daughter first told me we went to Dr. Curtis' clinic but were pretty much turned away and told to go and get counselling. My daughter is very shy, has massive social anxiety issues and consequently has great difficulty expressing herself, so she can not talk about things easily with people, but she is also very intelligent.

Well you are self diagnosing which is understandable but of course the professionals always want to have the feeling that they are the ones doing the diagnosis, although with TS really it is usually the patients themselves doing that in part. I was extremely shy at my time back then and really had to force myself a bit to open up to the therapists. But I was very emotional at that time, mostly because I already started transition before I came to the therapist and that emotionality just was for me hard to control, so I felt like expressing these emotions towards my therapist in some ways by telling him about my past and how much I suffered from it. Mostly he would check on me how I am doing with my life while not deliberatly presenting as male anymore. I shared how much I was hurt by being gendered male during that time and other stories from my life. He rarely asked me anything else. So I dont know how your experience comes to be - Being turned away is a bad experience - did they give an explanation?

I tend to feel that if you are self harming and contemplating suicide because you hate your body, then that is pretty good evidence of body dysphoria. Yes, I know there are some cases of people with schizophrenia who have body dysphoria and once the schizophrenia has been treated it goes away, I have read the research. Schizophrenia is not relevant in my daughter's case so I can rule that out.

Well yes of ocurse that is self diagnosis again. Gender related body dysphoria is IMO a very good indicator of being transsexual. In my case this dysphoria was very much focussed around those parts of my body that were gender related and I expressed this to my therapist including that I never had intimacy before due to that. It took me some courage to express that at the time as I feared he would turn me away and tell me to "try it out first" before I decide that it is not for me. But I disgress again. I guess schizophrenia can cause some symptoms that are similar but the differential diagnosis should not take many months I think. For my therapist actually the fact that my body dysphoria was greatly reduced once I started HRT was quite a big indicator of the diagnosis.

It sounds to me that your daughter has to manage to open up to the therapist and be relaxed around him or her. Express herself as she truely is in that setting, shed any superficial protective behaviour patterns in front of him. Maybe she cannot do that with a therapist she has been seeing for a long time and that she is used to "raise shields" towards him. My experience of life pre transition was that I kept running around with "shields up" all the time, which prtoected me from harm and hurt but to the outside looked like I was an unemotional somewhat expressionless male-ish person. With transition and HRT I managed to drop that and express myself mor eopenly, I became much more emotional and showed that. I was still shy and actually became anxious now as I did not have that protective shielding anymore, but really to get rid of that shielding by being around people I could feel safe with was the biggest step in becoming myself. So I guess a big step for your daughter may be if she still has such shielding to at least drop it while in therapy or dealing with docs. Not by forcing to drop that behaviour, but to ALLOW herself to drop it and free herself for the time she is in therapy or around people that she trusts (and eventually all the time). Again, I dont know if that "clicks" or if your and your daughters experience is a different one. Does she want to come online too and talk to us herself, maybe also in the chat (which can be a bit intimidating, I must say, but there are quiet rooms and personal messaging options)?

[Doctorwho?]

Ok there are provisions for exactly this type of situation in UK NHS medical guidelines, and the principles from them are applicable in any country. I can't get into the specifics of your case because a.) I am only a medical student and cannot therefore give formal advice and b.) I don't know nearly enough about the complexities of the situation to even begin to form an opinion anyway.

However as an exercise in theoretical medical ethics the question we are being taught to ask when there is a potential disagreement between what a patient is requesting and what we feel is entirely medically justified, is "what would you do if I didn't prescribe this...  today?"

Depending on the answer there is then a risk calculation to be made. For example, and without wanting to put words into anyone's mouth, because you've already told us what is happening, clearly if the answer was "well I'd go away and self medicate," that tips the risk one way, while if the answer was "I'd be annoyed but there's nothing I could do..." that would tip things the other way.

In theory if on balance the doctor can demonstrate that the risk of harm was higher in not prescribing, than it was in prescribing with no clear diagnosis, then unless what I am being taught in medical school is wrong, there would be a clear case to be made for providing the drugs.

No doctor wants to do that - because of course it is tantamount to medical blackmail, but of course if you know your medical ethics you can undoubtedly make and argue a strong case.

The central question is, is the refusal putting her at greater risk than provision? If the answer was yes, and it came to an enquiry, I would say that the doctor would almost certainly be on more difficult ground for having failed to prescribe than he would for having taken the risk of doing so.

This all hinges on what someone could PROVE that the people involved knew at the time. If it could be shown that a doctor KNEW that there was no way that a patient could be stopped from self medicating, then their duty of care to that patient would strongly suggest that these drugs should be provided to them in a controlled and safe way in preference to an uncontrolled and unsafe way. Thus refusal in the face of certain knowledge that this patient definitely would continue to self medicate as a result, could possibly constitute medical negligence under certain circumstances...

So while I cant advise you what to do - I can suggest that you that there might be value in thinking about the medical ethics involved, and then having an informed discussion with the doctors involved, as to the best way forward.

[Jenna Marie]

The NHS is, unfortunately, kind of notorious for sometimes pulling stunts like this (and questions of both ethics and reporting them are moot when the clinic is the only game in town and they know they can get away with most anything).

Since you have a cooperative GP, you may want to ask them to at least run a basic liver function, CBC, cholesterol, and renal tests and also check for elevated prolactin levels. These are straightforward tests that a GP can interpret (mine has - long story, I do have an endo, but at one point I used my GP's lab instead) and will give you and her some peace of mind about whether or not she is risking her health. It will NOT give feedback about how to adjust a hypothetical dosage, most likely.

I'm chiming in largely b/c I started on a very, very low dose of estrogen only and still had serious liver complications b/c the dose was too high for *me.* So I'm a living example that HRT without proper medical supervision - and some doctors don't provide proper supervision or run complete tests either, so this is not a comment on the forbidden topic - can be very risky, even life-threatening. Feel free to tell her that now you know at least one person who needed close monitoring to avoid serious risks.

(And of course you deserve a ton of credit for being so supportive of your daughter!!)

[anjaq]

I must say I can second the last two posts from experience without telling too much now. Medical ethics as Doctorwho described them will guide doctors behaviours and they should and a GP can very well do these blood tests.

[Northern Jane]

It sounds like your GP is sympathetic. He could contact other endocrinologists and maybe find one who will treat your daughter without the official endorsement of the gender clinic.

[Bardoux]

Thank you so so much for your reply. It sounds like you were in exactly the same position as my daughter. On the one hand I understand the GID clinic's belief that you should dress and live as a woman before they will prescribe hormones in case the person might be mistaken, but on the other hand it is a very cruel requirement for those who have no doubt as it must make the chances of abuse etc far higher and the discomfort worse.

When my daughter first told me we went to Dr. Curtis' clinic but were pretty much turned away and told to go and get counselling. My daughter is very shy, has massive social anxiety issues and consequently has great difficulty expressing herself, so she can not talk about things easily with people, but she is also very intelligent. One thing I do know about her is that ever since she was small, once she has made her mind up about something she does not change it, so although the professionals remain unconvinced that she is transexual I feel sure that if she says she is then she is, whatever the professionals might think.

I tend to feel that if you are self harming and contemplating suicide because you hate your body, then that is pretty good evidence of body dysphoria. Yes, I know there are some cases of people with schizophrenia who have body dysphoria and once the schizophrenia has been treated it goes away, I have read the research. Schizophrenia is not relevant in my daughter's case so I can rule that out.

Did she go see a therapist Vee? There are two that he works with in the same building, both i hear are very good. I don't think he prescribes HRT to anyone prior to a patient having a few therapy sessions, even under the Informed Consent model he uses. I understand it is very difficult to talk about, but i think the point of seeing the counsellor is to rule out any other issues/conditions that may influence or affect your daughter's decision to transition.

[Bardoux]

Ok there are provisions for exactly this type of situation in UK NHS medical guidelines, and the principles from them are applicable in any country. I can't get into the specifics of your case because a.) I am only a medical student and cannot therefore give formal advice and b.) I don't know nearly enough about the complexities of the situation to even begin to form an opinion anyway.

However as an exercise in theoretical medical ethics the question we are being taught to ask when there is a potential disagreement between what a patient is requesting and what we feel is entirely medically justified, is "what would you do if I didn't prescribe this...  today?"

Depending on the answer there is then a risk calculation to be made. For example, and without wanting to put words into anyone's mouth, because you've already told us what is happening, clearly if the answer was "well I'd go away and self medicate," that tips the risk one way, while if the answer was "I'd be annoyed but there's nothing I could do..." that would tip things the other way.

In theory if on balance the doctor can demonstrate that the risk of harm was higher in not prescribing, than it was in prescribing with no clear diagnosis, then unless what I am being taught in medical school is wrong, there would be a clear case to be made for providing the drugs.

No doctor wants to do that - because of course it is tantamount to medical blackmail, but of course if you know your medical ethics you can undoubtedly make and argue a strong case.

The central question is, is the refusal putting her at greater risk than provision? If the answer was yes, and it came to an enquiry, I would say that the doctor would almost certainly be on more difficult ground for having failed to prescribe than he would for having taken the risk of doing so.

This all hinges on what someone could PROVE that the people involved knew at the time. If it could be shown that a doctor KNEW that there was no way that a patient could be stopped from self medicating, then their duty of care to that patient would strongly suggest that these drugs should be provided to them in a controlled and safe way in preference to an uncontrolled and unsafe way. Thus refusal in the face of certain knowledge that this patient definitely would continue to self medicate as a result, could possibly constitute medical negligence under certain circumstances...

So while I cant advise you what to do - I can suggest that you that there might be value in thinking about the medical ethics involved, and then having an informed discussion with the doctors involved, as to the best way forward.

I was self medicating for a few months and requested blood tests from my GP. She agreed the first time and when i went back the second time three months later she outright refused to do any more and insisted i move on to a specialist, she was 'not comfortable' with the situation. Bearing in mind i had come out to her years before, had tried to go through the system and even told her where to refer me etc.

[anjaq]

Bardoux, I totally think that you are right with seeing a therapist for a few sessions before getting HRT. Just to exclude some of the issues that can be a problem, even if there is IC going on. But maybe these can be dealt with in a short time and not months or precious years. But good advice to vee there to go and try that again.

I think your last post may be edited, but I had the exact same situation. However being on HRT with blood tests from a GP is a good argument to bring to the gender therapist to encourage him to actually refer you to a connected endocrinologist who may be more knowledgeable than the GP and also this is a more stable situation then rather than being with a GP who may feel insecure about how to really deal with transsexuals HRT. I found that when I told my therapist that I was already receiving treatment and that my GP did the blood checks, it was easy for me to get HRT arranged within the regular program of the gender therapist and associated endocrinologist so I could free my GP from that.