Explanation/Help needed concerning NHS Gender Identity Clinic Discharge

[Coelacanth]

Shortly I understand I am to be discharged from the NHS Gender Identity Clinic I have been attending for a number of years - eight in fact

 

I wish to know what questions should I be asking of the discharging doctor given he has on a previous appointment stated that I am to be discharged on the basis that ;

 

 

1.  They are satisfied with the medication dose I am on of which they call a ' maintenance Dose ' of which they have stated is ' enough to protect my CV system' 

 

Question ; What is a maintenance dose and is it a satisfactory outcome?

 

2. I am too difficult to treat due to  my XXY chromosomes and the fact that they appear not to have a clue concerning and are not interested in finding out, in fact I have been told I am the  only ' identified ' intersex ' patient in their care, to be the  most difficult to treat out of 3000 patients.

 

Question ; How do I respond to this situation, do I, or do I just have to put the comment down to the typical poor bedside manners?

 

3. I have been under their care ' too long' - none of which is my fault beyond my chromosomes, their failure to attract doctors  and of course the pandemic

 

But in general what do I need to ask of the discharging doctor concerning my ongoing care. i.e. medication monitoring and access to treatment modification/advice?

 

It's not been a good experience and I can't wait to get shot of them, but only if everything is correct and I am not being ' thrown away ' based on the stated remarks hence asking this question here.

[DeeDee]

I don't have any answers for you @Coelacanth  but didn't want this to get lost in the shuffle in case someone else can help.

[Vidanjali]

Hi @Coelacanth . I don't have answers either, but I am rather experienced researching and advocating for my own medical care as I have several chronic conditions. 

 

For one, when I looked up NHS Gender Clinic and Klinefelters, all their language referred to "boys and men" which I found unprofessional, to say the least - I would hope a gender clinic would be able to make the distinction between genetic sex and gender identity - as you are certainly aware, not all XXY folks are boys or men. 

 

Anyway, I understand from your intro post that you are pursuing a feminizing path. Moreover, I read that XXY folks are prone to certain medical conditions. Other than the feminization, if they are treating you for any comorbid conditions, I suggest you ask for referrals to specialists conversant with XXY with whom you can continue to follow up. 

 

Are you comfortable asking the discharge doctor the very questions you posed here, or are you trying to gain greater insight so that you don't wind up "getting talked over" by the doctor? I'll tell you what I think about what you asked, for what it's worth. 

 

1. CV system is cardiovascular system. Dose of what are they referring to here? Hormones, other meds or both? Maintenance dose generally means they believe you're relatively stable on the dose and that you just need to get checked periodically to see how you're doing. As for whether it's satisfactory, I can't give insight because I don't know what they're giving you. But, it would be helpful to ask what the doctor considers satisfactory compared to how you feel. 

 

2. I'm sorry. This comment sounds so objectifying and like they are absolving themselves. If they are truly stating they've done all they can for you given your chromosomal condition, then it seems better to do your best to not take it personally and move on. Hopefully, you will be able to find a provider with greater expertise. Also, again, I don't know if this refers specifically to feminization, or also to any other conditions you may have. 

 

3. Ask for referrals, when you should next follow up, what if any side effects would be red flags that would require immediate attention, what lifestyle things you can do to such as diet and physical activity, who in their system is your main point of contact if you need them. As far as everything being correct, you ought to be able to review your own medical record, and if there are any glaring discrepancies, there ought to be an administrative department there that deals with patient services or privacy. 

 

I hope any of this is helpful. I definitely feel for you having to navigate all this. Let us know how it's going. 

 

 

 

 

[Coelacanth]

Thanks for the reply Vidanjali and you too DeeDee.

 

My discharge interview is  later this day, so I will report back, but just to reply; There is no expertise in the UK for feminine identifying XXY, well none that has made itself apparent for I guess my treatment to be that of ' experimental. '   

And fortunately no the clinic is not treating me for anything else, but the med regime they have me on is *** transdermal estadiol per day plus *** decapeptyl jab every *** months.

 

I do hope to be using my rather poor experience to seek to enable more treatments for the XXY for  'we ' would like to be able to access estrogen in the same manner we can access testosterone without having to submit to a gender identity clinic to discover such places have not a clue about how we work. And particularly so give a recent survey  conducted by one of the two 'klinefelter  clinics' within the UK  (that only care for the male identifying), into the subject of gender identity  within XXY, discovered a third of the participants didn't identify as male - of which I understand came as somewhat of a shock.

 

I will report back later.

 

 

Edited September 2, 2022 by tracy_j
Doseage removed ref. Rule 13