Hormone Prescriptions - whats yours - how bad is your care?

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Ice Maiden
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Hormone Prescriptions - whats yours - how bad is your care?

Postby Ice Maiden » Sat Mar 30, 2013 5:48 pm

This has been milling about in my mind for years.

Lets start with my prescriptions and care.

I first went to my GP in the late 90s at that time I was given a lot of hogwash that they (HA) would not fund a referral to Charing Cross - Then at 3 North (Main Hospital). My GP who was a bit of a maverick (sadly moved on) and after speaking to a local endocrinologist agreed to give me Premarin. That was good of them as this was something they were not certain about.

I tread water until I threaten legal action and a judicial review with the Health Authority they conceded and a referral was made. Legal action rules - maybe doing it again soon!

I had the two interviews, went OK well, I had already transitioned was not married and kinda a good subject - didn't smoke and young.

I was prescribed ethinylestradiol - and got some good breast grown - melons in fact LOL but it always gave me liver pains. Still, no pain no gain.

Now the problems start.

I went on taking this for years and never was discharged from the clinic as a number of personal situation stopped surgery so have been attending for over a decade!

During that time I have never been offered a review, I was given ONE blood test prior to surgery. I have never seen their in-house Endocrinolgist Dr Seal - nor any other for that matter. Even post op I had no blood tests, no information - nothing.

My care is so bad that you wanna know how I decided on estraderm that I currently take?

Well I I said to my GP that I get liver pains and maybe ethinylestradiol is a bit strong post op. I wasn't sure if patches would be better? I spoke to a pal of mine in France - people in the Skype Group will know who I mean. She has estraderm and said its OK so I said, "lets try Estraderm!" The GP said - "OK" and thats how I was prescribed that! :lolno:

No followups, no bloods, no Charing Cross checkups, nor bloods and advice from them. It truly is so laughable you couldn't make it up. In fact if I had a scalpel I would probably have to have done my own surgery - I suspect that would have turned out better too.

So in my case I have NO idea what my bloods are, the rare blood test I have had from a GP about 2 in 5 years seem pointless as I never find out the results and they probably do not know what is normal anyway for a transsexual woman as CX do not liaise adequately with my local practice who are just left to fend for themselves.

:shrugs: :noway:

So when people say we shouldn't self-medicate that is exactly what I am doing under the NHS!

Like prescription pick n' mix.

How it should work is Charing Cross should do at least a quarterly reviews and have a blood test either demanded locally and be sent the results to decipher and make recommendations by their own specilist endocrinologists or have you go to London to meet Dr Seal (for example) and discuss options and the results.

Not some Woolworths lucky dip, "um a friend takes this so Um lets try that..."

WTF is that?! That's embarrassing!

That is my care plan! It is shocking! Surgery is another story for another day.

So the question is how good or how bad is your medication 'pathway' have you had any discussion with Charing Cross? Are you results reviewed and assessed properly, or is this a case of total and absolute medical incompetence? Give you a pill and leave you to it - forever it seems.

What do you take and what amounts? What is your body weight and are you pre or post op.

Love to know.

If this is rife, if medications are being so badly prescribed by Charing Cross across the board this could end up in a national scandal!
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Christine
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Re: Hormone Prescriptions - whats yours - how bad is your ca

Postby Christine » Sat Mar 30, 2013 6:20 pm

It seems that Charing Cross have just started issuing appointments with the endocrinology people, though the information regarding what it's about seems scant. I guess it's a new thing as mine says "first appointment" although I've already seen Iffy there.

In terms of the standard of care offered, I can't really complain about the clinicians there but in terms of administration it's absolutely the worst I've ever experienced anywhere. Lack of funding and resources are no excuse, the admin of that place seriously sucks and the attitude of some staff members is utterly appalling (I do have to say not all, some have been very friendly and have actually bent over backwards to help, but the attitude of others has been disgusting.)

In my case I've been told to get new blood tests about eight weeks in which I'll be doing this current week - actually about six weeks in my case but that'll have to do.

I'm hoping these are signs that maybe they're cleaning up their act a bit...

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Re: Hormone Prescriptions - whats yours - how bad is your ca

Postby emma kate » Sun Mar 31, 2013 10:22 pm

When i first went to my GP i was immediately referred to a psychiatrist,who then referred me to a psychologist who i had 2 1 hour sessions with and i was then referred to my local endocrinologist who ordered a blood test and wrote the referral letter to Cx.My first Cx appointment was with my lead clinician Dr Barret and he also sent me across to the main Cx Hospital for a blood test.My second appointment was with Dr Davies and he recommended that i commence hormone treatment and prescribed estradiol hemihydrate 2mg daily.It was agreed between Cx and my Gp that my local endocrinologist would monitor my hormone treatment and if any adjustments were required these would be made in conjuntion with Cx folling analysis of blood results which are taken on a 3 monthly basis and usually a week or 2 before i go to Cx so i dont have to have a blood test there as i take a print out of my latest results.I have therefore not seen Dr Seal, but Cx has sent me my Gp and my endocrinologist a copy of a booklet written by Dr Seal entitled Information about Hormonal Treatment for Transwomen which my endocrinologist call his trans bible.I am now on Estradiol 4mg daily and have recently had a Goserelin[zoladex10.8mg] implant inserted to reduce my testostrone level and this will continue on a 3 monthly basis.I also was given a 2 week course of cyproterone to combat the initial surge in testostrone levels which occurs with Goserelin implants.I see my endocrinologist on a 3 monthly basis and have a blood test 2 weeks before the appointment.The time between Cx appointments a seems to be getting longer as the clinic gets busier.My next appointment has been put forward by a month.I have no complaints regarding my care pathway prescribed by Cx but their administration still needs improvement.

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Re: Hormone Prescriptions - whats yours - how bad is your ca

Postby Christine » Sun Mar 31, 2013 10:41 pm

It does seem that even at the same clinic, the procedures seem somewhat inconsistent.

I've also heard a couple of people here mention a "care pathway" but have never heard of it otherwise. Is this something I should ask about?

Oh yeah, I forgot to mention, I was prescribed 0.5mg Sandrena (estradiol gel). It appears to be having no effect but this is only week six.


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Re: Hormone Prescriptions - whats yours - how bad is your ca

Postby Steffi » Mon Apr 01, 2013 1:23 am

I had my blood test at my first ever CX appt to establish the baseline.
After that, I got my GP to send me for blood-test about 10 days before each CX appointment so that I could go down there with my current results in my hand.

I was on two squirts of estrogel, later replaced by two x 1mg sachets of Sandrena gel.
I also had Dutasteride, approx 1 per day
Pre-op I was also having the Decapeptyl implant every 3 months.

Post-op I'm on 2 x 1mg Sandrena. Also have a couple of Dutasteride per week.
As my testosterone was very low at 0.8pmol/L I had Intrinsa patches to raise it to 1.9 and make me less lethargic and more horny. Intrinsa is no longer manufactured and they're about to give me a replacement product (cream)
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