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

[bethy]

Ice Maiden, I totally agree with you on this. My after care has been bad. I tried talking to my doctors about my hormones and they have no clue. anytime I am ill, I need to tell them what they need to prescribe me. It's a joke. I never had a blood test since leaving CX care post op 3 years ago. I did finally manage to sort a blood test out after explaining everything and doing the leg work to email someone at CX, but seriously my doctors don't care/ or just don't want to bother understanding what is going on in the real world.

Also if I want an appointment I need to wait at least 3 weeks and to see any doc.
The worst bit they won't up my dose of hormones nor add patches to it. I am on Estradiol Hemihydrate 6mg daily for the rest of my life. It doesn't bother me but I have to pay for my prescriptions and that is the bit that bugs me, if I am paying I should decide what I want to pay for.

[Christine]

I'm thinking I'm not doing too badly in that my doctors are fine about blood tests... though they do want an opinion from a professional before officially doing anything, and that bit is tricky. I've also noticed that trying to get a reply out of CX seems to have got worse again lately, and even though my oestrogen level's too high, nobody seems all that bothered.

Getting an appointment in a reasonable amount of time (or rather not) is something I've also noticed: over the past year or so the average has gone up from about a week (which was too long in itself) to typically a month, which is absolutely absurd. I don't know why it's got so bad, but it seems to be a countrywide phenomenon from what I can tell.

[Rona Rees]

my own experiance is still under cx and that seems to be ok but like yourself i have had probs geting the results for myself in writing although they will tell me oraly ( same as i take all my meds eight every morning ) they send the results to cx automatically .at my apointments they then say they are ok or not and vary dosage acordingly how that will be after the op i dont know plus i will be moving to wales so who knows someone should know it is our right to have the tests done every 6 monthe popst op if everything is on trackeventually they reduce it to anually unless you present and convince them (your GP) to recheck . as you know post op you should be as a post menopausal woman but both male and female hormones need to be checked so make sure your doc knows this and what levels they should be within... cx sign you off if all is ok and stable after a year i think 9We need to ask them and also check your doc nows about the new guidelines for services to be supplied by nhs in england and wales as of oct1 this year ( http://transactivist.wordpress.com/)
Print out relevant section and give it to the doctor for his reff .we could put together a set of guidelines for doctors to follow in dealing with post and pre op ts girls ..and make sure the doc has references they will accept possibly from cx and the practicioners in the field... please excuse my ramblings and atrocious spelling and grammer ..

[Ice Maiden]

I am on Estraderm MX 25 2 per week each patch contains 0.75mg so sat-wed wed-sat

basically someone of my size I am 5'9 and over 12 stone although losing weight and if I was 'biologically female' would be pre-menopausal. Is on an old lady's dose.

The problems all started after surgery - logic dictates thats due to the removal of testosterone from testis no longer being there. As nothing else has changed. So a lay view would suggest adding a little of that 'T' back to the mix might help!

But these morons are unable to scientifically analyse this. And again I am left having to direct the 'experts' who do not give a damn, or are hiding behind their so called 'credentials' fearful of actually taking control of the situation.

I tried Ethnylestradol orally, but I just want to sleep all the time on that. Although that did work well pre-op. But too potent post op.

The trouble is the patches only came about because I was tired on the other. No-one really knows what to do. CX are MUTE and GP's are not expert enough it seems to calculate these things. My opinion is most docs seem to be quacks and have a cheek possessing a medical degree.

I can count on one hand the amount of doctors who impressed me in my life and had a level of expertise I expected. The rest just seem to have no clue what they are doing. They basically are handing their patients their prescription pads and saying, "write down what you think might agree with you." Until the patient falls seriously ill and at that point the patient is unlikely to sue them.

It is like poisoning their patients to death! At least Harold Shipman did it quickly!

[Christine]

Having a long history of depression, I've seen quite a few doctors in the psychiatric field and most have absolutely no idea what they're doing. In fact the last one I saw (I gave up after that) was dangerously incompetent and made recommendations that were so inappropriate that my GP almost hit the roof when he saw them. There have been a few good ones, but they're almost invariably too conservative to be of much help. My other half did recently see a doctor who was very, very knowledgeable. Unfortunately, treating patients isn't his area of interest.

I guess this sort of thing happens when you get a profession that's so mired in status.

As for CX, even the normally reliable Iffy has gone silent, so I'm wondering if someone has issued a diktat for them to be less helpful.