Re: Endo Appointment

[Guest guest]

Don't hold your breath , and don't be at all surprised if he completely rubbishes your adrenal profile, because the NHS only recognise Cushing's Syndrome or 's disease, and he will likely tell you that the NHS do not recognise the laboratory you had your adrenal profile tested. They will more than likely be brushed aside, as NHS doctors are not trained to recognise any shades of grey between the two. It is because of this that forums such as this are full of the NHS failures.

He will probably advise you to come off your HC giving you some scarey stories about what can happen to people taking HC, without giving any consideration to the fact that you are only taking a maintenance dose to make up for the hormone you are not making. It is always better to prepare yourself for such a reception. I hope it goes well for you, but remember, at the end of the day, it is up to you who you decide to listen to.

Sheila

HiI have receieved my appointment to see an endo at my local hospital today, its this wed 24th, I will take my adrenal profile results to back up taking the HC and see what he/she says. Its only taken 2 and half months since my doc referred me! I do hope this will help me, if anything he might be able to give me something for this anxiety

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[Guest guest]

I am aware of that Sheila, but have to go, been told to take a urine sample too, probably to test for diabeties, I need some help so cant just not go

Don't hold your breath , and don't be at all surprised if he completely rubbishes your adrenal profile, because the NHS only recognise Cushing's Syndrome or 's disease, and he will likely tell you that the NHS do not recognise the laboratory you had your adrenal profile tested. They will more than likely be brushed aside, as NHS doctors are not trained to recognise any shades of grey between the two. It is because of this that forums such as this are full of the NHS failures.

He will probably advise you to come off your HC giving you some scarey stories about what can happen to people taking HC, without giving any consideration to the fact that you are only taking a maintenance dose to make up for the hormone you are not making. It is always better to prepare yourself for such a reception. I hope it goes well for you, but remember, at the end of the day, it is up to you who you decide to listen to.

Sheila

HiI have receieved my appointment to see an endo at my local hospital today, its this wed 24th, I will take my adrenal profile results to back up taking the HC and see what he/she says. Its only taken 2 and half months since my doc referred me! I do hope this will help me, if anything he might be able to give me something for this anxiety

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[Guest guest]



I didn't suggest you shouldn't go , nor would I. I was just trying to prepare you for the most likely scenario so you won't be disappointed.

Sheila

I am aware of that Sheila, but have to go, been told to take a urine sample too, probably to test for diabeties, I need some help so cant just not go

...It is always better to prepare yourself for such a reception. I hope it goes well for you, but remember, at the end of the day, it is up to you who you decide to listen to.

Sheila

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[Guest guest]

Yes I know, but as things arent really getting any better, Im back to an anxious state that had gone away and cannot control it on my own anymore, ive got a dull ache in my chest today and have had several anxious moments today all ready, I will go and see what he says--- On Sat, 20/9/08, sheilaturner <sheilaturner@...>

 I didn't suggest you shouldn't go , nor would I. I was just trying to prepare you for the most likely scenario so you won't be disappointed.

Sheila

I am aware of that Sheila, but have to go, been told to take a urine sample too, probably to test for diabeties, I need some help so cant just not go

...It is always better to prepare yourself for such a reception. I hope it goes well for you, but remember, at the end of the day, it is up to you who you decide to listen to.

Sheila

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[Guest guest]

Seems you are not alone - see http://ehealthforum.com/health/topic31962.html

Luv - Sheila

Hi - After over a year of continuing symptoms I

am finally going to be referred to an Endocrinologist. Does anyone recommend a

sensible one in the North Somerset area who could help me please

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19:34:00

[Guest guest]

Hi,

This may sound a bit unusal but I'm wondering whether to cancel my endo

appointment this week. The reason being is everything is a bit up in the air at

the moment as my GP and my Endo do not know that I am taking NDT. As advised, I

haven't told my GP yet because we are waiting on the outcome of the PCT decision

to prescribe NDT and this is my priority at the moment.

The endo will want to do my bloods which will be a reflection of being on the

NDT for 6wks. If I'm not telling him about the NDT then he will think I'm on the

T4 and I will have to lie about what I'm taking. Therefore, I don't see the

point in going as I been advised not to tell my GP for now.

He also likes me to take recent bloods with me but the most recent I've got were

in Jan when I wasn't on the NDT (I've avoided bloods with my doctor for the same

reason of not telling her that I'm on NDT). So I'm thinking this may be a waste

of an appointment at this stage and my gut instinct is to reschedule.

As well as the PCT/DR reason, I don't want the Endo to know yet because although

I think he is ok about T3, he is anti NDT. So when I do tell him I want to be

in a position whereby I am feeling and responding a lot better, otherwise it

will just give him a reason to undermine my decision and the NDT. Also, my

doctor had wrote to him asking him advice about the NDT, so if I go he's going

to get on his soap box about it.

I've only been on the NDT for just over 6wks and I've been on two grains for the

past 6days, I feel it's still early days for me and I will feel much better when

I'm on a higher/optimal dose. Also I'm working on building up my ferritin level

for the past 7wks as it was 16, I'm not sure what it is now but it may take a

while longer. Also on NAE.

So I'm talking myself out of the Endo appointment but the purpose of my post was

to clarify if I am doing the right thing about rescheduling. I would probably

get another appointment in about 6-8wks time.

When I see him I want to go for it and get all the tests done RT3 and the like

as cannot get bugger all from the labs connected with my GP service (cannot get

any T3 tests and they have even recently dropped the T4 now because they say

that the TSH is the only guidline they need). So is it better for me to get the

bloods done when given the NDT more of a chance and can better utilise the

appointment for my purposes?

So based on all of the above should I reschedule, I'm not desperate to know my

bloods at the mo because I'm going on symptoms and working up with the NDT.

Thank you

[Guest guest]

,

You've already made the decision to take NDT and you've not reached your

optimal dose yet.

So why on earth would you stress yourself out by going to see the endo when you

know it will be difficult / impossible to be honest with him and you've not

sorted out yourself yet.

If it was me I would definately postpone it for a couple of months. The endo

won't think it's odd.. - they probably forget us the minute we walk out the door

anyway....

.

>

> Hi,

>

> This may sound a bit unusal but I'm wondering whether to cancel my endo

appointment this week. The reason being is everything is a bit up in the air at

the moment as my GP and my Endo do not know that I am taking NDT.

[Guest guest]

Hi, Lou & ,

Yep, I've cancelled it today and I've been given another one in two months time.

So I will just see how things pan out in the next couple of months.

Thanks girls for your advice and support

Lv

>

> Hi

>

> When I've been in your situation, I just postponed my appointments so that I

still had the option to see the endo at a later date.

>

> Keep you options open but go with your gut instinct.

>

>

[Guest guest]

> I had been absolutely convinced that the answer would come back as a " no " ! I

guess both reading of so many problems others have experienced and my own sense

of mistrust in the system together with years of inappropriate advice/treatments

have made it much more difficult for me to begin to believe that it will be

possible to find positive solutions within the NHS.

This is how I feel about things (you'll get that vibe from my topic about

feritin rigmarole as I didn't expect to get it prescribed).

> I am much encouraged and now feel ready to go ahead on this one. Hopefully it

may lead to a trial of NDT ...if not at least to knowing whether I need the T3,

and if so, a prescription for T3 + T4.

>

> I am very much hoping that if the endo agrees I may be allowed treatment to be

increased until my results are at optimal rather than suboptimal level (my GP

had said she would only give me enough T LevoT to attain a TSH of aroun 4-5). I

think this much more likely to succeed than simply asking the GP and no doubt

she will feel OK about it if she is seen to be following the advice of an endo.

>

Vicky it all sounds like good news to me, but perhaps not soon enough by all

accounts. The vibe I get is that GPs are usually happy to follow the advice of

specialists and prescribe stuff they recommend. They just need the letters and

requests in the first place. Otherwise, they will harp on about things being

un-proven etc etc...

Fiona.