Re: cortef

[Guest guest]

> Hi ,

> Andy actually says that most mercury toxic people will pass an ACTH

> stimulation test, so you were lucky to fail.

Ha ha, that's quite funny, I know what you mean, " lucky to fail " !.

When you have so many tests come back " normal " it's a cause for

celebration when something finally comes back unarguably bad. Though

I suspect they're still going to come up with some dumb excuse for my

test result rather than actually investigate the problem.

I would presume (I'm hardly an expert) that mercury toxic people fail

the ACTH stim test because their adrenal glands are fine, but they

have a malfunctioning pituitary, so don't produce endogenous ACTH

properly.

My test failed because I think I might have actually physically

injured an adrenal gland. Even so, Hopkins are insisting on a

tremendously expensive MRI to look for pituitary disease. Doesn't

seem too likely to me, but if ruling out pituitary problems is the

only way we're going to move forward, so be it.

> He says that the gold

> standard is the exercise stress test. So the answer to the question of

> what to do if you fail the ACTH would be to do an exercise stress

> test.

I haven't heard of that, but sounds interesting. Even moderate

exercise knocks me out completely an hour later. I suppose if you

measure both ACTH levels and cortisol levels you can get an idea of

whether the problem's primary or secondary.

>

> BTW what were your experiences with the nhs? Did you manage to get

> them to prescribe/diagnose you with anything in the end?

I gave up on the NHS in the spring. The local NHS gastros I saw were

disinterested, stupid, insulting, and of course, slow. No-one seems

to hold my local hospital in particularly high esteem though. I've

had a couple of investigations at the Royal London in Whitechapel (as

seen regularly on BBC TV), which of course is NHS, and they were

superb. A whole different experience.

The thing is, private treatment in the UK isn't necessarily any

better than the NHS, because almost everyone you see privately is

also an NHS consultant. Certainly if you go private in my home town,

the only people you end up seeing are the same f* & %kwits that work at

the local NHS hospital. You might see them quicker, and they might

have a nicer office, but they don't get any more intelligent just

because you're paying them out of your own pocket.

I'm only getting anywhere since coming to the US... and even then

it's because I finally worked out what might be wrong, and asked them

to do the right test.

Hopkins is only a slight improvement over my UK experiences. It's

luck of the draw here. Some of their docs have been great (thanks Don

, Bruce Bochner, Marshall Bedine), but others behave like

you're an irritating distraction that stops them getting on with

their real work. (Just got back from another ridiculously unhelpful -

and expensive - consultation this morning).

Sorry if I'm giving doctors a bad name. But a lot of them suck. You

pay them a fortune for their expertise, then end up having to work it

out for yourself.

[Guest guest]

> Hi ,

> Andy actually says that most mercury toxic people will pass an ACTH

> stimulation test, so you were lucky to fail.

Ha ha, that's quite funny, I know what you mean, " lucky to fail " !.

When you have so many tests come back " normal " it's a cause for

celebration when something finally comes back unarguably bad. Though

I suspect they're still going to come up with some dumb excuse for my

test result rather than actually investigate the problem.

I would presume (I'm hardly an expert) that mercury toxic people fail

the ACTH stim test because their adrenal glands are fine, but they

have a malfunctioning pituitary, so don't produce endogenous ACTH

properly.

My test failed because I think I might have actually physically

injured an adrenal gland. Even so, Hopkins are insisting on a

tremendously expensive MRI to look for pituitary disease. Doesn't

seem too likely to me, but if ruling out pituitary problems is the

only way we're going to move forward, so be it.

> He says that the gold

> standard is the exercise stress test. So the answer to the question of

> what to do if you fail the ACTH would be to do an exercise stress

> test.

I haven't heard of that, but sounds interesting. Even moderate

exercise knocks me out completely an hour later. I suppose if you

measure both ACTH levels and cortisol levels you can get an idea of

whether the problem's primary or secondary.

>

> BTW what were your experiences with the nhs? Did you manage to get

> them to prescribe/diagnose you with anything in the end?

I gave up on the NHS in the spring. The local NHS gastros I saw were

disinterested, stupid, insulting, and of course, slow. No-one seems

to hold my local hospital in particularly high esteem though. I've

had a couple of investigations at the Royal London in Whitechapel (as

seen regularly on BBC TV), which of course is NHS, and they were

superb. A whole different experience.

The thing is, private treatment in the UK isn't necessarily any

better than the NHS, because almost everyone you see privately is

also an NHS consultant. Certainly if you go private in my home town,

the only people you end up seeing are the same f* & %kwits that work at

the local NHS hospital. You might see them quicker, and they might

have a nicer office, but they don't get any more intelligent just

because you're paying them out of your own pocket.

I'm only getting anywhere since coming to the US... and even then

it's because I finally worked out what might be wrong, and asked them

to do the right test.

Hopkins is only a slight improvement over my UK experiences. It's

luck of the draw here. Some of their docs have been great (thanks Don

, Bruce Bochner, Marshall Bedine), but others behave like

you're an irritating distraction that stops them getting on with

their real work. (Just got back from another ridiculously unhelpful -

and expensive - consultation this morning).

Sorry if I'm giving doctors a bad name. But a lot of them suck. You

pay them a fortune for their expertise, then end up having to work it

out for yourself.

[Guest guest]

No, they didn't. They didn't diagnose me with anything, just ordered

a bunch more tests (which meant I had to come off the HC for a day or

so :-( ) and a very expensive MRI to check on my pituitary.

Though they were fine with me going on the HC and FC (which I'd got

another slightly " alternative " doc to prescribe because Hopkins were

dragging their heels a bit). Told me they probably would have

prescribed the same thing... although from experience, I think they

actually would have prescribed nothing and left me to continue

suffering.

" Do no harm " frequently seems to translate to " do not treat " . Does

anyone ever get sued for NOT prescribing something? ;-)

>>>> SO did they diagnose you as having addisons?

>> As I say, I failed the ACTH test miserably (though it's also quite

>> possible that my adrenals have got worse since the beginning of the

>> year... but something was definitely up even a year and a half ago,

>> when I was so tired I was almost crawling up the sidewalk on all

>> fours).

>>

>> If you do ACTH, they should also check Aldosterone levels, both

>> baseline, and at the same intervals they check your cortisol.

>>

>> Don't ask me what you do if your ACTH test comes back normal though!

>>

>>

[Guest guest]

No, they didn't. They didn't diagnose me with anything, just ordered

a bunch more tests (which meant I had to come off the HC for a day or

so :-( ) and a very expensive MRI to check on my pituitary.

Though they were fine with me going on the HC and FC (which I'd got

another slightly " alternative " doc to prescribe because Hopkins were

dragging their heels a bit). Told me they probably would have

prescribed the same thing... although from experience, I think they

actually would have prescribed nothing and left me to continue

suffering.

" Do no harm " frequently seems to translate to " do not treat " . Does

anyone ever get sued for NOT prescribing something? ;-)

>>>> SO did they diagnose you as having addisons?

>> As I say, I failed the ACTH test miserably (though it's also quite

>> possible that my adrenals have got worse since the beginning of the

>> year... but something was definitely up even a year and a half ago,

>> when I was so tired I was almost crawling up the sidewalk on all

>> fours).

>>

>> If you do ACTH, they should also check Aldosterone levels, both

>> baseline, and at the same intervals they check your cortisol.

>>

>> Don't ask me what you do if your ACTH test comes back normal though!

>>

>>

[Guest guest]

No, they didn't. They didn't diagnose me with anything, just ordered

a bunch more tests (which meant I had to come off the HC for a day or

so :-( ) and a very expensive MRI to check on my pituitary.

Though they were fine with me going on the HC and FC (which I'd got

another slightly " alternative " doc to prescribe because Hopkins were

dragging their heels a bit). Told me they probably would have

prescribed the same thing... although from experience, I think they

actually would have prescribed nothing and left me to continue

suffering.

" Do no harm " frequently seems to translate to " do not treat " . Does

anyone ever get sued for NOT prescribing something? ;-)

>>>> SO did they diagnose you as having addisons?

>> As I say, I failed the ACTH test miserably (though it's also quite

>> possible that my adrenals have got worse since the beginning of the

>> year... but something was definitely up even a year and a half ago,

>> when I was so tired I was almost crawling up the sidewalk on all

>> fours).

>>

>> If you do ACTH, they should also check Aldosterone levels, both

>> baseline, and at the same intervals they check your cortisol.

>>

>> Don't ask me what you do if your ACTH test comes back normal though!

>>

>>

[Guest guest]

Sorry if I'm giving doctors a bad name. But a lot of them suck. You

pay them a fortune for their expertise, then end up having to work it

out for yourself.

-----------------------

I agree . I too haven't had the best of luck with doctors and it is very

frustrating, and I have also had to figure out most of this on my own! I'm

still really upset about my local ER that didnt' figure out that my appendix had

ruptured and they sent me home! I'm thinking of not paying my co-pay for that

visit, since I'll have to pay another co-pay for the ER that actually got it

right! So for the people who do find a good doctor, I hope you appreciate what

you have!--------Jackie T.

Re: Re: cortef

> Hi ,

> Andy actually says that most mercury toxic people will pass an ACTH

> stimulation test, so you were lucky to fail.

Ha ha, that's quite funny, I know what you mean, " lucky to fail " !.

When you have so many tests come back " normal " it's a cause for

celebration when something finally comes back unarguably bad. Though

I suspect they're still going to come up with some dumb excuse for my

test result rather than actually investigate the problem.

I would presume (I'm hardly an expert) that mercury toxic people fail

the ACTH stim test because their adrenal glands are fine, but they

have a malfunctioning pituitary, so don't produce endogenous ACTH

properly.

My test failed because I think I might have actually physically

injured an adrenal gland. Even so, Hopkins are insisting on a

tremendously expensive MRI to look for pituitary disease. Doesn't

seem too likely to me, but if ruling out pituitary problems is the

only way we're going to move forward, so be it.

> He says that the gold

> standard is the exercise stress test. So the answer to the question of

> what to do if you fail the ACTH would be to do an exercise stress

> test.

I haven't heard of that, but sounds interesting. Even moderate

exercise knocks me out completely an hour later. I suppose if you

measure both ACTH levels and cortisol levels you can get an idea of

whether the problem's primary or secondary.

>

> BTW what were your experiences with the nhs? Did you manage to get

> them to prescribe/diagnose you with anything in the end?

I gave up on the NHS in the spring. The local NHS gastros I saw were

disinterested, stupid, insulting, and of course, slow. No-one seems

to hold my local hospital in particularly high esteem though. I've

had a couple of investigations at the Royal London in Whitechapel (as

seen regularly on BBC TV), which of course is NHS, and they were

superb. A whole different experience.

The thing is, private treatment in the UK isn't necessarily any

better than the NHS, because almost everyone you see privately is

also an NHS consultant. Certainly if you go private in my home town,

the only people you end up seeing are the same f* & %kwits that work at

the local NHS hospital. You might see them quicker, and they might

have a nicer office, but they don't get any more intelligent just

because you're paying them out of your own pocket.

I'm only getting anywhere since coming to the US... and even then

it's because I finally worked out what might be wrong, and asked them

to do the right test.

Hopkins is only a slight improvement over my UK experiences. It's

luck of the draw here. Some of their docs have been great (thanks Don

, Bruce Bochner, Marshall Bedine), but others behave like

you're an irritating distraction that stops them getting on with

their real work. (Just got back from another ridiculously unhelpful -

and expensive - consultation this morning).

Sorry if I'm giving doctors a bad name. But a lot of them suck. You

pay them a fortune for their expertise, then end up having to work it

out for yourself.

[Guest guest]

Sorry if I'm giving doctors a bad name. But a lot of them suck. You

pay them a fortune for their expertise, then end up having to work it

out for yourself.

-----------------------

I agree . I too haven't had the best of luck with doctors and it is very

frustrating, and I have also had to figure out most of this on my own! I'm

still really upset about my local ER that didnt' figure out that my appendix had

ruptured and they sent me home! I'm thinking of not paying my co-pay for that

visit, since I'll have to pay another co-pay for the ER that actually got it

right! So for the people who do find a good doctor, I hope you appreciate what

you have!--------Jackie T.

Re: Re: cortef

> Hi ,

> Andy actually says that most mercury toxic people will pass an ACTH

> stimulation test, so you were lucky to fail.

Ha ha, that's quite funny, I know what you mean, " lucky to fail " !.

When you have so many tests come back " normal " it's a cause for

celebration when something finally comes back unarguably bad. Though

I suspect they're still going to come up with some dumb excuse for my

test result rather than actually investigate the problem.

I would presume (I'm hardly an expert) that mercury toxic people fail

the ACTH stim test because their adrenal glands are fine, but they

have a malfunctioning pituitary, so don't produce endogenous ACTH

properly.

My test failed because I think I might have actually physically

injured an adrenal gland. Even so, Hopkins are insisting on a

tremendously expensive MRI to look for pituitary disease. Doesn't

seem too likely to me, but if ruling out pituitary problems is the

only way we're going to move forward, so be it.

> He says that the gold

> standard is the exercise stress test. So the answer to the question of

> what to do if you fail the ACTH would be to do an exercise stress

> test.

I haven't heard of that, but sounds interesting. Even moderate

exercise knocks me out completely an hour later. I suppose if you

measure both ACTH levels and cortisol levels you can get an idea of

whether the problem's primary or secondary.

>

> BTW what were your experiences with the nhs? Did you manage to get

> them to prescribe/diagnose you with anything in the end?

I gave up on the NHS in the spring. The local NHS gastros I saw were

disinterested, stupid, insulting, and of course, slow. No-one seems

to hold my local hospital in particularly high esteem though. I've

had a couple of investigations at the Royal London in Whitechapel (as

seen regularly on BBC TV), which of course is NHS, and they were

superb. A whole different experience.

The thing is, private treatment in the UK isn't necessarily any

better than the NHS, because almost everyone you see privately is

also an NHS consultant. Certainly if you go private in my home town,

the only people you end up seeing are the same f* & %kwits that work at

the local NHS hospital. You might see them quicker, and they might

have a nicer office, but they don't get any more intelligent just

because you're paying them out of your own pocket.

I'm only getting anywhere since coming to the US... and even then

it's because I finally worked out what might be wrong, and asked them

to do the right test.

Hopkins is only a slight improvement over my UK experiences. It's

luck of the draw here. Some of their docs have been great (thanks Don

, Bruce Bochner, Marshall Bedine), but others behave like

you're an irritating distraction that stops them getting on with

their real work. (Just got back from another ridiculously unhelpful -

and expensive - consultation this morning).

Sorry if I'm giving doctors a bad name. But a lot of them suck. You

pay them a fortune for their expertise, then end up having to work it

out for yourself.

[Guest guest]

Don't be sorry. Many of us end up paying dearly for it, and with our

own lives, and still people go on believing that " THEY " are our

saviors and to be trusted above allcosts. This kind of thing needs to

be exposed, so we need to talk about it, and even get angry, if need

be.

It just chaps my hide. This gal that I have known for ahwile, knows

that I have mercury toxicity, knows how it has wrecked my life, and we

have talked about the issues. Now, she goes to the dentist today, and

what does she have done? She lets them put in " silver " fillings,

because she trusts them and THEY told her that most poeple do not react

the way I did to amalgam filings,(like it is a one time eopisode, or

something...) and so it is perfectly fine for her to have them in her

mouth.

Argh!!!!!!!!!!!!!!

Doctors...dentists...it's all the same thing......

~Inga

> Sorry if I'm giving doctors a bad name. But a lot of them suck. You

> pay them a fortune for their expertise, then end up having to work it

> out for yourself.

>

>

[Guest guest]

Don't be sorry. Many of us end up paying dearly for it, and with our

own lives, and still people go on believing that " THEY " are our

saviors and to be trusted above allcosts. This kind of thing needs to

be exposed, so we need to talk about it, and even get angry, if need

be.

It just chaps my hide. This gal that I have known for ahwile, knows

that I have mercury toxicity, knows how it has wrecked my life, and we

have talked about the issues. Now, she goes to the dentist today, and

what does she have done? She lets them put in " silver " fillings,

because she trusts them and THEY told her that most poeple do not react

the way I did to amalgam filings,(like it is a one time eopisode, or

something...) and so it is perfectly fine for her to have them in her

mouth.

Argh!!!!!!!!!!!!!!

Doctors...dentists...it's all the same thing......

~Inga

> Sorry if I'm giving doctors a bad name. But a lot of them suck. You

> pay them a fortune for their expertise, then end up having to work it

> out for yourself.

>

>

[Guest guest]

Don't be sorry. Many of us end up paying dearly for it, and with our

own lives, and still people go on believing that " THEY " are our

saviors and to be trusted above allcosts. This kind of thing needs to

be exposed, so we need to talk about it, and even get angry, if need

be.

It just chaps my hide. This gal that I have known for ahwile, knows

that I have mercury toxicity, knows how it has wrecked my life, and we

have talked about the issues. Now, she goes to the dentist today, and

what does she have done? She lets them put in " silver " fillings,

because she trusts them and THEY told her that most poeple do not react

the way I did to amalgam filings,(like it is a one time eopisode, or

something...) and so it is perfectly fine for her to have them in her

mouth.

Argh!!!!!!!!!!!!!!

Doctors...dentists...it's all the same thing......

~Inga

> Sorry if I'm giving doctors a bad name. But a lot of them suck. You

> pay them a fortune for their expertise, then end up having to work it

> out for yourself.

>

>

[Guest guest]

Interesting how much more they need to actually treat you, what was

the point of testing the acth if fail or not they weren't going to

treat you

>

> No, they didn't. They didn't diagnose me with anything, just ordered

> a bunch more tests (which meant I had to come off the HC for a day or

> so :-( ) and a very expensive MRI to check on my pituitary.

>

> Though they were fine with me going on the HC and FC (which I'd got

> another slightly " alternative " doc to prescribe because Hopkins were

> dragging their heels a bit). Told me they probably would have

> prescribed the same thing... although from experience, I think they

> actually would have prescribed nothing and left me to continue

> suffering.

>

> " Do no harm " frequently seems to translate to " do not treat " . Does

> anyone ever get sued for NOT prescribing something? ;-)

>

>

>

>

[Guest guest]

Beats me. As I say, the policy at Hopkins seems to be test all you

like, but do nothing until you have a cast-iron diagnosis, or the

patient dies, or leaves the hospital out of frustration. I assume

it's done to avoid law suits, which I understand... but the result is

that the welfare of patients becomes a secondary concern.

Here's another little tale for you...

The day before I got hold of the HC, I actually collapsed while

leaving the hospital. Security came over and told me I couldn't lie

down on the grass! (I was still on Hopkins property). I told them I

couldn't stand up. So they called an ambulance and took me to their

emergency department.

I told the ER staff about the recently confirmed adrenal problems.

They kept me there for 8 hours without food or water. Did an ECG,

took blood, checked my BP repeatedly.

My heart rate dropped to 47bpm (I saw it on the monitor, flashing red!)

No-one did anything. They decided I was just tired, should follow it

up with my " primary care physician " and discharged me at 8.30pm. I

left ER and realised I still couldn't walk, had to phone a friend to

come and pick me up!

P

> Interesting how much more they need to actually treat you, what was

> the point of testing the acth if fail or not they weren't going to

> treat you

[Guest guest]

Beats me. As I say, the policy at Hopkins seems to be test all you

like, but do nothing until you have a cast-iron diagnosis, or the

patient dies, or leaves the hospital out of frustration. I assume

it's done to avoid law suits, which I understand... but the result is

that the welfare of patients becomes a secondary concern.

Here's another little tale for you...

The day before I got hold of the HC, I actually collapsed while

leaving the hospital. Security came over and told me I couldn't lie

down on the grass! (I was still on Hopkins property). I told them I

couldn't stand up. So they called an ambulance and took me to their

emergency department.

I told the ER staff about the recently confirmed adrenal problems.

They kept me there for 8 hours without food or water. Did an ECG,

took blood, checked my BP repeatedly.

My heart rate dropped to 47bpm (I saw it on the monitor, flashing red!)

No-one did anything. They decided I was just tired, should follow it

up with my " primary care physician " and discharged me at 8.30pm. I

left ER and realised I still couldn't walk, had to phone a friend to

come and pick me up!

P

> Interesting how much more they need to actually treat you, what was

> the point of testing the acth if fail or not they weren't going to

> treat you

[Guest guest]

>

> Can you tell me what test and what kind of doc gave you Cortef? The

> Doc I saw yesterday is not impressing me much. He gave me a fasting

> adrenal test script but didn't give me any directions about fasting.

Val,

Sorry so late, I'm way behind. The doc I'm currently seeing is a DO.

It's not that he's the greatest doc in the world, but he is reasonably

open-minded and he does pay attention to my symptoms and not disregard

them as " only stress " or mental problems like the endo did.

I took the Canary Club saliva test at home and took the results in,

and he was satisfied with that.

Nell

[Guest guest]

>

> Can you tell me what test and what kind of doc gave you Cortef? The

> Doc I saw yesterday is not impressing me much. He gave me a fasting

> adrenal test script but didn't give me any directions about fasting.

Val,

Sorry so late, I'm way behind. The doc I'm currently seeing is a DO.

It's not that he's the greatest doc in the world, but he is reasonably

open-minded and he does pay attention to my symptoms and not disregard

them as " only stress " or mental problems like the endo did.

I took the Canary Club saliva test at home and took the results in,

and he was satisfied with that.

Nell

[Guest guest]

>

> Can you tell me what test and what kind of doc gave you Cortef? The

> Doc I saw yesterday is not impressing me much. He gave me a fasting

> adrenal test script but didn't give me any directions about fasting.

Val,

Sorry so late, I'm way behind. The doc I'm currently seeing is a DO.

It's not that he's the greatest doc in the world, but he is reasonably

open-minded and he does pay attention to my symptoms and not disregard

them as " only stress " or mental problems like the endo did.

I took the Canary Club saliva test at home and took the results in,

and he was satisfied with that.

Nell