Re: I'm desperate!

June 30, 2004

If your BP and K are OK on even spiro and no side effects then that is the Rx of choice these days. If you get side effects from Spiro then try Inspra but may need to take 2 x a day and this adds up in costs-if insurance pays that is no problem.

So I only do adrenal veins now if BP cannot be controlled or K cannot be controlled or side effects of drugs-or a bump on the adrenal and the above.

Dr. Young at Mayo is excellent and has written almost as much as I have about Conn's. I have tlked to him about his experience with Inspra which is greater than mine. Many will need 200 mg per day and may need it 2 x a day-he says.

I would have to think a lot about the $$.

Tell you Dr. what it is you will have to pay.

In a message dated 6/30/04 7:52:49, rjf_at_fts@... writes:

I am diagnosed with primary hyperaldosteronism, and bilateral

hyperplaysia.Â Adrenal vein sampling last November was inconclusive

because of the right adrenal vein and the usual difficulties with

getting to it.Â I went on Inspra in December and my symptoms have

pretty much disappeared, I am doing well on it.Â My endocrinologist

recommended me to Mayo clinic in Rochester, and I am signed up to see

Dr Young there in August, to see if we can get a better diagnosis,

possibly one-sided and then a possible surgery recommendation.

I just found out that my insurance company will only pay for about 60%

of my trip to Mayo clinic.Â That means at least $8,000 out of my

pocket just for the vein sampling, and who knows how much more

depending on what other tests ar requested, and I don't have that kind

of money.

I am feeling desperate about this situation - I don't know whether to

put myself in debt and get the diagnosis from Mayo, or just live with

the drug therapy for life.Â What are the consequencese of this for me?

If I stay on the drug, will my health get worse, will the condition

worsen, or can I lead a fairly normal life?Â If I get the diagnosis

and then it determines I could do better with surgery, is surgery

really a cure, or just a possible cure and the chances are not that

great it would work?Â I am really in turmoil about this issue.Â Please

respond if you have some advice that can help me.

Jim Forsythe

June 30, 2004

-

Dear Jim:

If Inspra works for you, where is the problem? Surgury is

risky and can lead to far more side effects, for example, needing

drugs for what your adrenal is providing other than aldostrone.

Inspra is reversable, you can go off of it or have surgury. If you

have surgury, you can't reverse it.

Living with meds is a way of life as you get older. They work

well most of the time. I was in La Paz a few months ago, and in the

square near a church, I noticed that it was a social center. Many

Mexicans and their families visiting, mostly middle aged, young, and

children. I didn't see any oldsters. The only grey hairs where

active senior American touristas.

Inspra is probably a good diagnostic tool. It only blocks

aldosterone. If your bp is good, and Potassium normal, you a lucky

man. I had to wait 5 years for spirolactone, which has unpleasent

side effects, and another 3 years for Inspra, which has none. Wayne

-- In hyperaldosteronism , " Royden Forsythe "

June 30, 2004

What do you mean by 200 mg/2x a day - do you mean that the need for it

will increase to that level, or that some people initially need to

start at that level? If you mean the need will increase to that level

as the body adjusts over time, you are right about the costs... its a

costly drug and unless it comes down in cost that would be a lot.

Right now I am taking 25mg-1x day and doing well.

Jim

> If your BP and K are OK on even spiro and no side effects then that

is the Rx

> of choice these days. If you get side effects from Spiro then try

Inspra

> but may need to take 2 x a day and this adds up in costs-if

insurance pays that

> is no problem.

>

> So I only do adrenal veins now if BP cannot be controlled or K

cannot be

> controlled or side effects of drugs-or a bump on the adrenal and the

above.

>

> Dr. Young at Mayo is excellent and has written almost as much as I

have about

> Conn's. I have tlked to him about his experience with Inspra which is

> greater than mine. Many will need 200 mg per day and may need it 2

x a day-he

> says.

>

> I would have to think a lot about the $$.

>

> Tell you Dr. what it is you will have to pay.

> In a message dated 6/30/04 7:52:49, rjf_at_fts@y... writes:

>

> > I am diagnosed with primary hyperaldosteronism, and bilateral

> > hyperplaysia.Â Adrenal vein sampling last November was inconclusive

> > because of the right adrenal vein and the usual difficulties with

> > getting to it.Â I went on Inspra in December and my symptoms have

> > pretty much disappeared, I am doing well on it.Â My endocrinologist

> > recommended me to Mayo clinic in Rochester, and I am signed up to see

> > Dr Young there in August, to see if we can get a better diagnosis,

> > possibly one-sided and then a possible surgery recommendation.

> >

> > I just found out that my insurance company will only pay for about 60%

> > of my trip to Mayo clinic.Â That means at least $8,000 out of my

> > pocket just for the vein sampling, and who knows how much more

> > depending on what other tests ar requested, and I don't have that kind

> > of money.

> >

> > I am feeling desperate about this situation - I don't know whether to

> > put myself in debt and get the diagnosis from Mayo, or just live with

> > the drug therapy for life.Â What are the consequencese of this

for me?

> > If I stay on the drug, will my health get worse, will the condition

> > worsen, or can I lead a fairly normal life?Â If I get the diagnosis

> > and then it determines I could do better with surgery, is surgery

> > really a cure, or just a possible cure and the chances are not that

> > great it would work?Â I am really in turmoil about this issue.Â

Please

> > respond if you have some advice that can help me.

> >

> > Jim Forsythe

> >

June 30, 2004

Thanks for the feedback, Wayne. What has been your experience with

the drugs? Dr Grim implies that you have to keep increasing dosage

and associated costs to keep the body in check. Has that been your

experience?

Jim

> -

> Dear Jim:

> If Inspra works for you, where is the problem? Surgury is

> risky and can lead to far more side effects, for example, needing

> drugs for what your adrenal is providing other than aldostrone.

> Inspra is reversable, you can go off of it or have surgury. If you

> have surgury, you can't reverse it.

> Living with meds is a way of life as you get older. They work

> well most of the time. I was in La Paz a few months ago, and in the

> square near a church, I noticed that it was a social center. Many

> Mexicans and their families visiting, mostly middle aged, young, and

> children. I didn't see any oldsters. The only grey hairs where

> active senior American touristas.

> Inspra is probably a good diagnostic tool. It only blocks

> aldosterone. If your bp is good, and Potassium normal, you a lucky

> man. I had to wait 5 years for spirolactone, which has unpleasent

> side effects, and another 3 years for Inspra, which has none. Wayne

>

> -- In hyperaldosteronism , " Royden Forsythe "

June 30, 2004

Jim,

What readings did your left adrenal give off? I can personally speak

from the other opition. Your screwed both ways so to speak. You

have to decide the best route for yourself. If your stable and there

are not irritating side effects then I would probobly hang tight,

However if it gets complicated and your no longer comfortable on the

meds then you can go with the surgery. High BP will kill you but so

can low blood pressure. If you wound up with Addsions from the

adrenalecomy then you would require daily meds. But from personal

experience its not that bad. It can be though when the meds don't

work right or when you become ill with another ailment. For my

daugter and I sugery was the lesser of two evils. When I was small

there were not many BP meds that could be used on me (I was 1 1/2)

safely. My daughter had many more options but she was at or above

the reccomended doses for a child her age. Even on her meds 6

initally and then 3 following the first surgery she still sustained

some minor kidney damage. As it slowley repairs itself (they said it

should as she is so young) her BP creeps ever lower. If I can help

you as a sounding board about the surgery please let me know.

W Follow your gut it is your body.

July 1, 2004

, thanks for the honest reply. At first I was all gungho about

the issue of getting it diagnosed all the way so that I could make an

informed decision. The more I read on the net and hear from others,

the more I am wanting to avoid surgery unless necessary. At first I

was looking at it as the " cure " for this condition. Now I hear from

emedicine.com that 5 years after surgery I have almost a 50% chance of

getting high BP again. That plus the other risks of surgery have

turned me around about this. My readings for my first sampling were

normal on the left adrenal compared to the inferior vena cava, so that

was the other reason I was pursuing it, but I also have bilateral

hyperplaysia, so who knows if the left side might develop the problem

also later on after removal of the right (if the right is even the

problem, maybe its secondary hyperaldosteronism?). Its all so

complicated, and I have a lot less faith in the medical profession to

be able to diagnose than when I first started all this. I really

agree with you, screwed both ways - no guarantees in this issue at

all, and hard to decide. My gut right now tells me to stay the

current course, no more testing, no surgery, wait and see.

thanks for your candor,

Jim

> Jim,

> What readings did your left adrenal give off? I can personally speak

> from the other opition. Your screwed both ways so to speak. You

> have to decide the best route for yourself. If your stable and there

> are not irritating side effects then I would probobly hang tight,

> However if it gets complicated and your no longer comfortable on the

> meds then you can go with the surgery. High BP will kill you but so

> can low blood pressure. If you wound up with Addsions from the

> adrenalecomy then you would require daily meds. But from personal

> experience its not that bad. It can be though when the meds don't

> work right or when you become ill with another ailment. For my

> daugter and I sugery was the lesser of two evils. When I was small

> there were not many BP meds that could be used on me (I was 1 1/2)

> safely. My daughter had many more options but she was at or above

> the reccomended doses for a child her age. Even on her meds 6

> initally and then 3 following the first surgery she still sustained

> some minor kidney damage. As it slowley repairs itself (they said it

> should as she is so young) her BP creeps ever lower. If I can help

> you as a sounding board about the surgery please let me know.

> W Follow your gut it is your body.

July 1, 2004

But keep the BP and K under control.

In a message dated 7/1/2004 8:32:08 AM Eastern Daylight Time, " Royden

Forsythe " <rjf_at_fts@...> writes:

>, thanks for the honest reply. At first I was all gungho about

>the issue of getting it diagnosed all the way so that I could make an

>informed decision. The more I read on the net and hear from others,

>the more I am wanting to avoid surgery unless necessary. At first I

>was looking at it as the " cure " for this condition. Now I hear from

>emedicine.com that 5 years after surgery I have almost a 50% chance of

>getting high BP again. That plus the other risks of surgery have

>turned me around about this. My readings for my first sampling were

>normal on the left adrenal compared to the inferior vena cava, so that

>was the other reason I was pursuing it, but I also have bilateral

>hyperplaysia, so who knows if the left side might develop the problem

>also later on after removal of the right (if the right is even the

>problem, maybe its secondary hyperaldosteronism?). Its all so

>complicated, and I have a lot less faith in the medical profession to

>be able to diagnose than when I first started all this. I really

>agree with you, screwed both ways - no guarantees in this issue at

>all, and hard to decide. My gut right now tells me to stay the

>current course, no more testing, no surgery, wait and see.

>

>thanks for your candor,

>Jim

>

>> Jim,

>> What readings did your left adrenal give off? I can personally speak

>> from the other opition. Your screwed both ways so to speak. You

>> have to decide the best route for yourself. If your stable and there

>> are not irritating side effects then I would probobly hang tight,

>> However if it gets complicated and your no longer comfortable on the

>> meds then you can go with the surgery. High BP will kill you but so

>> can low blood pressure. If you wound up with Addsions from the

>> adrenalecomy then you would require daily meds. But from personal

>> experience its not that bad. It can be though when the meds don't

>> work right or when you become ill with another ailment. For my

>> daugter and I sugery was the lesser of two evils. When I was small

>> there were not many BP meds that could be used on me (I was 1 1/2)

>> safely. My daughter had many more options but she was at or above

>> the reccomended doses for a child her age. Even on her meds 6

>> initally and then 3 following the first surgery she still sustained

>> some minor kidney damage. As it slowley repairs itself (they said it

>> should as she is so young) her BP creeps ever lower. If I can help

>> you as a sounding board about the surgery please let me know.

>> W Follow your gut it is your body.

>

July 1, 2004

Dear Jim:

On spiro I actually had to eliminate some meds. Norvasc, for

example, and cut back on Accupril. Spiro worked for 2 years without

change in dosage. This was not true with normal blood pressure

meds. With time my body would seem to adapt, and higher and higher

doseages has a declining effect. Then I'd have try some new one.

I've only been on Inspra for 6 months, and the 50 mg/day seem to

be fine. BP about 125/85. Potassium is fine. But best of all-no

side effects, as I had with Spirolactone.

I understand as much as 200 mg/day of Inspra can be taken. If

you are not controlled on that, then surgury is probably the best

choise. Wayne

> > -

> > Dear Jim:

> > If Inspra works for you, where is the problem? Surgury is

> > risky and can lead to far more side effects, for example, needing

> > drugs for what your adrenal is providing other than aldostrone.

> > Inspra is reversable, you can go off of it or have surgury. If

you

> > have surgury, you can't reverse it.

> > Living with meds is a way of life as you get older. They

work

> > well most of the time. I was in La Paz a few months ago, and in

the

> > square near a church, I noticed that it was a social center.

Many

> > Mexicans and their families visiting, mostly middle aged, young,

and

> > children. I didn't see any oldsters. The only grey hairs where

> > active senior American touristas.

> > Inspra is probably a good diagnostic tool. It only blocks

> > aldosterone. If your bp is good, and Potassium normal, you a

lucky

> > man. I had to wait 5 years for spirolactone, which has

unpleasent

> > side effects, and another 3 years for Inspra, which has none.

Wayne

> >

> > -- In hyperaldosteronism , " Royden Forsythe "

July 1, 2004

Dear Jim:

On spiro I actually had to eliminate some meds. Norvasc, for

example, and cut back on Accupril. Spiro worked for 2 years without

change in dosage. This was not true with normal blood pressure

meds. With time my body would seem to adapt, and higher and higher

doseages has a declining effect. Then I'd have try some new one.

I've only been on Inspra for 6 months, and the 50 mg/day seem to

be fine. BP about 125/85. Potassium is fine. But best of all-no

side effects, as I had with Spirolactone.

I understand as much as 200 mg/day of Inspra can be taken. If

you are not controlled on that, then surgury is probably the best

choise. Wayne

> > -

> > Dear Jim:

> > If Inspra works for you, where is the problem? Surgury is

> > risky and can lead to far more side effects, for example, needing

> > drugs for what your adrenal is providing other than aldostrone.

> > Inspra is reversable, you can go off of it or have surgury. If

you

> > have surgury, you can't reverse it.

> > Living with meds is a way of life as you get older. They

work

> > well most of the time. I was in La Paz a few months ago, and in

the

> > square near a church, I noticed that it was a social center.

Many

> > Mexicans and their families visiting, mostly middle aged, young,

and

> > children. I didn't see any oldsters. The only grey hairs where

> > active senior American touristas.

> > Inspra is probably a good diagnostic tool. It only blocks

> > aldosterone. If your bp is good, and Potassium normal, you a

lucky

> > man. I had to wait 5 years for spirolactone, which has

unpleasent

> > side effects, and another 3 years for Inspra, which has none.

Wayne

> >

> > -- In hyperaldosteronism , " Royden Forsythe "

July 1, 2004

Some may need 200 bid.

But sounds like you are doning very well on only 25. Keep up the good work.

Although I have not heard of anyone commenging on a need to continuely incresae

the dose I have not seen that. Indeed many will need large doses at first (up

to 400 spiro) and then can be tapered down to only 25 esp if they do the DASH

diet.

In a message dated 6/30/2004 4:45:53 PM Eastern Daylight Time, " Royden

Forsythe " <rjf_at_fts@...> writes:

>What do you mean by 200 mg/2x a day - do you mean that the need for it

>will increase to that level, or that some people initially need to

>start at that level? Â If you mean the need will increase to that level

>as the body adjusts over time, you are right about the costs... its a

>costly drug and unless it comes down in cost that would be a lot.

>Right now I am taking 25mg-1x day and doing well.

>

>Jim

>

>> If your BP and K are OK on even spiro and no side effects then that

>is the Rx

>> of choice these days. Â If you get side effects from Spiro then try

>Inspra

>> but may need to take 2 x a day and this adds up in costs-if

>insurance pays that

>> is no problem.

>>

>> So I only do adrenal veins now if BP cannot be controlled or K

>cannot be

>> controlled or side effects of drugs-or a bump on the adrenal and the

>above.

>>

>> Dr. Young at Mayo is excellent and has written almost as much as I

>have about

>> Conn's. Â I have tlked to him about his experience with Inspra which is

>> greater than mine. Â Many will need 200 mg per day and may need it 2

>x a day-he

>> says.

>>

>> I would have to think a lot about the $$.

>>

>> Tell you Dr. what it is you will have to pay.

>> In a message dated 6/30/04 7:52:49, rjf_at_fts@y... writes:

>>

>> > I am diagnosed with primary hyperaldosteronism, and bilateral

>> > hyperplaysia.Ã‚ Â Adrenal vein sampling last November was inconclusive

>> > because of the right adrenal vein and the usual difficulties with

>> > getting to it.Ã‚ Â I went on Inspra in December and my symptoms have

>> > pretty much disappeared, I am doing well on it.Ã‚ Â My endocrinologist

>> > recommended me to Mayo clinic in Rochester, and I am signed up to see

>> > Dr Young there in August, to see if we can get a better diagnosis,

>> > possibly one-sided and then a possible surgery recommendation.

>> >

>> > I just found out that my insurance company will only pay for about 60%

>> > of my trip to Mayo clinic.Ã‚ Â That means at least $8,000 out of my

>> > pocket just for the vein sampling, and who knows how much more

>> > depending on what other tests ar requested, and I don't have that kind

>> > of money.

>> >

>> > I am feeling desperate about this situation - I don't know whether to

>> > put myself in debt and get the diagnosis from Mayo, or just live with

>> > the drug therapy for life.Ã‚ Â What are the consequencese of this

>for me?

>> > If I stay on the drug, will my health get worse, will the condition

>> > worsen, or can I lead a fairly normal life?Ã‚ Â If I get the diagnosis

>> > and then it determines I could do better with surgery, is surgery

>> > really a cure, or just a possible cure and the chances are not that

>> > great it would work?Ã‚ Â I am really in turmoil about this issue.Ã‚

>Please

>> > respond if you have some advice that can help me.

>> >

>> > Jim Forsythe

>> >

July 1, 2004