Re: Latest abstract thanks for all your help.

April 20, 2009

If you're talking about AVERAGE BP, do you need to put in the

variations (+/-)?

Should HTN be spelled out the first time it is used (as you did

with primary aldosteronism)?

Muscle spelled wrong in one place (corrected)

I like that you mentioned the number of emails rather than the

number of members.

Side note: averagebear88

you are bouncing.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Sent: Monday, April 20, 2009 7:47 AM

hyperaldosteronism

Subject: Latest abstract thanks for all your help.

Delayed

Diagnosis of Primary Aldosteronism-help from the Web: a support group for

patients struggling with the diagnosis and long term management of this common

cause of difficult to control high blood pressure.

Grim CE,

Hall S, V, PEARSON HM and the 500+ members of hyperaldosteronism

at

Primary aldosteronism (PA)

is characterized by severe, drug-resistant HTN (ACEs, ARBs and BB

don’t work in PA) and disabling hypokalemia (LoK). An online support

group organized in 2002 by a single patient grew into a world-wide support

group. Many have made the diagnosis (Dx) themselves by searching the web

after frustration with their health care team’s failure to recognize the

association of LoK and drug resistant HTN . The average patient had seen

5 different Drs before Dx and average duration of poorly Rxed HTN was 10 (range

1-40) years. Average BP decreased from 212 ± 28/124 ± 23 mm Hg before DX

to 131 ± 15/83 ± 12 after Rx: (average spironolactone Rx 60 mg or eplerenone

120/d ).

Based on an analysis of this

experience, Dx should be suspected by the complex of drug resistant HTN (93%),

nocturia (75%), muscle cramps/fatigue (60%),

and multiple ER visits for a complex of symptoms of headaches, chest pains,

muscle cramps, and anxiety with severe HTN and LoK (90%)

Despite the fact that the

DASH diet is a powerful adjunct treatment for aldo/salt HTN only 14% had had

this recommended, DASH works remarkably well in controlling BP, LoK and

need for other HTN Rx.

We invite all caring

for difficult HTN to visit hyperaldosteronism at to read the

15,000+ emails and the “Conn's Stories” as we are certain

they will recognize some of their own patients and be spurred to Dx and Rx PA

in their own clinics.

April 20, 2009

The -+ is the SD. Will add that. Thanks will send another draft when back to MKETiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Apr 20, 2009, at 10:47 AM, Valarie <val@...> wrote:

If you're talking about AVERAGE BP, do you need to put in the

variations (+/-)?

Should HTN be spelled out the first time it is used (as you did

with primary aldosteronism)?

Muscle spelled wrong in one place (corrected)

I like that you mentioned the number of emails rather than the

number of members.

Side note: averagebear88

you are bouncing.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Sent: Monday, April 20, 2009 7:47 AM

hyperaldosteronism

Subject: Latest abstract thanks for all your help.

Delayed

Diagnosis of Primary Aldosteronism-help from the Web: a support group for

patients struggling with the diagnosis and long term management of this common

cause of difficult to control high blood pressure.

Grim CE,

Hall S, V, PEARSON HM and the 500+ members of hyperaldosteronism

at

Primary aldosteronism (PA)

is characterized by severe, drug-resistant HTN (ACEs, ARBs and BB

donâ€™t work in PA) and disabling hypokalemia (LoK). An online support

group organized in 2002 by a single patient grew into a world-wide support

group. Many have made the diagnosis (Dx) themselves by searching the web

after frustration with their health care teamâ€™s failure to recognize the

association of LoK and drug resistant HTN . The average patient had seen

5 different Drs before Dx and average duration of poorly Rxed HTN was 10 (range

1-40) years. Average BP decreased from 212 Â± 28/124 Â± 23 mm Hg before DX

to 131 Â± 15/83 Â± 12 after Rx: (average spironolactone Rx 60 mg or eplerenone

120/d ).

Based on an analysis of this

experience, Dx should be suspected by the complex of drug resistant HTN (93%),

nocturia (75%), muscle cramps/fatigue (60%),

and multiple ER visits for a complex of symptoms of headaches, chest pains,

muscle cramps, and anxiety with severe HTN and LoK (90%)

Despite the fact that the

DASH diet is a powerful adjunct treatment for aldo/salt HTN only 14% had had

this recommended, DASH works remarkably well in controlling BP, LoK and

need for other HTN Rx.

We invite all caring

for difficult HTN to visit hyperaldosteronism at to read the

15,000+ emails and the â€œConn's Storiesâ€ as we are certain

they will recognize some of their own patients and be spurred to Dx and Rx PA

in their own clinics.

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April 20, 2009

Hi,

I was just reading the abstracts and the last couple postings and had the following suggestion:

In the last paragraph where you have invited the health care professional to read the 15,000+ emails I wonder if this would happen. Many of the doctors I have encountered are limited with their time and think they have the information.

Would it help if each of the members created something like a profile to succintly capture their journey to the stage when the diagnosis was confirmed.

This profile could be updated throughout the time we spend on the group. This would provide the information in summary format to the doctors who want the information and also provide data for surveys.

Regards

Sue

From: Valarie <val@...>Subject: RE: Latest abstract thanks for all your help.hyperaldosteronism Received: Monday, April 20, 2009, 11:47 AM

If you're talking about AVERAGE BP, do you need to put in the variations (+/-)?

Should HTN be spelled out the first time it is used (as you did with primary aldosteronism) ?

Muscle spelled wrong in one place (corrected)

I like that you mentioned the number of emails rather than the number of members.

Side note: averagebear88 you are bouncing.

Val

From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Clarence GrimSent: Monday, April 20, 2009 7:47 AMhyperaldosteronismSubject: [hyperaldosteronism ] Latest abstract thanks for all your help.

Delayed Diagnosis of Primary Aldosteronism- help from the Web: a support group for patients struggling with the diagnosis and long term management of this common cause of difficult to control high blood pressure.

Grim CE, Hall S, V, PEARSON HM and the 500+ members of hyperaldosteronism at groups. com

Primary aldosteronism (PA) is characterized by severe, drug-resistant HTN (ACEs, ARBs and BB donâ€™t work in PA) and disabling hypokalemia (LoK). An online support group organized in 2002 by a single patient grew into a world-wide support group. Many have made the diagnosis (Dx) themselves by searching the web after frustration with their health care teamâ€™s failure to recognize the association of LoK and drug resistant HTN . The average patient had seen 5 different Drs before Dx and average duration of poorly Rxed HTN was 10 (range 1-40) years. Average BP decreased from 212 Â± 28/124 Â± 23 mm Hg before DX to 131 Â± 15/83 Â± 12 after Rx: (average spironolactone Rx 60 mg or eplerenone 120/d ).

Based on an analysis of this experience, Dx should be suspected by the complex of drug resistant HTN (93%), nocturia (75%), muscle cramps/fatigue (60%), and multiple ER visits for a complex of symptoms of headaches, chest pains, muscle cramps, and anxiety with severe HTN and LoK (90%)

Despite the fact that the DASH diet is a powerful adjunct treatment for aldo/salt HTN only 14% had had this recommended, DASH works remarkably well in controlling BP, LoK and need for other HTN Rx.

We invite all caring for difficult HTN to visit hyperaldosteronism at to read the 15,000+ emails and the â€œConn's Storiesâ€ as we are certain they will recognize some of their own patients and be spurred to Dx and Rx PA in their own clinics.

Looking for the perfect gift? Give the gift of Flickr!

April 20, 2009

The basic issue is how long it takes to get diagnosed and what is the

discipline of the physician who did it. It took me about 2-3 months

total from hypothesis to multiple blood results and CT scan report,

then another 2 weeks or so to start on Inspra. Call it three months.

All under one cardiologist at a major academic medical center in New

York City.

• How long?

• By who?

• Where?

Not anyone's life story. It is nobody else's business and nobody else

cares.

as

On Apr 20, 2009, at 12:56 PM, Sue james wrote:

>

> Hi,

>

> I was just reading the abstracts and the last couple postings and had

> the following suggestion:

>

> In the last paragraph where you have invited the health care

> professional to read the 15,000+ emails I wonder if this would happen.

> Many of the doctors I have encountered are limited with their time and

> think they have the information.

>

> Would it help if each of the members created something like a profile

> to succintly capture their journey to the stage when the diagnosis was

> confirmed.

>

> This profile could be updated throughout the time we spend on the

> group. This would provide the information in summary format to the

> doctors who want the information and also provide data for surveys.

>

> Regards

> Sue

>

>> From: Valarie <val@...>

>> Subject: RE: Latest abstract thanks for all your

>> help.

>> hyperaldosteronism

>> Received: Monday, April 20, 2009, 11:47 AM

>>

>> If you're talking about AVERAGE BP, do you need to put in the

>> variations (+/-)?

>>

>> Should HTN be spelled out the first time it is used (as you did with

>> primary aldosteronism) ?

>>

>> Muscle spelled wrong in one place (corrected)

>>

>> I like that you mentioned the number of emails rather than the number

>> of members.

>>

>> Side note: averagebear88 you are bouncing.

>>

>> Val

>>

>> From: hyperaldosteronism [mailto:hyperaldost

>> eronism@gro ups.com] On Behalf Of Clarence Grim

>> Sent: Monday, April 20, 2009 7:47 AM

>> hyperaldosteronism

>> Subject: [hyperaldosteronism ] Latest abstract thanks for all your

>> help.

>>

>> Delayed Diagnosis of Primary Aldosteronism- help from the Web: a

>> support group for patients struggling with the diagnosis and long

>> term management of this common cause of difficult to control high

>> blood pressure.

>>

>> Grim CE, Hall S, V, PEARSON HM and the 500+ members of

>> hyperaldosteronism at groups. com

>>

>> Primary aldosteronism (PA) is characterized by severe,

>> drug-resistant HTN (ACEs, ARBs and BB don’t work in PA) and disabling

>> hypokalemia (LoK). An online support group organized in 2002 by a

>> single patient grew into a world-wide support group. Many have made

>> the diagnosis (Dx) themselves by searching the web after frustration

>> with their health care team’s failure to recognize the association of

>> LoK and drug resistant HTN . The average patient had seen 5

>> different Drs before Dx and average duration of poorly Rxed HTN was

>> 10 (range 1-40) years. Average BP decreased from 212 ± 28/124 ± 23

>> mm Hg before DX to 131 ± 15/83 ± 12 after Rx: (average spironolactone

>> Rx 60 mg or eplerenone 120/d ).

>>

>> Based on an analysis of this experience, Dx should be suspected by

>> the complex of drug resistant HTN (93%), nocturia (75%), muscle

>> cramps/fatigue (60%), and multiple ER visits for a complex of

>> symptoms of headaches, chest pains, muscle cramps, and anxiety with

>> severe HTN and LoK (90%)

>>

>> Despite the fact that the DASH diet is a powerful adjunct treatment

>> for aldo/salt HTN only 14% had had this recommended, DASH works

>> remarkably well in controlling BP, LoK and need for other HTN Rx.

>>

>> We invite all caring for difficult HTN to visit hyperaldosteronism

>> at to read the 15,000+ emails and the “Conn's Stories”

>> as we are certain they will recognize some of their own patients and

>> be spurred to Dx and Rx PA in their own clinics.

> Looking for the perfect gift? Give the gift of Flickr!

>

April 20, 2009

I agree that inviting anyone to read 15,000 emails might be

off-putting a bit.Â Maybe it could be

rephrased to emphasize the enormous involvement but suggest reading some of the

stories.

Sue, is your story in the Conn's stories file?

The problem with updating a profile is that members get well and

disappear.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Sue james

Hi,

I

was just reading the abstracts and the last couple postings and had the

following suggestion:

In

the last paragraph where you have invited the health care professional to

read the 15,000+ emails I wonder if this would happen. Many of the doctors I

have encountered are limited with their time and think they have the

information.

Would

it help if each of the members created something like a profile to succintly

capture their journey to the stage when the diagnosis was confirmed.

This

profile could be updated throughout the time we spend on the group. This

would provide the information in summary format to the doctors who want the

information and also provide data for surveys.

April 20, 2009

Arthur, other's stories were my lifeline for a very long

time. You are fortunate to have

gotten such good care. Most

everyone here has been to hell and back trying to figure out what is wrong. Many have been told that their symptoms

are just mental illness or don't exist.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of arthur springer

The basic issue is how long it

takes to get diagnosed and what is the discipline of the physician who did it.

It took me about 2-3 months total from hypothesis to multiple blood results and

CT scan report, then another 2 weeks or so to start on Inspra. Call it three

months. All under one cardiologist at a major academic medical center in New

York City.

• How long?

• By who?

• Where?

Not anyone's life story. It is nobody else's business and nobody else cares.

as

April 20, 2009

Art: WE are trying to collect day on as many folks as possible. As you will note in the abstract many have suffered for years trying to get the correct DX. This may be more common in women (attributing problem to nothing) than in men but dont have enough data yet to analyse this. Your time to Dx is the shortest in our group to date.When one has classical stage it should be easy to DX but as our group illustrates this is not always the case.Most likely we collect those who have had the most problems. and others never get to our site.Good reason to try to figure out a way to have a national registry of all PAs. But no way to fund.CE Grim MDOn Apr 20, 2009, at 12:49 PM, Valarie wrote:Arthur, other's stories were my lifeline for a very long time. You are fortunate to have gotten such good care. Most everyone here has been to hell and back trying to figure out what is wrong. Many have been told that their symptoms are just mental illness or don't exist. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of arthur springerThe basic issue is how long it takes to get diagnosed and what is the discipline of the physician who did it. It took me about 2-3 months total from hypothesis to multiple blood results and CT scan report, then another 2 weeks or so to start on Inspra. Call it three months. All under one cardiologist at a major academic medical center in New York City. • How long?• By who?• Where? Not anyone's life story. It is nobody else's business and nobody else cares.as

April 20, 2009

done ... see my editing

On Apr 20, 2009, at 1:33 PM, Valarie wrote:

>

> I agree that inviting anyone to read 15,000 emails might be

> off-putting a bit. Maybe it could be rephrased to emphasize the

> enormous involvement but suggest reading some of the stories.

>

> Sue, is your story in the Conn's stories file?

>

> The problem with updating a profile is that members get well and

> disappear.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Sue james

>

> Hi,

>

> I was just reading the abstracts and the last couple postings and had

> the following suggestion:

>

> In the last paragraph where you have invited the health care

> professional to read the 15,000+ emails I wonder if this would

> happen. Many of the doctors I have encountered are limited with their

> time and think they have the information.

>

> Would it help if each of the members created something like a profile

> to succintly capture their journey to the stage when the diagnosis was

> confirmed.

>

>> This profile could be updated throughout the time we spend on the

>> group. This would provide the information in summary format to the

>> doctors who want the information and also provide data for surveys.

>

April 20, 2009

i know val. this is a major argument i am making in the process of

forcing the ny state health department to set up a rare diseases unit.

the how long/by who/ where are step one. i think that what you are

talking about is step 3 or 4 .... in group therapy after the medical

issues are under control. the kind of abusive doctoring you describe is

what happens in managed care on many serious problems and i have been

on the receiving end of that mindset more than once. i am not in

managed care now.

does your state health dept. have a decent rare disease unit? have you

ever sought treatment for PTSD?

========================================================================

============

On Apr 20, 2009, at 1:49 PM, Valarie wrote:

>

> Arthur, other's stories were my lifeline for a very long time. You

> are fortunate to have gotten such good care. Most everyone here has

> been to hell and back trying to figure out what is wrong. Many have

> been told that their symptoms are just mental illness or don't exist.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of arthur

> springer

>

> The basic issue is how long it takes to get diagnosed and what is the

> discipline of the physician who did it. It took me about 2-3 months

> total from hypothesis to multiple blood results and CT scan report,

> then another 2 weeks or so to start on Inspra. Call it three months.

> All under one cardiologist at a major academic medical center in New

> York City.

> • How long?

> • By who?

> • Where?

>

> Not anyone's life story. It is nobody else's business and nobody else

> cares.

> as

>

April 20, 2009

yes that is the reason I think we need to collect whatever data we can when folks first come on and thenn they can update it later if the Dx becomes clear.We also need to stress that their contribution will help others in the future. On Apr 20, 2009, at 1:41 PM, arthur springer wrote:done ... see my editingOn Apr 20, 2009, at 1:33 PM, Valarie wrote: I agree that inviting anyone to read 15,000 emails might be off-putting a bit. Maybe it could be rephrased to emphasize the enormous involvement but suggest reading some of the stories. Sue, is your story in the Conn's stories file? The problem with updating a profile is that members get well and disappear. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Sue jamesHi, I was just reading the abstracts and the last couple postings and had the following suggestion: In the last paragraph where you have invited the health care professional to read the 15,000+ emails I wonder if this would happen. Many of the doctors I have encountered are limited with their time and think they have the information. Would it help if each of the members created something like a profile to succintly capture their journey to the stage when the diagnosis was confirmed. This profile could be updated throughout the time we spend on the group. This would provide the information in summary format to the doctors who want the information and also provide data for surveys.

April 20, 2009

That's what I'm talking about, Arthur. Now you are suggesting I get group

therapy and treatment for PTSD. If

you read through the extensive list of anxiety comments I've collected, if you

read the posts over time, you will see that my " mental illness " is

not the only one of those who have PA.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of arthur springer

i know val. this is a major

argument i am making in the process of forcing the ny state health department

to set up a rare diseases unit. the how long/by who/ where are step one. i

think that what you are talking about is step 3 or 4 .... in group therapy

after the medical issues are under control. the kind of abusive doctoring you

describe is what happens in managed care on many serious problems and i have

been on the receiving end of that mindset more than once. i am not in managed

care now.

does your state health dept. have a decent rare disease unit? have you ever

sought treatment for PTSD?

April 20, 2009

Not sure how you define a rare disease. If 5% of HTN (70 million) have PA that is about 3.5 million with PA-prob not a rare disease. It is often seen but rarely recognized. CE Grim MD On Apr 20, 2009, at 1:48 PM, arthur springer wrote:i know val. this is a major argument i am making in the process of forcing the ny state health department to set up a rare diseases unit. the how long/by who/ where are step one. i think that what you are talking about is step 3 or 4 .... in group therapy after the medical issues are under control. the kind of abusive doctoring you describe is what happens in managed care on many serious problems and i have been on the receiving end of that mindset more than once. i am not in managed care now. does your state health dept. have a decent rare disease unit? have you ever sought treatment for PTSD?====================================================================================On Apr 20, 2009, at 1:49 PM, Valarie wrote: Arthur, other's stories were my lifeline for a very long time. You are fortunate to have gotten such good care. Most everyone here has been to hell and back trying to figure out what is wrong. Many have been told that their symptoms are just mental illness or don't exist. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of arthur springerThe basic issue is how long it takes to get diagnosed and what is the discipline of the physician who did it. It took me about 2-3 months total from hypothesis to multiple blood results and CT scan report, then another 2 weeks or so to start on Inspra. Call it three months. All under one cardiologist at a major academic medical center in New York City. • How long? • By who? • Where? Not anyone's life story. It is nobody else's business and nobody else cares. as

April 20, 2009

You misunderstood it again.

Your hairtrigger reactions are a PTSD symptom.

On Apr 20, 2009, at 3:20 PM, Valarie wrote:

>

> That's what I'm talking about, Arthur. Now you are suggesting I get

> group therapy and treatment for PTSD. If you read through the

> extensive list of anxiety comments I've collected, if you read the

> posts over time, you will see that my " mental illness " is not the only

> one of those who have PA.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of arthur

> springer

>

> i know val. this is a major argument i am making in the process of

> forcing the ny state health department to set up a rare diseases unit.

> the how long/by who/ where are step one. i think that what you are

> talking about is step 3 or 4 .... in group therapy after the medical

> issues are under control. the kind of abusive doctoring you describe

> is what happens in managed care on many serious problems and i have

> been on the receiving end of that mindset more than once. i am not in

> managed care now.

> does your state health dept. have a decent rare disease unit? have

> you ever sought treatment for PTSD?

>

April 20, 2009

mirror, mirron on the wall? ;-)CE Grim MDOn Apr 20, 2009, at 2:32 PM, arthur springer wrote:You misunderstood it again.Your hairtrigger reactions are a PTSD symptom.On Apr 20, 2009, at 3:20 PM, Valarie wrote: That's what I'm talking about, Arthur. Now you are suggesting I get group therapy and treatment for PTSD. If you read through the extensive list of anxiety comments I've collected, if you read the posts over time, you will see that my "mental illness" is not the only one of those who have PA. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of arthur springeri know val. this is a major argument i am making in the process of forcing the ny state health department to set up a rare diseases unit. the how long/by who/ where are step one. i think that what you are talking about is step 3 or 4 .... in group therapy after the medical issues are under control. the kind of abusive doctoring you describe is what happens in managed care on many serious problems and i have been on the receiving end of that mindset more than once. i am not in managed care now. does your state health dept. have a decent rare disease unit? have you ever sought treatment for PTSD?

April 20, 2009

This is what we are Trying to catch with our Conn's Stories File. Perhaps someone could count how many we have?Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Apr 20, 2009, at 12:09 PM, arthur springer <as99@...> wrote:The basic issue is how long it takes to get diagnosed and what is the discipline of the physician who did it. It took me about 2-3 months total from hypothesis to multiple blood results and CT scan report, then another 2 weeks or so to start on Inspra. Call it three months. All under one cardiologist at a major academic medical center in New York City. â€¢ How long?â€¢ By who?â€¢ Where? Not anyone's life story. It is nobody else's business and nobody else cares.as On Apr 20, 2009, at 12:56 PM, Sue james wrote:Hi, I was just reading the abstracts and the last couple postings and had the following suggestion: In the last paragraph where you have invited the health care professional to read the 15,000+ emails I wonder if this would happen. Many of the doctors I have encountered are limited with their time and think they have the information. Would it help if each of the members created something like a profile to succintly capture their journey to the stage when the diagnosis was confirmed. This profile could be updated throughout the time we spend on the group. This would provide the information in summary format to the doctors who want the information and also provide data for surveys. RegardsSueFrom: Valarie <val@...>Subject: RE: Latest abstract thanks for all your help.hyperaldosteronism Received: Monday, April 20, 2009, 11:47 AMIf you're talking about AVERAGE BP, do you need to put in the variations (+/-)? Should HTN be spelled out the first time it is used (as you did with primary aldosteronism) ? Muscle spelled wrong in one place (corrected) I like that you mentioned the number of emails rather than the number of members. Side note: averagebear88 you are bouncing. Val From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Clarence GrimSent: Monday, April 20, 2009 7:47 AMhyperaldosteronismSubject: [hyperaldosteronism ] Latest abstract thanks for all your help. Delayed Diagnosis of Primary Aldosteronism- help from the Web: a support group for patients struggling with the diagnosis and long term management of this common cause of difficult to control high blood pressure. Grim CE, Hall S, V, PEARSON HM and the 500+ members of hyperaldosteronism at groups. com Primary aldosteronism (PA) is characterized by severe, drug-resistant HTN (ACEs, ARBs and BB donâ€™t work in PA) and disabling hypokalemia (LoK). An online support group organized in 2002 by a single patient grew into a world-wide support group. Many have made the diagnosis (Dx) themselves by searching the web after frustration with their health care teamâ€™s failure to recognize the association of LoK and drug resistant HTN . The average patient had seen 5 different Drs before Dx and average duration of poorly Rxed HTN was 10 (range 1-40) years. Average BP decreased from 212 Â± 28/124 Â± 23 mm Hg before DX to 131 Â± 15/83 Â± 12 after Rx: (average spironolactone Rx 60 mg or eplerenone 120/d ). Based on an analysis of this experience, Dx should be suspected by the complex of drug resistant HTN (93%), nocturia (75%), muscle cramps/fatigue (60%), and multiple ER visits for a complex of symptoms of headaches, chest pains, muscle cramps, and anxiety with severe HTN and LoK (90%) Despite the fact that the DASH diet is a powerful adjunct treatment for aldo/salt HTN only 14% had had this recommended, DASH works remarkably well in controlling BP, LoK and need for other HTN Rx. We invite all caring for difficult HTN to visit hyperaldosteronism at to read the 15,000+ emails and the â€œConn's Storiesâ€ as we are certain they will recognize some of their own patients and be spurred to Dx and Rx PA in their own clinics. Looking for the perfect gift? Give the gift of Flickr!

April 21, 2009

Hi

My story is not in the file ... I have not been diagnosed yet even though I have a nodule in the right adrenal gland, high BP,low K and unsucessful AVS.

As soon as I get confirmation on diagnosis I will post story. Let me know if you want me to post before the diagnosis.

Sue

From: Valarie <val@...>Subject: RE: Latest abstract thanks for all your help.hyperaldosteronism Received: Monday, April 20, 2009, 1:33 PM

I agree that inviting anyone to read 15,000 emails might be off-putting a bit. Maybe it could be rephrased to emphasize the enormous involvement but suggest reading some of the stories.

Sue, is your story in the Conn's stories file?

The problem with updating a profile is that members get well and disappear.

Val

From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Sue james

Hi,

I was just reading the abstracts and the last couple postings and had the following suggestion:

In the last paragraph where you have invited the health care professional to read the 15,000+ emails I wonder if this would happen. Many of the doctors I have encountered are limited with their time and think they have the information.

Would it help if each of the members created something like a profile to succintly capture their journey to the stage when the diagnosis was confirmed.

This profile could be updated throughout the time we spend on the group. This would provide the information in summary format to the doctors who want the information and also provide data for surveys.

Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

April 21, 2009

It helps everyone for people to post their stories, even if not

complete. At this point, I remember

you had a compelling story but do not remember what it was. I'd love to be able to read it. When you want to change it, you just

substitute with an updated story.

If you need any help, just let me know. I need to go back and look at mine. I think it has about 90% superfluous

words. When I wrote it, I was

desperately seeking answers. Since

then, I've been to Mayo Clinic and still have no answers. I do have more knowledge of the disease

though.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Sue james

Hi

My

story is not in the file ... I have not been diagnosed yet even though I have

a nodule in the right adrenal gland, high BP,low K and unsucessful AVS.

As

soon as I get confirmation on diagnosis I will post story. Let me know

if you want me to post before the diagnosis.

Sue

From: Valarie <val@...>

Subject: RE: Latest abstract thanks for all your help.

hyperaldosteronism

Received: Monday, April 20, 2009, 1:33 PM

I agree that inviting anyone to read

15,000 emails might be off-putting a bit. Maybe it could be rephrased

to emphasize the enormous involvement but suggest reading some of the

stories.

Sue, is your story in the Conn's

stories file?

The problem with updating a profile is

that members get well and disappear.

Val

From:

hyperaldosteronism [mailto:hyperaldost eronism@gro

ups.com] On Behalf Of Sue james

Hi,

I was just reading the abstracts and the last couple postings and had

the following suggestion:

In the last paragraph where you have invited the health care

professional to read the 15,000+ emails I wonder if this would happen. Many

of the doctors I have encountered are limited with their time and think

they have the information.

Would it help if each of the members created something like a profile

to succintly capture their journey to the stage when the diagnosis was

confirmed.

This profile could be updated throughout the time we spend on the

group. This would provide the information in summary format to the doctors

who want the information and also provide data for surveys.

Canada Toolbar : Search from anywhere on the web

and bookmark your favourite sites. Download it now!

April 21, 2009

I do not disagree that I have PA. The thing is, I've been on spiro for a

year and I'm not well. We went out

for dinner tonight and I had to leave before service - brittle, nervous,

sweats, shakes, faintness - same old story. Shouldn't I be well on spiro? Dr. Young at Mayo said that surgery is

no different than spiro - the outcome is the same. I wonder if that is true, why ever do

surgery??? And if that's true, why am

I still symptomatic? Those are

rhetorical questions. I don't

expect you to answer (unless you have some wisdom I haven't heard). A week ago, I was walking on the

treadmill and lifting weights.

Today, I am too weak to get from the house to the car. Could this really be potassium changes?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2

Hmmmm. I swear we think you have PA of some type. How else

do we explain low renin and not low aldo? Esp on a very low Na diet.

Clarence E. Grim, BS, MS, MD

Am Dienstag 21 April 2009 um 03:20PM schrieb " Valarie " <val@...>:

I need to go back and look at mine. I think it has about 90%

>superfluous words. When I wrote it, I was desperately seeking answers.

>Since then, I've been to Mayo Clinic and still have no answers. I do have

>more knowledge of the disease though.

April 21, 2009

Hi Valarie

Gee you sound like me before my dose increase yesterday. That Dr. is a

creep,what a horrible thing to say to you. I have seen people do avs, get an

adrenal gland removed and get well and go on with life as if nothing happened.

There is only one other drug which Is inspra and it seemed to be rather good

when I tried it for a while till my pharmacyand ins became such a pain to deal

with. I dont think any body can really be well on spiro or anything else. Sich

is sick and it just gets worse. What is your rein and aldo readings is aldo over

range? I started out at 62 in 2006 now i am 300. What does brittle mean?

I think Dr. Young is a creap for not doing AVS last year for you after you laid

off spiro risking your well being, that kind of behavor is very very crule

and very unnecessary. A typical answer comming from a Endo they are truly the

most off the wall dr.s I have ever met. He has left you with no answers

regarding your illness. I would be pissed beyond believe if someone jerked me

around like that. You poor thing. I have thought about your experience at mayo

since I read about it last year.

Sorry you feel so bad. I increase my dose by 25mg divided. I am now up to 325mg

spiro divided daily. I got the madness to stop by adding 25mg yesterday. Now it

like it never happened. ita

>

> I do not disagree that I have PA. The thing is, I've been on spiro for a

> year and I'm not well. We went out for dinner tonight and I had to leave

> before service - brittle, nervous, sweats, shakes, faintness - same old

> story. Shouldn't I be well on spiro? Dr. Young at Mayo said that surgery

> is no different than spiro - the outcome is the same. I wonder if that is

> true, why ever do surgery??? And if that's true, why am I still

> symptomatic? Those are rhetorical questions. I don't expect you to answer

> (unless you have some wisdom I haven't heard). A week ago, I was walking on

> the treadmill and lifting weights. Today, I am too weak to get from the

> house to the car. Could this really be potassium changes?

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of lowerbp2

>

> Hmmmm. I swear we think you have PA of some type. How else do we explain low

> renin and not low aldo? Esp on a very low Na diet.

>

> Clarence E. Grim, BS, MS, MD

>

> Am Dienstag 21 April 2009 um 03:20PM schrieb " Valarie "

> <val@... <mailto:val%40wyosip.com> >:

>

> I need to go back and look at mine. I think it has about 90%

> >superfluous words. When I wrote it, I was desperately seeking answers.

> >Since then, I've been to Mayo Clinic and still have no answers. I do have

> >more knowledge of the disease though.

>

April 22, 2009

Only way to know is to check K when you are feeling bad. A spot urine K would

also be useful. I assume there is no family Hx of HTN or low K or intermittent

paralysis of unexplained cause.

As you may know too much thyroid can manifest as hypokalemic periodic paralysis

precipitated by a large CHO load. I suppose a form fruste of this could be your

symptoms. Rice is a classic one that can do this.

Remind us of how much spiro and etc you are on now. And how you take them.

Clarence E. Grim, BS, MS, MD

On Tuesday, April 21, 2009, at 10:30PM, " Valarie " <val@...> wrote:

>I do not disagree that I have PA. The thing is, I've been on spiro for a

>year and I'm not well. We went out for dinner tonight and I had to leave

>before service - brittle, nervous, sweats, shakes, faintness - same old

>story. Shouldn't I be well on spiro? Dr. Young at Mayo said that surgery

>is no different than spiro - the outcome is the same. I wonder if that is

>true, why ever do surgery??? And if that's true, why am I still

>symptomatic? Those are rhetorical questions. I don't expect you to answer

>(unless you have some wisdom I haven't heard). A week ago, I was walking on

>the treadmill and lifting weights. Today, I am too weak to get from the

>house to the car. Could this really be potassium changes?

>

>Val

>

>From: hyperaldosteronism

>[mailto:hyperaldosteronism ] On Behalf Of lowerbp2

>

>Hmmmm. I swear we think you have PA of some type. How else do we explain low

>renin and not low aldo? Esp on a very low Na diet.

>

>Clarence E. Grim, BS, MS, MD

>

>Am Dienstag 21 April 2009 um 03:20PM schrieb " Valarie "

><val@... <mailto:val%40wyosip.com> >:

>

>I need to go back and look at mine. I think it has about 90%

>>superfluous words. When I wrote it, I was desperately seeking answers.

>>Since then, I've been to Mayo Clinic and still have no answers. I do have

>>more knowledge of the disease though.

>

April 22, 2009

Can K be assessed in just one urine sample instead of a 24-hour

take?

My mother had a " suspected " infarction in her 40's

(diagnosed at Mayo after unsuccessful diagnoses over several years with local

doctors). She took a heart med for

the next 30 years (digitalis?). At

75, she had a bad heart attack, got a by-pass, and died of CHF at 81. Having watched my own symptoms, I

believe my mother was hypothyroid all those years. I have two daughters who are or will be

hypothyroid. In those last years, I

remember filling a lasix Rx for her but can't remember what else. There is no history of paralysis in my

family.

In terms of the brittle, etc., that I feel, I have tried

dropping thyroid meds way down and making myself considerably hypothyroid. At one point, about a year ago, I'd gone

so hypo that I used a heating pad on my feet under my desk. TSH was 4.6. That did not alter the anxious state but,

of course, made me feel worse. I

quit all coffee for several months with no positive change. Back on two cups/d, I have good weeks

and bad weeks. Whatever is going on

with me is not excess thyroid med or caffeine. My glucose tests have been very good

since I got off the HCTZ. Occasionally,

a CHO load will make the " brittle " a bit worse for a short

while. The cyclical nature of my

episodes is what lead me to think of Lyme.

I am disheartened each time one of these episodes starts. I am still amazed at how well I was

doing while in OK doing really heart wrenching duty.

I take 50 mg of spiro, two times/day.

A side note: My

brother has pulmonary fibrosis of unknown origin. I've heard that it can be an auto-immune

disorder. Short of a transplant, I

don't think he has long to live. He

is not processing sodium well and I've been trying to teach him. He was on Lasix and potassium. I kept asking him why they hadn't given

him spiro. At his last

hospitalization to remove excess water, guess what? They added spiro to the Lasix/K protocol. He is unable to tell me how much spiro. Minus the fluid, he's in better

shape. I keep telling him to

request aldosterone and renin tests but he never does. Now on spiro, it probably wouldn't matter

anyway.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2

Only way to know is to check K when you are feeling bad. A

spot urine K would also be useful. I assume there is no family Hx of HTN or low

K or intermittent paralysis of unexplained cause.