Re: Draft abstract still updating information.

[Guest guest]

Is this something most PCP are going to see? What is going to in it about K

blood draw? Missed DX because improper testing due to meds time of day other

factors?

>

> we are limited to 250 words in the abstract itself. Going to bed.

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

> a support group for patients struggling with diagnosis and long-

> term management.

>

>

>

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

> at

>

>

>

> Background: Primary aldosteronism (PA) presents as drug resistant

> hypertension (DRHTN) and a diffuse/confusing symptom complex as

> hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized

> the practitioner's ability to Dx/treat/refer/improve lives in PA but

> many are missed as PA is thought to be rare.

>

>

>

> Methods: An online support group was organized in 2002 by a patient

> with the myriad problems associated with PA(soon joined by Dr. Grim

> who serves as the medical consultant). Over 500+ PAs contribute

> support/education to new suspected/DXed patients (most with advanced

> PA). Detailed information was contributed by 88 (48% men) from 11

> nations.

>

>

>

> Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX),

> hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled

> HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg

> before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX).

> Spironolactone Rx=xx, eplerenone xx mg/d).

>

> Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%),

> multiple ER visits for complex of headaches, chest pains, muscle

> cramps, and anxiety (including what many refer to as " mental fog " ) and

> finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a

> powerful adjunct to Rx in PA but only 14% was this recommended.

> Stressing DASH has led to dramatic improvement in HTN, Sx, and need

> for BP Rx.

>

>

>

> Conclusions: Dx of PA is often missed as documented in this web

> support group. We invite all who care for difficult HTN to

> Groups to read the files on " Conn's Stories " as we are certain they

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

> PA.

>

[Guest guest]

I'm not sure who the audience is either. Are you intentionally limiting it to

Primary Aldosteronism or are you intending to address all forms of

Hyperaldosteronism(HA)? I ask this because if you are from " the Old School " I

believe this was originally the term for Conn's Syndrome and required a tumor

and low K. (If the reader is interested enough and bothers to look it up they

will look it up and see that many have expanded the meaning.) To verify this

statement I actually looked it up and found this site:

http://www.medscape.com/viewarticle/757144

a 2/08/2012 article in Medscape that has a lot of current info. (Others may

want to take a look at it, I scanned it and noticed they even suggest a trial of

Spironolactone where discontinuing bblockers is not feasible! I plan to print

it and take it to NIH with me tomorrow!)

I recommend if you don't want to change to HA, you at least acknowledge it early

and understand some will leave early! Francis' comment regarding problems with

K draws makes me think that should be a " stub " that references a dedicated

article that explains issues and correct procedures. Same for proper BP

Measurement, Chapter C103 in the Hypertension Primer 4th edition would be a good

reference for that! (IMHO) In fact a reference to C167 - Management of

Hyperaldosteronism and Hypercortisolism might also be appropriate!

My only other " knee jerk " is you use the term " mental fog " . That is the first

time I have seen that term and I believe most here refer to in as " brain fog " , a

term I have also seen while researching. Great draft, I will probably have

other suggestions after my " 2 week submersion " into the subject!

> >

> > we are limited to 250 words in the abstract itself. Going to bed.

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

> > a support group for patients struggling with diagnosis and long-

> > term management.

> >

> >

> >

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

> > at

> >

> >

> >

> > Background: Primary aldosteronism (PA) presents as drug resistant

> > hypertension (DRHTN) and a diffuse/confusing symptom complex as

> > hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized

> > the practitioner's ability to Dx/treat/refer/improve lives in PA but

> > many are missed as PA is thought to be rare.

> >

> >

> >

> > Methods: An online support group was organized in 2002 by a patient

> > with the myriad problems associated with PA(soon joined by Dr. Grim

> > who serves as the medical consultant). Over 500+ PAs contribute

> > support/education to new suspected/DXed patients (most with advanced

> > PA). Detailed information was contributed by 88 (48% men) from 11

> > nations.

> >

> >

> >

> > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX),

> > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled

> > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg

> > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX).

> > Spironolactone Rx=xx, eplerenone xx mg/d).

> >

> > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%),

> > multiple ER visits for complex of headaches, chest pains, muscle

> > cramps, and anxiety (including what many refer to as " mental fog " ) and

> > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a

> > powerful adjunct to Rx in PA but only 14% was this recommended.

> > Stressing DASH has led to dramatic improvement in HTN, Sx, and need

> > for BP Rx.

> >

> >

> >

> > Conclusions: Dx of PA is often missed as documented in this web

> > support group. We invite all who care for difficult HTN to

> > Groups to read the files on " Conn's Stories " as we are certain they

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

> > PA.

> >

>

[Guest guest]

"Mental fog" is used fequently and has been used through the years interchangeably with brain fog. I easily find many references, way too many to list, in relation to post bypass, fibro, menopause, many dementia conditions, and others where mental fog is used some back to the 1960's. Brain fog likely avoided by some as it would seem to imply somewhat of a brain pathology wherein mental fog does not as much. Don't think it's an issue.

From: <jclark24p@...>Subject: Re: Draft abstract still updating information.hyperaldosteronism Date: Saturday, March 31, 2012, 12:02 PM

I'm not sure who the audience is either. Are you intentionally limiting it to Primary Aldosteronism or are you intending to address all forms of Hyperaldosteronism(HA)? I ask this because if you are from "the Old School" I believe this was originally the term for Conn's Syndrome and required a tumor and low K. (If the reader is interested enough and bothers to look it up they will look it up and see that many have expanded the meaning.) To verify this statement I actually looked it up and found this site: http://www.medscape.com/viewarticle/757144a 2/08/2012 article in Medscape that has a lot of current info. (Others may want to take a look at it, I scanned it and noticed they even suggest a trial of Spironolactone where discontinuing bblockers is not feasible! I plan to print it and take it to NIH with me tomorrow!)I recommend if you don't

want to change to HA, you at least acknowledge it early and understand some will leave early! Francis' comment regarding problems with K draws makes me think that should be a "stub" that references a dedicated article that explains issues and correct procedures. Same for proper BP Measurement, Chapter C103 in the Hypertension Primer 4th edition would be a good reference for that! (IMHO) In fact a reference to C167 - Management of Hyperaldosteronism and Hypercortisolism might also be appropriate! My only other "knee jerk" is you use the term "mental fog". That is the first time I have seen that term and I believe most here refer to in as "brain fog", a term I have also seen while researching. Great draft, I will probably have other suggestions after my "2 week submersion" into the subject!> >> > we are limited to 250 words in the abstract itself. Going to bed.> > Draft: Delayed Diagnosis of Primary Aldosteronism-help from the Web: > > a support group for patients struggling with diagnosis and long- > > term management.> > > > > > >

> Grim CE, Hall S, V and the 500+ members of hyperaldosteronism > > at > > > > > > > > Background: Primary aldosteronism (PA) presents as drug resistant > > hypertension (DRHTN) and a diffuse/confusing symptom complex as > > hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized > > the practitioner's ability to Dx/treat/refer/improve lives in PA but > > many are missed as PA is thought to be rare.> > > > > > > > Methods: An online support group was organized in 2002 by a patient > > with the myriad problems associated with PA(soon joined by Dr. Grim > > who serves as the medical consultant). Over 500+ PAs contribute > > support/education to new suspected/DXed patients (most with advanced > > PA). Detailed information was contributed by 88 (48% men)

from 11 > > nations.> > > > > > > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), > > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled > > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg > > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX). > > Spironolactone Rx=xx, eplerenone xx mg/d).> > > > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), > > multiple ER visits for complex of headaches, chest pains, muscle > > cramps, and anxiety (including what many refer to as "mental fog") and > > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a > > powerful adjunct to Rx in PA but only 14% was this recommended. > > Stressing DASH has led to dramatic improvement in HTN, Sx, and need > >

for BP Rx.> > > > > > > > Conclusions: Dx of PA is often missed as documented in this web > > support group. We invite all who care for difficult HTN to > > Groups to read the files on "Conn's Stories" as we are certain they > > will recognize some of their own patients and be spurred to Dx and Rx > > PA.> >>

[Guest guest]

"multi-drug resistant" might be better as this is truly what helps lead to the diagnosis.

From: Clarence Grim <lowerbp2@...>Subject: Draft abstract still updating information.hyperaldosteronism Cc: "Grim Clarence" <lowerbp2@...>, "a Hall" <shahall@...>, " Valarie" <val@...>Date: Saturday, March 31, 2012, 4:14 AM

we are limited to 250 words in the abstract itself. Going to bed.

Draft: Delayed Diagnosis of Primary Aldosteronism-help from the Web: a support group for patients struggling with diagnosis and long-term management.

Grim CE, Hall S, V and the 500+ members of hyperaldosteronism at

Background: Primary aldosteronism (PA) presents as drug resistant hypertension (DRHTN) and a diffuse/confusing symptom complex as hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized the practitioner’s ability to Dx/treat/refer/improve lives in PA but many are missed as PA is thought to be rare.

Methods: An online support group was organized in 2002 by a patient with the myriad problems associated with PA(soon joined by Dr. Grim who serves as the medical consultant). Over 500+ PAs contribute support/education to new suspected/DXed patients (most with advanced PA). Detailed information was contributed by 88 (48% men) from 11 nations.

Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX). Spironolactone Rx=xx, eplerenone xx mg/d).

Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), multiple ER visits for complex of headaches, chest pains, muscle cramps, and anxiety (including what many refer to as “mental fogâ€) and finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a powerful adjunct to Rx in PA but only 14% was this recommended. Stressing DASH has led to dramatic improvement in HTN, Sx, and need for BP Rx.

Conclusions: Dx of PA is often missed as documented in this web support group. We invite all who care for difficult HTN to to read the files on “Conn's Stories†as we are certain they will recognize some of their own patients and be spurred to Dx and Rx PA.

[Guest guest]

At least for me multi-drug resistant would mean adverse side effects. I do not

want to feel any worse then I do so if given new meds and after one or two days

I feel worse I stop taking meds.

>

>

> From: Clarence Grim <lowerbp2@...>

> Subject: Draft abstract still updating information.

> hyperaldosteronism

> Cc: " Grim Clarence " <lowerbp2@...>, " a Hall " <shahall@...>, "

Valarie " <val@...>

> Date: Saturday, March 31, 2012, 4:14 AM

>

>

>

>  

>

>

>

> we are limited to 250 words in the abstract itself.  Going to bed.

>

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

support group for patients struggling with diagnosis and long-term management. 

>  

> Grim CE, Hall S, V and the 500+ members of hyperaldosteronism at

 

>  

> Background: Primary aldosteronism (PA) presents as drug resistant hypertension

(DRHTN) and a diffuse/confusing symptom complex as hypokalemia(LoK) evolves.

 Laboratory testing(DX) has revolutionized the practitioner’s ability to

Dx/treat/refer/improve lives in PA but many are missed as PA is thought to be

rare.

>  

> Methods: An online support group was organized in 2002 by a patient with the

myriad problems associated with PA(soon joined by Dr. Grim who serves as the

medical consultant).  Over 500+ PAs contribute support/education to new

suspected/DXed patients (most with advanced PA). Detailed information was

contributed by 88 (48% men) from 11 nations.

>  

> Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), hyperplasia(21). Drs

seen before Dx=5±X(range1-15), uncontrolled HTN=10 yrs(1-40), LoK=5(0-58)yrs.

BP decreased from 208±35/122±24 mmHg before DX to 128±15/78±15 after

surgical(XX) or medical Rx(XX). Spironolactone Rx=xx, eplerenone xx mg/d). 

> Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), multiple

ER visits for complex of headaches, chest pains, muscle cramps, and anxiety

(including what many refer to as “mental fogâ€) and finding of severe HTN and

LoK (90%).  RX: A LoNa/HiK(DASH) diet is a powerful adjunct to Rx in PA but

only 14% was this recommended.  Stressing DASH has led to dramatic improvement

in HTN, Sx, and need for BP Rx.

>  

> Conclusions:  Dx of PA is often missed as documented in this web support

group.  We invite all who care for difficult HTN to to read the

files on “Conn's Stories†as we are certain they will recognize some of

their own patients and be spurred to Dx and Rx PA. 

>

[Guest guest]

Not sure I follow what you're saying. I am saying PA has more to do with mutli-drug resistance hypertension as opposed to a single "drug resistance" . Having BP that doesn't respond to lisinopril only isn't going to raise flags, but if lisinopril, metoprolol, and amlodipine don't work than we look at something else causing it, like PA, and consistent with the guidelines.

from abstract below:

"presents as drug resistant hypertension (DRHTN) and...." I am sugesting it say multi-drug resistant hypertension (DRHTN)

From: Francis Bill SUSPECTED PA <georgewbill@...>Subject: Re: Draft abstract still updating information.hyperaldosteronism Date: Sunday, April 1, 2012, 7:22 AM

At least for me multi-drug resistant would mean adverse side effects. I do not want to feel any worse then I do so if given new meds and after one or two days I feel worse I stop taking meds. > > > From: Clarence Grim <lowerbp2@...>> Subject: Draft abstract still updating information.> hyperaldosteronism > Cc: "Grim Clarence" <lowerbp2@...>, "a Hall" <shahall@...>, " Valarie" <val@...>> Date: Saturday, March 31, 2012, 4:14 AM> > > > > > > > we are limited to 250 words in the abstract itself. Going to bed.> > Draft: Delayed Diagnosis of Primary Aldosteronism-help from the Web: a support group for patients struggling with diagnosis and long-term management. > > Grim CE, Hall S, V and the 500+ members of hyperaldosteronism at > > Background: Primary aldosteronism (PA) presents as drug resistant hypertension (DRHTN) and a diffuse/confusing symptom complex as hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized the practitioner’s ability

to Dx/treat/refer/improve lives in PA but many are missed as PA is thought to be rare. > > Methods: An online support group was organized in 2002 by a patient with the myriad problems associated with PA(soon joined by Dr. Grim who serves as the medical consultant). Over 500+ PAs contribute support/education to new suspected/DXed patients (most with advanced PA). Detailed information was contributed by 88 (48% men) from 11 nations.> > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX). Spironolactone Rx=xx, eplerenone xx mg/d). > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), multiple ER visits for complex of headaches, chest pains, muscle cramps, and anxiety

(including what many refer to as “mental fogâ€) and finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a powerful adjunct to Rx in PA but only 14% was this recommended. Stressing DASH has led to dramatic improvement in HTN, Sx, and need for BP Rx. > > Conclusions: Dx of PA is often missed as documented in this web support group. We invite all who care for difficult HTN to to read the files on “Conn's Stories†as we are certain they will recognize some of their own patients and be spurred to Dx and Rx PA. >

[Guest guest]

To know if a med is going to work you have to be able to take it. If a med makes

it hard to care for your self you most likely will not take it. I think if you

have PA B/P drugs can cause this more often then normal as I think others have

posted about.

So if one is given mutli-drugs that they do not take because they want to have

some kind of functioning life. Maybe they should be checked for PA

> >

> >

> > From: Clarence Grim <lowerbp2@>

> > Subject: Draft abstract still updating information.

> > hyperaldosteronism

> > Cc: " Grim Clarence " <lowerbp2@>, " a Hall " <shahall@>, " Valarie "

<val@>

> > Date: Saturday, March 31, 2012, 4:14 AM

> >

> >

> >

> >  

> >

> >

> >

> > we are limited to 250 words in the abstract itself.  Going to bed.

> >

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

support group for patients struggling with diagnosis and long-term

management. 

> >  

> > Grim CE, Hall S, V and the 500+ members of hyperaldosteronism at

 

> >  

> > Background: Primary aldosteronism (PA) presents as drug resistant

hypertension (DRHTN) and a diffuse/confusing symptom complex as hypokalemia(LoK)

evolves.  Laboratory testing(DX) has revolutionized the practitioner’s

ability to Dx/treat/refer/improve lives in PA but many are missed as PA is

thought to be rare.

> >  

> > Methods: An online support group was organized in 2002 by a patient with the

myriad problems associated with PA(soon joined by Dr. Grim who serves as the

medical consultant).  Over 500+ PAs contribute support/education to new

suspected/DXed patients (most with advanced PA). Detailed information was

contributed by 88 (48% men) from 11 nations.

> >  

> > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), hyperplasia(21).

Drs seen before Dx=5±X(range1-15), uncontrolled HTN=10 yrs(1-40),

LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg before DX to

128±15/78±15 after surgical(XX) or medical Rx(XX). Spironolactone Rx=xx,

eplerenone xx mg/d). 

> > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%),

multiple ER visits for complex of headaches, chest pains, muscle cramps, and

anxiety (including what many refer to as “mental fogâ€) and finding of severe

HTN and LoK (90%).  RX: A LoNa/HiK(DASH) diet is a powerful adjunct to Rx in PA

but only 14% was this recommended.  Stressing DASH has led to dramatic

improvement in HTN, Sx, and need for BP Rx.

> >  

> > Conclusions:  Dx of PA is often missed as documented in this web support

group.  We invite all who care for difficult HTN to to read the

files on “Conn's Stories†as we are certain they will recognize some of

their own patients and be spurred to Dx and Rx PA. 

> >

>

[Guest guest]

, I'm cool with that, especially if it is better known in the medical

profession

I had not heard the term. Maybe we should change here (it is a better

description.)

> > >

> > > we are limited to 250 words in the abstract itself. Going to bed.

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

> > > a support group for patients struggling with diagnosis and long-

> > > term management.

> > >

> > >

> > >

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

> > > at

> > >

> > >

> > >

> > > Background: Primary aldosteronism (PA) presents as drug resistant

> > > hypertension (DRHTN) and a diffuse/confusing symptom complex as

> > > hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized

> > > the practitioner's ability to Dx/treat/refer/improve lives in PA but

> > > many are missed as PA is thought to be rare.

> > >

> > >

> > >

> > > Methods: An online support group was organized in 2002 by a patient

> > > with the myriad problems associated with PA(soon joined by Dr. Grim

> > > who serves as the medical consultant). Over 500+ PAs contribute

> > > support/education to new suspected/DXed patients (most with advanced

> > > PA). Detailed information was contributed by 88 (48% men) from 11

> > > nations.

> > >

> > >

> > >

> > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX),

> > > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled

> > > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg

> > > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX).

> > > Spironolactone Rx=xx, eplerenone xx mg/d).

> > >

> > > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%),

> > > multiple ER visits for complex of headaches, chest pains, muscle

> > > cramps, and anxiety (including what many refer to as " mental fog " ) and

> > > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a

> > > powerful adjunct to Rx in PA but only 14% was this recommended.

> > > Stressing DASH has led to dramatic improvement in HTN, Sx, and need

> > > for BP Rx.

> > >

> > >

> > >

> > > Conclusions: Dx of PA is often missed as documented in this web

> > > support group. We invite all who care for difficult HTN to

> > > Groups to read the files on " Conn's Stories " as we are certain they

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

> > > PA.

> > >

> >

>

[Guest guest]

, I'm cool with that, especially if it is better known in the medical

profession

I had not heard the term. Maybe we should change here (it is a better

description.)

> > >

> > > we are limited to 250 words in the abstract itself. Going to bed.

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

> > > a support group for patients struggling with diagnosis and long-

> > > term management.

> > >

> > >

> > >

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

> > > at

> > >

> > >

> > >

> > > Background: Primary aldosteronism (PA) presents as drug resistant

> > > hypertension (DRHTN) and a diffuse/confusing symptom complex as

> > > hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized

> > > the practitioner's ability to Dx/treat/refer/improve lives in PA but

> > > many are missed as PA is thought to be rare.

> > >

> > >

> > >

> > > Methods: An online support group was organized in 2002 by a patient

> > > with the myriad problems associated with PA(soon joined by Dr. Grim

> > > who serves as the medical consultant). Over 500+ PAs contribute

> > > support/education to new suspected/DXed patients (most with advanced

> > > PA). Detailed information was contributed by 88 (48% men) from 11

> > > nations.

> > >

> > >

> > >

> > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX),

> > > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled

> > > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg

> > > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX).

> > > Spironolactone Rx=xx, eplerenone xx mg/d).

> > >

> > > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%),

> > > multiple ER visits for complex of headaches, chest pains, muscle

> > > cramps, and anxiety (including what many refer to as " mental fog " ) and

> > > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a

> > > powerful adjunct to Rx in PA but only 14% was this recommended.

> > > Stressing DASH has led to dramatic improvement in HTN, Sx, and need

> > > for BP Rx.

> > >

> > >

> > >

> > > Conclusions: Dx of PA is often missed as documented in this web

> > > support group. We invite all who care for difficult HTN to

> > > Groups to read the files on " Conn's Stories " as we are certain they

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

> > > PA.

> > >

> >

>

[Guest guest]

When JW Conn operated on the first patient they expected to find bilateral hyperplasia secreting excess DOCA or DOCA like steroids. This was based on his prior metabolic studies of how the body adapts to heat. Done during WWII funded Army research. He never called to Conn's Syndrome. Others did. He reported that his heart jumped when they found the adenoma as he knew he had found something important. Aldosterone had not yet been discovered. And it was not known what controlled aldosterone secretion at that time. On Apr 1, 2012, at 3:04 PM, wrote: , I'm cool with that, especially if it is better known in the medical profession I had not heard the term. Maybe we should change here (it is a better description.) > > > > > > we are limited to 250 words in the abstract itself. Going to bed. > > > Draft: Delayed Diagnosis of Primary Aldosteronism-help from the Web: > > > a support group for patients struggling with diagnosis and long- > > > term management. > > > > > > > > > > > > Grim CE, Hall S, V and the 500+ members of hyperaldosteronism > > > at > > > > > > > > > > > > Background: Primary aldosteronism (PA) presents as drug resistant > > > hypertension (DRHTN) and a diffuse/confusing symptom complex as > > > hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized > > > the practitioner's ability to Dx/treat/refer/improve lives in PA but > > > many are missed as PA is thought to be rare. > > > > > > > > > > > > Methods: An online support group was organized in 2002 by a patient > > > with the myriad problems associated with PA(soon joined by Dr. Grim > > > who serves as the medical consultant). Over 500+ PAs contribute > > > support/education to new suspected/DXed patients (most with advanced > > > PA). Detailed information was contributed by 88 (48% men) from 11 > > > nations. > > > > > > > > > > > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), > > > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled > > > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg > > > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX). > > > Spironolactone Rx=xx, eplerenone xx mg/d). > > > > > > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), > > > multiple ER visits for complex of headaches, chest pains, muscle > > > cramps, and anxiety (including what many refer to as "mental fog") and > > > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a > > > powerful adjunct to Rx in PA but only 14% was this recommended. > > > Stressing DASH has led to dramatic improvement in HTN, Sx, and need > > > for BP Rx. > > > > > > > > > > > > Conclusions: Dx of PA is often missed as documented in this web > > > support group. We invite all who care for difficult HTN to > > > Groups to read the files on "Conn's Stories" as we are certain they > > > will recognize some of their own patients and be spurred to Dx and Rx > > > PA. > > > > > >

[Guest guest]

Yes I include drug side effects as part of the picture. Better term would be multiple drug reisistance/intolerance.ThanksOn Apr 1, 2012, at 7:22 AM, Francis Bill SUSPECTED PA wrote: At least for me multi-drug resistant would mean adverse side effects. I do not want to feel any worse then I do so if given new meds and after one or two days I feel worse I stop taking meds. > > > From: Clarence Grim <lowerbp2@...> > Subject: Draft abstract still updating information. > hyperaldosteronism > Cc: "Grim Clarence" <lowerbp2@...>, "a Hall" <shahall@...>, " Valarie" <val@...> > Date: Saturday, March 31, 2012, 4:14 AM > > > > > > > > we are limited to 250 words in the abstract itself. Going to bed. > > Draft: Delayed Diagnosis of Primary Aldosteronism-help from the Web: a support group for patients struggling with diagnosis and long-term management. > > Grim CE, Hall S, V and the 500+ members of hyperaldosteronism at > > Background: Primary aldosteronism (PA) presents as drug resistant hypertension (DRHTN) and a diffuse/confusing symptom complex as hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized the practitioner’s ability to Dx/treat/refer/improve lives in PA but many are missed as PA is thought to be rare. > > Methods: An online support group was organized in 2002 by a patient with the myriad problems associated with PA(soon joined by Dr. Grim who serves as the medical consultant). Over 500+ PAs contribute support/education to new suspected/DXed patients (most with advanced PA). Detailed information was contributed by 88 (48% men) from 11 nations. > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX). Spironolactone Rx=xx, eplerenone xx mg/d). > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), multiple ER visits for complex of headaches, chest pains, muscle cramps, and anxiety (including what many refer to as “mental fog”) and finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a powerful adjunct to Rx in PA but only 14% was this recommended. Stressing DASH has led to dramatic improvement in HTN, Sx, and need for BP Rx. > > Conclusions: Dx of PA is often missed as documented in this web support group. We invite all who care for difficult HTN to to read the files on “Conn's Stories” as we are certain they will recognize some of their own patients and be spurred to Dx and Rx PA. >

[Guest guest]

I have corresponded with a Psych who has a book on this issue but can't recall her name. Someone sent link to her book in past few months and she is in Wikipedia. On Mar 31, 2012, at 11:32 PM, Bingham wrote: "Mental fog" is used fequently and has been used through the years interchangeably with brain fog. I easily find many references, way too many to list, in relation to post bypass, fibro, menopause, many dementia conditions, and others where mental fog is used some back to the 1960's. Brain fog likely avoided by some as it would seem to imply somewhat of a brain pathology wherein mental fog does not as much. Don't think it's an issue. From: <jclark24p@...>Subject: Re: Draft abstract still updating information.hyperaldosteronism Date: Saturday, March 31, 2012, 12:02 PM I'm not sure who the audience is either. Are you intentionally limiting it to Primary Aldosteronism or are you intending to address all forms of Hyperaldosteronism(HA)? I ask this because if you are from "the Old School" I believe this was originally the term for Conn's Syndrome and required a tumor and low K. (If the reader is interested enough and bothers to look it up they will look it up and see that many have expanded the meaning.) To verify this statement I actually looked it up and found this site: http://www.medscape.com/viewarticle/757144a 2/08/2012 article in Medscape that has a lot of current info. (Others may want to take a look at it, I scanned it and noticed they even suggest a trial of Spironolactone where discontinuing bblockers is not feasible! I plan to print it and take it to NIH with me tomorrow!)I recommend if you don't want to change to HA, you at least acknowledge it early and understand some will leave early! Francis' comment regarding problems with K draws makes me think that should be a "stub" that references a dedicated article that explains issues and correct procedures. Same for proper BP Measurement, Chapter C103 in the Hypertension Primer 4th edition would be a good reference for that! (IMHO) In fact a reference to C167 - Management of Hyperaldosteronism and Hypercortisolism might also be appropriate! My only other "knee jerk" is you use the term "mental fog". That is the first time I have seen that term and I believe most here refer to in as "brain fog", a term I have also seen while researching. Great draft, I will probably have other suggestions after my "2 week submersion" into the subject!> >> > we are limited to 250 words in the abstract itself. Going to bed.> > Draft: Delayed Diagnosis of Primary Aldosteronism-help from the Web: > > a support group for patients struggling with diagnosis and long- > > term management.> > > > > > > > Grim CE, Hall S, V and the 500+ members of hyperaldosteronism > > at > > > > > > > > Background: Primary aldosteronism (PA) presents as drug resistant > > hypertension (DRHTN) and a diffuse/confusing symptom complex as > > hypokalemia(LoK) evolves. Laboratory testing(DX) has revolutionized > > the practitioner's ability to Dx/treat/refer/improve lives in PA but > > many are missed as PA is thought to be rare.> > > > > > > > Methods: An online support group was organized in 2002 by a patient > > with the myriad problems associated with PA(soon joined by Dr. Grim > > who serves as the medical consultant). Over 500+ PAs contribute > > support/education to new suspected/DXed patients (most with advanced > > PA). Detailed information was contributed by 88 (48% men) from 11 > > nations.> > > > > > > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX), > > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled > > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from 208±35/122±24 mmHg > > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX). > > Spironolactone Rx=xx, eplerenone xx mg/d).> > > > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle cramps(XX%), > > multiple ER visits for complex of headaches, chest pains, muscle > > cramps, and anxiety (including what many refer to as "mental fog") and > > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet is a > > powerful adjunct to Rx in PA but only 14% was this recommended. > > Stressing DASH has led to dramatic improvement in HTN, Sx, and need > > for BP Rx.> > > > > > > > Conclusions: Dx of PA is often missed as documented in this web > > support group. We invite all who care for difficult HTN to > > Groups to read the files on "Conn's Stories" as we are certain they > > will recognize some of their own patients and be spurred to Dx and Rx > > PA.> >>

[Guest guest]

Believe this is who you corresponded with. Barbara Schildkrout, MD, a

board-certified psychiatrist and clinical instructor in psychiatry at the

Harvard Medical School

> > > >

> > > > we are limited to 250 words in the abstract itself. Going to bed.

> > > > Draft: Delayed Diagnosis of Primary Aldosteronism-help from the

> > Web:

> > > > a support group for patients struggling with diagnosis and

> > long-

> > > > term management.

> > > >

> > > >

> > > >

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

> > hyperaldosteronism

> > > > at

> > > >

> > > >

> > > >

> > > > Background: Primary aldosteronism (PA) presents as drug resistant

> > > > hypertension (DRHTN) and a diffuse/confusing symptom complex as

> > > > hypokalemia(LoK) evolves. Laboratory testing(DX) has

> > revolutionized

> > > > the practitioner's ability to Dx/treat/refer/improve lives in PA

> > but

> > > > many are missed as PA is thought to be rare.

> > > >

> > > >

> > > >

> > > > Methods: An online support group was organized in 2002 by a

> > patient

> > > > with the myriad problems associated with PA(soon joined by Dr.

> > Grim

> > > > who serves as the medical consultant). Over 500+ PAs contribute

> > > > support/education to new suspected/DXed patients (most with

> > advanced

> > > > PA). Detailed information was contributed by 88 (48% men) from 11

> > > > nations.

> > > >

> > > >

> > > >

> > > > Results: Age XX, adenoma(s):unilateral(XX)/bilateral(XX),

> > > > hyperplasia(21). Drs seen before Dx=5±X(range1-15), uncontrolled

> > > > HTN=10 yrs(1-40), LoK=5(0-58)yrs. BP decreased from

> > 208±35/122±24 mmHg

> > > > before DX to 128±15/78±15 after surgical(XX) or medical Rx(XX).

> > > > Spironolactone Rx=xx, eplerenone xx mg/d).

> > > >

> > > > Symptoms: DRHTN(93%), fatigue=75%, nocturia=75%), muscle

> > cramps(XX%),

> > > > multiple ER visits for complex of headaches, chest pains, muscle

> > > > cramps, and anxiety (including what many refer to as " mental

> > fog " ) and

> > > > finding of severe HTN and LoK (90%). RX: A LoNa/HiK(DASH) diet

> > is a

> > > > powerful adjunct to Rx in PA but only 14% was this recommended.

> > > > Stressing DASH has led to dramatic improvement in HTN, Sx, and

> > need

> > > > for BP Rx.

> > > >

> > > >

> > > >

> > > > Conclusions: Dx of PA is often missed as documented in this web

> > > > support group. We invite all who care for difficult HTN to

> > > > Groups to read the files on " Conn's Stories " as we are certain

> > they

> > > > will recognize some of their own patients and be spurred to Dx

> > and Rx

> > > > PA.

> > > >

> > >

> >

> >

> >

>