Re: Re: Draft abstract still updating information.

[Guest guest]

Only 250 words. On Mar 31, 2012, at 8:39 AM, Francis Bill SUSPECTED PA wrote: 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]

Only 250 words. On Mar 31, 2012, at 8:39 AM, Francis Bill SUSPECTED PA wrote: 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]

Sorry but I have decided that I will not be able to go to the ISH meeting in Australia and have withdrawn the abstract. Next meeting deadline that we can submit to is coming up and I attach a revision FYI.Was looking forward to the Satellite meeting in Brisbane as well. Next time.Next group may have more space.

Draft: Delayed Diagnosis of Primary Aldosteronism(PA)-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: PA presents

as drug resistant hypertension (DRHTN) and a diffuse/confusing symptom(Sx) complex

as hypokalemia(LoK) evolves. Laboratory testing(DX)

has revolutionized the ability to Dx/treat(Rx)/refer/improve lives in PA but many

are missed as PA is thought to be rare. Methods: In 2002 a

support group started by a patient with severe problems associated with PA was soon

joined by Dr. Grim. Over 500+ PAs

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

PA and LoK). Detailed information was contributed by 86(48% men) from 7

nations. Twelve pts had made the Dx themselves based on what they found on the

web. Results: Age=49(mean)±9SD,(range=27-67),

adenoma(s):unilateral(n=44)/bilateral(n=10), hyperplasia(n=32). Drs seen before

Dx=5±6(1-15), age HTN Dx=39(19-63), age LoK DX=44(21-63)yrs. Symptoms: DRHTN(93%), fatigue=75%,

nocturia>1=75% ), muscle cramps(63%), multiple ER visits for a complex of palpitations,

headaches, chest pains, muscle cramps, and anxiety (including what many refer

to as “mental fog”) and finding of severe HTN and LoK (90%). RX: Spironolactone Rx

in 44=98(12.5-300)mg/d, eplerenone in 14=89(20-200)mg/d). BP decreased

from 202±32/118±23 mmHg before DX to 131±15/82±11 after surgical(n=12)/medical Rx(n=74). A LoNa/HiK(DASH) diet is

a powerful adjunct to Rx in PA and stressing this has led to clear improvement

in HTN, Sx, and reduction in BP Rx. Conclusions: These PAs experienced

10 yrs of DRHTN and 5 yrs of LoK before Dx was made. We invite all who care for difficult HTN (and

their patients) to our Group to read “Conn's Stories” as we are certain

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

On Mar 31, 2012, at 12:02 PM, wrote: 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]

These would be HTN specialists from around the world. Next group will be more practitioners.If we could get everyone to contribute their data and got up to say 100 folks we can put together a paper I think for wide distribution. The more we have data on the more likely it is to get accepted. With 500 here should have more than 86 I would hope but we have what we have.Maybe even JAMA.CE Grim MDOn Mar 31, 2012, at 8:39 AM, Francis Bill SUSPECTED PA wrote: 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]

Yes and she was to discus this issue with her colleagues and will get back with me. I will get back with her.Thanks CE Grim MDOn Apr 7, 2012, at 9:01 AM, Francis Bill SUSPECTED PA wrote: 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. > > > > > > > > > > > > > >