Re: Questions for Group

[Guest guest]

DR Grim's article on evolution of PA (in files) has the best info I

have found. Info. that tests out in my own case, that is.

You have to " tweak " your spiro. If too much, you'll get downward

spikes. The measuring method in Dr. Grim's instructions is important -

a regular schedule, then comparing days and events on those. To

figure out what affects your BP can vary for so many different reasons

it is hard to get the medians without a regular chart of daily

measurements - like before breakfast, lunch, dinner and bedtime. Then

too, you don't want to make any more than one big change at a time

(diet, meds, exercise, etc), so as to isolate effects.

My experience is a nightmare. Most doctors seem to have missed the

first day of med school on HTN. This is the first thing to rule out,

especially if there is low K, nocturia, lability, salt sensitivity,

etc. Actually, one confided they do not like PA because you can't do

anything but give aldactone or inspra, or throw the surgical dice,

maybe ending up back on meds. Some bilateral adrenalectomy patients I

met up at UCSF still have hyper aldo, and are now also addisonian.

They don't want to add a disease as serious as addison's.

Those are the patients who are undergoing study on " embryonic tissues. "

This is what I ask Dr Grim : if you don't have either adrenal gland,

and your aldosterone and other numbers are still the same as before

(PA), what may be causing this? One friend from college said " we

(doctors) just sort of block it out and send people somewhere else. "

" I don't like it, " therefore, becomes " I ignore it. " Other comments

about absence of financial incentive make one think " to treat illness,

they have to have incentives? Who decided that? Fire their asses at

the state board. No license, no negligence. "

Dave

On Apr 15, 2006, at 8:20 AM, shahall wrote:

> Having only gotten a confirmed diagnosis of PA on Tuesday, I'm trying

> to educate myself about this condition. Dr. Grim, this group and

> google have been an immense help and I've learned a lot in less than a

> week but I have a few questions I'd like to ask of others who have PA.

>

> 1. For the past few days I've been experiencing some intermittent

> orthostatic hypotension. Yesterday afternoon at work I became very

> dizzy and lightheaded, had to sit down quickly and felt almost

> immediately better. I grabbed a co-worker and had her check my BP,

> which was 116/68. Wow, that's great, I thought, and certainly should

> not be causing me symptoms. But upon standing I immediately felt

> light-headed and dizzy again. I had her retake BP standing and it was

> 74/48. She retook it - 82/52. Maybe I had this all along and it only

> became a problem as my BP is becoming better controlled on the

> increased spiro, I don't recall anyone ever checking standing and

> sitting BP's when I was so high. I haven't been dizzy at all so far

> today, BP this AM 134/74 sitting, 120/68 standing. Has anyone else

> experienced this problem?

>

> 2. I know many of you were misdiagnosed by Endos. Mine originally

> felt sure I had PA but then became unsure of the diagnosis because

> some of my labs didn't " fit the picture " . He messed around for almost

> a year trying to make me fit into what he thought was the classic PA

> profile. I now realize that if he'd known about the stages of PA or

> read Dr. Grim's paper he should have given me a firm diagnosis on

> first visit. My dilemma - do I keep going to him, give him a copy of

> Dr. Grim's paper and hope that he educates himself about PA or try to

> find someone else who hopefully knows more about it? He seems like a

> nice enough guy and he did say PA on my first visit but later changed

> his mind due to some lab results. Or do I need to follow with an Endo

> at all now that I have a diagnosis? Can my attending monitor labs &

> BP?

>

> 3. Not a question but an observation. For years I had a problem with

> nocturia and had to get up 2-3 times a night. I've been on Detrol LA

> for several years with no real change. I knew that in the past couple

> of months I've been sleeping through the night just fine and realized

> after I read Dr. Grim's paper that this started just about the time I

> first saw the Dr. at U of M who told me, " you need a lot more spiro "

> and doubled my dose. I haven't taken the Detrol for 4 days now and am

> still sleeping through the night. Gee, I never had " overactive

> bladder " at all.

>

> 4. I've been thinking about some really inappropriate and silly

> comments that were made to me over the years by various Drs. I bet

> some of you heard similar ones.

> -By a GP: " You're just too fat. Loose some of that weight and your

> BP will be fine " . I have a scale and a mirror and know that I need to

> loose weight, but what about the fact that my BP was high before I

> gained the weight?

> -By a cardiologist: " Why are you taking aldactone? It has minimal

> effect on BP, you know " . Well, not on my BP it doesn't.

> -By an Endo who has just about convinced himself that I don't have PA

> but can't justify my unprovoked hypokalemia when I'm off spiro:

> " You're not anorexic or bulimic, are you? " I'm sorry but I laughed.

> Being that I'm 5'3 " and weighed almost 200# at the time I thought it

> was one of the funniest things I'd ever heard.

>

> Thanks to everyone here for their help and any comments on the above.

> a

>

[Guest guest]

Thanks for your comments, Dave. The U of M Dr. told

me the same thing, I would have to find out what dose

of spiro works best for me. He had upped me to 100

bid but that seems to have been too much. I cut it

back to 75 bid two days ago and BP is running pretty

steady 120-130's, with occasional spikes up to 140.

Am I right in assuming that it no longer matters what

my aldosterone and renin is, the main goal is to keep

BP down and K+ up?

a

--- Dave <dave@...> wrote:

> DR Grim's article on evolution of PA (in files) has

> the best info I

> have found. Info. that tests out in my own case,

> that is.

>

> You have to " tweak " your spiro. If too much, you'll

> get downward

> spikes. The measuring method in Dr. Grim's

> instructions is important -

> a regular schedule, then comparing days and events

> on those. To

> figure out what affects your BP can vary for so many

> different reasons

> it is hard to get the medians without a regular

> chart of daily

> measurements - like before breakfast, lunch, dinner

> and bedtime. Then

> too, you don't want to make any more than one big

> change at a time

> (diet, meds, exercise, etc), so as to isolate

> effects.

>

> My experience is a nightmare. Most doctors seem to

> have missed the

> first day of med school on HTN. This is the first

> thing to rule out,

> especially if there is low K, nocturia, lability,

> salt sensitivity,

> etc. Actually, one confided they do not like PA

> because you can't do

> anything but give aldactone or inspra, or throw the

> surgical dice,

> maybe ending up back on meds. Some bilateral

> adrenalectomy patients I

> met up at UCSF still have hyper aldo, and are now

> also addisonian.

> They don't want to add a disease as serious as

> addison's.

>

> Those are the patients who are undergoing study on

> " embryonic tissues. "

>

> This is what I ask Dr Grim : if you don't have

> either adrenal gland,

> and your aldosterone and other numbers are still the

> same as before

> (PA), what may be causing this? One friend from

> college said " we

> (doctors) just sort of block it out and send people

> somewhere else. "

[Guest guest]

In a message dated 4/15/06 5:07:50 PM, dave@... writes:

This is what I ask Dr Grim : if you don't have either adrenal gland,

and your aldosterone and other numbers are still the same as before

(PA), what may be causing this?  One friend from college said "we

(doctors) just sort of block it out and send people somewhere else."

I have never seen a pt who has had a bilateral ADX and their aldo and cortisol numbers are still nomral. What I have found is that most ADX pts who have had PA are very sensitive to replacement doses of cortisol and mineralocorticoid and indeed many will not need mineraolocorticoid or they get HTN again. If I did see high aldos still I would suspect another tumor in the lungs, ovary or brain that is makeing too much aldo. They have been reported in all these areas.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin

[Guest guest]

In a message dated 4/15/06 10:23:17 AM, shahall@... writes:

Having only gotten a confirmed diagnosis of PA on Tuesday, I'm trying

to educate myself about this condition. Dr. Grim, this group and

google have been an immense help and I've learned a lot in less than a

week but I have a few questions I'd like to ask of others who have PA.

1.  For the past few days I've been experiencing some intermittent

orthostatic hypotension.  Yesterday afternoon at work I became very

dizzy and lightheaded, had to sit down quickly and felt almost

immediately better.  I grabbed a co-worker and had her check my BP,

which was 116/68.  Wow, that's great, I thought, and certainly should

not be causing me symptoms.  But upon standing I immediately felt

light-headed and dizzy again.  I had her retake BP standing and it was

74/48.  She retook it - 82/52.  Maybe I had this all along and it only

became a problem as my BP is becoming better controlled on the

increased spiro, I don't recall anyone ever checking standing and

sitting BP's when I was so high. I haven't been dizzy at all so far

today, BP this AM 134/74 sitting, 120/68 standing. Has anyone else

experienced this problem?

The spiro must be kicking in and you are on too many other BP meds. Tell your Dr.

2.  I know many of you were misdiagnosed by Endos.  Mine originally

felt sure I had PA but then became unsure of the diagnosis because

some of my labs didn't "fit the picture".  He messed around for almost

a year trying to make me fit into what he thought was the classic PA

profile.  I now realize that if he'd known about the stages of PA or

read Dr. Grim's paper he should have given me a firm diagnosis on

first visit.  My dilemma - do I keep going to him, give him a copy of

Dr. Grim's paper and hope that he educates himself about PA or try to

find someone else who hopefully knows more about it?  He seems like a

nice enough guy and he did say PA on my first visit but later changed

his mind due to some lab results.  Or do I need to follow with an Endo

at all now that I have a diagnosis?  Can my attending monitor labs & BP?

You need to find someone who has seen a number of PAs. Some Endos have and some have not seen any--well not recognized any as all Endos have seen them at one time or another --they just did not recognize them.

He knows you well now. Take my article and discuss these concerns with him. If he is educable the you have helped him and many of his other patients.

 

3.  Not a question but an observation.  For years I had a problem with

nocturia and had to get up 2-3 times a night.  I've been on Detrol LA

for several years with no real change.  I knew that in the past couple

of months I've been sleeping through the night just fine and realized

after I read Dr. Grim's paper that this started just about the time I

first saw the Dr. at U of M who told me, "you need a lot more spiro"

and doubled my dose.  I haven't taken the Detrol for 4 days now and am

still sleeping through the night.  Gee, I never had "overactive

bladder" at all.

Classic Sx of PA is nocutria. Nocturia only is not due to an overactive bladder.

4.  I've been thinking about some really inappropriate and silly

comments that were made to me over the years by various Drs.  I bet

some of you heard similar ones.

-By a GP:  "You're just too fat.  Loose some of that weight and your

BP will be fine".  I have a scale and a mirror and know that I need to

loose weight, but what about the fact that my BP was high before I

gained the weight?

-By a cardiologist:  "Why are you taking aldactone?  It has minimal

effect on BP, you know".  Well, not on my BP it doesn't.

-By an Endo who has just about convinced himself that I don't have PA

but can't justify my unprovoked hypokalemia when I'm off spiro:

"You're not anorexic or bulimic, are you?"  I'm sorry but I laughed.

Being that I'm 5'3" and weighed almost 200# at the time I thought it

was one of the funniest things I'd ever heard.

Thanks to everyone here for their help and any comments on the above.

a

Good notes and we have heard all the comments before unfortuantely.

Maybe we need a table to things I have been told to explain my PA before the DX was made. I think this would be an exellent list that can be added to from time to time.

[Guest guest]

In a message dated 4/16/06 2:41:25 PM, dave@... writes:

Thanks for your comments, Dave.  The U of M Dr. told

> me the same thing, I would have to find out what dose

> of spiro works best for me.  He had upped me to 100

> bid but that seems to have been too much.  I cut it

> back to 75 bid two days ago and BP is running pretty

> steady 120-130's, with occasional spikes up to 140.

> Am I right in assuming that it no longer matters what

> my aldosterone and renin is, the main goal is to keep

> BP down and K+ up?

>

> a

right indeed we dont usually measure it anymore once the DX is confirmed.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin

[Guest guest]

The 75mg spironolactone, with your DASH, exercise and sleep sounds like

you'll probably settle into a 120 range OK.

I added DASH after spiro. That allowed me to reduce spiro from 100 to

37. The aldo/renin " no longer matters " is my understanding. I also

can find no longrange following of PA people whose BP is thus

" controlled, " so have no idea if these aldo/renin levels " do " anything

else on the longterm. Just like there are no longrange studies on

people following adrenalectomy. Don't you love free market

medicine? Deregulation wasn't such a smart idea for public health

policy, IMO.

Any comments, Dr Grim?

Dave

On Apr 16, 2006, at 6:31 AM, a Hall wrote:

> Thanks for your comments, Dave. The U of M Dr. told

> me the same thing, I would have to find out what dose

> of spiro works best for me. He had upped me to 100

> bid but that seems to have been too much. I cut it

> back to 75 bid two days ago and BP is running pretty

> steady 120-130's, with occasional spikes up to 140.

> Am I right in assuming that it no longer matters what

> my aldosterone and renin is, the main goal is to keep

> BP down and K+ up?

>

> a

>

>

> --- Dave <dave@...> wrote:

>

>> DR Grim's article on evolution of PA (in files) has

>> the best info I

>> have found. Info. that tests out in my own case,

>> that is.

>>

>> You have to " tweak " your spiro. If too much, you'll

>> get downward

>> spikes. The measuring method in Dr. Grim's

>> instructions is important -

>> a regular schedule, then comparing days and events

>> on those. To

>> figure out what affects your BP can vary for so many

>> different reasons

>> it is hard to get the medians without a regular

>> chart of daily

>> measurements - like before breakfast, lunch, dinner

>> and bedtime. Then

>> too, you don't want to make any more than one big

>> change at a time

>> (diet, meds, exercise, etc), so as to isolate

>> effects.

>>

>> My experience is a nightmare. Most doctors seem to

>> have missed the

>> first day of med school on HTN. This is the first

>> thing to rule out,

>> especially if there is low K, nocturia, lability,

>> salt sensitivity,

>> etc. Actually, one confided they do not like PA

>> because you can't do

>> anything but give aldactone or inspra, or throw the

>> surgical dice,

>> maybe ending up back on meds. Some bilateral

>> adrenalectomy patients I

>> met up at UCSF still have hyper aldo, and are now

>> also addisonian.

>> They don't want to add a disease as serious as

>> addison's.

>>

>> Those are the patients who are undergoing study on

>> " embryonic tissues. "

>>

>> This is what I ask Dr Grim : if you don't have

>> either adrenal gland,

>> and your aldosterone and other numbers are still the

>> same as before

>> (PA), what may be causing this? One friend from

>> college said " we

>> (doctors) just sort of block it out and send people

>> somewhere else. "

>

>

[Guest guest]

Interesting. I only report my experiences at UCSF, and what they said.

Dave

On Apr 16, 2006, at 11:23 AM, lowerbp2@... wrote:

>

> In a message dated 4/15/06 5:07:50 PM, dave@... writes:

>

>

>> This is what I ask Dr Grim : if you don't have either adrenal gland,

>> and your aldosterone and other numbers are still the same as before

>> (PA), what may be causing this?  One friend from college said " we

>> (doctors) just sort of block it out and send people somewhere else. "

>>

>

>

> I have never seen a pt who has had a bilateral ADX and their aldo and

> cortisol numbers are still nomral.  What I have found is that most ADX

> pts who have had PA are very sensitive to replacement doses of

> cortisol and mineralocorticoid and indeed many will not need

> mineraolocorticoid or they get HTN again.  If I did see high aldos

> still I would suspect another tumor in the lungs, ovary or brain that

> is makeing too much aldo.  They have been reported in all these

> areas. 

>

>

>

> May your pressure be low!

>

> CE Grim, BS(Chem/Math), MS(Biochem), MD.

> Board Certified in Internal Medicine, Geriatrics and Hypertension

> Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

> Specializing in Difficult to Manage High Blood Pressure

> Clinical Professor of Medicine, Medical College of Wisconsin

>

[Guest guest]

LOL, I know what you mean. I was interested in finding out if

untreated PA or long term hyperaldosteronism causes EKG changes

because I have a very weird EKG. I searched PUBMED for EKG changes

and aldosterone. I found only one study regarding this and it was in

Russian. Just from reading some of the old posts here it seems that

this must be one of the most misdiagnosed conditions around. I

would think there would be lots of studies available considering the

potential complications of LVH, CHF and sudden death from low K+.

But I found lots of studies like these and how many people could

they possibly apply to? There needs to be a national push to educate

physicians and the public about PA and the importance of early

diagnosis.

-Long-term ECG studies on the problem of heart loading during

descent in skiing in the elderly

-Changes in the ECG related to alcohol drinking and its abuse

-Electrocardiography in the course of typhoid fevers in the young

adult

-Current aspects of the cardiac symptoms in African human

trypanosomiasis due to Trypanosoma gambiense

> can find no longrange following of PA people whose BP is thus

> " controlled, " so have no idea if these aldo/renin levels " do "

anything

> else on the longterm. Just like there are no longrange studies on

> people following adrenalectomy.

[Guest guest]

Dr Grim and a seem to be covnverging to a meeting about a table

(database) to fill in PA " stories. " Case study format?

Dave

On Apr 16, 2006, at 3:19 PM, shahall wrote:

> LOL, I know what you mean. I was interested in finding out if

> untreated PA or long term hyperaldosteronism causes EKG changes

> because I have a very weird EKG. I searched PUBMED for EKG changes

> and aldosterone. I found only one study regarding this and it was in

> Russian. Just from reading some of the old posts here it seems that

> this must be one of the most misdiagnosed conditions around. I

> would think there would be lots of studies available considering the

> potential complications of LVH, CHF and sudden death from low K+.

> But I found lots of studies like these and how many people could

> they possibly apply to? There needs to be a national push to educate

> physicians and the public about PA and the importance of early

> diagnosis.

> -Long-term ECG studies on the problem of heart loading during

> descent in skiing in the elderly

> -Changes in the ECG related to alcohol drinking and its abuse

> -Electrocardiography in the course of typhoid fevers in the young

> adult

> -Current aspects of the cardiac symptoms in African human

> trypanosomiasis due to Trypanosoma gambiense

>

>

>

>> can find no longrange following of PA people whose BP is thus

>> " controlled, " so have no idea if these aldo/renin levels " do "

> anything

>> else on the longterm. Just like there are no longrange studies on

>> people following adrenalectomy.

>

>

>

[Guest guest]

Hypokalemia from any cause is a cause of funny EKGs. Very common in PA. Indeed in some cases you can make the DX of low K just by looking at the EKG.--also very high K.

SEach for primary aldosteronism and you will find 9000 + references some of which report sudden death due to low K.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin

[Guest guest]

In a message dated 4/18/06 8:58:07 PM, glo@... writes:

I have a Endo appt on May 2nd and I hope to drill into her that she

needs to either call my former Endo in Boston for guidence or

recommend me to someone who is compentent in PA. Or get off her butt

and properly treat me.

Sorry for the rant but it is so fustrating dealing with Dr's who

refuse to listen or learn.

Gordon

Take her my article and ask her to join our group.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin

[Guest guest]

> 2. I know many of you were misdiagnosed by Endos. Mine originally

> felt sure I had PA but then became unsure of the diagnosis because

> some of my labs didn't " fit the picture " . He messed around for

almost

> a year trying to make me fit into what he thought was the classic

PA

> profile. I now realize that if he'd known about the stages of PA

or

> read Dr. Grim's paper he should have given me a firm diagnosis on

> first visit. My dilemma - do I keep going to him, give him a copy

of

> Dr. Grim's paper and hope that he educates himself about PA or try

to

> find someone else who hopefully knows more about it? He seems

like a

> nice enough guy and he did say PA on my first visit but later

changed

> his mind due to some lab results. Or do I need to follow with an

Endo

> at all now that I have a diagnosis? Can my attending monitor labs

& BP?

>

Greetings

When I lived in Boston my Internist was alarmed by my labs and sent

me stright to a Endo and a Cardio and within 3 months I had all the

tests and my PA was identified and was in the process of being

brought under control. That was the good old days.

Now I live in West Palm Beach FL and I have come unraveled. My Endo

refuses to answer my faxes, I have a Neph for a primary and is just

as bad and a Cardio that acts like Archie Bunker.

My BP is up to 180/90 from 105/60, I fill the bowl with foam when I

use the restroom, I have pitting Edema in my legs, and have gained

40+ lbs since New Years. My diet is the same and I have even

restricted even further my intake of salt.

Today I set up a sweat tent (sauna) in hopes that that will help

take some of the fluid out of me.

I have a Endo appt on May 2nd and I hope to drill into her that she

needs to either call my former Endo in Boston for guidence or

recommend me to someone who is compentent in PA. Or get off her butt

and properly treat me.

Sorry for the rant but it is so fustrating dealing with Dr's who

refuse to listen or learn.

Gordon