Re: New to Group: My Story and Questions

[Guest guest]

Hi Garry and welcome to the board.

You seem to me to have all the classic symptoms. Actually I think your Endo

seems more knowledgeable than most and is correct in his approach. I had a

fairly similar path to diagnosis. I went on Spiro for 7-8 months until I

started to get the male breast side effects. Then I went to Inspra. Inspra was

barely available to the market about 4 years ago. We chose to start on Spiro

because the doctor knew more about it and we wanted to stay with something tried

and true while I weaned myself off 7 BP meds. The beta blockers were the worst,

I had been on them for at least 14-15 years and I am sure I was addicted to

them.

After I went to Inspra I had a little bit of a rolller-coaster ride setting the

dosage but finally got it stable. We didn't realize that you needed to take

more Inspra in relation to the dosage of Spiro. I now take about 3 times the

amount of Inspra that I did for Spiro. That is all I take and I DASH like my

life depends on it and it does.

My symptoms were lessened and my BP dropped and my K went up quite soon on the

initial start of Spiro. That was without DASHing to begin with and that

response alone is really an accurate measure of being diagnosed correctly.

I guess my advice it not to get too eager to go under the knife in an effort to

find a cure. Try these less serious and intrusive methods first. Again

personally, I think your doctor seems to be following a good conservative method

and seems to know what he/she is doing.

Again welcome to the board,

Sincerely, Randy

<><May we all be DASHing!!!><>

----------------------------------------

From: " garrywpt " <ggdenny@...>

Sent: Wednesday, January 16, 2008 1:50 AM

hyperaldosteronism

Subject: New to Group: My Story and Questions

Hello, I'm a 45-year old African American male with long history of high blood

pressure (in

the 180/115 range). I've been on what seems like every drug known to

pharmacology -

NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE, HYDROCHLOROTHIAZIDE,

NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no change in my

high blood pressure.

In late 2007 I had serious tingling and some numbness on my left side (legs and

arms) and

my primary doctor got a blood test. The result was low potassium. So, I went on

a

potassium pill and it mostly cleared up. 3 weeks ago after yet another visit to

my primary

and really high blood pressure he ordered another blood test. The results,

according to the

letter he sent me, showed " low renin " and he thought I could have " Primary

Hyperaldosteronism. " With that he referred me to an endocrinologist for

followup.

I met with the endo doc today, he went over my history and I described all of my

current

symptoms - frequent headaches, occasional blurry vision, and the return of the

tingling/numbness. Though I was in the office a while, the endo doc landed on a

solution

that seems too conservative for me. He discussed the possibilities for the cause

of my

high blood pressure, including benign tumor of the adrenal glands, adrenal

hyperplasia

and God knows what else. Right there in the office he ruled out benign tumor or

other

mass (malignant) because my CT scan from TWO years ago showed no adrenal

abnormalities! That specific CT scan was in the emergency room for

diverticulitis, so there

was no reason to focus on the adrenal glands - the endo freely admitted such.

So, after spending nearly 2 hours in the endo's office his chosen course of

action was to

prescribe SPIRONOLACTONE, 25mg twice a day. He said if it brings down my blood

pressure then bingo, it's all good. He even wrote the prescription with a year

of refills!

Here's my concern: I've read here and other sources that SPIRONOLACTONE is used

to

actually diagnose Primary Hyperaldosteronism, and if blood pressure goes down

it's likely

that the patient has some kind of adrenal growth (adenoma?), which can be

surgically

removed. SPIRONOLACTONE has some potentially disturbing side effects for men -

like

breast enlargement, low libido, erection problems, etc. I don't want to be on

SPIRONOLACTONE for a year if the actual culprit is a adrenal growth (benign or

malignant)

and surgery could potentially be a " cure. "

I found out today that my health insurance plan allows for me to simply call

another endo

(in network) and make an appointment for a second opinion. Fortunately, there

are 10

other board certified endos to choose from. Not sure how to choose - male,

female,

young, old, but I would like to make a choice soon.

With respect to second opinion I'm not quite sure what to say to another endo.

How does

that first conversation even start? Isn't it unlikely for one doctor to

second-guess another

doctor?

I'm sorry for such a lengthy post, but I'm not happy with the direction of my

care. Can

someone here PLEASE help me understand all of this, or give me some desktop

advice on

what to think about, how to proceed, or simply what to do next?

[Guest guest]

Hi Garry

A researcher (started with pharmo, ended up doing intercultural

communication), I have also worked as principal investigator for a

number of varied publications on matters scientific - information

science in particular.

My PA went undiagnosed for 15 years we have records upon, and I was

given the same drugs. BY the way, if you've got P, taking diuretics can

worsen or even cause symptomatic hypokalemia. They are such common

firstline drugs for hypertension, but the majority of docs have simply

missed the boat on PA. HCTZ = no-no. My BP and potassium problems

(along with many other symptoms including the ones you describe) grew

until finally, in 2005 I found a cardio who could Dx, Tx, and even

relate the disease to my total health picture. I found Clarence Grim

soon after.

The articles and comments in this group have helped my doctor and I

dodge many bullets (this disease is progressive, and the " significant

symptoms " - translate : other conditions such as spinal stenosis,

suspect because of the alkalosis of PA), and even fine-tune my bloodwork

to perhaps save my life. I can't say enough for Dr Grim.

I agree with Randy, the spiro test seems good at first. Not every male

gets gynecomastia or low testosterone + high estrogen, in the same

amounts, or as fast as the horror stories. Mine took almost 3 years. I

have met men on spiro for 6, and 8 years without Sfx so far. Inspra is

possible early on, and has not the anti-androgenic effects in clinical

experience as well as controlled trials. It has more clinical Hx and

experience now. For many of us, it takes patience because of initial

headaches. My body adjusted after 4 weeks, then I could up the pace of

taper-in.

If you give us your bloodwork numbers - including serum aldo and plasma

renin, and a couple 24-hour urines on same, Dr Grim may have an opinion

on which of the four stages you're likely at (get his evolution of PA

article in files). This has helped many of those in here who've had

much worse care, and with much longer prediagnostic torments.

With a scanned adrenal bump or hyperplasia, Dr Grim (who spent decades

trying to prove his colleague Jerome Conn - after whom the syndrome was

named - wrong on his 20% prevalence in hypertensives hypothesis, and

failed) avers that a scan revealing adenoma isn't definitive enough for

him to recommend the surgery. A fairly touchy procedure to measure the

relative aldosterone output of both glands (AVS) should be done first.

Makes sense - why cut out a gland before knowing it alone is

overproducing the hormone? Lots of image bumps are benign. It's a

touchy region for both the AVS and adrenalectomy; crucial vessels nearby

and atop the kidney, even with current laporoscopic advances. Dr Quan

Duh who leads the endo surgeons at UCSF, and their endo chief Blake

Tyrell both said to me that even with AVS and unilateral adrenalectomy,

around half of his patients end up with the same PA in a month or two.

Some with both glands out (becoming thus addisonian, living on steroids)

still had the disease. Conclusion within the UC system : the adrenal

glands aren't the only source of everyone's aldosterone. They've found

little tissues spitting the stuff out in weird unexpected places in

postmortems - like behind an ear. Life finds a way. So, apparently

does aldosterone.

Dr Grim recently put his own 40 years of focused (on PA) clinical

experience of post-op recurrence in the list here - just a few days ago,

I believe. My own adrenalectomy was done without AVS, and a waste of

time, recovery, money - and risk. So, I am biased. Others have gotten

good results - so far. Most of us seem to be on meds for life.

So, while a surgical cure would be preferable to meds for life, inspra

works for me, even as I taper out the spiro and the inspra takes over.

K and BP are holding during the switch. I have LVH because of delaying

the drug too long - and a swollen left ventricle, together with low

potassium spells two risk factors for sudden death cardiac arrest.

Besides, who wants to risk a stroke or other death-dealing event just to

stay off one drug?

As soon as Dr Grim hears you're African American, his research on

dietary sodium will become even more important than it is for us nons.

I recommend you scan his articles in PubMed or MedLine on data from the

African Diaspora. It seems to twist doctor's knickers (except Black

ones), and I enjoy watching them squirm. The beknighted creatures

ignored my PA for 15 years, putting me in stage four before diagnosis.

I am a wee bit angry at them.

Moreover, his strongest evidence-basis comes from the little book by

, MD on the DASH diet, and NIH trials behind it. Good

science and common experience back up this way of eating for us in here

because it can reduce or eliminate the need - even for meds. DASH

eating took me from 125mg spiro needed to 37mg in 2 months.

Worth the effort, and the basic diet (before you get to the low sodium

aspect) has more reliable, valid clinical study than all the rest of

them put together.

Still amazed at DASH,

Dave

Randy wrote:

>

> Hi Garry and welcome to the board.

>

> You seem to me to have all the classic symptoms. Actually I think your

> Endo seems more knowledgeable than most and is correct in his

> approach. I had a fairly similar path to diagnosis. I went on Spiro

> for 7-8 months until I started to get the male breast side effects.

> Then I went to Inspra. Inspra was barely available to the market about

> 4 years ago. We chose to start on Spiro because the doctor knew more

> about it and we wanted to stay with something tried and true while I

> weaned myself off 7 BP meds. The beta blockers were the worst, I had

> been on them for at least 14-15 years and I am sure I was addicted to

> them.

>

> After I went to Inspra I had a little bit of a rolller-coaster ride

> setting the dosage but finally got it stable. We didn't realize that

> you needed to take more Inspra in relation to the dosage of Spiro. I

> now take about 3 times the amount of Inspra that I did for Spiro. That

> is all I take and I DASH like my life depends on it and it does.

>

> My symptoms were lessened and my BP dropped and my K went up quite

> soon on the initial start of Spiro. That was without DASHing to begin

> with and that response alone is really an accurate measure of being

> diagnosed correctly.

>

> I guess my advice it not to get too eager to go under the knife in an

> effort to find a cure. Try these less serious and intrusive methods

> first. Again personally, I think your doctor seems to be following a

> good conservative method and seems to know what he/she is doing.

>

> Again welcome to the board,

> Sincerely, Randy

> <><May we all be DASHing!!!><>

>

> ----------------------------------------

> From: " garrywpt " <ggdenny@... <mailto:ggdenny%40wisc.edu>>

> Sent: Wednesday, January 16, 2008 1:50 AM

> hyperaldosteronism

> <mailto:hyperaldosteronism%40>

> Subject: New to Group: My Story and Questions

>

> Hello, I'm a 45-year old African American male with long history of

> high blood pressure (in

>

> the 180/115 range). I've been on what seems like every drug known to

> pharmacology -

>

> NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE,

> HYDROCHLOROTHIAZIDE,

>

> NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no

> change in my

>

> high blood pressure.

>

> In late 2007 I had serious tingling and some numbness on my left side

> (legs and arms) and

>

> my primary doctor got a blood test. The result was low potassium. So,

> I went on a

>

> potassium pill and it mostly cleared up. 3 weeks ago after yet another

> visit to my primary

>

> and really high blood pressure he ordered another blood test. The

> results, according to the

>

> letter he sent me, showed " low renin " and he thought I could have

> " Primary

>

> Hyperaldosteronism. " With that he referred me to an endocrinologist

> for followup.

>

> I met with the endo doc today, he went over my history and I described

> all of my current

>

> symptoms - frequent headaches, occasional blurry vision, and the

> return of the

>

> tingling/numbness. Though I was in the office a while, the endo doc

> landed on a solution

>

> that seems too conservative for me. He discussed the possibilities for

> the cause of my

>

> high blood pressure, including benign tumor of the adrenal glands,

> adrenal hyperplasia

>

> and God knows what else. Right there in the office he ruled out benign

> tumor or other

>

> mass (malignant) because my CT scan from TWO years ago showed no adrenal

>

> abnormalities! That specific CT scan was in the emergency room for

> diverticulitis, so there

>

> was no reason to focus on the adrenal glands - the endo freely

> admitted such.

>

> So, after spending nearly 2 hours in the endo's office his chosen

> course of action was to

>

> prescribe SPIRONOLACTONE, 25mg twice a day. He said if it brings down

> my blood

>

> pressure then bingo, it's all good. He even wrote the prescription

> with a year of refills!

>

> Here's my concern: I've read here and other sources that

> SPIRONOLACTONE is used to

>

> actually diagnose Primary Hyperaldosteronism, and if blood pressure

> goes down it's likely

>

> that the patient has some kind of adrenal growth (adenoma?), which can

> be surgically

>

> removed. SPIRONOLACTONE has some potentially disturbing side effects

> for men - like

>

> breast enlargement, low libido, erection problems, etc. I don't want

> to be on

>

> SPIRONOLACTONE for a year if the actual culprit is a adrenal growth

> (benign or malignant)

>

> and surgery could potentially be a " cure. "

>

> I found out today that my health insurance plan allows for me to

> simply call another endo

>

> (in network) and make an appointment for a second opinion.

> Fortunately, there are 10

>

> other board certified endos to choose from. Not sure how to choose -

> male, female,

>

> young, old, but I would like to make a choice soon.

>

> With respect to second opinion I'm not quite sure what to say to

> another endo. How does

>

> that first conversation even start? Isn't it unlikely for one doctor

> to second-guess another

>

> doctor?

>

> I'm sorry for such a lengthy post, but I'm not happy with the

> direction of my care. Can

>

> someone here PLEASE help me understand all of this, or give me some

> desktop advice on

>

> what to think about, how to proceed, or simply what to do next?

>

>

>

[Guest guest]

Hi,

Most of us here also had a long history of

hypertension before our diagnosis, seems that's normal

for us lucky people with PA. 25 mg of spiro twice a

day is a very small dose for PA, I wonder if you'll

see any change in your blood pressure from it. I'm on

100 mg twice a day but being a female it's not a

problem for me. I also had an abdominal CT done for

something else which showed normal adrenal glands.

Two months later an MRI of the adrenals showed

bilateral adenomas. I don't know if they just weren't

looking closely at the adrenals on the CT or if they

show up better on MRI. To determine if one or both

adrenal glands are the culprit you would need an

Adrenal Vein Sampling. Several of us here have had

them done but the problem is finding a place that is

competent in doing them. Mine was a piece of cake but

others were a horror story. They can also be very

expensive and not always paid for by insurance. If

both adrenals are hypersecreting (bilateral adenomas

like me or bilateral hyperplasia) surgery is not an

option.

Welcome to the group,

a

--- garrywpt <ggdenny@...> wrote:

> Hello, I'm a 45-year old African American male with

> long history of high blood pressure (in

> the 180/115 range). I've been on what seems like

> every drug known to pharmacology -

> NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL,

> AMLODIPINE, HYDROCHLOROTHIAZIDE,

> NORTRIPTYLINE, TRIAMTERENE, etc... No matter what

> there has been no change in my

> high blood pressure.

>

> In late 2007 I had serious tingling and some

> numbness on my left side (legs and arms) and

> my primary doctor got a blood test. The result was

> low potassium. So, I went on a

> potassium pill and it mostly cleared up. 3 weeks ago

> after yet another visit to my primary

> and really high blood pressure he ordered another

> blood test. The results, according to the

> letter he sent me, showed " low renin " and he thought

> I could have " Primary

> Hyperaldosteronism. " With that he referred me to an

> endocrinologist for followup.

>

> I met with the endo doc today, he went over my

> history and I described all of my current

> symptoms - frequent headaches, occasional blurry

> vision, and the return of the

> tingling/numbness. Though I was in the office a

> while, the endo doc landed on a solution

> that seems too conservative for me. He discussed the

> possibilities for the cause of my

> high blood pressure, including benign tumor of the

> adrenal glands, adrenal hyperplasia

> and God knows what else. Right there in the office

> he ruled out benign tumor or other

> mass (malignant) because my CT scan from TWO years

> ago showed no adrenal

> abnormalities! That specific CT scan was in the

> emergency room for diverticulitis, so there

> was no reason to focus on the adrenal glands - the

> endo freely admitted such.

>

> So, after spending nearly 2 hours in the endo's

> office his chosen course of action was to

> prescribe SPIRONOLACTONE, 25mg twice a day. He said

> if it brings down my blood

> pressure then bingo, it's all good. He even wrote

> the prescription with a year of refills!

>

> Here's my concern: I've read here and other sources

> that SPIRONOLACTONE is used to

> actually diagnose Primary Hyperaldosteronism, and if

> blood pressure goes down it's likely

> that the patient has some kind of adrenal growth

> (adenoma?), which can be surgically

> removed. SPIRONOLACTONE has some potentially

> disturbing side effects for men - like

> breast enlargement, low libido, erection problems,

> etc. I don't want to be on

> SPIRONOLACTONE for a year if the actual culprit is a

> adrenal growth (benign or malignant)

> and surgery could potentially be a " cure. "

>

> I found out today that my health insurance plan

> allows for me to simply call another endo

> (in network) and make an appointment for a second

> opinion. Fortunately, there are 10

> other board certified endos to choose from. Not sure

> how to choose - male, female,

> young, old, but I would like to make a choice soon.

>

> With respect to second opinion I'm not quite sure

> what to say to another endo. How does

> that first conversation even start? Isn't it

> unlikely for one doctor to second-guess another

> doctor?

>

> I'm sorry for such a lengthy post, but I'm not happy

> with the direction of my care. Can

> someone here PLEASE help me understand all of this,

> or give me some desktop advice on

> what to think about, how to proceed, or simply what

> to do next?

>

>

-Lord, keep your arm around my shoulder and your hand over my mouth.-

[Guest guest]

I've read studies that adrenal adenomas are often missed with CT. A lot

depends on who is reading the test.

An alternative to spiro is Inspra, although more expensive. If I were you,

I'd go ahead and take the spiro but I think your dosage is too small. Dr.

Grim will likely chime in on the appropriate dose of spiro or Inspra. If

your blood pressure lessens with one of those drugs, you can pretty much

assume you have PA. Do you have your levels for aldosterone and renin? The

ratio is good to know. In fact, having copies of all your tests is very

good. I firmly believe that only the individual can effectively manage

one's health. Expecting the medical profession to do it is a risky

business.

The only way you'll be able to determine if you have an aldo-producing

adenoma is to have AVS (adrenal vein sampling). It is a tricky procedure

and should not be done by the inexperienced.

Please report back. We are all interested in the outcomes, but too often,

once relieved of hypertension, people fade away and go on with their lives.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of garrywpt

Hello, I'm a 45-year old African American male with long history of high

blood pressure (in

the 180/115 range). I've been on what seems like every drug known to

pharmacology -

NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE, HYDROCHLOROTHIAZIDE,

NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no change

in my

high blood pressure.

In late 2007 I had serious tingling and some numbness on my left side (legs

and arms) and

my primary doctor got a blood test. The result was low potassium. So, I went

on a

potassium pill and it mostly cleared up. 3 weeks ago after yet another visit

to my primary

and really high blood pressure he ordered another blood test. The results,

according to the

letter he sent me, showed " low renin " and he thought I could have " Primary

Hyperaldosteronism. " With that he referred me to an endocrinologist for

followup.

I met with the endo doc today, he went over my history and I described all

of my current

symptoms - frequent headaches, occasional blurry vision, and the return of

the

tingling/numbness. Though I was in the office a while, the endo doc landed

on a solution

that seems too conservative for me. He discussed the possibilities for the

cause of my

high blood pressure, including benign tumor of the adrenal glands, adrenal

hyperplasia

and God knows what else. Right there in the office he ruled out benign tumor

or other

mass (malignant) because my CT scan from TWO years ago showed no adrenal

abnormalities! That specific CT scan was in the emergency room for

diverticulitis, so there

was no reason to focus on the adrenal glands - the endo freely admitted

such.

So, after spending nearly 2 hours in the endo's office his chosen course of

action was to

prescribe SPIRONOLACTONE, 25mg twice a day. He said if it brings down my

blood

pressure then bingo, it's all good. He even wrote the prescription with a

year of refills!

Here's my concern: I've read here and other sources that SPIRONOLACTONE is

used to

actually diagnose Primary Hyperaldosteronism, and if blood pressure goes

down it's likely

that the patient has some kind of adrenal growth (adenoma?), which can be

surgically

removed. SPIRONOLACTONE has some potentially disturbing side effects for men

- like

breast enlargement, low libido, erection problems, etc. I don't want to be

on

SPIRONOLACTONE for a year if the actual culprit is a adrenal growth (benign

or malignant)

and surgery could potentially be a " cure. "

I found out today that my health insurance plan allows for me to simply call

another endo

(in network) and make an appointment for a second opinion. Fortunately,

there are 10

other board certified endos to choose from. Not sure how to choose - male,

female,

young, old, but I would like to make a choice soon.

With respect to second opinion I'm not quite sure what to say to another

endo. How does

that first conversation even start? Isn't it unlikely for one doctor to

second-guess another

doctor?

I'm sorry for such a lengthy post, but I'm not happy with the direction of

my care. Can

someone here PLEASE help me understand all of this, or give me some desktop

advice on

what to think about, how to proceed, or simply what to do next?

[Guest guest]

It seems to me you have an endo with good judgment. I would stick

with him. Read all the " stories " here. Print out my article on the

evolution of PA and read it and take it to your Endo. Tell him I

trained with Conn.

You did not mention a renin AND and aldo as you need both.

My guess is that you have what I have termed individual

hyperaldosteronism that is classically drug resistant except for spiro.

Do the DASH diet as well which will help the BP and the PA and low K.

PS: I have specialized in HTN In AA for over 35 years.

On Jan 16, 2008, at 8:36 AM, a Hall wrote:

> Hi,

> Most of us here also had a long history of

> hypertension before our diagnosis, seems that's normal

> for us lucky people with PA. 25 mg of spiro twice a

> day is a very small dose for PA, I wonder if you'll

> see any change in your blood pressure from it. I'm on

> 100 mg twice a day but being a female it's not a

> problem for me. I also had an abdominal CT done for

> something else which showed normal adrenal glands.

> Two months later an MRI of the adrenals showed

> bilateral adenomas. I don't know if they just weren't

> looking closely at the adrenals on the CT or if they

> show up better on MRI. To determine if one or both

> adrenal glands are the culprit you would need an

> Adrenal Vein Sampling. Several of us here have had

> them done but the problem is finding a place that is

> competent in doing them. Mine was a piece of cake but

> others were a horror story. They can also be very

> expensive and not always paid for by insurance. If

> both adrenals are hypersecreting (bilateral adenomas

> like me or bilateral hyperplasia) surgery is not an

> option.

>

> Welcome to the group,

> a

>

> --- garrywpt <ggdenny@...> wrote:

>

> > Hello, I'm a 45-year old African American male with

> > long history of high blood pressure (in

> > the 180/115 range). I've been on what seems like

> > every drug known to pharmacology -

> > NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL,

> > AMLODIPINE, HYDROCHLOROTHIAZIDE,

> > NORTRIPTYLINE, TRIAMTERENE, etc... No matter what

> > there has been no change in my

> > high blood pressure.

> >

> > In late 2007 I had serious tingling and some

> > numbness on my left side (legs and arms) and

> > my primary doctor got a blood test. The result was

> > low potassium. So, I went on a

> > potassium pill and it mostly cleared up. 3 weeks ago

> > after yet another visit to my primary

> > and really high blood pressure he ordered another

> > blood test. The results, according to the

> > letter he sent me, showed " low renin " and he thought

> > I could have " Primary

> > Hyperaldosteronism. " With that he referred me to an

> > endocrinologist for followup.

> >

> > I met with the endo doc today, he went over my

> > history and I described all of my current

> > symptoms - frequent headaches, occasional blurry

> > vision, and the return of the

> > tingling/numbness. Though I was in the office a

> > while, the endo doc landed on a solution

> > that seems too conservative for me. He discussed the

> > possibilities for the cause of my

> > high blood pressure, including benign tumor of the

> > adrenal glands, adrenal hyperplasia

> > and God knows what else. Right there in the office

> > he ruled out benign tumor or other

> > mass (malignant) because my CT scan from TWO years

> > ago showed no adrenal

> > abnormalities! That specific CT scan was in the

> > emergency room for diverticulitis, so there

> > was no reason to focus on the adrenal glands - the

> > endo freely admitted such.

> >

> > So, after spending nearly 2 hours in the endo's

> > office his chosen course of action was to

> > prescribe SPIRONOLACTONE, 25mg twice a day. He said

> > if it brings down my blood

> > pressure then bingo, it's all good. He even wrote

> > the prescription with a year of refills!

> >

> > Here's my concern: I've read here and other sources

> > that SPIRONOLACTONE is used to

> > actually diagnose Primary Hyperaldosteronism, and if

> > blood pressure goes down it's likely

> > that the patient has some kind of adrenal growth

> > (adenoma?), which can be surgically

> > removed. SPIRONOLACTONE has some potentially

> > disturbing side effects for men - like

> > breast enlargement, low libido, erection problems,

> > etc. I don't want to be on

> > SPIRONOLACTONE for a year if the actual culprit is a

> > adrenal growth (benign or malignant)

> > and surgery could potentially be a " cure. "

> >

> > I found out today that my health insurance plan

> > allows for me to simply call another endo

> > (in network) and make an appointment for a second

> > opinion. Fortunately, there are 10

> > other board certified endos to choose from. Not sure

> > how to choose - male, female,

> > young, old, but I would like to make a choice soon.

> >

> > With respect to second opinion I'm not quite sure

> > what to say to another endo. How does

> > that first conversation even start? Isn't it

> > unlikely for one doctor to second-guess another

> > doctor?

> >

> > I'm sorry for such a lengthy post, but I'm not happy

> > with the direction of my care. Can

> > someone here PLEASE help me understand all of this,

> > or give me some desktop advice on

> > what to think about, how to proceed, or simply what

> > to do next?

> >

> >

>

> -Lord, keep your arm around my shoulder and your hand over my mouth.-

>

>

[Guest guest]

Dave speaks with a wise tongue. ;-)

Listen to him if you wont listen to me.

CE Grim MD

On Jan 16, 2008, at 5:56 AM, Dave wrote:

> Hi Garry

>

> A researcher (started with pharmo, ended up doing intercultural

> communication), I have also worked as principal investigator for a

> number of varied publications on matters scientific - information

> science in particular.

>

> My PA went undiagnosed for 15 years we have records upon, and I was

> given the same drugs. BY the way, if you've got P, taking diuretics

> can

> worsen or even cause symptomatic hypokalemia. They are such common

> firstline drugs for hypertension, but the majority of docs have simply

> missed the boat on PA. HCTZ = no-no. My BP and potassium problems

> (along with many other symptoms including the ones you describe) grew

> until finally, in 2005 I found a cardio who could Dx, Tx, and even

> relate the disease to my total health picture. I found Clarence Grim

> soon after.

>

> The articles and comments in this group have helped my doctor and I

> dodge many bullets (this disease is progressive, and the " significant

> symptoms " - translate : other conditions such as spinal stenosis,

> suspect because of the alkalosis of PA), and even fine-tune my

> bloodwork

> to perhaps save my life. I can't say enough for Dr Grim.

>

> I agree with Randy, the spiro test seems good at first. Not every male

> gets gynecomastia or low testosterone + high estrogen, in the same

> amounts, or as fast as the horror stories. Mine took almost 3 years. I

> have met men on spiro for 6, and 8 years without Sfx so far. Inspra is

> possible early on, and has not the anti-androgenic effects in clinical

> experience as well as controlled trials. It has more clinical Hx and

> experience now. For many of us, it takes patience because of initial

> headaches. My body adjusted after 4 weeks, then I could up the pace of

> taper-in.

>

> If you give us your bloodwork numbers - including serum aldo and

> plasma

> renin, and a couple 24-hour urines on same, Dr Grim may have an

> opinion

> on which of the four stages you're likely at (get his evolution of PA

> article in files). This has helped many of those in here who've had

> much worse care, and with much longer prediagnostic torments.

>

> With a scanned adrenal bump or hyperplasia, Dr Grim (who spent decades

> trying to prove his colleague Jerome Conn - after whom the syndrome

> was

> named - wrong on his 20% prevalence in hypertensives hypothesis, and

> failed) avers that a scan revealing adenoma isn't definitive enough

> for

> him to recommend the surgery. A fairly touchy procedure to measure the

> relative aldosterone output of both glands (AVS) should be done first.

> Makes sense - why cut out a gland before knowing it alone is

> overproducing the hormone? Lots of image bumps are benign. It's a

> touchy region for both the AVS and adrenalectomy; crucial vessels

> nearby

> and atop the kidney, even with current laporoscopic advances. Dr Quan

> Duh who leads the endo surgeons at UCSF, and their endo chief Blake

> Tyrell both said to me that even with AVS and unilateral

> adrenalectomy,

> around half of his patients end up with the same PA in a month or two.

> Some with both glands out (becoming thus addisonian, living on

> steroids)

> still had the disease. Conclusion within the UC system : the adrenal

> glands aren't the only source of everyone's aldosterone. They've found

> little tissues spitting the stuff out in weird unexpected places in

> postmortems - like behind an ear. Life finds a way. So, apparently

> does aldosterone.

>

> Dr Grim recently put his own 40 years of focused (on PA) clinical

> experience of post-op recurrence in the list here - just a few days

> ago,

> I believe. My own adrenalectomy was done without AVS, and a waste of

> time, recovery, money - and risk. So, I am biased. Others have gotten

> good results - so far. Most of us seem to be on meds for life.

>

> So, while a surgical cure would be preferable to meds for life, inspra

> works for me, even as I taper out the spiro and the inspra takes over.

> K and BP are holding during the switch. I have LVH because of delaying

> the drug too long - and a swollen left ventricle, together with low

> potassium spells two risk factors for sudden death cardiac arrest.

>

> Besides, who wants to risk a stroke or other death-dealing event

> just to

> stay off one drug?

>

> As soon as Dr Grim hears you're African American, his research on

> dietary sodium will become even more important than it is for us nons.

> I recommend you scan his articles in PubMed or MedLine on data from

> the

> African Diaspora. It seems to twist doctor's knickers (except Black

> ones), and I enjoy watching them squirm. The beknighted creatures

> ignored my PA for 15 years, putting me in stage four before diagnosis.

> I am a wee bit angry at them.

>

> Moreover, his strongest evidence-basis comes from the little book by

> , MD on the DASH diet, and NIH trials behind it. Good

> science and common experience back up this way of eating for us in

> here

> because it can reduce or eliminate the need - even for meds. DASH

> eating took me from 125mg spiro needed to 37mg in 2 months.

>

> Worth the effort, and the basic diet (before you get to the low sodium

> aspect) has more reliable, valid clinical study than all the rest of

> them put together.

>

> Still amazed at DASH,

>

> Dave

>

> Randy wrote:

> >

> > Hi Garry and welcome to the board.

> >

> > You seem to me to have all the classic symptoms. Actually I think

> your

> > Endo seems more knowledgeable than most and is correct in his

> > approach. I had a fairly similar path to diagnosis. I went on Spiro

> > for 7-8 months until I started to get the male breast side effects.

> > Then I went to Inspra. Inspra was barely available to the market

> about

> > 4 years ago. We chose to start on Spiro because the doctor knew more

> > about it and we wanted to stay with something tried and true while I

> > weaned myself off 7 BP meds. The beta blockers were the worst, I had

> > been on them for at least 14-15 years and I am sure I was

> addicted to

> > them.

> >

> > After I went to Inspra I had a little bit of a rolller-coaster ride

> > setting the dosage but finally got it stable. We didn't realize that

> > you needed to take more Inspra in relation to the dosage of Spiro. I

> > now take about 3 times the amount of Inspra that I did for Spiro.

> That

> > is all I take and I DASH like my life depends on it and it does.

> >

> > My symptoms were lessened and my BP dropped and my K went up quite

> > soon on the initial start of Spiro. That was without DASHing to

> begin

> > with and that response alone is really an accurate measure of being

> > diagnosed correctly.

> >

> > I guess my advice it not to get too eager to go under the knife

> in an

> > effort to find a cure. Try these less serious and intrusive methods

> > first. Again personally, I think your doctor seems to be following a

> > good conservative method and seems to know what he/she is doing.

> >

> > Again welcome to the board,

> > Sincerely, Randy

> > <><May we all be DASHing!!!><>

> >

> > ----------------------------------------

> > From: " garrywpt " <ggdenny@... <mailto:ggdenny%40wisc.edu>>

> > Sent: Wednesday, January 16, 2008 1:50 AM

> > hyperaldosteronism

> > <mailto:hyperaldosteronism%40>

> > Subject: New to Group: My Story and Questions

> >

> > Hello, I'm a 45-year old African American male with long history of

> > high blood pressure (in

> >

> > the 180/115 range). I've been on what seems like every drug known to

> > pharmacology -

> >

> > NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE,

> > HYDROCHLOROTHIAZIDE,

> >

> > NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no

> > change in my

> >

> > high blood pressure.

> >

> > In late 2007 I had serious tingling and some numbness on my left

> side

> > (legs and arms) and

> >

> > my primary doctor got a blood test. The result was low potassium.

> So,

> > I went on a

> >

> > potassium pill and it mostly cleared up. 3 weeks ago after yet

> another

> > visit to my primary

> >

> > and really high blood pressure he ordered another blood test. The

> > results, according to the

> >

> > letter he sent me, showed " low renin " and he thought I could have

> > " Primary

> >

> > Hyperaldosteronism. " With that he referred me to an endocrinologist

> > for followup.

> >

> > I met with the endo doc today, he went over my history and I

> described

> > all of my current

> >

> > symptoms - frequent headaches, occasional blurry vision, and the

> > return of the

> >

> > tingling/numbness. Though I was in the office a while, the endo doc

> > landed on a solution

> >

> > that seems too conservative for me. He discussed the

> possibilities for

> > the cause of my

> >

> > high blood pressure, including benign tumor of the adrenal glands,

> > adrenal hyperplasia

> >

> > and God knows what else. Right there in the office he ruled out

> benign

> > tumor or other

> >

> > mass (malignant) because my CT scan from TWO years ago showed no

> adrenal

> >

> > abnormalities! That specific CT scan was in the emergency room for

> > diverticulitis, so there

> >

> > was no reason to focus on the adrenal glands - the endo freely

> > admitted such.

> >

> > So, after spending nearly 2 hours in the endo's office his chosen

> > course of action was to

> >

> > prescribe SPIRONOLACTONE, 25mg twice a day. He said if it brings

> down

> > my blood

> >

> > pressure then bingo, it's all good. He even wrote the prescription

> > with a year of refills!

> >

> > Here's my concern: I've read here and other sources that

> > SPIRONOLACTONE is used to

> >

> > actually diagnose Primary Hyperaldosteronism, and if blood pressure

> > goes down it's likely

> >

> > that the patient has some kind of adrenal growth (adenoma?),

> which can

> > be surgically

> >

> > removed. SPIRONOLACTONE has some potentially disturbing side effects

> > for men - like

> >

> > breast enlargement, low libido, erection problems, etc. I don't want

> > to be on

> >

> > SPIRONOLACTONE for a year if the actual culprit is a adrenal growth

> > (benign or malignant)

> >

> > and surgery could potentially be a " cure. "

> >

> > I found out today that my health insurance plan allows for me to

> > simply call another endo

> >

> > (in network) and make an appointment for a second opinion.

> > Fortunately, there are 10

> >

> > other board certified endos to choose from. Not sure how to choose -

> > male, female,

> >

> > young, old, but I would like to make a choice soon.

> >

> > With respect to second opinion I'm not quite sure what to say to

> > another endo. How does

> >

> > that first conversation even start? Isn't it unlikely for one doctor

> > to second-guess another

> >

> > doctor?

> >

> > I'm sorry for such a lengthy post, but I'm not happy with the

> > direction of my care. Can

> >

> > someone here PLEASE help me understand all of this, or give me some

> > desktop advice on

> >

> > what to think about, how to proceed, or simply what to do next?

> >

> >

> >

>

>

[Guest guest]

Classic story for PA. See my article.

CE Grim MD

On Jan 15, 2008, at 10:49 PM, garrywpt wrote:

> Hello, I'm a 45-year old African American male with long history of

> high blood pressure (in

> the 180/115 range). I've been on what seems like every drug known

> to pharmacology -

> NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE,

> HYDROCHLOROTHIAZIDE,

> NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no

> change in my

> high blood pressure.

[Guest guest]

Dr. Grim,

So far I have not sought a second opinion. However, I did find out that with my

health plan

I can simply call another in-network endo and make an appointment. The problem

is that

there are at least 10 board certified endo's in Madison, so it's hard to choose.

Anyway, I'm still waiting for a copy of my labs, but I did receive a copy of a

letter that my

endo wrote to my primary care physician and it does have some blood work values.

None

of it makes sense to me, but hopefully you can shed some light. This is

verbatim:

" On December 6, his plasma renin activity was less than 0.1, and aldosterone was

16.3.

When plasma renin activity is less than 0.5, we usually calculate the ration on

0.5, and this

would give a ratio of about 32. It is quite clearly elevated, but it is

difficult to interpret in

view of his multiple medications. Specifically, Toprol could skew the ratio up

because of a

decrease in plasma renin activity. "

For frame of reference, on December 6 I was on several medications: Metoprolol

(100mg

once per day), Lisinopril (20mg once per day), Clonidine (0.1mg twice per day),

and

Triamterene (37.5mg once per day).

Any thoughts with this additional information?

>

> > Hello, I'm a 45-year old African American male with long history of

> > high blood pressure (in

> > the 180/115 range). I've been on what seems like every drug known

> > to pharmacology -

> > NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE,

> > HYDROCHLOROTHIAZIDE,

> > NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no

> > change in my

> > high blood pressure.

>

>

>

>

[Guest guest]

On Jan 16, 2008, at 9:09 AM, Valarie wrote:

> Yes they are not seen because they are smaller than can be detected

> by today's methods. Guess your endo has not seen many PAs. Must

> have missed a lot of them. The correct dose is enough.

>

> I've read studies that adrenal adenomas are often missed with CT. A

> lot

> depends on who is reading the test.

>

>

>

>

> An alternative to spiro is Inspra, although more expensive. If I

> were you,

> I'd go ahead and take the spiro but I think your dosage is too

> small. Dr.

> Grim will likely chime in on the appropriate dose of spiro or

> Inspra. If

> your blood pressure lessens with one of those drugs, you can pretty

> much

> assume you have PA. Do you have your levels for aldosterone and

> renin? The

> ratio is good to know. In fact, having copies of all your tests is

> very

> good. I firmly believe that only the individual can effectively manage

> one's health. Expecting the medical profession to do it is a risky

> business.

>

> The only way you'll be able to determine if you have an aldo-producing

> adenoma is to have AVS (adrenal vein sampling). It is a tricky

> procedure

> and should not be done by the inexperienced.

>

> Please report back. We are all interested in the outcomes, but too

> often,

> once relieved of hypertension, people fade away and go on with

> their lives.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of garrywpt

>

> Hello, I'm a 45-year old African American male with long history of

> high

> blood pressure (in

> the 180/115 range). I've been on what seems like every drug known to

> pharmacology -

> NORVASC, LISINOPRIL, CLONIDINE, METOPROLOL, AMLODIPINE,

> HYDROCHLOROTHIAZIDE,

>

> NORTRIPTYLINE, TRIAMTERENE, etc... No matter what there has been no

> change

> in my

> high blood pressure.

>

> In late 2007 I had serious tingling and some numbness on my left

> side (legs

> and arms) and

> my primary doctor got a blood test. The result was low potassium.

> So, I went

> on a

> potassium pill and it mostly cleared up. 3 weeks ago after yet

> another visit

> to my primary

> and really high blood pressure he ordered another blood test. The

> results,

> according to the

> letter he sent me, showed " low renin " and he thought I could have

> " Primary

> Hyperaldosteronism. " With that he referred me to an endocrinologist

> for

> followup.

>

> I met with the endo doc today, he went over my history and I

> described all

> of my current

> symptoms - frequent headaches, occasional blurry vision, and the

> return of

> the

> tingling/numbness. Though I was in the office a while, the endo doc

> landed

> on a solution

> that seems too conservative for me. He discussed the possibilities

> for the

> cause of my

> high blood pressure, including benign tumor of the adrenal glands,

> adrenal

> hyperplasia

> and God knows what else. Right there in the office he ruled out

> benign tumor

> or other

> mass (malignant) because my CT scan from TWO years ago showed no

> adrenal

> abnormalities! That specific CT scan was in the emergency room for

> diverticulitis, so there

> was no reason to focus on the adrenal glands - the endo freely

> admitted

> such.

>

> So, after spending nearly 2 hours in the endo's office his chosen

> course of

> action was to

> prescribe SPIRONOLACTONE, 25mg twice a day. He said if it brings

> down my

> blood

> pressure then bingo, it's all good. He even wrote the prescription

> with a

> year of refills!

>

> Here's my concern: I've read here and other sources that

> SPIRONOLACTONE is

> used to

> actually diagnose Primary Hyperaldosteronism, and if blood pressure

> goes

> down it's likely

> that the patient has some kind of adrenal growth (adenoma?), which

> can be

> surgically

> removed. SPIRONOLACTONE has some potentially disturbing side

> effects for men

> - like

> breast enlargement, low libido, erection problems, etc. I don't

> want to be

> on

> SPIRONOLACTONE for a year if the actual culprit is a adrenal growth

> (benign

> or malignant)

> and surgery could potentially be a " cure. "

>

> I found out today that my health insurance plan allows for me to

> simply call

> another endo

> (in network) and make an appointment for a second opinion.

> Fortunately,

> there are 10

> other board certified endos to choose from. Not sure how to choose

> - male,

> female,

> young, old, but I would like to make a choice soon.

>

> With respect to second opinion I'm not quite sure what to say to

> another

> endo. How does

> that first conversation even start? Isn't it unlikely for one

> doctor to

> second-guess another

> doctor?

>

> I'm sorry for such a lengthy post, but I'm not happy with the

> direction of

> my care. Can

> someone here PLEASE help me understand all of this, or give me some

> desktop

> advice on

> what to think about, how to proceed, or simply what to do next?

>

>