Re: My Experience and Starting Spiro Today

[Guest guest]

Thanks for the story. We will put it in our files as Callie's story

after you review our other similar stories.

Please give ethnicity and do FH plot at web site mentioned below.

Can you name the drugs that did not work.

Perhaps an estimate of how many $ you spent till Dx was made.

Get the DASH diet book and work on it to minimize drugs needed.

As you can tell your story is classical for our group here.

You will be feeling much better. We use both K and spiro till K well

controlled but your Drs know you best.

Work with them and take ALL my article so they miss others like you

and there are many as you can see.

On Mar 16, 2009, at 10:07 AM, callie.nelle wrote:

> I am new to this group, and I am grateful that you are here.

>

> I was diagnosed with primary hyperaldosteronism on February 9 after

> about six trips to the emergency room with heart attack-like

> symptoms (sharp pain in the chest, irregular heart beat, high BP,

> nausea, tingling in the hands). This happened over about 18 months

> time during the highest period of stress of my lifetime. They never

> found anything except low potassium and high BP. After the first

> trip, they sent me to a cardiologist who put me on BP meds that

> depleted potassium and gave me xanax for what he diagnosed as panic

> attacks. The episodes just got worse. Finally, I got a primary care

> physician who sent me to a nephrologist who diagnosed primary

> aldosteronism. My aldosterone was 46.8 and my renin 0.57 (upright).

> Then I was sent to an endo who did a CT scan and found nodules on

> both adrenals. Since the first of December I have been on 40 meq K

> and 25 mg amlodipine for BP. Some time I feel like myself, and

> sometime I feel pretty bad.

>

> Today I am supposed to begin taking 25 mg spiro, reduce my K to

> 10meq and continue the 25 mg amlodipine. To tell the truth, I am

> pretty nervous about stopping the K.

>

> I have always been healthy before this--even had LOW BP for many

> years and no primary care doctor. Now, sometimes I feel like I have

> lost my life. The hardest part is the exhaustion and not being able

> to do what I need to do and want to do. Also, the feeling that my

> body is out of control is pretty scary.

>

> Thanks for listening.

>

> Callie

>

>

>

[Guest guest]

To all. I believe we now have enough folks with a similar story that

we can think about publishing a paper on the anxiety symptoms and

signs of primary aldosteronism.

Any one interested in being a coauthor?

On Mar 16, 2009, at 10:07 AM, callie.nelle wrote:

> I am new to this group, and I am grateful that you are here.

>

> I was diagnosed with primary hyperaldosteronism on February 9 after

> about six trips to the emergency room with heart attack-like

> symptoms (sharp pain in the chest, irregular heart beat, high BP,

> nausea, tingling in the hands). This happened over about 18 months

> time during the highest period of stress of my lifetime. They never

> found anything except low potassium and high BP. After the first

> trip, they sent me to a cardiologist who put me on BP meds that

> depleted potassium and gave me xanax for what he diagnosed as panic

> attacks. The episodes just got worse. Finally, I got a primary care

> physician who sent me to a nephrologist who diagnosed primary

> aldosteronism. My aldosterone was 46.8 and my renin 0.57 (upright).

> Then I was sent to an endo who did a CT scan and found nodules on

> both adrenals. Since the first of December I have been on 40 meq K

> and 25 mg amlodipine for BP. Some time I feel like myself, and

> sometime I feel pretty bad.

>

> Today I am supposed to begin taking 25 mg spiro, reduce my K to

> 10meq and continue the 25 mg amlodipine. To tell the truth, I am

> pretty nervous about stopping the K.

>

> I have always been healthy before this--even had LOW BP for many

> years and no primary care doctor. Now, sometimes I feel like I have

> lost my life. The hardest part is the exhaustion and not being able

> to do what I need to do and want to do. Also, the feeling that my

> body is out of control is pretty scary.

>

> Thanks for listening.

>

> Callie

>

>

>

[Guest guest]

Dr. Grim:

I would certainly be interested in helping out.

Farah

On Mon, Mar 16, 2009 at 10:22 AM, Clarence Grim <lowerbp2@...> wrote:

> To all. I believe we now have enough folks with a similar story that

> we can think about publishing a paper on the anxiety symptoms and

> signs of primary aldosteronism.

>

> Any one interested in being a coauthor?

>

>

> On Mar 16, 2009, at 10:07 AM, callie.nelle wrote:

>

> > I am new to this group, and I am grateful that you are here.

> >

> > I was diagnosed with primary hyperaldosteronism on February 9 after

> > about six trips to the emergency room with heart attack-like

> > symptoms (sharp pain in the chest, irregular heart beat, high BP,

> > nausea, tingling in the hands). This happened over about 18 months

> > time during the highest period of stress of my lifetime. They never

> > found anything except low potassium and high BP. After the first

> > trip, they sent me to a cardiologist who put me on BP meds that

> > depleted potassium and gave me xanax for what he diagnosed as panic

> > attacks. The episodes just got worse. Finally, I got a primary care

> > physician who sent me to a nephrologist who diagnosed primary

> > aldosteronism. My aldosterone was 46.8 and my renin 0.57 (upright).

> > Then I was sent to an endo who did a CT scan and found nodules on

> > both adrenals. Since the first of December I have been on 40 meq K

> > and 25 mg amlodipine for BP. Some time I feel like myself, and

> > sometime I feel pretty bad.

> >

> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

> > 10meq and continue the 25 mg amlodipine. To tell the truth, I am

> > pretty nervous about stopping the K.

> >

> > I have always been healthy before this--even had LOW BP for many

> > years and no primary care doctor. Now, sometimes I feel like I have

> > lost my life. The hardest part is the exhaustion and not being able

> > to do what I need to do and want to do. Also, the feeling that my

> > body is out of control is pretty scary.

> >

> > Thanks for listening.

> >

> > Callie

> >

> >

> >

>

>

[Guest guest]

Hi Callie:

Hang in there. What you have described is pretty much what most of us have

gone through with misdiagnosis and ER trips. Dont be worried about taking

Spironolactone. It will help you to get your K in control and lower your bp,

It may be few days (like 2-3) before you notice a substiatial difference and

as days go by, you will start to feel better, but it may take time. Are you

on any other medication? I too was thinking 3 years ago that it was the end

for me. I went from being in my 40s to feeling like I was 90 yrs old with

depression, muscle weakness, aches and pains and the brain fogs.

If you haven't already purchase the DASH book(receipes are also available

online), following it. Avoid all processed foods as well.

Farah

On Mon, Mar 16, 2009 at 10:07 AM, callie.nelle <callie.nelle@...>wrote:

> I am new to this group, and I am grateful that you are here.

>

> I was diagnosed with primary hyperaldosteronism on February 9 after about

> six trips to the emergency room with heart attack-like symptoms (sharp pain

> in the chest, irregular heart beat, high BP, nausea, tingling in the hands).

> This happened over about 18 months time during the highest period of stress

> of my lifetime. They never found anything except low potassium and high BP.

> After the first trip, they sent me to a cardiologist who put me on BP meds

> that depleted potassium and gave me xanax for what he diagnosed as panic

> attacks. The episodes just got worse. Finally, I got a primary care

> physician who sent me to a nephrologist who diagnosed primary aldosteronism.

> My aldosterone was 46.8 and my renin 0.57 (upright). Then I was sent to an

> endo who did a CT scan and found nodules on both adrenals. Since the first

> of December I have been on 40 meq K and 25 mg amlodipine for BP. Some time I

> feel like myself, and sometime I feel pretty bad.

>

> Today I am supposed to begin taking 25 mg spiro, reduce my K to 10meq and

> continue the 25 mg amlodipine. To tell the truth, I am pretty nervous about

> stopping the K.

>

> I have always been healthy before this--even had LOW BP for many years and

> no primary care doctor. Now, sometimes I feel like I have lost my life. The

> hardest part is the exhaustion and not being able to do what I need to do

> and want to do. Also, the feeling that my body is out of control is pretty

> scary.

>

> Thanks for listening.

>

> Callie

>

>

>

[Guest guest]

I would be very pleased to assist on this project, Dr Grim.

Carol

Clarence Grim wrote:

>

> To all. I believe we now have enough folks with a similar story that

> we can think about publishing a paper on the anxiety symptoms and

> signs of primary aldosteronism.

>

> Any one interested in being a coauthor?

>

> On Mar 16, 2009, at 10:07 AM, callie.nelle wrote:

>

> > I am new to this group, and I am grateful that you are here.

> >

> > I was diagnosed with primary hyperaldosteronism on February 9 after

> > about six trips to the emergency room with heart attack-like

> > symptoms (sharp pain in the chest, irregular heart beat, high BP,

> > nausea, tingling in the hands). This happened over about 18 months

> > time during the highest period of stress of my lifetime. They never

> > found anything except low potassium and high BP. After the first

> > trip, they sent me to a cardiologist who put me on BP meds that

> > depleted potassium and gave me xanax for what he diagnosed as panic

> > attacks. The episodes just got worse. Finally, I got a primary care

> > physician who sent me to a nephrologist who diagnosed primary

> > aldosteronism. My aldosterone was 46.8 and my renin 0.57 (upright).

> > Then I was sent to an endo who did a CT scan and found nodules on

> > both adrenals. Since the first of December I have been on 40 meq K

> > and 25 mg amlodipine for BP. Some time I feel like myself, and

> > sometime I feel pretty bad.

> >

> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

> > 10meq and continue the 25 mg amlodipine. To tell the truth, I am

> > pretty nervous about stopping the K.

> >

> > I have always been healthy before this--even had LOW BP for many

> > years and no primary care doctor. Now, sometimes I feel like I have

> > lost my life. The hardest part is the exhaustion and not being able

> > to do what I need to do and want to do. Also, the feeling that my

> > body is out of control is pretty scary.

> >

> > Thanks for listening.

> >

> > Callie

> >

> >

> >

>

>

[Guest guest]

Hello Group I am new here, I joined yesterday.

Callie, Your experience sounds very much like mine with the trips to the ER and

the heart attack like symptoms. Mine took 9 years to diagnose and part of that

time I was on Aldactone(another form of Spiro). Now I am aware that they say

generic is the same, but after being on the Aldactone, the pharmacy decided to

use the generic version of spiro and it did nothing for me. I changed back to

the Aldactone and had many years of success. It only lasted a few years though

and I have recently had a left adrenalectomy. It has been 3 1/2 weeks and we are

now trying to adjust the meds I am on to work with the surgery. I read an

article that said that it could take 3-6 months for your body to adjust to the

adrenalectomy. I felt great shortly after and considered it a true miracle that

it was that easy, but I am finding it is still affecting my system. I hope we

will find the magic combination and I will once again be " normal " .

I am so glad I have found this group. Can anyone who has had the adrenalectomy

advise me the path they took to complete recovery?

Lori

>

> I am new to this group, and I am grateful that you are here.

>

> I was diagnosed with primary hyperaldosteronism on February 9 after about six

trips to the emergency room with heart attack-like symptoms (sharp pain in the

chest, irregular heart beat, high BP, nausea, tingling in the hands). This

happened over about 18 months time during the highest period of stress of my

lifetime. They never found anything except low potassium and high BP. After the

first trip, they sent me to a cardiologist who put me on BP meds that depleted

potassium and gave me xanax for what he diagnosed as panic attacks. The episodes

just got worse. Finally, I got a primary care physician who sent me to a

nephrologist who diagnosed primary aldosteronism. My aldosterone was 46.8 and

my renin 0.57 (upright). Then I was sent to an endo who did a CT scan and found

nodules on both adrenals. Since the first of December I have been on 40 meq K

and 25 mg amlodipine for BP. Some time I feel like myself, and sometime I feel

pretty bad.

>

> Today I am supposed to begin taking 25 mg spiro, reduce my K to 10meq and

continue the 25 mg amlodipine. To tell the truth, I am pretty nervous about

stopping the K.

>

> I have always been healthy before this--even had LOW BP for many years and no

primary care doctor. Now, sometimes I feel like I have lost my life. The

hardest part is the exhaustion and not being able to do what I need to do and

want to do. Also, the feeling that my body is out of control is pretty scary.

>

> Thanks for listening.

>

> Callie

>

[Guest guest]

research high potassium foods and get massively into them + low salt - it helps

heaps - I find that a 150 g packet of spinach with a light balsamic vinegar

dressing and a little olive oil is as good as any pill any time

________________________________

From: callie.nelle <callie.nelle@...>

hyperaldosteronism

Sent: Tuesday, 17 March, 2009 2:07:17 AM

Subject: My Experience and Starting Spiro Today

I am new to this group, and I am grateful that you are here.

I was diagnosed with primary hyperaldosteronism on February 9 after about six

trips to the emergency room with heart attack-like symptoms (sharp pain in the

chest, irregular heart beat, high BP, nausea, tingling in the hands). This

happened over about 18 months time during the highest period of stress of my

lifetime. They never found anything except low potassium and high BP. After the

first trip, they sent me to a cardiologist who put me on BP meds that depleted

potassium and gave me xanax for what he diagnosed as panic attacks. The episodes

just got worse. Finally, I got a primary care physician who sent me to a

nephrologist who diagnosed primary aldosteronism. My aldosterone was 46.8 and

my renin 0.57 (upright). Then I was sent to an endo who did a CT scan and found

nodules on both adrenals.. Since the first of December I have been on 40 meq K

and 25 mg amlodipine for BP. Some time I feel like myself, and sometime I feel

pretty bad.

Today I am supposed to begin taking 25 mg spiro, reduce my K to 10meq and

continue the 25 mg amlodipine. To tell the truth, I am pretty nervous about

stopping the K.

I have always been healthy before this--even had LOW BP for many years and no

primary care doctor. Now, sometimes I feel like I have lost my life. The

hardest part is the exhaustion and not being able to do what I need to do and

want to do. Also, the feeling that my body is out of control is pretty scary.

Thanks for listening.

Callie

Stay connected to the people that matter most with a smarter inbox. Take a

look http://au.docs./mail/smarterinbox

[Guest guest]

Do you have any experience in Medical writing or data analysis or data

management?

Can you send me a resume or CV.

Thanks

Clarence E. Grim, BS, MS, MD

On Tuesday, March 17, 2009, at 01:36AM, " Farah Rahbar " <farahbar@...>

wrote:

>Dr. Grim:

>I would certainly be interested in helping out.

>

>Farah

>

>On Mon, Mar 16, 2009 at 10:22 AM, Clarence Grim <lowerbp2@...> wrote:

>

>> To all. I believe we now have enough folks with a similar story that

>> we can think about publishing a paper on the anxiety symptoms and

>> signs of primary aldosteronism.

>>

>> Any one interested in being a coauthor?

>>

>>

>> On Mar 16, 2009, at 10:07 AM, callie.nelle wrote:

>>

>> > I am new to this group, and I am grateful that you are here.

>> >

>> > I was diagnosed with primary hyperaldosteronism on February 9 after

>> > about six trips to the emergency room with heart attack-like

>> > symptoms (sharp pain in the chest, irregular heart beat, high BP,

>> > nausea, tingling in the hands). This happened over about 18 months

>> > time during the highest period of stress of my lifetime. They never

>> > found anything except low potassium and high BP. After the first

>> > trip, they sent me to a cardiologist who put me on BP meds that

>> > depleted potassium and gave me xanax for what he diagnosed as panic

>> > attacks. The episodes just got worse. Finally, I got a primary care

>> > physician who sent me to a nephrologist who diagnosed primary

>> > aldosteronism. My aldosterone was 46.8 and my renin 0.57 (upright).

>> > Then I was sent to an endo who did a CT scan and found nodules on

>> > both adrenals. Since the first of December I have been on 40 meq K

>> > and 25 mg amlodipine for BP. Some time I feel like myself, and

>> > sometime I feel pretty bad.

>> >

>> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

>> > 10meq and continue the 25 mg amlodipine. To tell the truth, I am

>> > pretty nervous about stopping the K.

>> >

>> > I have always been healthy before this--even had LOW BP for many

>> > years and no primary care doctor. Now, sometimes I feel like I have

>> > lost my life. The hardest part is the exhaustion and not being able

>> > to do what I need to do and want to do. Also, the feeling that my

>> > body is out of control is pretty scary.

>> >

>> > Thanks for listening.

>> >

>> > Callie

>> >

>> >

>> >

>>

>>

[Guest guest]

I had an adrenalectomy 4 weeks ago. My blood pressure and potassium are back to

normal

but my heart rate goes up when I exert myself. My doctors were stumped at first,

but now my surgeon thinks there was something going on before that my tumor was

compensating for. I was not on any medication before the surgery, so I can't

help you there. I am really interested in reading that article about it taking

3-6 months. I was never told that. Could you tell me where you found it? Thanks!

Re: My Experience and Starting Spiro Today

Hello Group I am new here, I joined yesterday.

Callie, Your experience sounds very much like mine with the trips to the ER and

the heart attack like symptoms. Mine took 9 years to diagnose and part of that

time I was on Aldactone(another form of Spiro). Now I am aware that they say

generic is the same, but after being on the Aldactone, the pharmacy decided to

use the generic version of spiro and it did nothing for me. I changed back to

the Aldactone and had many years of success. It only lasted a few years though

and I have recently had a left adrenalectomy. It has been 3 1/2 weeks and we are

now trying to adjust the meds I am on to work with the surgery. I read an

article that said that it could take 3-6 months for your body to adjust to the

adrenalectomy. I felt great shortly after and considered it a true miracle that

it was that easy, but I am finding it is still affecting my system. I hope we

will find the magic combination and I will once again be " normal " .

I am so glad I have found this group. Can anyone who has had the adrenalectomy

advise me the path they took to complete recovery?

Lori

>

> I am new to this group, and I am grateful that you are here.

>

> I was diagnosed with primary hyperaldosteronism on February 9 after about six

trips to the emergency room with heart attack-like symptoms (sharp pain in the

chest, irregular heart beat, high BP, nausea, tingling in the hands). This

happened over about 18 months time during the highest period of stress of my

lifetime. They never found anything except low potassium and high BP. After the

first trip, they sent me to a cardiologist who put me on BP meds that depleted

potassium and gave me xanax for what he diagnosed as panic attacks. The episodes

just got worse. Finally, I got a primary care physician who sent me to a

nephrologist who diagnosed primary aldosteronism. My aldosterone was 46.8 and

my renin 0.57 (upright). Then I was sent to an endo who did a CT scan and found

nodules on both adrenals. Since the first of December I have been on 40 meq K

and 25 mg amlodipine for BP. Some time I feel like myself, and sometime I feel

pretty bad.

>

> Today I am supposed to begin taking 25 mg spiro, reduce my K to 10meq and

continue the 25 mg amlodipine. To tell the truth, I am pretty nervous about

stopping the K.

>

> I have always been healthy before this--even had LOW BP for many years and no

primary care doctor. Now, sometimes I feel like I have lost my life. The

hardest part is the exhaustion and not being able to do what I need to do and

want to do. Also, the feeling that my body is out of control is pretty scary.

>

> Thanks for listening.

>

> Callie

>

[Guest guest]

Dr. Grim,

Using the info gathered here to produce a published paper is a GREAT idea! We

can use the Conn Syndrome wiki to gather stories and symptoms lists in one

collaborative space. GoogleDocs is another good collaborative space for this

type of project. I would like to help in some capacity (writer, editor, etc.).

Please advise.

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

> >>

> >> > I am new to this group, and I am grateful that you are here.

> >> >

> >> > I was diagnosed with primary hyperaldosteronism on February 9 after

> >> > about six trips to the emergency room with heart attack-like

> >> > symptoms (sharp pain in the chest, irregular heart beat, high BP,

> >> > nausea, tingling in the hands). This happened over about 18 months

> >> > time during the highest period of stress of my lifetime. They never

> >> > found anything except low potassium and high BP. After the first

> >> > trip, they sent me to a cardiologist who put me on BP meds that

> >> > depleted potassium and gave me xanax for what he diagnosed as panic

> >> > attacks. The episodes just got worse. Finally, I got a primary care

> >> > physician who sent me to a nephrologist who diagnosed primary

> >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57 (upright).

> >> > Then I was sent to an endo who did a CT scan and found nodules on

> >> > both adrenals. Since the first of December I have been on 40 meq K

> >> > and 25 mg amlodipine for BP. Some time I feel like myself, and

> >> > sometime I feel pretty bad.

> >> >

> >> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

> >> > 10meq and continue the 25 mg amlodipine. To tell the truth, I am

> >> > pretty nervous about stopping the K.

> >> >

> >> > I have always been healthy before this--even had LOW BP for many

> >> > years and no primary care doctor. Now, sometimes I feel like I have

> >> > lost my life. The hardest part is the exhaustion and not being able

> >> > to do what I need to do and want to do. Also, the feeling that my

> >> > body is out of control is pretty scary.

> >> >

> >> > Thanks for listening.

> >> >

> >> > Callie

> >> >

> >> >

> >> >

> >>

> >>

[Guest guest]

Good Callie is collecting names of those who want to help and their

background skills so we can make assignments and share. a has

developed a sample questionnaire and we are looking for a list of

questions folks wished their Drs had asked them.

On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> Dr. Grim,

>

> Using the info gathered here to produce a published paper is a

> GREAT idea! We can use the Conn Syndrome wiki to gather stories and

> symptoms lists in one collaborative space. GoogleDocs is another

> good collaborative space for this type of project. I would like to

> help in some capacity (writer, editor, etc.). Please advise.

>

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

>

>

> > >>

> > >> > I am new to this group, and I am grateful that you are here.

> > >> >

> > >> > I was diagnosed with primary hyperaldosteronism on February

> 9 after

> > >> > about six trips to the emergency room with heart attack-like

> > >> > symptoms (sharp pain in the chest, irregular heart beat,

> high BP,

> > >> > nausea, tingling in the hands). This happened over about 18

> months

> > >> > time during the highest period of stress of my lifetime.

> They never

> > >> > found anything except low potassium and high BP. After the

> first

> > >> > trip, they sent me to a cardiologist who put me on BP meds that

> > >> > depleted potassium and gave me xanax for what he diagnosed

> as panic

> > >> > attacks. The episodes just got worse. Finally, I got a

> primary care

> > >> > physician who sent me to a nephrologist who diagnosed primary

> > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> (upright).

> > >> > Then I was sent to an endo who did a CT scan and found

> nodules on

> > >> > both adrenals. Since the first of December I have been on 40

> meq K

> > >> > and 25 mg amlodipine for BP. Some time I feel like myself, and

> > >> > sometime I feel pretty bad.

> > >> >

> > >> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

> > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> I am

> > >> > pretty nervous about stopping the K.

> > >> >

> > >> > I have always been healthy before this--even had LOW BP for

> many

> > >> > years and no primary care doctor. Now, sometimes I feel like

> I have

> > >> > lost my life. The hardest part is the exhaustion and not

> being able

> > >> > to do what I need to do and want to do. Also, the feeling

> that my

> > >> > body is out of control is pretty scary.

> > >> >

> > >> > Thanks for listening.

> > >> >

> > >> > Callie

> > >> >

> > >> >

> > >> >

> > >>

> > >>

[Guest guest]

I have an idea. I think instead of series of questions and answers that we

wished the doctors had asked them, we make a campaign by making posters in

large print, that we can send to various primary care offices as well as the

ERs. The posters will simply say in big letters that will be hard to avoid

and very easy to understand:

Low potassium + High blood pressure = Possible Hyperaldasteronism

High aldosterone + Low renin = Possible Hyperaldasteronism

Blood Pressure Medications dont work? Try Spironolactone

It will be easy and simple. My experience is that anything more than simple

one or two sentences will be hard to read. Specially doctors will not have

the time to read unless they are involved in some kind of research.

We may be able to get the American Hypertension or the American Heart

Association to fund it for us.

Farah

On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2@...> wrote:

> Good Callie is collecting names of those who want to help and their

> background skills so we can make assignments and share. a has

> developed a sample questionnaire and we are looking for a list of

> questions folks wished their Drs had asked them.

>

>

> On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

>

> > Dr. Grim,

> >

> > Using the info gathered here to produce a published paper is a

> > GREAT idea! We can use the Conn Syndrome wiki to gather stories and

> > symptoms lists in one collaborative space. GoogleDocs is another

> > good collaborative space for this type of project. I would like to

> > help in some capacity (writer, editor, etc.). Please advise.

> >

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

> >

> >

> > > >>

> > > >> > I am new to this group, and I am grateful that you are here.

> > > >> >

> > > >> > I was diagnosed with primary hyperaldosteronism on February

> > 9 after

> > > >> > about six trips to the emergency room with heart attack-like

> > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > high BP,

> > > >> > nausea, tingling in the hands). This happened over about 18

> > months

> > > >> > time during the highest period of stress of my lifetime.

> > They never

> > > >> > found anything except low potassium and high BP. After the

> > first

> > > >> > trip, they sent me to a cardiologist who put me on BP meds that

> > > >> > depleted potassium and gave me xanax for what he diagnosed

> > as panic

> > > >> > attacks. The episodes just got worse. Finally, I got a

> > primary care

> > > >> > physician who sent me to a nephrologist who diagnosed primary

> > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > (upright).

> > > >> > Then I was sent to an endo who did a CT scan and found

> > nodules on

> > > >> > both adrenals. Since the first of December I have been on 40

> > meq K

> > > >> > and 25 mg amlodipine for BP. Some time I feel like myself, and

> > > >> > sometime I feel pretty bad.

> > > >> >

> > > >> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

> > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > I am

> > > >> > pretty nervous about stopping the K.

> > > >> >

> > > >> > I have always been healthy before this--even had LOW BP for

> > many

> > > >> > years and no primary care doctor. Now, sometimes I feel like

> > I have

> > > >> > lost my life. The hardest part is the exhaustion and not

> > being able

> > > >> > to do what I need to do and want to do. Also, the feeling

> > that my

> > > >> > body is out of control is pretty scary.

> > > >> >

> > > >> > Thanks for listening.

> > > >> >

> > > >> > Callie

> > > >> >

> > > >> >

> > > >> >

> > > >>

> > > >>

[Guest guest]

Look at the u tube video.... what make for a good poster may not make

any clinical sense.

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

On Mar 23, 2009, at 12:45 AM, Farah Rahbar wrote:

> I have an idea. I think instead of series of questions and answers

> that we

> wished the doctors had asked them, we make a campaign by making

> posters in

> large print, that we can send to various primary care offices as well

> as the

> ERs. The posters will simply say in big letters that will be hard to

> avoid

> and very easy to understand:

>

> Low potassium + High blood pressure = Possible Hyperaldasteronism

>

> High aldosterone + Low renin = Possible Hyperaldasteronism

>

> Blood Pressure Medications dont work? Try Spironolactone

>

> It will be easy and simple. My experience is that anything more than

> simple

> one or two sentences will be hard to read. Specially doctors will not

> have

> the time to read unless they are involved in some kind of research.

>

> We may be able to get the American Hypertension or the American Heart

> Association to fund it for us.

>

> Farah

>

> On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2@...>

> wrote:

>

> > Good Callie is collecting names of those who want to help and their

> > background skills so we can make assignments and share. a has

> > developed a sample questionnaire and we are looking for a list of

> > questions folks wished their Drs had asked them.

> >

> >

> > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> >

> > > Dr. Grim,

> > >

> > > Using the info gathered here to produce a published paper is a

> > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> and

> > > symptoms lists in one collaborative space. GoogleDocs is another

> > > good collaborative space for this type of project. I would like to

> > > help in some capacity (writer, editor, etc.). Please advise.

> > >

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

> > >

> > >

> > > > >>

> > > > >> > I am new to this group, and I am grateful that you are

> here.

> > > > >> >

> > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > 9 after

> > > > >> > about six trips to the emergency room with heart

> attack-like

> > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > high BP,

> > > > >> > nausea, tingling in the hands). This happened over about 18

> > > months

> > > > >> > time during the highest period of stress of my lifetime.

> > > They never

> > > > >> > found anything except low potassium and high BP. After the

> > > first

> > > > >> > trip, they sent me to a cardiologist who put me on BP meds

> that

> > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > as panic

> > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > primary care

> > > > >> > physician who sent me to a nephrologist who diagnosed

> primary

> > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > (upright).

> > > > >> > Then I was sent to an endo who did a CT scan and found

> > > nodules on

> > > > >> > both adrenals. Since the first of December I have been on

> 40

> > > meq K

> > > > >> > and 25 mg amlodipine for BP. Some time I feel like myself,

> and

> > > > >> > sometime I feel pretty bad.

> > > > >> >

> > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce my

> K to

> > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > I am

> > > > >> > pretty nervous about stopping the K.

> > > > >> >

> > > > >> > I have always been healthy before this--even had LOW BP for

> > > many

> > > > >> > years and no primary care doctor. Now, sometimes I feel

> like

> > > I have

> > > > >> > lost my life. The hardest part is the exhaustion and not

> > > being able

> > > > >> > to do what I need to do and want to do. Also, the feeling

> > > that my

> > > > >> > body is out of control is pretty scary.

> > > > >> >

> > > > >> > Thanks for listening.

> > > > >> >

> > > > >> > Callie

> > > > >> >

> > > > >> >

> > > > >> >

> > > > >>

> > > > >>

[Guest guest]

Farah

I don't like the idea of promoting a drug that has such adverse side effects. 

Surely the doctors working on this problem have other avenues with fewer

dangerous side effects.  Advertising a drug like spiro isn't the right way to go

about it - albeit your idea is fantastic for helping patients gain knowledge and

giving them tools to ask questions. 

Here's what medsafe says about our supposed " wonder drug "

http://www.medsafe.govt.nz/Profs/Datasheet/s/Spirotonetab.htm

Adverse Effects

 

Gynaecomastia may develop in association with the use of spironolactone, and

physicians should be alert to its possible onset. The development of

gynaecomastia appears to be related to both dosage level duration of therapy and

is normally reversible when spironolactone is discontinued. In rare instances

some breast enlargement may persist.

Other adverse reactions that have been reported in association with

spironolactone are: gastrointestinal symptoms including cramping and diarrhoea,

drowsiness, lethargy, headache, maculopapular or erythematous cutaneous

eruptions, urticaria, mental confusion, drug fever, ataxia, impotence, irregular

menses or amenorrhoea, and post-menopausal bleeding. A few cases of

agranulocytosis have been reported in patients taking spironolactone.

Adverse reactions are usually reversible upon discontinuation of the drug.

Interactions

The administration of potassium supplements, a diet rich in potassium, including

salt substitutes, or of other potassium sparing agents is not recommended as it

may induce hyperkalaemia.

Severe hyperkalaemia has been reported in patients co-administered

potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

Spironolactone reduces the vascular responsiveness to noradrenaline. Therefore

caution should be exercised in the management of patient subjected to regional

or general anaesthesia while they are being treated with spironolactone.

Aspirin attenuates the diuretic effect of spironolactone by blocking the

secretion of canrenone in the renal tubule. Indomethacin and mefenamic acid have

been shown to inhibit the excretion of canrenone.

As carbenoxolone may cause sodium retention and thus decrease the effectiveness

of spironolactone, concurrent use of the two agents should be avoided.

Spironolactone enhances the metabolism of antipyrine.

Spironolactone has been shown to increase the half-life of digoxin. This may

result in increased serum digoxin levels and subsequent digitalis toxicity. It

may be necessary to reduce the maintenance and digitalization doses when

spironolactone is administered and the patient should be carefully monitored to

avoid over-or under-digitalization. Several reports of possible interference

with digoxin radioimmunoassays by spironolactone, or its metabolites has

appeared in the literature. Neither the extent nor the potential clinical

significance of its interference (which may be assay-specific) has been fully

established.

Overdosage

Although true toxic effects have not been reported, overdosage may be manifested

by nausea and vomiting and (more rarely) by drowsiness, mental confusion,

maculopapular or erythematous rash or diarrhoea. Electrolyte imbalances and

dehydration may occur. Hyperkalaemia may be produced; symptoms include

paraesthesia, weakness, flaccid paralysis and tetany. The earliest signs are

characteristic electrocardiographic abnormalities including tall " tent shaped " T

waves, decreased amplitude of the P waves and widening of the QRS complex.

Spironolactone should be discontinued and potassium intake (including dietary

potassium) restricted.

Symptomatic and supportive measure should be employed. Induce vomiting or

evacuate the stomach by lavage. There is no specific antidote. Treat fluid

depletion, electrolyte imbalances, and hypotension by established procedures.

Hyperkalaemia can be treated promptly by the rapid intravenous administration of

glucose (20 to 50 percent) and regular insulin, using 0.25 to 0.5 units of

insulin per gram of glucose. This is a temporary measure to be repeated as

required. Potassium excreting diuretics and ion exchange resins may also be

administered, repeating as required.

Sue

________________________________

From: Farah Rahbar <farahbar@...>

hyperaldosteronism

Sent: Monday, 23 March, 2009 5:45:42 PM

Subject: Re: Re: My Experience and Starting Spiro Today

I have an idea. I think instead of series of questions and answers that we

wished the doctors had asked them, we make a campaign by making posters in

large print, that we can send to various primary care offices as well as the

ERs. The posters will simply say in big letters that will be hard to avoid

and very easy to understand:

Low potassium + High blood pressure = Possible Hyperaldasteronism

High aldosterone + Low renin = Possible Hyperaldasteronism

Blood Pressure Medications dont work? Try Spironolactone

It will be easy and simple. My experience is that anything more than simple

one or two sentences will be hard to read. Specially doctors will not have

the time to read unless they are involved in some kind of research.

We may be able to get the American Hypertension or the American Heart

Association to fund it for us.

Farah

On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com> wrote:

> Good Callie is collecting names of those who want to help and their

> background skills so we can make assignments and share. a has

> developed a sample questionnaire and we are looking for a list of

> questions folks wished their Drs had asked them.

>

>

> On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

>

> > Dr. Grim,

> >

> > Using the info gathered here to produce a published paper is a

> > GREAT idea! We can use the Conn Syndrome wiki to gather stories and

> > symptoms lists in one collaborative space. GoogleDocs is another

> > good collaborative space for this type of project. I would like to

> > help in some capacity (writer, editor, etc.). Please advise.

> >

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

> >

> >

> > > >>

> > > >> > I am new to this group, and I am grateful that you are here.

> > > >> >

> > > >> > I was diagnosed with primary hyperaldosteronism on February

> > 9 after

> > > >> > about six trips to the emergency room with heart attack-like

> > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > high BP,

> > > >> > nausea, tingling in the hands). This happened over about 18

> > months

> > > >> > time during the highest period of stress of my lifetime.

> > They never

> > > >> > found anything except low potassium and high BP. After the

> > first

> > > >> > trip, they sent me to a cardiologist who put me on BP meds that

> > > >> > depleted potassium and gave me xanax for what he diagnosed

> > as panic

> > > >> > attacks. The episodes just got worse. Finally, I got a

> > primary care

> > > >> > physician who sent me to a nephrologist who diagnosed primary

> > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > (upright).

> > > >> > Then I was sent to an endo who did a CT scan and found

> > nodules on

> > > >> > both adrenals. Since the first of December I have been on 40

> > meq K

> > > >> > and 25 mg amlodipine for BP. Some time I feel like myself, and

> > > >> > sometime I feel pretty bad.

> > > >> >

> > > >> > Today I am supposed to begin taking 25 mg spiro, reduce my K to

> > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > I am

> > > >> > pretty nervous about stopping the K.

> > > >> >

> > > >> > I have always been healthy before this--even had LOW BP for

> > many

> > > >> > years and no primary care doctor. Now, sometimes I feel like

> > I have

> > > >> > lost my life. The hardest part is the exhaustion and not

> > being able

> > > >> > to do what I need to do and want to do. Also, the feeling

> > that my

> > > >> > body is out of control is pretty scary.

> > > >> >

> > > >> > Thanks for listening.

> > > >> >

> > > >> > Callie

> > > >> >

> > > >> >

> > > >> >

> > > >>

> > > >>

[Guest guest]

bingo ... i could not agree with your more ..... my doc #1 ruled out

spiro precisely because of this and ordered Inspra instead. My Medicare

Part D plan covers it as does NY Medicaid. And Inspra reportedly goes

generic soon.

as

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

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

On Mar 23, 2009, at 2:18 PM, marysue hopper wrote:

> Farah

>

> I don't like the idea of promoting a drug that has such adverse side

> effects.  Surely the doctors working on this problem have other

> avenues with fewer dangerous side effects.  Advertising a drug like

> spiro isn't the right way to go about it - albeit your idea is

> fantastic for helping patients gain knowledge and giving them tools to

> ask questions. 

>

> Here's what medsafe says about our supposed " wonder drug "

> http://www.medsafe.govt.nz/Profs/Datasheet/s/Spirotonetab.htm

>

> Adverse Effects

>  

> Gynaecomastia may develop in association with the use of

> spironolactone, and physicians should be alert to its possible onset.

> The development of gynaecomastia appears to be related to both dosage

> level duration of therapy and is normally reversible when

> spironolactone is discontinued. In rare instances some breast

> enlargement may persist.

> Other adverse reactions that have been reported in association with

> spironolactone are: gastrointestinal symptoms including cramping and

> diarrhoea, drowsiness, lethargy, headache, maculopapular or

> erythematous cutaneous eruptions, urticaria, mental confusion, drug

> fever, ataxia, impotence, irregular menses or amenorrhoea, and

> post-menopausal bleeding. A few cases of agranulocytosis have been

> reported in patients taking spironolactone.

> Adverse reactions are usually reversible upon discontinuation of the

> drug.

> Interactions

> The administration of potassium supplements, a diet rich in

> potassium, including salt substitutes, or of other potassium sparing

> agents is not recommended as it may induce hyperkalaemia.

> Severe hyperkalaemia has been reported in patients co-administered

> potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

> Spironolactone reduces the vascular responsiveness to noradrenaline.

> Therefore caution should be exercised in the management of patient

> subjected to regional or general anaesthesia while they are being

> treated with spironolactone.

> Aspirin attenuates the diuretic effect of spironolactone by blocking

> the secretion of canrenone in the renal tubule. Indomethacin and

> mefenamic acid have been shown to inhibit the excretion of canrenone.

> As carbenoxolone may cause sodium retention and thus decrease the

> effectiveness of spironolactone, concurrent use of the two agents

> should be avoided.

> Spironolactone enhances the metabolism of antipyrine.

> Spironolactone has been shown to increase the half-life of digoxin.

> This may result in increased serum digoxin levels and subsequent

> digitalis toxicity. It may be necessary to reduce the maintenance and

> digitalization doses when spironolactone is administered and the

> patient should be carefully monitored to avoid over-or

> under-digitalization. Several reports of possible interference with

> digoxin radioimmunoassays by spironolactone, or its metabolites has

> appeared in the literature. Neither the extent nor the potential

> clinical significance of its interference (which may be

> assay-specific) has been fully established.

> Overdosage

> Although true toxic effects have not been reported, overdosage may be

> manifested by nausea and vomiting and (more rarely) by drowsiness,

> mental confusion, maculopapular or erythematous rash or diarrhoea.

> Electrolyte imbalances and dehydration may occur. Hyperkalaemia may be

> produced; symptoms include paraesthesia, weakness, flaccid paralysis

> and tetany. The earliest signs are characteristic electrocardiographic

> abnormalities including tall " tent shaped " T waves, decreased

> amplitude of the P waves and widening of the QRS complex.

> Spironolactone should be discontinued and potassium intake (including

> dietary potassium) restricted.

> Symptomatic and supportive measure should be employed. Induce

> vomiting or evacuate the stomach by lavage. There is no specific

> antidote. Treat fluid depletion, electrolyte imbalances, and

> hypotension by established procedures.

> Hyperkalaemia can be treated promptly by the rapid intravenous

> administration of glucose (20 to 50 percent) and regular insulin,

> using 0.25 to 0.5 units of insulin per gram of glucose. This is a

> temporary measure to be repeated as required. Potassium excreting

> diuretics and ion exchange resins may also be administered, repeating

> as required.

>

> Sue

>

> ________________________________

> From: Farah Rahbar <farahbar@...>

> hyperaldosteronism

> Sent: Monday, 23 March, 2009 5:45:42 PM

> Subject: Re: Re: My Experience and Starting

> Spiro Today

>

> I have an idea. I think instead of series of questions and answers

> that we

> wished the doctors had asked them, we make a campaign by making

> posters in

> large print, that we can send to various primary care offices as well

> as the

> ERs. The posters will simply say in big letters that will be hard to

> avoid

> and very easy to understand:

>

> Low potassium + High blood pressure = Possible Hyperaldasteronism

>

> High aldosterone + Low renin = Possible Hyperaldasteronism

>

> Blood Pressure Medications dont work? Try Spironolactone

>

> It will be easy and simple. My experience is that anything more than

> simple

> one or two sentences will be hard to read. Specially doctors will not

> have

> the time to read unless they are involved in some kind of research.

>

> We may be able to get the American Hypertension or the American Heart

> Association to fund it for us.

>

> Farah

>

> On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

> wrote:

>

> > Good Callie is collecting names of those who want to help and their

> > background skills so we can make assignments and share. a has

> > developed a sample questionnaire and we are looking for a list of

> > questions folks wished their Drs had asked them.

> >

> >

> > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> >

> > > Dr. Grim,

> > >

> > > Using the info gathered here to produce a published paper is a

> > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> and

> > > symptoms lists in one collaborative space. GoogleDocs is another

> > > good collaborative space for this type of project. I would like to

> > > help in some capacity (writer, editor, etc.). Please advise.

> > >

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

> > >

> > >

> > > > >>

> > > > >> > I am new to this group, and I am grateful that you are

> here.

> > > > >> >

> > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > 9 after

> > > > >> > about six trips to the emergency room with heart

> attack-like

> > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > high BP,

> > > > >> > nausea, tingling in the hands). This happened over about 18

> > > months

> > > > >> > time during the highest period of stress of my lifetime.

> > > They never

> > > > >> > found anything except low potassium and high BP. After the

> > > first

> > > > >> > trip, they sent me to a cardiologist who put me on BP meds

> that

> > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > as panic

> > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > primary care

> > > > >> > physician who sent me to a nephrologist who diagnosed

> primary

> > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > (upright).

> > > > >> > Then I was sent to an endo who did a CT scan and found

> > > nodules on

> > > > >> > both adrenals. Since the first of December I have been on

> 40

> > > meq K

> > > > >> > and 25 mg amlodipine for BP. Some time I feel like myself,

> and

> > > > >> > sometime I feel pretty bad.

> > > > >> >

> > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce my

> K to

> > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > I am

> > > > >> > pretty nervous about stopping the K.

> > > > >> >

> > > > >> > I have always been healthy before this--even had LOW BP for

> > > many

> > > > >> > years and no primary care doctor. Now, sometimes I feel

> like

> > > I have

> > > > >> > lost my life. The hardest part is the exhaustion and not

> > > being able

> > > > >> > to do what I need to do and want to do. Also, the feeling

> > > that my

> > > > >> > body is out of control is pretty scary.

> > > > >> >

> > > > >> > Thanks for listening.

> > > > >> >

> > > > >> > Callie

> > > > >> >

> > > > >> >

> > > > >> >

> > > > >>

> > > > >>

[Guest guest]

Every Dr knows that high BP and low K should make one consider PA. But

they have been taught it is very rare so they should not think they

will see more than one in a lifetime.

By far the most common reason for low K due to a diuretic

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 23, 2009, at 1:18 PM, marysue hopper

<marysuehopper@...> wrote:

> Farah

>

> I don't like the idea of promoting a drug that has such adverse side

> effects. Surely the doctors working on this problem have other

> avenues with fewer dangerous side effects. Advertising a drug like

> spiro isn't the right way to go about it - albeit your idea is

> fantastic for helping patients gain knowledge and giving them tools

> to ask questions.

>

> Here's what medsafe says about our supposed " wonder drug "

> http://www.medsafe.govt.nz/Profs/Datasheet/s/Spirotonetab.htm

>

> Adverse Effects

>

> Gynaecomastia may develop in association with the use of

> spironolactone, and physicians should be alert to its possible

> onset. The development of gynaecomastia appears to be related to

> both dosage level duration of therapy and is normally reversible

> when spironolactone is discontinued. In rare instances some breast

> enlargement may persist.

> Other adverse reactions that have been reported in association with

> spironolactone are: gastrointestinal symptoms including cramping and

> diarrhoea, drowsiness, lethargy, headache, maculopapular or

> erythematous cutaneous eruptions, urticaria, mental confusion, drug

> fever, ataxia, impotence, irregular menses or amenorrhoea, and post-

> menopausal bleeding. A few cases of agranulocytosis have been

> reported in patients taking spironolactone.

> Adverse reactions are usually reversible upon discontinuation of the

> drug.

> Interactions

> The administration of potassium supplements, a diet rich in

> potassium, including salt substitutes, or of other potassium sparing

> agents is not recommended as it may induce hyperkalaemia.

> Severe hyperkalaemia has been reported in patients co-administered

> potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

> Spironolactone reduces the vascular responsiveness to noradrenaline.

> Therefore caution should be exercised in the management of patient

> subjected to regional or general anaesthesia while they are being

> treated with spironolactone.

> Aspirin attenuates the diuretic effect of spironolactone by blocking

> the secretion of canrenone in the renal tubule. Indomethacin and

> mefenamic acid have been shown to inhibit the excretion of canrenone.

> As carbenoxolone may cause sodium retention and thus decrease the

> effectiveness of spironolactone, concurrent use of the two agents

> should be avoided.

> Spironolactone enhances the metabolism of antipyrine.

> Spironolactone has been shown to increase the half-life of digoxin.

> This may result in increased serum digoxin levels and subsequent

> digitalis toxicity. It may be necessary to reduce the maintenance

> and digitalization doses when spironolactone is administered and the

> patient should be carefully monitored to avoid over-or under-

> digitalization. Several reports of possible interference with

> digoxin radioimmunoassays by spironolactone, or its metabolites has

> appeared in the literature. Neither the extent nor the potential

> clinical significance of its interference (which may be assay-

> specific) has been fully established.

> Overdosage

> Although true toxic effects have not been reported, overdosage may

> be manifested by nausea and vomiting and (more rarely) by

> drowsiness, mental confusion, maculopapular or erythematous rash or

> diarrhoea. Electrolyte imbalances and dehydration may occur.

> Hyperkalaemia may be produced; symptoms include paraesthesia,

> weakness, flaccid paralysis and tetany. The earliest signs are

> characteristic electrocardiographic abnormalities including tall

> " tent shaped " T waves, decreased amplitude of the P waves and

> widening of the QRS complex. Spironolactone should be discontinued

> and potassium intake (including dietary potassium) restricted.

> Symptomatic and supportive measure should be employed. Induce

> vomiting or evacuate the stomach by lavage. There is no specific

> antidote. Treat fluid depletion, electrolyte imbalances, and

> hypotension by established procedures.

> Hyperkalaemia can be treated promptly by the rapid intravenous

> administration of glucose (20 to 50 percent) and regular insulin,

> using 0.25 to 0.5 units of insulin per gram of glucose. This is a

> temporary measure to be repeated as required. Potassium excreting

> diuretics and ion exchange resins may also be administered,

> repeating as required.

>

> Sue

>

> ________________________________

> From: Farah Rahbar <farahbar@...>

> hyperaldosteronism

> Sent: Monday, 23 March, 2009 5:45:42 PM

> Subject: Re: Re: My Experience and Starting

> Spiro Today

>

> I have an idea. I think instead of series of questions and answers

> that we

> wished the doctors had asked them, we make a campaign by making

> posters in

> large print, that we can send to various primary care offices as

> well as the

> ERs. The posters will simply say in big letters that will be hard to

> avoid

> and very easy to understand:

>

> Low potassium + High blood pressure = Possible Hyperaldasteronism

>

> High aldosterone + Low renin = Possible Hyperaldasteronism

>

> Blood Pressure Medications dont work? Try Spironolactone

>

> It will be easy and simple. My experience is that anything more than

> simple

> one or two sentences will be hard to read. Specially doctors will

> not have

> the time to read unless they are involved in some kind of research.

>

> We may be able to get the American Hypertension or the American Heart

> Association to fund it for us.

>

> Farah

>

> On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

> wrote:

>

> > Good Callie is collecting names of those who want to help and their

> > background skills so we can make assignments and share. a has

> > developed a sample questionnaire and we are looking for a list of

> > questions folks wished their Drs had asked them.

> >

> >

> > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> >

> > > Dr. Grim,

> > >

> > > Using the info gathered here to produce a published paper is a

> > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> and

> > > symptoms lists in one collaborative space. GoogleDocs is another

> > > good collaborative space for this type of project. I would like to

> > > help in some capacity (writer, editor, etc.). Please advise.

> > >

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

> > >

> > >

> > > > >>

> > > > >> > I am new to this group, and I am grateful that you are

> here.

> > > > >> >

> > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > 9 after

> > > > >> > about six trips to the emergency room with heart attack-

> like

> > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > high BP,

> > > > >> > nausea, tingling in the hands). This happened over about 18

> > > months

> > > > >> > time during the highest period of stress of my lifetime.

> > > They never

> > > > >> > found anything except low potassium and high BP. After the

> > > first

> > > > >> > trip, they sent me to a cardiologist who put me on BP

> meds that

> > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > as panic

> > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > primary care

> > > > >> > physician who sent me to a nephrologist who diagnosed

> primary

> > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > (upright).

> > > > >> > Then I was sent to an endo who did a CT scan and found

> > > nodules on

> > > > >> > both adrenals. Since the first of December I have been on

> 40

> > > meq K

> > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> myself, and

> > > > >> > sometime I feel pretty bad.

> > > > >> >

> > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

> my K to

> > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > I am

> > > > >> > pretty nervous about stopping the K.

> > > > >> >

> > > > >> > I have always been healthy before this--even had LOW BP for

> > > many

> > > > >> > years and no primary care doctor. Now, sometimes I feel

> like

> > > I have

> > > > >> > lost my life. The hardest part is the exhaustion and not

> > > being able

> > > > >> > to do what I need to do and want to do. Also, the feeling

> > > that my

> > > > >> > body is out of control is pretty scary.

> > > > >> >

> > > > >> > Thanks for listening.

> > > > >> >

> > > > >> > Callie

> > > > >> >

> > > > >> >

> > > > >> >

> > > > >>

> > > > >>

[Guest guest]

Look at the side effects of any drug and they will scare to death. Inspra

certainly has its own share. Personally, Inspra gave me a raging headache and I

have no problems with spiro. I believe one member here has been on spiro 30+

years. Spiro and Inspra are the only two choices we PA patients currently have,

so pick whatever works for you. The benefit of having controlled blood pressure

and not having to worry about stroke, kidney damage requiring dialysis and

cardiac complications far outweight the risks of either medicine for me. -

a

" Gynecomastia and abnormal vaginal bleeding were reported with INSPRA but not

with placebo. The rates of these sex hormone related adverse events are shown in

Table 5. The rates increased slightly with increasing duration of therapy. In

females, abnormal vaginal bleeding was also reported in 0.8% of patients on

antihypertensive medications (other than spironolactone) in active control arms

of the studies with INSPRA. The most common reasons for discontinuation of

INSPRA were headache, dizziness, angina pectoris/myocardial infarction, and

increased GGT. Liver Function Tests- Serum alanine aminotransferase (ALT) and

gamma glutamyl transpeptidase (GGT) increased in a dose-related manner. Mean

increases ranged from 0.8 U/L at 50 mg daily to 4.8 U/L at 400 mg daily for ALT

and 3.1 U/L at 50 mg daily to 11.3 U/L at 400 mg daily for GGT. Increases in ALT

levels greater than 120 U/L (3 times upper limit of normal) were reported for

15/2259 patients administered

INSPRA and 1/351 placebo-treated patients. Increases in ALT levels greater than

200 U/L (5 times upper limit of normal) were reported for 5/2259 of patients

administered INSPRA and 1/351 placebo-treated patients. Increases of ALT greater

than 120 U/L and bilirubin greater than 1.2 mg/dL were reported 1/2259 patients

administered INSPRA and 0/351 placebo-treated patients. Hepatic failure was not

reported in patients receiving INSPRA.

BUN/Creatinine- Serum creatinine increased in a dose-related manner. Mean

increases ranged from 0.01 mg/dL at 50 mg daily to 0.03 mg/dL at 400 mg daily.

Increases in blood urea nitrogen to greater than 30 mg/dL and serum creatinine

to greater than 2 mg/dL were reported for 0.5% and 0.2%, respectively, of

patients administered INSPRA and 0% of placebo-treated patients.

Uric Acid- Increases in uric acid to greater than 9 mg/dL were reported in 0.3%

of patients administered INSPRA and 0% of placebo-treated patients.

Triglycerides: Serum triglycerides increased in a dose-related

manner. Mean increases ranged from 7.1 mg/dL at 50 mg daily to 26.6

mg/dL at 400 mg daily. Increases in triglycerides (above 252 mg/dL) were

reported for 15% of patients administered INSPRA and 12% of placebotreated

patients.

Cholesterol: Serum cholesterol increased in a dose-related manner.

Mean changes ranged from a decrease of 0.4 mg/dL at 50 mg daily to an

increase of 11.6 mg/dL at 400 mg daily. Increases in serum cholesterol

values greater than 200 mg/dL were reported for 0.3% of patients

administered INSPRA and 0% of placebo-treated patients.

Liver Function Tests: Serum alanine aminotransferase (ALT) and

gamma glutamyl transpeptidase (GGT) increased in a dose-related manner.

Mean increases ranged from 0.8 U/L at 50 mg daily to 4.8 U/L at 400 mg

daily for ALT and 3.1 U/L at 50 mg daily to 11.3 U/L at 400 mg daily for

GGT. Increases in ALT levels greater than 120 U/L (3 times upper limit of

normal) were reported for 15/2259 patients administered INSPRA and

1/351 placebo-treated patients. Increases in ALT levels greater than 200

U/L (5 times upper limit of normal) were reported for 5/2259 of patients

administered INSPRA and 1/351 placebo-treated patients. Increases of

ALT greater than 120 U/L and bilirubin greater than 1.2 mg/dL were

reported 1/2259 patients administered INSPRA and 0/351 placebo-treated

patients. Hepatic failure was not reported in patients receiving INSPRA.

Uric Acid: Increases in uric acid to greater than 9 mg/dL were

reported in 0.3% of patients administered INSPRA and 0% of placebotreated

patients.

The following adverse reactions have been identified during

postapproval use of INSPRA. Because these reactions are reported

voluntarily from a population of uncertain size, it is not always possible to

reliably estimate their frequency or establish a causal relationship to drug

exposure. Skin: angioneurotic edema, rash "

bingo ... i could not agree with your more ..... my doc #1 ruled out

spiro precisely because of this and ordered Inspra instead. My Medicare

Part D plan covers it as does NY Medicaid. And Inspra reportedly goes

generic soon.

as

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

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

On Mar 23, 2009, at 2:18 PM, marysue hopper wrote:

> Farah

>

> I don't like the idea of promoting a drug that has such adverse side

> effects.  Surely the doctors working on this problem have other

> avenues with fewer dangerous side effects.  Advertising a drug like

> spiro isn't the right way to go about it - albeit your idea is

> fantastic for helping patients gain knowledge and giving them tools to

> ask questions. 

>

> Here's what medsafe says about our supposed " wonder drug "

> http://www.medsafe. govt.nz/Profs/ Datasheet/ s/Spirotonetab. htm

>

> Adverse Effects

>  

> Gynaecomastia may develop in association with the use of

> spironolactone, and physicians should be alert to its possible onset.

> The development of gynaecomastia appears to be related to both dosage

> level duration of therapy and is normally reversible when

> spironolactone is discontinued. In rare instances some breast

> enlargement may persist.

> Other adverse reactions that have been reported in association with

> spironolactone are: gastrointestinal symptoms including cramping and

> diarrhoea, drowsiness, lethargy, headache, maculopapular or

> erythematous cutaneous eruptions, urticaria, mental confusion, drug

> fever, ataxia, impotence, irregular menses or amenorrhoea, and

> post-menopausal bleeding. A few cases of agranulocytosis have been

> reported in patients taking spironolactone.

> Adverse reactions are usually reversible upon discontinuation of the

> drug.

> Interactions

> The administration of potassium supplements, a diet rich in

> potassium, including salt substitutes, or of other potassium sparing

> agents is not recommended as it may induce hyperkalaemia.

> Severe hyperkalaemia has been reported in patients co-administered

> potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

> Spironolactone reduces the vascular responsiveness to noradrenaline.

> Therefore caution should be exercised in the management of patient

> subjected to regional or general anaesthesia while they are being

> treated with spironolactone.

> Aspirin attenuates the diuretic effect of spironolactone by blocking

> the secretion of canrenone in the renal tubule. Indomethacin and

> mefenamic acid have been shown to inhibit the excretion of canrenone.

> As carbenoxolone may cause sodium retention and thus decrease the

> effectiveness of spironolactone, concurrent use of the two agents

> should be avoided.

> Spironolactone enhances the metabolism of antipyrine.

> Spironolactone has been shown to increase the half-life of digoxin.

> This may result in increased serum digoxin levels and subsequent

> digitalis toxicity. It may be necessary to reduce the maintenance and

> digitalization doses when spironolactone is administered and the

> patient should be carefully monitored to avoid over-or

> under-digitalizatio n. Several reports of possible interference with

> digoxin radioimmunoassays by spironolactone, or its metabolites has

> appeared in the literature. Neither the extent nor the potential

> clinical significance of its interference (which may be

> assay-specific) has been fully established.

> Overdosage

> Although true toxic effects have not been reported, overdosage may be

> manifested by nausea and vomiting and (more rarely) by drowsiness,

> mental confusion, maculopapular or erythematous rash or diarrhoea.

> Electrolyte imbalances and dehydration may occur. Hyperkalaemia may be

> produced; symptoms include paraesthesia, weakness, flaccid paralysis

> and tetany. The earliest signs are characteristic electrocardiographi c

> abnormalities including tall " tent shaped " T waves, decreased

> amplitude of the P waves and widening of the QRS complex.

> Spironolactone should be discontinued and potassium intake (including

> dietary potassium) restricted.

> Symptomatic and supportive measure should be employed. Induce

> vomiting or evacuate the stomach by lavage. There is no specific

> antidote. Treat fluid depletion, electrolyte imbalances, and

> hypotension by established procedures.

> Hyperkalaemia can be treated promptly by the rapid intravenous

> administration of glucose (20 to 50 percent) and regular insulin,

> using 0.25 to 0.5 units of insulin per gram of glucose. This is a

> temporary measure to be repeated as required. Potassium excreting

> diuretics and ion exchange resins may also be administered, repeating

> as required.

>

> Sue

>

> ____________ _________ _________ __

> From: Farah Rahbar <farahbargmail (DOT) com>

> hyperaldosteronism

> Sent: Monday, 23 March, 2009 5:45:42 PM

> Subject: Re: [hyperaldosteronism ] Re: My Experience and Starting

> Spiro Today

>

> I have an idea. I think instead of series of questions and answers

> that we

> wished the doctors had asked them, we make a campaign by making

> posters in

> large print, that we can send to various primary care offices as well

> as the

> ERs. The posters will simply say in big letters that will be hard to

> avoid

> and very easy to understand:

>

> Low potassium + High blood pressure = Possible Hyperaldasteronism

>

> High aldosterone + Low renin = Possible Hyperaldasteronism

>

> Blood Pressure Medications dont work? Try Spironolactone

>

> It will be easy and simple. My experience is that anything more than

> simple

> one or two sentences will be hard to read. Specially doctors will not

> have

> the time to read unless they are involved in some kind of research.

>

> We may be able to get the American Hypertension or the American Heart

> Association to fund it for us.

>

> Farah

>

> On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

> wrote:

>

> > Good Callie is collecting names of those who want to help and their

> > background skills so we can make assignments and share. a has

> > developed a sample questionnaire and we are looking for a list of

> > questions folks wished their Drs had asked them.

> >

> >

> > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> >

> > > Dr. Grim,

> > >

> > > Using the info gathered here to produce a published paper is a

> > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> and

> > > symptoms lists in one collaborative space. GoogleDocs is another

> > > good collaborative space for this type of project. I would like to

> > > help in some capacity (writer, editor, etc.). Please advise.

> > >

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

> > >

> > >

> > > > >>

> > > > >> > I am new to this group, and I am grateful that you are

> here.

> > > > >> >

> > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > 9 after

> > > > >> > about six trips to the emergency room with heart

> attack-like

> > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > high BP,

> > > > >> > nausea, tingling in the hands). This happened over about 18

> > > months

> > > > >> > time during the highest period of stress of my lifetime.

> > > They never

> > > > >> > found anything except low potassium and high BP. After the

> > > first

> > > > >> > trip, they sent me to a cardiologist who put me on BP meds

> that

> > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > as panic

> > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > primary care

> > > > >> > physician who sent me to a nephrologist who diagnosed

> primary

> > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > (upright).

> > > > >> > Then I was sent to an endo who did a CT scan and found

> > > nodules on

> > > > >> > both adrenals. Since the first of December I have been on

> 40

> > > meq K

> > > > >> > and 25 mg amlodipine for BP. Some time I feel like myself,

> and

> > > > >> > sometime I feel pretty bad.

> > > > >> >

> > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce my

> K to

> > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > I am

> > > > >> > pretty nervous about stopping the K.

> > > > >> >

> > > > >> > I have always been healthy before this--even had LOW BP for

> > > many

> > > > >> > years and no primary care doctor. Now, sometimes I feel

> like

> > > I have

> > > > >> > lost my life. The hardest part is the exhaustion and not

> > > being able

> > > > >> > to do what I need to do and want to do. Also, the feeling

> > > that my

> > > > >> > body is out of control is pretty scary.

> > > > >> >

> > > > >> > Thanks for listening.

> > > > >> >

> > > > >> > Callie

> > > > >> >

> > > > >> >

> > > > >> >

> > > > >>

> > > > >>

[Guest guest]

U need to read our files re folks who have been resurected by spiro

Of course much of the effect can be mimmicked by DASH O

or the rice fruit diet

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 23, 2009, at 1:18 PM, marysue hopper

<marysuehopper@...> wrote:

> Farah

>

> I don't like the idea of promoting a drug that has such adverse side

> effects. Surely the doctors working on this problem have other

> avenues with fewer dangerous side effects. Advertising a drug like

> spiro isn't the right way to go about it - albeit your idea is

> fantastic for helping patients gain knowledge and giving them tools

> to ask questions.

>

> Here's what medsafe says about our supposed " wonder drug "

> http://www.medsafe.govt.nz/Profs/Datasheet/s/Spirotonetab.htm

>

> Adverse Effects

>

> Gynaecomastia may develop in association with the use of

> spironolactone, and physicians should be alert to its possible

> onset. The development of gynaecomastia appears to be related to

> both dosage level duration of therapy and is normally reversible

> when spironolactone is discontinued. In rare instances some breast

> enlargement may persist.

> Other adverse reactions that have been reported in association with

> spironolactone are: gastrointestinal symptoms including cramping and

> diarrhoea, drowsiness, lethargy, headache, maculopapular or

> erythematous cutaneous eruptions, urticaria, mental confusion, drug

> fever, ataxia, impotence, irregular menses or amenorrhoea, and post-

> menopausal bleeding. A few cases of agranulocytosis have been

> reported in patients taking spironolactone.

> Adverse reactions are usually reversible upon discontinuation of the

> drug.

> Interactions

> The administration of potassium supplements, a diet rich in

> potassium, including salt substitutes, or of other potassium sparing

> agents is not recommended as it may induce hyperkalaemia.

> Severe hyperkalaemia has been reported in patients co-administered

> potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

> Spironolactone reduces the vascular responsiveness to noradrenaline.

> Therefore caution should be exercised in the management of patient

> subjected to regional or general anaesthesia while they are being

> treated with spironolactone.

> Aspirin attenuates the diuretic effect of spironolactone by blocking

> the secretion of canrenone in the renal tubule. Indomethacin and

> mefenamic acid have been shown to inhibit the excretion of canrenone.

> As carbenoxolone may cause sodium retention and thus decrease the

> effectiveness of spironolactone, concurrent use of the two agents

> should be avoided.

> Spironolactone enhances the metabolism of antipyrine.

> Spironolactone has been shown to increase the half-life of digoxin.

> This may result in increased serum digoxin levels and subsequent

> digitalis toxicity. It may be necessary to reduce the maintenance

> and digitalization doses when spironolactone is administered and the

> patient should be carefully monitored to avoid over-or under-

> digitalization. Several reports of possible interference with

> digoxin radioimmunoassays by spironolactone, or its metabolites has

> appeared in the literature. Neither the extent nor the potential

> clinical significance of its interference (which may be assay-

> specific) has been fully established.

> Overdosage

> Although true toxic effects have not been reported, overdosage may

> be manifested by nausea and vomiting and (more rarely) by

> drowsiness, mental confusion, maculopapular or erythematous rash or

> diarrhoea. Electrolyte imbalances and dehydration may occur.

> Hyperkalaemia may be produced; symptoms include paraesthesia,

> weakness, flaccid paralysis and tetany. The earliest signs are

> characteristic electrocardiographic abnormalities including tall

> " tent shaped " T waves, decreased amplitude of the P waves and

> widening of the QRS complex. Spironolactone should be discontinued

> and potassium intake (including dietary potassium) restricted.

> Symptomatic and supportive measure should be employed. Induce

> vomiting or evacuate the stomach by lavage. There is no specific

> antidote. Treat fluid depletion, electrolyte imbalances, and

> hypotension by established procedures.

> Hyperkalaemia can be treated promptly by the rapid intravenous

> administration of glucose (20 to 50 percent) and regular insulin,

> using 0.25 to 0.5 units of insulin per gram of glucose. This is a

> temporary measure to be repeated as required. Potassium excreting

> diuretics and ion exchange resins may also be administered,

> repeating as required.

>

> Sue

>

> ________________________________

> From: Farah Rahbar <farahbar@...>

> hyperaldosteronism

> Sent: Monday, 23 March, 2009 5:45:42 PM

> Subject: Re: Re: My Experience and Starting

> Spiro Today

>

> I have an idea. I think instead of series of questions and answers

> that we

> wished the doctors had asked them, we make a campaign by making

> posters in

> large print, that we can send to various primary care offices as

> well as the

> ERs. The posters will simply say in big letters that will be hard to

> avoid

> and very easy to understand:

>

> Low potassium + High blood pressure = Possible Hyperaldasteronism

>

> High aldosterone + Low renin = Possible Hyperaldasteronism

>

> Blood Pressure Medications dont work? Try Spironolactone

>

> It will be easy and simple. My experience is that anything more than

> simple

> one or two sentences will be hard to read. Specially doctors will

> not have

> the time to read unless they are involved in some kind of research.

>

> We may be able to get the American Hypertension or the American Heart

> Association to fund it for us.

>

> Farah

>

> On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

> wrote:

>

> > Good Callie is collecting names of those who want to help and their

> > background skills so we can make assignments and share. a has

> > developed a sample questionnaire and we are looking for a list of

> > questions folks wished their Drs had asked them.

> >

> >

> > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> >

> > > Dr. Grim,

> > >

> > > Using the info gathered here to produce a published paper is a

> > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> and

> > > symptoms lists in one collaborative space. GoogleDocs is another

> > > good collaborative space for this type of project. I would like to

> > > help in some capacity (writer, editor, etc.). Please advise.

> > >

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

> > >

> > >

> > > > >>

> > > > >> > I am new to this group, and I am grateful that you are

> here.

> > > > >> >

> > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > 9 after

> > > > >> > about six trips to the emergency room with heart attack-

> like

> > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > high BP,

> > > > >> > nausea, tingling in the hands). This happened over about 18

> > > months

> > > > >> > time during the highest period of stress of my lifetime.

> > > They never

> > > > >> > found anything except low potassium and high BP. After the

> > > first

> > > > >> > trip, they sent me to a cardiologist who put me on BP

> meds that

> > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > as panic

> > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > primary care

> > > > >> > physician who sent me to a nephrologist who diagnosed

> primary

> > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > (upright).

> > > > >> > Then I was sent to an endo who did a CT scan and found

> > > nodules on

> > > > >> > both adrenals. Since the first of December I have been on

> 40

> > > meq K

> > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> myself, and

> > > > >> > sometime I feel pretty bad.

> > > > >> >

> > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

> my K to

> > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > I am

> > > > >> > pretty nervous about stopping the K.

> > > > >> >

> > > > >> > I have always been healthy before this--even had LOW BP for

> > > many

> > > > >> > years and no primary care doctor. Now, sometimes I feel

> like

> > > I have

> > > > >> > lost my life. The hardest part is the exhaustion and not

> > > being able

> > > > >> > to do what I need to do and want to do. Also, the feeling

> > > that my

> > > > >> > body is out of control is pretty scary.

> > > > >> >

> > > > >> > Thanks for listening.

> > > > >> >

> > > > >> > Callie

> > > > >> >

> > > > >> >

> > > > >> >

> > > > >>

> > > > >>

[Guest guest]

I was on HCT and 40meq of KDUR 3x's daily and ended up in the hospital with a

potassium level of 2.4. This was several years ago before I was diagnosed. It

took several years of looking and asking and going to many Dr's to find out what

the issue was.

~Dave Kiedrowski

> > > > > >>

> > > > > >> > I am new to this group, and I am grateful that you are

> > here.

> > > > > >> >

> > > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > > 9 after

> > > > > >> > about six trips to the emergency room with heart attack-

> > like

> > > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > > high BP,

> > > > > >> > nausea, tingling in the hands). This happened over about 18

> > > > months

> > > > > >> > time during the highest period of stress of my lifetime.

> > > > They never

> > > > > >> > found anything except low potassium and high BP. After the

> > > > first

> > > > > >> > trip, they sent me to a cardiologist who put me on BP

> > meds that

> > > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > > as panic

> > > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > > primary care

> > > > > >> > physician who sent me to a nephrologist who diagnosed

> > primary

> > > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > > (upright).

> > > > > >> > Then I was sent to an endo who did a CT scan and found

> > > > nodules on

> > > > > >> > both adrenals. Since the first of December I have been on

> > 40

> > > > meq K

> > > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> > myself, and

> > > > > >> > sometime I feel pretty bad.

> > > > > >> >

> > > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

> > my K to

> > > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > > I am

> > > > > >> > pretty nervous about stopping the K.

> > > > > >> >

> > > > > >> > I have always been healthy before this--even had LOW BP for

> > > > many

> > > > > >> > years and no primary care doctor. Now, sometimes I feel

> > like

> > > > I have

> > > > > >> > lost my life. The hardest part is the exhaustion and not

> > > > being able

> > > > > >> > to do what I need to do and want to do. Also, the feeling

> > > > that my

> > > > > >> > body is out of control is pretty scary.

> > > > > >> >

> > > > > >> > Thanks for listening.

> > > > > >> >

> > > > > >> > Callie

> > > > > >> >

> > > > > >> >

> > > > > >> >

> > > > > >>

> > > > > >>

[Guest guest]

Please send my article to all MDS AND ERS that missed yourdx

Are u doing better now.

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 23, 2009, at 4:50 PM, bigdogdkiedrow <bigdogdkiedrow@...>

wrote:

> I was on HCT and 40meq of KDUR 3x's daily and ended up in the

> hospital with a potassium level of 2.4. This was several years ago

> before I was diagnosed. It took several years of looking and asking

> and going to many Dr's to find out what the issue was.

>

> ~Dave Kiedrowski

>

>

> > > > > > >>

> > > > > > >> > I am new to this group, and I am grateful that you are

> > > here.

> > > > > > >> >

> > > > > > >> > I was diagnosed with primary hyperaldosteronism on

> February

> > > > > 9 after

> > > > > > >> > about six trips to the emergency room with heart

> attack-

> > > like

> > > > > > >> > symptoms (sharp pain in the chest, irregular heart

> beat,

> > > > > high BP,

> > > > > > >> > nausea, tingling in the hands). This happened over

> about 18

> > > > > months

> > > > > > >> > time during the highest period of stress of my

> lifetime.

> > > > > They never

> > > > > > >> > found anything except low potassium and high BP.

> After the

> > > > > first

> > > > > > >> > trip, they sent me to a cardiologist who put me on BP

> > > meds that

> > > > > > >> > depleted potassium and gave me xanax for what he

> diagnosed

> > > > > as panic

> > > > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > > > primary care

> > > > > > >> > physician who sent me to a nephrologist who diagnosed

> > > primary

> > > > > > >> > aldosteronism. My aldosterone was 46.8 and my renin

> 0.57

> > > > > (upright).

> > > > > > >> > Then I was sent to an endo who did a CT scan and found

> > > > > nodules on

> > > > > > >> > both adrenals. Since the first of December I have

> been on

> > > 40

> > > > > meq K

> > > > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> > > myself, and

> > > > > > >> > sometime I feel pretty bad.

> > > > > > >> >

> > > > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

> > > my K to

> > > > > > >> > 10meq and continue the 25 mg amlodipine. To tell the

> truth,

> > > > > I am

> > > > > > >> > pretty nervous about stopping the K.

> > > > > > >> >

> > > > > > >> > I have always been healthy before this--even had LOW

> BP for

> > > > > many

> > > > > > >> > years and no primary care doctor. Now, sometimes I feel

> > > like

> > > > > I have

> > > > > > >> > lost my life. The hardest part is the exhaustion and

> not

> > > > > being able

> > > > > > >> > to do what I need to do and want to do. Also, the

> feeling

> > > > > that my

> > > > > > >> > body is out of control is pretty scary.

> > > > > > >> >

> > > > > > >> > Thanks for listening.

> > > > > > >> >

> > > > > > >> > Callie

> > > > > > >> >

> > > > > > >> >

> > > > > > >> >

> > > > > > >>

> > > > > > >>

[Guest guest]

If you look at JNC 7 all the way back to one low K and Htn makes it

Mandatory to rule out (R/O) PA

WHAT were u told was the problem?

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 23, 2009, at 4:50 PM, bigdogdkiedrow <bigdogdkiedrow@...>

wrote:

> I was on HCT and 40meq of KDUR 3x's daily and ended up in the

> hospital with a potassium level of 2.4. This was several years ago

> before I was diagnosed. It took several years of looking and asking

> and going to many Dr's to find out what the issue was.

>

> ~Dave Kiedrowski

>

>

> > > > > > >>

> > > > > > >> > I am new to this group, and I am grateful that you are

> > > here.

> > > > > > >> >

> > > > > > >> > I was diagnosed with primary hyperaldosteronism on

> February

> > > > > 9 after

> > > > > > >> > about six trips to the emergency room with heart

> attack-

> > > like

> > > > > > >> > symptoms (sharp pain in the chest, irregular heart

> beat,

> > > > > high BP,

> > > > > > >> > nausea, tingling in the hands). This happened over

> about 18

> > > > > months

> > > > > > >> > time during the highest period of stress of my

> lifetime.

> > > > > They never

> > > > > > >> > found anything except low potassium and high BP.

> After the

> > > > > first

> > > > > > >> > trip, they sent me to a cardiologist who put me on BP

> > > meds that

> > > > > > >> > depleted potassium and gave me xanax for what he

> diagnosed

> > > > > as panic

> > > > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > > > primary care

> > > > > > >> > physician who sent me to a nephrologist who diagnosed

> > > primary

> > > > > > >> > aldosteronism. My aldosterone was 46.8 and my renin

> 0.57

> > > > > (upright).

> > > > > > >> > Then I was sent to an endo who did a CT scan and found

> > > > > nodules on

> > > > > > >> > both adrenals. Since the first of December I have

> been on

> > > 40

> > > > > meq K

> > > > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> > > myself, and

> > > > > > >> > sometime I feel pretty bad.

> > > > > > >> >

> > > > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

> > > my K to

> > > > > > >> > 10meq and continue the 25 mg amlodipine. To tell the

> truth,

> > > > > I am

> > > > > > >> > pretty nervous about stopping the K.

> > > > > > >> >

> > > > > > >> > I have always been healthy before this--even had LOW

> BP for

> > > > > many

> > > > > > >> > years and no primary care doctor. Now, sometimes I feel

> > > like

> > > > > I have

> > > > > > >> > lost my life. The hardest part is the exhaustion and

> not

> > > > > being able

> > > > > > >> > to do what I need to do and want to do. Also, the

> feeling

> > > > > that my

> > > > > > >> > body is out of control is pretty scary.

> > > > > > >> >

> > > > > > >> > Thanks for listening.

> > > > > > >> >

> > > > > > >> > Callie

> > > > > > >> >

> > > > > > >> >

> > > > > > >> >

> > > > > > >>

> > > > > > >>

[Guest guest]

To All:

I didn't mean by suggesting posters to start an entire argument about side

effects of medications. I was only using those as examples to say we need to

make things simple to read and in view of the doctors and patients.(kind of

like CPR signs are posted everywhere)

Dr. Grim mentions every doctor knows that high bp and low K should make one

consider PA, but 3 years ago when I ended up in 3 hospitals in 10 days, not

one doctor in any of the hospitals suspected PA, this is after the several

doctors I was already seeing had no clue. The first hospital ER staff

totally ignored my low K.

One doctor at the 2nd hospital noted the low K but said he was sure the lab

had made a mistake because if the numbers were correct, I should have been

dead and thus assumed as a result that since I was alive with a bp of near

300/150, that K must have been normal and was not interested in repeating

the blood test!

The 3rd hospital, Stanford noted my high bp and low k and gave me potassium

pills and called their BP specialist who ended up being a doctor with no

clue.

Does this mean I should visit all these hospitals and hand them each a copy

of your papers? First I will not even be able to get to see any of the

doctors without going through their staff who will not care less. Do you

think any of them is going to admit they are clueless and actually read the

papers handed to them by a patient?

Also if you feel that we should not promote a medication full of side

effects; do you have an alternative? As far as I know Spiro and Inspra are

the only two medications that work in PA plus DASHING. If there is an

alternative, I'd love to know about it. Inspra doesn';t work for everyone

either. When my doctor gave me Inspra, I was experiencing severe headaches

and back aches and my bp was climbing. I am sure many have nightmare stories

about spiro as well but it works for many as well.

In the past three years, I have tried to contact every alternative

practicing physician and none so far have had an answer. I contacted Dr.

Chopra's center hoping he would have an answer since he is an

endocrinologist, and was told they never dealt with any patient with PA but

I could try yoga and it may help(by the way I teach yoga as a hobby, lol)

I have also contacted Dr. Weil who said this condition needs to be

addressed with conventional medication, surgery, etc., no alternatives.

have also seen an acupunturist who is a professor of neurology and became

an acupuncturist. He has also said this is a rare condition and regardless

its important to take the medication

I am always greatful for Dr Grim for providing this group and for educating

us through his own expertese.

Thank you Dr. Grim.

Best of health,

Farah

On Mon, Mar 23, 2009 at 3:22 PM, Clarence Grim <lowerbp2@...> wrote:

> Every Dr knows that high BP and low K should make one consider PA. But

> they have been taught it is very rare so they should not think they

> will see more than one in a lifetime.

>

> By far the most common reason for low K due to a diuretic

>

> Tiped sad Send form mi

> iPhone ;-)

>

> May your pressure be low!

>

> CE Grim MD

> Specializing in Difficult

> Hypertension

>

> On Mar 23, 2009, at 1:18 PM, marysue hopper

> <marysuehopper@... <marysuehopper%40.co.nz>> wrote:

>

> > Farah

> >

> > I don't like the idea of promoting a drug that has such adverse side

> > effects. Surely the doctors working on this problem have other

> > avenues with fewer dangerous side effects. Advertising a drug like

> > spiro isn't the right way to go about it - albeit your idea is

> > fantastic for helping patients gain knowledge and giving them tools

> > to ask questions.

> >

> > Here's what medsafe says about our supposed " wonder drug "

> > http://www.medsafe.govt.nz/Profs/Datasheet/s/Spirotonetab.htm

> >

> > Adverse Effects

> >

> > Gynaecomastia may develop in association with the use of

> > spironolactone, and physicians should be alert to its possible

> > onset. The development of gynaecomastia appears to be related to

> > both dosage level duration of therapy and is normally reversible

> > when spironolactone is discontinued. In rare instances some breast

> > enlargement may persist.

> > Other adverse reactions that have been reported in association with

> > spironolactone are: gastrointestinal symptoms including cramping and

> > diarrhoea, drowsiness, lethargy, headache, maculopapular or

> > erythematous cutaneous eruptions, urticaria, mental confusion, drug

> > fever, ataxia, impotence, irregular menses or amenorrhoea, and post-

> > menopausal bleeding. A few cases of agranulocytosis have been

> > reported in patients taking spironolactone.

> > Adverse reactions are usually reversible upon discontinuation of the

> > drug.

> > Interactions

> > The administration of potassium supplements, a diet rich in

> > potassium, including salt substitutes, or of other potassium sparing

> > agents is not recommended as it may induce hyperkalaemia.

> > Severe hyperkalaemia has been reported in patients co-administered

> > potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

> > Spironolactone reduces the vascular responsiveness to noradrenaline.

> > Therefore caution should be exercised in the management of patient

> > subjected to regional or general anaesthesia while they are being

> > treated with spironolactone.

> > Aspirin attenuates the diuretic effect of spironolactone by blocking

> > the secretion of canrenone in the renal tubule. Indomethacin and

> > mefenamic acid have been shown to inhibit the excretion of canrenone.

> > As carbenoxolone may cause sodium retention and thus decrease the

> > effectiveness of spironolactone, concurrent use of the two agents

> > should be avoided.

> > Spironolactone enhances the metabolism of antipyrine.

> > Spironolactone has been shown to increase the half-life of digoxin.

> > This may result in increased serum digoxin levels and subsequent

> > digitalis toxicity. It may be necessary to reduce the maintenance

> > and digitalization doses when spironolactone is administered and the

> > patient should be carefully monitored to avoid over-or under-

> > digitalization. Several reports of possible interference with

> > digoxin radioimmunoassays by spironolactone, or its metabolites has

> > appeared in the literature. Neither the extent nor the potential

> > clinical significance of its interference (which may be assay-

> > specific) has been fully established.

> > Overdosage

> > Although true toxic effects have not been reported, overdosage may

> > be manifested by nausea and vomiting and (more rarely) by

> > drowsiness, mental confusion, maculopapular or erythematous rash or

> > diarrhoea. Electrolyte imbalances and dehydration may occur.

> > Hyperkalaemia may be produced; symptoms include paraesthesia,

> > weakness, flaccid paralysis and tetany. The earliest signs are

> > characteristic electrocardiographic abnormalities including tall

> > " tent shaped " T waves, decreased amplitude of the P waves and

> > widening of the QRS complex. Spironolactone should be discontinued

> > and potassium intake (including dietary potassium) restricted.

> > Symptomatic and supportive measure should be employed. Induce

> > vomiting or evacuate the stomach by lavage. There is no specific

> > antidote. Treat fluid depletion, electrolyte imbalances, and

> > hypotension by established procedures.

> > Hyperkalaemia can be treated promptly by the rapid intravenous

> > administration of glucose (20 to 50 percent) and regular insulin,

> > using 0.25 to 0.5 units of insulin per gram of glucose. This is a

> > temporary measure to be repeated as required. Potassium excreting

> > diuretics and ion exchange resins may also be administered,

> > repeating as required.

> >

> > Sue

> >

> > ________________________________

> > From: Farah Rahbar <farahbar@... <farahbar%40gmail.com>>

> > hyperaldosteronism <hyperaldosteronism%40>

> > Sent: Monday, 23 March, 2009 5:45:42 PM

> > Subject: Re: Re: My Experience and Starting

> > Spiro Today

> >

> > I have an idea. I think instead of series of questions and answers

> > that we

> > wished the doctors had asked them, we make a campaign by making

> > posters in

> > large print, that we can send to various primary care offices as

> > well as the

> > ERs. The posters will simply say in big letters that will be hard to

> > avoid

> > and very easy to understand:

> >

> > Low potassium + High blood pressure = Possible Hyperaldasteronism

> >

> > High aldosterone + Low renin = Possible Hyperaldasteronism

> >

> > Blood Pressure Medications dont work? Try Spironolactone

> >

> > It will be easy and simple. My experience is that anything more than

> > simple

> > one or two sentences will be hard to read. Specially doctors will

> > not have

> > the time to read unless they are involved in some kind of research.

> >

> > We may be able to get the American Hypertension or the American Heart

> > Association to fund it for us.

> >

> > Farah

> >

> > On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

> > wrote:

> >

> > > Good Callie is collecting names of those who want to help and their

> > > background skills so we can make assignments and share. a has

> > > developed a sample questionnaire and we are looking for a list of

> > > questions folks wished their Drs had asked them.

> > >

> > >

> > > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> > >

> > > > Dr. Grim,

> > > >

> > > > Using the info gathered here to produce a published paper is a

> > > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> > and

> > > > symptoms lists in one collaborative space. GoogleDocs is another

> > > > good collaborative space for this type of project. I would like to

> > > > help in some capacity (writer, editor, etc.). Please advise.

> > > >

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

> > > >

> > > >

> > > > > >>

> > > > > >> > I am new to this group, and I am grateful that you are

> > here.

> > > > > >> >

> > > > > >> > I was diagnosed with primary hyperaldosteronism on February

> > > > 9 after

> > > > > >> > about six trips to the emergency room with heart attack-

> > like

> > > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > > high BP,

> > > > > >> > nausea, tingling in the hands). This happened over about 18

> > > > months

> > > > > >> > time during the highest period of stress of my lifetime.

> > > > They never

> > > > > >> > found anything except low potassium and high BP. After the

> > > > first

> > > > > >> > trip, they sent me to a cardiologist who put me on BP

> > meds that

> > > > > >> > depleted potassium and gave me xanax for what he diagnosed

> > > > as panic

> > > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > > primary care

> > > > > >> > physician who sent me to a nephrologist who diagnosed

> > primary

> > > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > > (upright).

> > > > > >> > Then I was sent to an endo who did a CT scan and found

> > > > nodules on

> > > > > >> > both adrenals. Since the first of December I have been on

> > 40

> > > > meq K

> > > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> > myself, and

> > > > > >> > sometime I feel pretty bad.

> > > > > >> >

> > > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

> > my K to

> > > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

> > > > I am

> > > > > >> > pretty nervous about stopping the K.

> > > > > >> >

> > > > > >> > I have always been healthy before this--even had LOW BP for

> > > > many

> > > > > >> > years and no primary care doctor. Now, sometimes I feel

> > like

> > > > I have

> > > > > >> > lost my life. The hardest part is the exhaustion and not

> > > > being able

> > > > > >> > to do what I need to do and want to do. Also, the feeling

> > > > that my

> > > > > >> > body is out of control is pretty scary.

> > > > > >> >

> > > > > >> > Thanks for listening.

> > > > > >> >

> > > > > >> > Callie

> > > > > >> >

> > > > > >> >

> > > > > >> >

> > > > > >>

> > > > > >>

[Guest guest]

What a dramatic story Farah. You might want to do something in the New Yorker

with your story for example. What we may need is to have someone to write/do a

show (Scrubs, ER, House, 60 minutes, etc) or Ophra (with several women who are

on our site as the focus but men have good stories too) that really gets the

word out there.

You note that many people would be dead with the Ks you had and it is likely

that many have died due to this problem but lack of an autopsy missed the Dx.

A major law suit would also be one way to get their attention but would most

likely be settled out of court and then there is no increase in public

awareness.

I and others have been trying to teach this for 40 years but it is clear the

message is not out there.

Clarence E. Grim, BS, MS, MD

On Tuesday, March 24, 2009, at 02:29AM, " Farah Rahbar " <farahbar@...>

wrote:

>To All:

>I didn't mean by suggesting posters to start an entire argument about side

>effects of medications. I was only using those as examples to say we need to

>make things simple to read and in view of the doctors and patients.(kind of

>like CPR signs are posted everywhere)

>Dr. Grim mentions every doctor knows that high bp and low K should make one

>consider PA, but 3 years ago when I ended up in 3 hospitals in 10 days, not

>one doctor in any of the hospitals suspected PA, this is after the several

>doctors I was already seeing had no clue. The first hospital ER staff

>totally ignored my low K.

>One doctor at the 2nd hospital noted the low K but said he was sure the lab

>had made a mistake because if the numbers were correct, I should have been

>dead and thus assumed as a result that since I was alive with a bp of near

>300/150, that K must have been normal and was not interested in repeating

>the blood test!

>The 3rd hospital, Stanford noted my high bp and low k and gave me potassium

>pills and called their BP specialist who ended up being a doctor with no

>clue.

>Does this mean I should visit all these hospitals and hand them each a copy

>of your papers? First I will not even be able to get to see any of the

>doctors without going through their staff who will not care less. Do you

>think any of them is going to admit they are clueless and actually read the

>papers handed to them by a patient?

>

>Also if you feel that we should not promote a medication full of side

>effects; do you have an alternative? As far as I know Spiro and Inspra are

>the only two medications that work in PA plus DASHING. If there is an

>alternative, I'd love to know about it. Inspra doesn';t work for everyone

>either. When my doctor gave me Inspra, I was experiencing severe headaches

>and back aches and my bp was climbing. I am sure many have nightmare stories

>about spiro as well but it works for many as well.

>

>In the past three years, I have tried to contact every alternative

>practicing physician and none so far have had an answer. I contacted Dr.

>Chopra's center hoping he would have an answer since he is an

>endocrinologist, and was told they never dealt with any patient with PA but

>I could try yoga and it may help(by the way I teach yoga as a hobby, lol)

>I have also contacted Dr. Weil who said this condition needs to be

>addressed with conventional medication, surgery, etc., no alternatives.

> have also seen an acupunturist who is a professor of neurology and became

>an acupuncturist. He has also said this is a rare condition and regardless

>its important to take the medication

>

>I am always greatful for Dr Grim for providing this group and for educating

>us through his own expertese.

>

>Thank you Dr. Grim.

>

>Best of health,

>Farah

>

>On Mon, Mar 23, 2009 at 3:22 PM, Clarence Grim <lowerbp2@...> wrote:

>

>> Every Dr knows that high BP and low K should make one consider PA. But

>> they have been taught it is very rare so they should not think they

>> will see more than one in a lifetime.

>>

>> By far the most common reason for low K due to a diuretic

>>

>> Tiped sad Send form mi

>> iPhone ;-)

>>

>> May your pressure be low!

>>

>> CE Grim MD

>> Specializing in Difficult

>> Hypertension

>>

>> On Mar 23, 2009, at 1:18 PM, marysue hopper

>> <marysuehopper@... <marysuehopper%40.co.nz>> wrote:

>>

>> > Farah

>> >

>> > I don't like the idea of promoting a drug that has such adverse side

>> > effects. Surely the doctors working on this problem have other

>> > avenues with fewer dangerous side effects. Advertising a drug like

>> > spiro isn't the right way to go about it - albeit your idea is

>> > fantastic for helping patients gain knowledge and giving them tools

>> > to ask questions.

>> >

>> > Here's what medsafe says about our supposed " wonder drug "

>> > http://www.medsafe.govt.nz/Profs/Datasheet/s/Spirotonetab.htm

>> >

>> > Adverse Effects

>> >

>> > Gynaecomastia may develop in association with the use of

>> > spironolactone, and physicians should be alert to its possible

>> > onset. The development of gynaecomastia appears to be related to

>> > both dosage level duration of therapy and is normally reversible

>> > when spironolactone is discontinued. In rare instances some breast

>> > enlargement may persist.

>> > Other adverse reactions that have been reported in association with

>> > spironolactone are: gastrointestinal symptoms including cramping and

>> > diarrhoea, drowsiness, lethargy, headache, maculopapular or

>> > erythematous cutaneous eruptions, urticaria, mental confusion, drug

>> > fever, ataxia, impotence, irregular menses or amenorrhoea, and post-

>> > menopausal bleeding. A few cases of agranulocytosis have been

>> > reported in patients taking spironolactone.

>> > Adverse reactions are usually reversible upon discontinuation of the

>> > drug.

>> > Interactions

>> > The administration of potassium supplements, a diet rich in

>> > potassium, including salt substitutes, or of other potassium sparing

>> > agents is not recommended as it may induce hyperkalaemia.

>> > Severe hyperkalaemia has been reported in patients co-administered

>> > potassium-sparing diuretics, including SPIROTONE, and ACE inhibitors.

>> > Spironolactone reduces the vascular responsiveness to noradrenaline.

>> > Therefore caution should be exercised in the management of patient

>> > subjected to regional or general anaesthesia while they are being

>> > treated with spironolactone.

>> > Aspirin attenuates the diuretic effect of spironolactone by blocking

>> > the secretion of canrenone in the renal tubule. Indomethacin and

>> > mefenamic acid have been shown to inhibit the excretion of canrenone.

>> > As carbenoxolone may cause sodium retention and thus decrease the

>> > effectiveness of spironolactone, concurrent use of the two agents

>> > should be avoided.

>> > Spironolactone enhances the metabolism of antipyrine.

>> > Spironolactone has been shown to increase the half-life of digoxin.

>> > This may result in increased serum digoxin levels and subsequent

>> > digitalis toxicity. It may be necessary to reduce the maintenance

>> > and digitalization doses when spironolactone is administered and the

>> > patient should be carefully monitored to avoid over-or under-

>> > digitalization. Several reports of possible interference with

>> > digoxin radioimmunoassays by spironolactone, or its metabolites has

>> > appeared in the literature. Neither the extent nor the potential

>> > clinical significance of its interference (which may be assay-

>> > specific) has been fully established.

>> > Overdosage

>> > Although true toxic effects have not been reported, overdosage may

>> > be manifested by nausea and vomiting and (more rarely) by

>> > drowsiness, mental confusion, maculopapular or erythematous rash or

>> > diarrhoea. Electrolyte imbalances and dehydration may occur.

>> > Hyperkalaemia may be produced; symptoms include paraesthesia,

>> > weakness, flaccid paralysis and tetany. The earliest signs are

>> > characteristic electrocardiographic abnormalities including tall

>> > " tent shaped " T waves, decreased amplitude of the P waves and

>> > widening of the QRS complex. Spironolactone should be discontinued

>> > and potassium intake (including dietary potassium) restricted.

>> > Symptomatic and supportive measure should be employed. Induce

>> > vomiting or evacuate the stomach by lavage. There is no specific

>> > antidote. Treat fluid depletion, electrolyte imbalances, and

>> > hypotension by established procedures.

>> > Hyperkalaemia can be treated promptly by the rapid intravenous

>> > administration of glucose (20 to 50 percent) and regular insulin,

>> > using 0.25 to 0.5 units of insulin per gram of glucose. This is a

>> > temporary measure to be repeated as required. Potassium excreting

>> > diuretics and ion exchange resins may also be administered,

>> > repeating as required.

>> >

>> > Sue

>> >

>> > ________________________________

>> > From: Farah Rahbar <farahbar@... <farahbar%40gmail.com>>

>> > To:

hyperaldosteronism <hyperaldosteronism%40>

>> > Sent: Monday, 23 March, 2009 5:45:42 PM

>> > Subject: Re: Re: My Experience and Starting

>> > Spiro Today

>> >

>> > I have an idea. I think instead of series of questions and answers

>> > that we

>> > wished the doctors had asked them, we make a campaign by making

>> > posters in

>> > large print, that we can send to various primary care offices as

>> > well as the

>> > ERs. The posters will simply say in big letters that will be hard to

>> > avoid

>> > and very easy to understand:

>> >

>> > Low potassium + High blood pressure = Possible Hyperaldasteronism

>> >

>> > High aldosterone + Low renin = Possible Hyperaldasteronism

>> >

>> > Blood Pressure Medications dont work? Try Spironolactone

>> >

>> > It will be easy and simple. My experience is that anything more than

>> > simple

>> > one or two sentences will be hard to read. Specially doctors will

>> > not have

>> > the time to read unless they are involved in some kind of research.

>> >

>> > We may be able to get the American Hypertension or the American Heart

>> > Association to fund it for us.

>> >

>> > Farah

>> >

>> > On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

>> > wrote:

>> >

>> > > Good Callie is collecting names of those who want to help and their

>> > > background skills so we can make assignments and share. a has

>> > > developed a sample questionnaire and we are looking for a list of

>> > > questions folks wished their Drs had asked them.

>> > >

>> > >

>> > > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

>> > >

>> > > > Dr. Grim,

>> > > >

>> > > > Using the info gathered here to produce a published paper is a

>> > > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

>> > and

>> > > > symptoms lists in one collaborative space. GoogleDocs is another

>> > > > good collaborative space for this type of project. I would like to

>> > > > help in some capacity (writer, editor, etc.). Please advise.

>> > > >

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

>> > > >

>> > > >

>> > > > > >>

>> > > > > >> > I am new to this group, and I am grateful that you are

>> > here.

>> > > > > >> >

>> > > > > >> > I was diagnosed with primary hyperaldosteronism on February

>> > > > 9 after

>> > > > > >> > about six trips to the emergency room with heart attack-

>> > like

>> > > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

>> > > > high BP,

>> > > > > >> > nausea, tingling in the hands). This happened over about 18

>> > > > months

>> > > > > >> > time during the highest period of stress of my lifetime.

>> > > > They never

>> > > > > >> > found anything except low potassium and high BP. After the

>> > > > first

>> > > > > >> > trip, they sent me to a cardiologist who put me on BP

>> > meds that

>> > > > > >> > depleted potassium and gave me xanax for what he diagnosed

>> > > > as panic

>> > > > > >> > attacks. The episodes just got worse. Finally, I got a

>> > > > primary care

>> > > > > >> > physician who sent me to a nephrologist who diagnosed

>> > primary

>> > > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

>> > > > (upright).

>> > > > > >> > Then I was sent to an endo who did a CT scan and found

>> > > > nodules on

>> > > > > >> > both adrenals. Since the first of December I have been on

>> > 40

>> > > > meq K

>> > > > > >> > and 25 mg amlodipine for BP. Some time I feel like

>> > myself, and

>> > > > > >> > sometime I feel pretty bad.

>> > > > > >> >

>> > > > > >> > Today I am supposed to begin taking 25 mg spiro, reduce

>> > my K to

>> > > > > >> > 10meq and continue the 25 mg amlodipine. To tell the truth,

>> > > > I am

>> > > > > >> > pretty nervous about stopping the K.

>> > > > > >> >

>> > > > > >> > I have always been healthy before this--even had LOW BP for

>> > > > many

>> > > > > >> > years and no primary care doctor. Now, sometimes I feel

>> > like

>> > > > I have

>> > > > > >> > lost my life. The hardest part is the exhaustion and not

>> > > > being able

>> > > > > >> > to do what I need to do and want to do. Also, the feeling

>> > > > that my

>> > > > > >> > body is out of control is pretty scary.

>> > > > > >> >

>> > > > > >> > Thanks for listening.

>> > > > > >> >

>> > > > > >> > Callie

>> > > > > >> >

>> > > > > >> >

>> > > > > >> >

>> > > > > >>

>> > > > > >>

[Guest guest]

What you want to try to find is what % of pts have these side effects

compared to those who were on placebo.

Not many long term trials with either sprio or eplerenonee except in

CHF.

On Mar 23, 2009, at 3:51 PM, a Hall wrote:

>

> Look at the side effects of any drug and they will scare to death.

> Inspra certainly has its own share. Personally, Inspra gave me a

> raging headache and I have no problems with spiro. I believe one

> member here has been on spiro 30+ years. Spiro and Inspra are the

> only two choices we PA patients currently have, so pick whatever

> works for you. The benefit of having controlled blood pressure and

> not having to worry about stroke, kidney damage requiring dialysis

> and cardiac complications far outweight the risks of either

> medicine for me. - a

>

> " Gynecomastia and abnormal vaginal bleeding were reported with

> INSPRA but not with placebo. The rates of these sex hormone related

> adverse events are shown in Table 5. The rates increased slightly

> with increasing duration of therapy. In females, abnormal vaginal

> bleeding was also reported in 0.8% of patients on antihypertensive

> medications (other than spironolactone) in active control arms of

> the studies with INSPRA. The most common reasons for

> discontinuation of INSPRA were headache, dizziness, angina pectoris/

> myocardial infarction, and increased GGT. Liver Function Tests-

> Serum alanine aminotransferase (ALT) and gamma glutamyl

> transpeptidase (GGT) increased in a dose-related manner. Mean

> increases ranged from 0.8 U/L at 50 mg daily to 4.8 U/L at 400 mg

> daily for ALT and 3.1 U/L at 50 mg daily to 11.3 U/L at 400 mg

> daily for GGT. Increases in ALT levels greater than 120 U/L (3

> times upper limit of normal) were reported for 15/2259 patients

> administered

> INSPRA and 1/351 placebo-treated patients. Increases in ALT levels

> greater than 200 U/L (5 times upper limit of normal) were reported

> for 5/2259 of patients administered INSPRA and 1/351 placebo-

> treated patients. Increases of ALT greater than 120 U/L and

> bilirubin greater than 1.2 mg/dL were reported 1/2259 patients

> administered INSPRA and 0/351 placebo-treated patients. Hepatic

> failure was not reported in patients receiving INSPRA.

>

> BUN/Creatinine- Serum creatinine increased in a dose-related

> manner. Mean increases ranged from 0.01 mg/dL at 50 mg daily to

> 0.03 mg/dL at 400 mg daily. Increases in blood urea nitrogen to

> greater than 30 mg/dL and serum creatinine to greater than 2 mg/dL

> were reported for 0.5% and 0.2%, respectively, of patients

> administered INSPRA and 0% of placebo-treated patients.

>

> Uric Acid- Increases in uric acid to greater than 9 mg/dL were

> reported in 0.3% of patients administered INSPRA and 0% of placebo-

> treated patients.

>

> Triglycerides: Serum triglycerides increased in a dose-related

> manner. Mean increases ranged from 7.1 mg/dL at 50 mg daily to 26.6

> mg/dL at 400 mg daily. Increases in triglycerides (above 252 mg/dL)

> were

> reported for 15% of patients administered INSPRA and 12% of

> placebotreated

> patients.

> Cholesterol: Serum cholesterol increased in a dose-related manner.

> Mean changes ranged from a decrease of 0.4 mg/dL at 50 mg daily to an

> increase of 11.6 mg/dL at 400 mg daily. Increases in serum cholesterol

> values greater than 200 mg/dL were reported for 0.3% of patients

> administered INSPRA and 0% of placebo-treated patients.

> Liver Function Tests: Serum alanine aminotransferase (ALT) and

> gamma glutamyl transpeptidase (GGT) increased in a dose-related

> manner.

> Mean increases ranged from 0.8 U/L at 50 mg daily to 4.8 U/L at 400 mg

> daily for ALT and 3.1 U/L at 50 mg daily to 11.3 U/L at 400 mg

> daily for

> GGT. Increases in ALT levels greater than 120 U/L (3 times upper

> limit of

> normal) were reported for 15/2259 patients administered INSPRA and

> 1/351 placebo-treated patients. Increases in ALT levels greater

> than 200

> U/L (5 times upper limit of normal) were reported for 5/2259 of

> patients

> administered INSPRA and 1/351 placebo-treated patients. Increases of

> ALT greater than 120 U/L and bilirubin greater than 1.2 mg/dL were

> reported 1/2259 patients administered INSPRA and 0/351 placebo-treated

> patients. Hepatic failure was not reported in patients receiving

> INSPRA.

> Uric Acid: Increases in uric acid to greater than 9 mg/dL were

> reported in 0.3% of patients administered INSPRA and 0% of

> placebotreated

> patients.

> The following adverse reactions have been identified during

> postapproval use of INSPRA. Because these reactions are reported

> voluntarily from a population of uncertain size, it is not always

> possible to reliably estimate their frequency or establish a causal

> relationship to drug exposure. Skin: angioneurotic edema, rash "

>

> bingo ... i could not agree with your more ..... my doc #1 ruled out

> spiro precisely because of this and ordered Inspra instead. My

> Medicare

> Part D plan covers it as does NY Medicaid. And Inspra reportedly goes

> generic soon.

> as

> ============ ========= ========= ========= ========= =========

> ========= ======

> ============ =========

> On Mar 23, 2009, at 2:18 PM, marysue hopper wrote:

>

> > Farah

> >

> > I don't like the idea of promoting a drug that has such adverse side

> > effects. Surely the doctors working on this problem have other

> > avenues with fewer dangerous side effects. Advertising a drug like

> > spiro isn't the right way to go about it - albeit your idea is

> > fantastic for helping patients gain knowledge and giving them

> tools to

> > ask questions.

> >

> > Here's what medsafe says about our supposed " wonder drug "

> > http://www.medsafe. govt.nz/Profs/ Datasheet/ s/Spirotonetab. htm

> >

> > Adverse Effects

> >

> > Gynaecomastia may develop in association with the use of

> > spironolactone, and physicians should be alert to its possible

> onset.

> > The development of gynaecomastia appears to be related to both

> dosage

> > level duration of therapy and is normally reversible when

> > spironolactone is discontinued. In rare instances some breast

> > enlargement may persist.

> > Other adverse reactions that have been reported in association with

> > spironolactone are: gastrointestinal symptoms including cramping and

> > diarrhoea, drowsiness, lethargy, headache, maculopapular or

> > erythematous cutaneous eruptions, urticaria, mental confusion, drug

> > fever, ataxia, impotence, irregular menses or amenorrhoea, and

> > post-menopausal bleeding. A few cases of agranulocytosis have been

> > reported in patients taking spironolactone.

> > Adverse reactions are usually reversible upon discontinuation of the

> > drug.

> > Interactions

> > The administration of potassium supplements, a diet rich in

> > potassium, including salt substitutes, or of other potassium sparing

> > agents is not recommended as it may induce hyperkalaemia.

> > Severe hyperkalaemia has been reported in patients co-administered

> > potassium-sparing diuretics, including SPIROTONE, and ACE

> inhibitors.

> > Spironolactone reduces the vascular responsiveness to noradrenaline.

> > Therefore caution should be exercised in the management of patient

> > subjected to regional or general anaesthesia while they are being

> > treated with spironolactone.

> > Aspirin attenuates the diuretic effect of spironolactone by blocking

> > the secretion of canrenone in the renal tubule. Indomethacin and

> > mefenamic acid have been shown to inhibit the excretion of

> canrenone.

> > As carbenoxolone may cause sodium retention and thus decrease the

> > effectiveness of spironolactone, concurrent use of the two agents

> > should be avoided.

> > Spironolactone enhances the metabolism of antipyrine.

> > Spironolactone has been shown to increase the half-life of digoxin.

> > This may result in increased serum digoxin levels and subsequent

> > digitalis toxicity. It may be necessary to reduce the maintenance

> and

> > digitalization doses when spironolactone is administered and the

> > patient should be carefully monitored to avoid over-or

> > under-digitalizatio n. Several reports of possible interference with

> > digoxin radioimmunoassays by spironolactone, or its metabolites has

> > appeared in the literature. Neither the extent nor the potential

> > clinical significance of its interference (which may be

> > assay-specific) has been fully established.

> > Overdosage

> > Although true toxic effects have not been reported, overdosage

> may be

> > manifested by nausea and vomiting and (more rarely) by drowsiness,

> > mental confusion, maculopapular or erythematous rash or diarrhoea.

> > Electrolyte imbalances and dehydration may occur. Hyperkalaemia

> may be

> > produced; symptoms include paraesthesia, weakness, flaccid paralysis

> > and tetany. The earliest signs are characteristic

> electrocardiographi c

> > abnormalities including tall " tent shaped " T waves, decreased

> > amplitude of the P waves and widening of the QRS complex.

> > Spironolactone should be discontinued and potassium intake

> (including

> > dietary potassium) restricted.

> > Symptomatic and supportive measure should be employed. Induce

> > vomiting or evacuate the stomach by lavage. There is no specific

> > antidote. Treat fluid depletion, electrolyte imbalances, and

> > hypotension by established procedures.

> > Hyperkalaemia can be treated promptly by the rapid intravenous

> > administration of glucose (20 to 50 percent) and regular insulin,

> > using 0.25 to 0.5 units of insulin per gram of glucose. This is a

> > temporary measure to be repeated as required. Potassium excreting

> > diuretics and ion exchange resins may also be administered,

> repeating

> > as required.

> >

> > Sue

> >

> > ____________ _________ _________ __

> > From: Farah Rahbar <farahbargmail (DOT) com>

> > hyperaldosteronism

> > Sent: Monday, 23 March, 2009 5:45:42 PM

> > Subject: Re: [hyperaldosteronism ] Re: My Experience and Starting

> > Spiro Today

> >

> > I have an idea. I think instead of series of questions and answers

> > that we

> > wished the doctors had asked them, we make a campaign by making

> > posters in

> > large print, that we can send to various primary care offices as

> well

> > as the

> > ERs. The posters will simply say in big letters that will be hard to

> > avoid

> > and very easy to understand:

> >

> > Low potassium + High blood pressure = Possible Hyperaldasteronism

> >

> > High aldosterone + Low renin = Possible Hyperaldasteronism

> >

> > Blood Pressure Medications dont work? Try Spironolactone

> >

> > It will be easy and simple. My experience is that anything more than

> > simple

> > one or two sentences will be hard to read. Specially doctors will

> not

> > have

> > the time to read unless they are involved in some kind of research.

> >

> > We may be able to get the American Hypertension or the American

> Heart

> > Association to fund it for us.

> >

> > Farah

> >

> > On Sun, Mar 22, 2009 at 2:32 PM, Clarence Grim <lowerbp2mac (DOT) com>

> > wrote:

> >

> > > Good Callie is collecting names of those who want to help and

> their

> > > background skills so we can make assignments and share. a has

> > > developed a sample questionnaire and we are looking for a list of

> > > questions folks wished their Drs had asked them.

> > >

> > >

> > > On Mar 20, 2009, at 11:51 PM, kappi98 wrote:

> > >

> > > > Dr. Grim,

> > > >

> > > > Using the info gathered here to produce a published paper is a

> > > > GREAT idea! We can use the Conn Syndrome wiki to gather stories

> > and

> > > > symptoms lists in one collaborative space. GoogleDocs is another

> > > > good collaborative space for this type of project. I would

> like to

> > > > help in some capacity (writer, editor, etc.). Please advise.

> > > >

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

> > > >

> > > >

> > > > > >>

> > > > > >> > I am new to this group, and I am grateful that you are

> > here.

> > > > > >> >

> > > > > >> > I was diagnosed with primary hyperaldosteronism on

> February

> > > > 9 after

> > > > > >> > about six trips to the emergency room with heart

> > attack-like

> > > > > >> > symptoms (sharp pain in the chest, irregular heart beat,

> > > > high BP,

> > > > > >> > nausea, tingling in the hands). This happened over

> about 18

> > > > months

> > > > > >> > time during the highest period of stress of my lifetime.

> > > > They never

> > > > > >> > found anything except low potassium and high BP. After

> the

> > > > first

> > > > > >> > trip, they sent me to a cardiologist who put me on BP

> meds

> > that

> > > > > >> > depleted potassium and gave me xanax for what he

> diagnosed

> > > > as panic

> > > > > >> > attacks. The episodes just got worse. Finally, I got a

> > > > primary care

> > > > > >> > physician who sent me to a nephrologist who diagnosed

> > primary

> > > > > >> > aldosteronism. My aldosterone was 46.8 and my renin 0.57

> > > > (upright).

> > > > > >> > Then I was sent to an endo who did a CT scan and found

> > > > nodules on

> > > > > >> > both adrenals. Since the first of December I have been on

> > 40

> > > > meq K

> > > > > >> > and 25 mg amlodipine for BP. Some time I feel like

> myself,

> > and

> > > > > >> > sometime I feel pretty bad.

> > > > > >> >

> > > > > >> > Today I am supposed to begin taking 25 mg spiro,

> reduce my

> > K to

> > > > > >> > 10meq and continue the 25 mg amlodipine. To tell the

> truth,

> > > > I am

> > > > > >> > pretty nervous about stopping the K.

> > > > > >> >

> > > > > >> > I have always been healthy before this--even had LOW

> BP for

> > > > many

> > > > > >> > years and no primary care doctor. Now, sometimes I feel

> > like

> > > > I have

> > > > > >> > lost my life. The hardest part is the exhaustion and not

> > > > being able

> > > > > >> > to do what I need to do and want to do. Also, the feeling

> > > > that my

> > > > > >> > body is out of control is pretty scary.

> > > > > >> >

> > > > > >> > Thanks for listening.

> > > > > >> >

> > > > > >> > Callie

> > > > > >> >

> > > > > >> >

> > > > > >> >

> > > > > >>

> > > > > >>