Re: Heard back from NIH RE: trial - they say it's secondary not primary...

[Guest guest]

Ned to know other drugs diet to interpret. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 2, 2012, at 21:24, <jclark24p@...> wrote:

I guess I'm confused, are you saying an adrenal adenoma can cause secondary hyperaldosteronism? It would seem to me with her renin being 2.+ it would rule out primary since if I understand it correctly ACE and ARB class meds would work.

D- You are not pregnant, are you?

.....

> > >

> > >

> > > From: danielle_cairns <danielle_cairns@>

> > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...

> > > hyperaldosteronism

> > > Date: Monday, May 28, 2012, 2:54 PM

> > >

> > >

> > >

> > > Â

> > >

> > >

> > >

> > > Hi,

> > >

> > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D

> > >

> >

> >

>

[Guest guest]

Or quite likely there's some missing peices to the puzzle that we haven't gotten all the facts on everything yet, like meds, etc, and something may be falsely, or causing an elevated renin. There may be a factor driving the renin up and the adenoma is still the cause of the PA given we have a confirmed adenoma. The odds that the adenoma is the cause of primary and that there's something raising the renin (meds, testing process, etc) is much higher than the odds of it being secondary PA and the existence of the adenoma is just a bystander. But it's medicine, anything goes sometimes.

From: <jclark24p@...>Subject: Re: Heard back from NIH RE: trial - they say it's secondary not primary...hyperaldosteronism Date: Saturday, June 2, 2012, 9:24 PM

I guess I'm confused, are you saying an adrenal adenoma can cause secondary hyperaldosteronism? It would seem to me with her renin being 2.+ it would rule out primary since if I understand it correctly ACE and ARB class meds would work. D- You are not pregnant, are you?.... > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > hyperaldosteronism > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > Â > > > > > > > > > > > > Hi,> > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for

secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > >> > > >>

[Guest guest]

If you read all the postings on this you wouldn't be quite as confused. One of

the reasons to not edit out important parts of a posting.

If you had read the meds she was on you would have seen that she is on birth

control pills so don't think she is pregnant. Good question though.

> > > >

> > > >

> > > > From: danielle_cairns <danielle_cairns@>

> > > > Subject: Heard back from NIH RE: trial - they say

it's secondary not primary...

> > > > hyperaldosteronism

> > > > Date: Monday, May 28, 2012, 2:54 PM

> > > >

> > > >

> > > >

> > > > Â

> > > >

> > > >

> > > >

> > > > Hi,

> > > >

> > > > So I have been corresponding with Dr. L at NIH about joining their trial

for primary hyperaldosteronism. They have reviewed my films and labs and came

back on Friday and said I am ineligible because they believe I have secondary

hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma

and high aldosterone, my renin is too high for it to be primary. I am so

confused. He said there is another trial they might like to enroll me in and

that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > >

> > >

> > >

> >

>

[Guest guest]

If you read all the postings on this you wouldn't be quite as confused. One of

the reasons to not edit out important parts of a posting.

If you had read the meds she was on you would have seen that she is on birth

control pills so don't think she is pregnant. Good question though.

> > > >

> > > >

> > > > From: danielle_cairns <danielle_cairns@>

> > > > Subject: Heard back from NIH RE: trial - they say

it's secondary not primary...

> > > > hyperaldosteronism

> > > > Date: Monday, May 28, 2012, 2:54 PM

> > > >

> > > >

> > > >

> > > > Â

> > > >

> > > >

> > > >

> > > > Hi,

> > > >

> > > > So I have been corresponding with Dr. L at NIH about joining their trial

for primary hyperaldosteronism. They have reviewed my films and labs and came

back on Friday and said I am ineligible because they believe I have secondary

hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma

and high aldosterone, my renin is too high for it to be primary. I am so

confused. He said there is another trial they might like to enroll me in and

that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > >

> > >

> > >

> >

>

[Guest guest]

I knew she is on birth control. I also know that sometimes birth control fails, someday maybe I'll introduce you to my 28 y/o daughter who is 11 and 14 years younger than her brothers! We almost named her "Bonus"! (And she really is a bonus! ) A good troubleshooter, which I did professionally for 30 years in computers, starts at the beginning and rules out the obvious. How many on this site probably wouldn't even be here if their doctor had figured out why their K+ was low instead of throwing a pill or Banana at them!

I'm not a doctor but if I was her, and I wasn't pregnant , I would be looking at liver and kidney function and there are a couple of specific diseases that should be checked, that's why I recommended "chapter 23". From it I quote (You did notice she said low BP, right):

Usually Normo- or Hypotensive

Reduced Circulating Blood Volume:

Gitelman's Syndrome

Bartter's Syndrome

Pseudohypoaldosteronism Type I

Diuretic Use (surreptitious or prescribed therapy)

Reduced 'Effective' Circulating Blood Volume:

Congestive Heart Failure

Hepatic cirrhosis

Nephrotic Syndrome

　

> > > > > > > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > > > hyperaldosteronism > > > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi,> > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > > > >> > > > > > > >> > >> >>

[Guest guest]

Know this is off the topic but you hit a nerve with the Banana reference. Used to eat at least three bananas daily of I was unable to make it through the day. Told my PCP that I felt like a monkey and he laughed. Came down with Afib from low K and he wanted me to go on Coumiden. Never looked into low K. From: <jclark24p@...> hyperaldosteronism Sent: Sunday, June 3, 2012 11:36 AM Subject: Re: Heard back from NIH RE: trial - they say it's secondary not primary...

I knew she is on birth control. I also know that sometimes birth control fails, someday maybe I'll introduce you to my 28 y/o daughter who is 11 and 14 years younger than her brothers! We almost named her "Bonus"! (And she really is a bonus! ) A good troubleshooter, which I did professionally for 30 years in computers, starts at the beginning and rules out the obvious. How many on this site probably wouldn't even be here if their doctor had figured out why their K+ was low instead of throwing a pill or Banana at them!

I'm not a doctor but if I was her, and I wasn't pregnant , I would be looking at liver and kidney function and there are a couple of specific diseases that should be checked, that's why I recommended "chapter 23". From it I quote (You did notice she said low BP, right):

Usually Normo- or Hypotensive

Reduced Circulating Blood Volume:

Gitelman's Syndrome

Bartter's Syndrome

Pseudohypoaldosteronism Type I

Diuretic Use (surreptitious or prescribed therapy)

Reduced 'Effective' Circulating Blood Volume:

Congestive Heart Failure

Hepatic cirrhosis

Nephrotic Syndrome

　

> > > > > > > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > > > hyperaldosteronism > > > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi,> > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > > > >> > > > > > > >> > >> >>

[Guest guest]

Secondary is driven by high PRA. Hers is not high ESP if on BCP. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 3, 2012, at 10:36, <jclark24p@...> wrote:

I knew she is on birth control. I also know that sometimes birth control fails, someday maybe I'll introduce you to my 28 y/o daughter who is 11 and 14 years younger than her brothers! We almost named her "Bonus"! (And she really is a bonus! ) A good troubleshooter, which I did professionally for 30 years in computers, starts at the beginning and rules out the obvious. How many on this site probably wouldn't even be here if their doctor had figured out why their K+ was low instead of throwing a pill or Banana at them!

I'm not a doctor but if I was her, and I wasn't pregnant , I would be looking at liver and kidney function and there are a couple of specific diseases that should be checked, that's why I recommended "chapter 23". From it I quote (You did notice she said low BP, right):

Usually Normo- or Hypotensive

Reduced Circulating Blood Volume:

Gitelman's Syndrome

Bartter's Syndrome

Pseudohypoaldosteronism Type I

Diuretic Use (surreptitious or prescribed therapy)

Reduced 'Effective' Circulating Blood Volume:

Congestive Heart Failure

Hepatic cirrhosis

Nephrotic Syndrome

　

> > > > > > > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > > > hyperaldosteronism > > > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi,> > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > > > >> > > > > > > >> > >> >>

[Guest guest]

Common scenario here. AF due to low K. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 3, 2012, at 11:47, Fred <lrl_computer@...> wrote:

Know this is off the topic but you hit a nerve with the Banana reference. Used to eat at least three bananas daily of I was unable to make it through the day. Told my PCP that I felt like a monkey and he laughed. Came down with Afib from low K and he wanted me to go on Coumiden. Never looked into low K. From: <jclark24p@...> hyperaldosteronism Sent: Sunday, June 3, 2012 11:36 AM Subject: Re: Heard back from NIH RE: trial - they say it's secondary not primary...

I knew she is on birth control. I also know that sometimes birth control fails, someday maybe I'll introduce you to my 28 y/o daughter who is 11 and 14 years younger than her brothers! We almost named her "Bonus"! (And she really is a bonus! ) A good troubleshooter, which I did professionally for 30 years in computers, starts at the beginning and rules out the obvious. How many on this site probably wouldn't even be here if their doctor had figured out why their K+ was low instead of throwing a pill or Banana at them!

I'm not a doctor but if I was her, and I wasn't pregnant , I would be looking at liver and kidney function and there are a couple of specific diseases that should be checked, that's why I recommended "chapter 23". From it I quote (You did notice she said low BP, right):

Usually Normo- or Hypotensive

Reduced Circulating Blood Volume:

Gitelman's Syndrome

Bartter's Syndrome

Pseudohypoaldosteronism Type I

Diuretic Use (surreptitious or prescribed therapy)

Reduced 'Effective' Circulating Blood Volume:

Congestive Heart Failure

Hepatic cirrhosis

Nephrotic Syndrome

　

> > > > > > > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > > > hyperaldosteronism > > > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi,> > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > > > >> > > > > > > >> > >> >>

[Guest guest]

Common scenario here. AF due to low K. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 3, 2012, at 11:47, Fred <lrl_computer@...> wrote:

Know this is off the topic but you hit a nerve with the Banana reference. Used to eat at least three bananas daily of I was unable to make it through the day. Told my PCP that I felt like a monkey and he laughed. Came down with Afib from low K and he wanted me to go on Coumiden. Never looked into low K. From: <jclark24p@...> hyperaldosteronism Sent: Sunday, June 3, 2012 11:36 AM Subject: Re: Heard back from NIH RE: trial - they say it's secondary not primary...

I knew she is on birth control. I also know that sometimes birth control fails, someday maybe I'll introduce you to my 28 y/o daughter who is 11 and 14 years younger than her brothers! We almost named her "Bonus"! (And she really is a bonus! ) A good troubleshooter, which I did professionally for 30 years in computers, starts at the beginning and rules out the obvious. How many on this site probably wouldn't even be here if their doctor had figured out why their K+ was low instead of throwing a pill or Banana at them!

I'm not a doctor but if I was her, and I wasn't pregnant , I would be looking at liver and kidney function and there are a couple of specific diseases that should be checked, that's why I recommended "chapter 23". From it I quote (You did notice she said low BP, right):

Usually Normo- or Hypotensive

Reduced Circulating Blood Volume:

Gitelman's Syndrome

Bartter's Syndrome

Pseudohypoaldosteronism Type I

Diuretic Use (surreptitious or prescribed therapy)

Reduced 'Effective' Circulating Blood Volume:

Congestive Heart Failure

Hepatic cirrhosis

Nephrotic Syndrome

　

> > > > > > > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > > > hyperaldosteronism > > > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi,> > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > > > >> > > > > > > >> > >> >>

[Guest guest]

Guess you'd better change page 565 of the Hypertension Primer. It says

" negative for PA " if " PRA >/= 1 ng/ml/h "

> > > > > > >

> > > > > > >

> > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > Subject: Heard back from NIH RE: trial - they

say it's secondary not primary...

> > > > > > > hyperaldosteronism

> > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Hi,

> > > > > > >

> > > > > > > So I have been corresponding with Dr. L at NIH about joining their

trial for primary hyperaldosteronism. They have reviewed my films and labs and

came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an

adrenal adenoma and high aldosterone, my renin is too high for it to be primary.

I am so confused. He said there is another trial they might like to enroll me in

and that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Off all meds and on a high salt diet documented.by 24 hr urine and lab doing the assay. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 3, 2012, at 13:54, <jclark24p@...> wrote:

Guess you'd better change page 565 of the Hypertension Primer. It says "negative for PA" if "PRA >/= 1 ng/ml/h"

> > > > > > >

> > > > > > >

> > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...

> > > > > > > hyperaldosteronism

> > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Hi,

> > > > > > >

> > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

And hers is not high. So not likely secondary. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 3, 2012, at 13:54, <jclark24p@...> wrote:

Guess you'd better change page 565 of the Hypertension Primer. It says "negative for PA" if "PRA >/= 1 ng/ml/h"

> > > > > > >

> > > > > > >

> > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...

> > > > > > > hyperaldosteronism

> > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Hi,

> > > > > > >

> > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

If this is true then If aldo is 100+ and renin is 1 then what would have?

> > > > > > > >

> > > > > > > >

> > > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > > Subject: Heard back from NIH RE: trial -

they say it's secondary not primary...

> > > > > > > > hyperaldosteronism

> > > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > > Â

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > > Hi,

> > > > > > > >

> > > > > > > > So I have been corresponding with Dr. L at NIH about joining

their trial for primary hyperaldosteronism. They have reviewed my films and labs

and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an

adrenal adenoma and high aldosterone, my renin is too high for it to be primary.

I am so confused. He said there is another trial they might like to enroll me in

and that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> > >

> >

>

[Guest guest]

Maybe like the doctors at the VA told you, Not PA! (But I don't know.)

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > > > Subject: Heard back from NIH RE: trial -

they say it's secondary not primary...

> > > > > > > > > hyperaldosteronism

> > > > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > > > >

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > Â

> > > > > > > > >

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > Hi,

> > > > > > > > >

> > > > > > > > > So I have been corresponding with Dr. L at NIH about joining

their trial for primary hyperaldosteronism. They have reviewed my films and labs

and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an

adrenal adenoma and high aldosterone, my renin is too high for it to be primary.

I am so confused. He said there is another trial they might like to enroll me in

and that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

So if it is not Primary and not Secondary do you have another suggestion? Where

is the defination of Secondary that gives the dignostic values?

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > > > Subject: Heard back from NIH RE: trial -

they say it's secondary not primary...

> > > > > > > > > hyperaldosteronism

> > > > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > > > >

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > ÃÆ'‚

> > > > > > > > >

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > Hi,

> > > > > > > > >

> > > > > > > > > So I have been corresponding with Dr. L at NIH about joining

their trial for primary hyperaldosteronism. They have reviewed my films and labs

and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an

adrenal adenoma and high aldosterone, my renin is too high for it to be primary.

I am so confused. He said there is another trial they might like to enroll me in

and that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

May want to look at this Primary Hyperaldosteronism without Suppressed Renin Due

to Secondary Hypertensive Kidney Damage

http://jcem.endojournals.org/content/85/9/3266.full

> > > > > > > > > >

> > > > > > > > > >

> > > > > > > > > > From: danielle_cairns <danielle_cairns@>

> > > > > > > > > > Subject: Heard back from NIH RE: trial

- they say it's secondary not primary...

> > > > > > > > > > hyperaldosteronism

> > > > > > > > > > Date: Monday, May 28, 2012, 2:54 PM

> > > > > > > > > >

> > > > > > > > > >

> > > > > > > > > >

> > > > > > > > > > Â

> > > > > > > > > >

> > > > > > > > > >

> > > > > > > > > >

> > > > > > > > > > Hi,

> > > > > > > > > >

> > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining

their trial for primary hyperaldosteronism. They have reviewed my films and labs

and came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an

adrenal adenoma and high aldosterone, my renin is too high for it to be primary.

I am so confused. He said there is another trial they might like to enroll me in

and that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> > > > > > > > > >

> > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

le said: 1) NIH says her renin is too high to be PA.  2) NIH says she doesn't qualify for the PA study but they have another going that she may qualify for. I believe le also said her BP is low.  Wouldn't that, by itself, rule out PA? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of BinghamOr quite likely there's some missing peices to the puzzle that we haven't gotten all the facts on everything yet, like meds, etc, and something may be falsely, or causing an elevated renin. There may be a factor driving the renin up and the adenoma is still the cause of the PA given we have a confirmed adenoma. The odds that the adenoma is the cause of primary and that there's something raising the renin (meds, testing process, etc) is much higher than the odds of it being secondary PA and the existence of the adenoma is just a bystander. But it's medicine, anything goes sometimes. > > > From: danielle_cairns <danielle_cairns@>> > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > hyperaldosteronism > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D

[Guest guest]

The problem is she is on meds that are know to cause false results for PA.

>

> le said:

>

>

>

> 1) NIH says her renin is too high to be PA.

>

> 2) NIH says she doesn't qualify for the PA study but they have another going

that she may qualify for.

>

>

>

> I believe le also said her BP is low. Wouldn't that, by itself, rule

out PA?

>

>

>

> Val

>

>

>

> From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Bingham

>

>

>

>

> Or quite likely there's some missing peices to the puzzle that we haven't

gotten all the facts on everything yet, like meds, etc, and something may be

falsely, or causing an elevated renin. There may be a factor driving the renin

up and the adenoma is still the cause of the PA given we have a confirmed

adenoma. The odds that the adenoma is the cause of primary and that there's

something raising the renin (meds, testing process, etc) is much higher than the

odds of it being secondary PA and the existence of the adenoma is just a

bystander. But it's medicine, anything goes sometimes.

>

>

>

> > > > From: danielle_cairns <danielle_cairns@>

> > > > Subject: Heard back from NIH RE: trial - they say

it's secondary not primary...

> > > > hyperaldosteronism

<http://us.mc1107.mail./mc/compose?to=hyperaldosteronism%40groups.\

com>

> > > > Date: Monday, May 28, 2012, 2:54 PM

>

> > > >

> > > > So I have been corresponding with Dr. L at NIH about joining their trial

for primary hyperaldosteronism. They have reviewed my films and labs and came

back on Friday and said I am ineligible because they believe I have secondary

hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma

and high aldosterone, my renin is too high for it to be primary. I am so

confused. He said there is another trial they might like to enroll me in and

that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

>

[Guest guest]

So if her normal BP was say 90/60 or what ever and then went up by 20 when she developed PA I would call a 20 mm rise HTN for her. But most don't know what their BP was before. Just as most don't know what is normal for A/R for them. Before the got PA say.CE Grim MDOn Jun 3, 2012, at 11:09 PM, Valarie wrote: le said: 1) NIH says her renin is too high to be PA. 2) NIH says she doesn't qualify for the PA study but they have another going that she may qualify for. I believe le also said her BP is low. Wouldn't that, by itself, rule out PA? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of BinghamOr quite likely there's some missing peices to the puzzle that we haven't gotten all the facts on everything yet, like meds, etc, and something may be falsely, or causing an elevated renin. There may be a factor driving the renin up and the adenoma is still the cause of the PA given we have a confirmed adenoma. The odds that the adenoma is the cause of primary and that there's something raising the renin (meds, testing process, etc) is much higher than the odds of it being secondary PA and the existence of the adenoma is just a bystander. But it's medicine, anything goes sometimes. > > > From: danielle_cairns <danielle_cairns@>> > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > hyperaldosteronism > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D

[Guest guest]

If she was 90/60 and BP went up 20 to 110/80 she wouldn't be considered

hypotensive would she?

>

> >

> > le said:

> >

> >

> >

> > 1) NIH says her renin is too high to be PA.

> >

> > 2) NIH says she doesn't qualify for the PA study but they have

> > another going that she may qualify for.

> >

> >

> >

> > I believe le also said her BP is low. Wouldn't that, by

> > itself, rule out PA?

> >

> >

> >

> > Val

> >

> >

> >

> > From: hyperaldosteronism

[mailto:hyperaldosteronism

> > ] On Behalf Of Bingham

> >

> >

> > Or quite likely there's some missing peices to the puzzle that we

> > haven't gotten all the facts on everything yet, like meds, etc, and

> > something may be falsely, or causing an elevated renin. There may be

> > a factor driving the renin up and the adenoma is still the cause of

> > the PA given we have a confirmed adenoma. The odds that the adenoma

> > is the cause of primary and that there's something raising the renin

> > (meds, testing process, etc) is much higher than the odds of it

> > being secondary PA and the existence of the adenoma is just a

> > bystander. But it's medicine, anything goes sometimes.

> >

> >

> >

> > > > > From: danielle_cairns <danielle_cairns@>

> > > > > Subject: Heard back from NIH RE: trial -

> > they say it's secondary not primary...

> > > > > hyperaldosteronism

> > > > > Date: Monday, May 28, 2012, 2:54 PM

> >

> > > > >

> > > > > So I have been corresponding with Dr. L at NIH about joining

> > their trial for primary hyperaldosteronism. They have reviewed my

> > films and labs and came back on Friday and said I am ineligible

> > because they believe I have secondary hyperaldosteronism. He said

> > that despite the fact that I have an adrenal adenoma and high

> > aldosterone, my renin is too high for it to be primary. I am so

> > confused. He said there is another trial they might like to enroll

> > me in and that the cause of my disease may be genetic. I am so

> > frustrated/worried now because I thought I was close to getting

> > answers. Does anyone know what the workup for secondary might

> > involve?? I am just trying to ease my nerves - the internet can be a

> > scary place when you are looking for medical info Thanks!!! -D

> >

> >

> >

> >

> >

>

[Guest guest]

Which med.? According to the lists I have seen the meds. she is on should not

affect ARR.

> >

> > le said:

> >

> >

> >

> > 1) NIH says her renin is too high to be PA.

> >

> > 2) NIH says she doesn't qualify for the PA study but they have another going

that she may qualify for.

> >

> >

> >

> > I believe le also said her BP is low. Wouldn't that, by itself, rule

out PA?

> >

> >

> >

> > Val

> >

> >

> >

> > From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Bingham

> >

> >

> >

> >

> > Or quite likely there's some missing peices to the puzzle that we haven't

gotten all the facts on everything yet, like meds, etc, and something may be

falsely, or causing an elevated renin. There may be a factor driving the renin

up and the adenoma is still the cause of the PA given we have a confirmed

adenoma. The odds that the adenoma is the cause of primary and that there's

something raising the renin (meds, testing process, etc) is much higher than the

odds of it being secondary PA and the existence of the adenoma is just a

bystander. But it's medicine, anything goes sometimes.

> >

> >

> >

> > > > > From: danielle_cairns <danielle_cairns@>

> > > > > Subject: Heard back from NIH RE: trial - they say

it's secondary not primary...

> > > > > hyperaldosteronism

<http://us.mc1107.mail./mc/compose?to=hyperaldosteronism%40groups.\

com>

> > > > > Date: Monday, May 28, 2012, 2:54 PM

> >

> > > > >

> > > > > So I have been corresponding with Dr. L at NIH about joining their

trial for primary hyperaldosteronism. They have reviewed my films and labs and

came back on Friday and said I am ineligible because they believe I have

secondary hyperaldosteronism. He said that despite the fact that I have an

adrenal adenoma and high aldosterone, my renin is too high for it to be primary.

I am so confused. He said there is another trial they might like to enroll me in

and that the cause of my disease may be genetic. I am so frustrated/worried now

because I thought I was close to getting answers. Does anyone know what the

workup for secondary might involve?? I am just trying to ease my nerves - the

internet can be a scary place when you are looking for medical info Thanks!!!

-D

> >

>

[Guest guest]

Yasmin as I recall was stopped for 2 weeks only.Need for a good thumbnail.CE Grim MDOn Jun 4, 2012, at 10:54 AM, wrote: Which med.? According to the lists I have seen the meds. she is on should not affect ARR. > > > > le said: > > > > > > > > 1) NIH says her renin is too high to be PA. > > > > 2) NIH says she doesn't qualify for the PA study but they have another going that she may qualify for. > > > > > > > > I believe le also said her BP is low. Wouldn't that, by itself, rule out PA? > > > > > > > > Val > > > > > > > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham > > > > > > > > > > Or quite likely there's some missing peices to the puzzle that we haven't gotten all the facts on everything yet, like meds, etc, and something may be falsely, or causing an elevated renin. There may be a factor driving the renin up and the adenoma is still the cause of the PA given we have a confirmed adenoma. The odds that the adenoma is the cause of primary and that there's something raising the renin (meds, testing process, etc) is much higher than the odds of it being secondary PA and the existence of the adenoma is just a bystander. But it's medicine, anything goes sometimes. > > > > > > > > > > > From: danielle_cairns <danielle_cairns@> > > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary... > > > > > hyperaldosteronism <http://us.mc1107.mail./mc/compose?to=hyperaldosteronism%40> > > > > > Date: Monday, May 28, 2012, 2:54 PM > > > > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D > > >

[Guest guest]

Per her earlier message below, she is taking Loryna, a BCP that contains drospirenone, which is a MCB.~ ~ ~Hi,Thanks for responding - here are my labs:non-dex suppression:Renin: 2.24Aldo/PRA ratio:41.1aldo: 92CORT:22.7 mcg/dLdex suppression test:Renin: 2.35Aldo/PRA ratio: 51.5aldo: 121 ng/dLCORT:1.7I also have low Vit D, low CO2 and have a small right adrenal adenoma and havelow BP (hypotension). I was taking the following at both tests:Depakote: 1000mgLexapro:30 mgBirth control (Loryna)Hope this helps!! Thanks again -D> > >> > > le said:> > > > > > > > > > > > 1) NIH says her renin is too high to be PA. > > > > > > 2) NIH says she doesn't qualify for the PA study but they have another going that she may qualify for.> > > > > > > > > > > > I believe le also said her BP is low. Wouldn't that, by itself, rule out PA?> > > > > > > > > > > > Val> > > > > > > > > > > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham> > > > > > > > > > > > > > > Or quite likely there's some missing peices to the puzzle that we haven't gotten all the facts on everything yet, like meds, etc, and something may be falsely, or causing an elevated renin. There may be a factor driving the renin up and the adenoma is still the cause of the PA given we have a confirmed adenoma. The odds that the adenoma is the cause of primary and that there's something raising the renin (meds, testing process, etc) is much higher than the odds of it being secondary PA and the existence of the adenoma is just a bystander. But it's medicine, anything goes sometimes.> > > > > > > > > > > > > > > From: danielle_cairns <danielle_cairns@>> > > > > > Subject: Heard back from NIH RE: trial - they say it's secondary not primary...> > > > > > hyperaldosteronism <http://us.mc1107.mail./mc/compose?to=hyperaldosteronism%40> > > > > > > Date: Monday, May 28, 2012, 2:54 PM> > > > > > > > > > > > > > > So I have been corresponding with Dr. L at NIH about joining their trial for primary hyperaldosteronism. They have reviewed my films and labs and came back on Friday and said I am ineligible because they believe I have secondary hyperaldosteronism. He said that despite the fact that I have an adrenal adenoma and high aldosterone, my renin is too high for it to be primary. I am so confused. He said there is another trial they might like to enroll me in and that the cause of my disease may be genetic. I am so frustrated/worried now because I thought I was close to getting answers. Does anyone know what the workup for secondary might involve?? I am just trying to ease my nerves - the internet can be a scary place when you are looking for medical info Thanks!!! -D> > >> >>

[Guest guest]

It is an MCB but is known to raise renin levels not supress it. So there could be our culprit right there and the assumption by her doc she does not have it, or it's secondary is not accounting for this.

Side Effects

"Drospirenone has been shown to cause increased excretion of sodium in women because it also signals to the kidneys to excrete sodium. It also causes an increase in renin levels (renin is a kidney hormone) as well as the hormone aldosterone (a hormone which acts on the kidneys). Despite this loss of sodium (which normally lowers blood pressure), drospirenone does not cause any changes in blood pressure. It also raises high-density lipoprotein levels (also known as the "good" cholesterol) but also raises overall triglyceride levels."

Endocrine Abstracts (2011) 26 P12

Influence of drospirenone on renin–angiotensin–aldosterone system evaluation

L Vroonen, E Cavalier, L Vranken, H Valdes-Socin, P Petrossians & A Beckers

CHU Liege, Liege, Belgium.

Introduction: Drospirenone is a synthetic progestin usually found in combination with ethynilestradiol in oral contraceptive formulas. In 2007, this compound was also used in hormonal replacement therapy during menopause. Drospirenone shows antimineralocoricoïd effect due to an analogy of structure with aldosterone. This effect counteracts the estrogen stimulating action of renin–angiotensin–aldosterone (RAA) system, lowering water retention symptoms due to classic oral contaception. On the other hand, primary aldosteronism (PA) accounts for 6% of hypertension. Screening of PA consists in evaluation of PAC levels and ARR after withdrawal of several antihypertensive drugs that can interfere with this dosage.

Aim of the study: To evaluate the interference of drospirenone with plasma aldosterone concentration (PAC), plasma renin activity (PRA) and potassium levels in the general population. Blood sample was obtained in 25 patients taking an oral contraception (11 in drospirenone group – 14 in non drospirenone group). Comparison of PAC/PRA ratio (aldosterone to renin ratio – ARR) was also performed as this ratio is used for screening of primary aldosteronism.

Results: Age was comparable in both groups (P=0.29). PAC was significantly more elevated in patients taking drospirenone (P=0.001) while potassium levels was not significantly different (P=0.2). Interestingly, PRA levels were not different between both groups (P=0.07). In consequence, PAC/PRA was significantly increased in drospirenone group (P=0.017). Systolic pressure was significantly higher in drospirenone group while diastolic pressure was not different (P=0.02 and P=0.098 respectively). Median value of ARR in drospirenone group was 22.63.

Conclusion: Drospirenone is an effective oral contraception with antimineralocorticoid effect with the advantage of lowering water retention symptoms. In consequence of this effect, we found a significantly higher PAC and ARR levels in drospirenone group. Drospirenone should then be withdrawed before screening a patient in case of primary aldosteronism suspicion.

Endocrine Abstracts (2011) 26 P12 "

[Guest guest]

Depends on body size, age to some extent, and whether there are symptoms with it. With a thin young female that may not be any issue. Regardless, if there are symptoms, like dizziness, syncope, shortness of breath, than it may be too low.

From: <jclark24p@...>Subject: Re: Heard back from NIH RE: trial - they say it's secondary not primary...hyperaldosteronism Date: Monday, June 4, 2012, 10:26 AM

If she was 90/60 and BP went up 20 to 110/80 she wouldn't be considered hypotensive would she?> > >> > le said:> >> >> >> > 1) NIH says her renin is too high to be PA.> >> > 2) NIH says she

doesn't qualify for the PA study but they have > > another going that she may qualify for.> >> >> >> > I believe le also said her BP is low. Wouldn't that, by > > itself, rule out PA?> >> >> >> > Val> >> >> >> > From: hyperaldosteronism [mailto:hyperaldosteronism > > ] On Behalf Of Bingham> >> >> > Or quite likely there's some missing peices to the puzzle that we > > haven't

gotten all the facts on everything yet, like meds, etc, and > > something may be falsely, or causing an elevated renin. There may be > > a factor driving the renin up and the adenoma is still the cause of > > the PA given we have a confirmed adenoma. The odds that the adenoma > > is the cause of primary and that there's something raising the renin > > (meds, testing process, etc) is much higher than the odds of it > > being secondary PA and the existence of the adenoma is just a > > bystander. But it's medicine, anything goes sometimes.> >> >> >> > > > > From: danielle_cairns <danielle_cairns@>> > > > > Subject: Heard back from NIH RE: trial - > > they say it's secondary not primary...> > > > > hyperaldosteronism > > > > > Date: Monday, May 28, 2012, 2:54 PM> >> > > > >> > > > > So I have been corresponding with Dr. L at NIH about joining > > their trial for primary hyperaldosteronism. They have reviewed my > > films and labs and came back on Friday and said I am ineligible > > because they believe I have secondary hyperaldosteronism. He said > > that despite the fact that I have an adrenal adenoma and high > > aldosterone, my renin is too high for it to be primary. I am so > > confused. He said there is another trial they might like to enroll > > me in and that the cause of my disease may be genetic. I am so > >

frustrated/worried now because I thought I was close to getting > > answers. Does anyone know what the workup for secondary might > > involve?? I am just trying to ease my nerves - the internet can be a > > scary place when you are looking for medical info Thanks!!! -D> >> >> >> >> >>