Re: PA Survey Questions

[Guest guest]

The result of any test has to be considered with the clinical picture

My guess is that most labs use published normal values as the do not

really know who is normal and who is not

When we did research studies we always studied normals at the same

time. Most labs do not do this.

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 28, 2009, at 11:57 AM, jwwright <jwwright@...> wrote:

> I think the range is determined from their average data, since they

> are responsible for that area.

> Regards

>

> Re: PA Survey Questions

> Date: Sat, 28 Mar 2009 11:20:53 +1000

>

> Symptoms such as weak muscles, especially in legs, muscle pain and

> soreness, muscle cramping...fatigue generally

>

> Clarence Grim wrote:

> >

> > There are a number of ways that drawing and handling blood that can

> > falsely increase true low K to normal or even high K and these are

> > detailed in one of our files. Read these and take to your health

> care

> > team.

> >

> > What Sx are u talking about?

> >

> > Tiped sad Send form mi

> > iPhone ;-)

> >

> > May your pressure be low!

> >

> > CE Grim MD

> > Specializing in Difficult

> > Hypertension

> >

> > On Mar 26, 2009, at 8:33 PM, Carol Christie <carolch@...

> > <mailto:carolch%40gil.com.au>> wrote:

> >

> > > Hi a

> > > I'm very pleased you and others are taking these initiatives.

> > > Congratulations to all concerned!

> > >

> > > General questions

> > > 1. Can a person have low potassium levels sufficient to cause ill

> > > effects, even when the blood analysis indicates " within normal

> range " ,

> > > and the blood has been taken according to the proper guidelines?

> > > 2. Are there any known links between PA and bowel polyposis?

> > > 3. Are there any known links between PA and spinal pain?

> > > 4.Are there any known links between PA and brain functioning?

> > > 5. Why is it that in some countries, doctors are wary of

> prescribing

> > > more than 50mg per day of spiro?

> > >

> > > Survey questions

> > > 1. Where you may have BP under control and potassium normalised

> > > through

> > > the use of spiro, what symptoms persist?

> > > 2. Have you had bowel polyps?

> > > 3. Do you have weakness in the back and legs such that unsupported

> > > walking is difficult?

> > > 4. Do you suffer from mental confusion/ foggy brain?

> > > 5. What dosage of spiro has proved most beneficial to you?

> > > 6. Have you ever been able to say, " At last, I'm feeling better " ?

> > >

> > > Carol

> > >

> > > a Hall wrote:

> > > >

> > > >

> > > > Again, I'd like to ask the group to contribute questions to

> the PA

> > > > survey that's being developed. Nobody here has questions they're

> > > > curious about regarding PA? Nobody has questions that they wish

> > > their

> > > > physician had asked them when they were searching for a

> diagnosis?

> > > >

> > > > a

> > > >

> > > >

> > >

> > >

> >

> >

[Guest guest]

We need a list of BP meds by class

Diuretics

Beta Blockers

ACEs

ARBs

CCBs

Renin Inhibitors

MC blockers

Alpha Blockers

Direct acting vasodilators.

How did each one work. Why was it stopped.

Please list combinations of these that you were on.

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 28, 2009, at 11:40 AM, a Hall <shahall@...> wrote:

>

> I'm working on making a survey at kwiksurveys.com. I chose this site

> because: 1)they're free 2)you can make unlimited questions, most

> free sites limit to 10-20 3)they state their site is secure 4)it's

> easy to use 5)the survey can be edited or added on to at any time

> 6)I think it will generate some statistics for us 7)looks like

> information can be left on there indefinitely. Below are the

> questions that I have so far. They're a compilation of questions

> from Dr. Grim, the group, and some of my own. I'm trying to make

> sure it doesn't get too long and involved at this point and

> intimidate people or discourage them from filling it out. I'm trying

> to limit questions to things that are most important to us. I'd

> appreciate some constructive feedback and suggestions, please.

>

> 1) Screen Name

> 2) Gender

> 3) Age

> 4) Ethnicity

> 5) Country of Residence

> 6) Age when hypertension first diagnosed

> 7) Age when low potassium first discovered, if you have/had it

> 8) If you suffer from low potassium, when it was first discovered

> were you given a reason for it being low?

> 9) If " yes " to above question, what was the reason you were given

> for it being low?

> 10) Do you require potassium supplements now?

> 11) (Females) Did you have high blood pressure before you were

> pregnant?

> 12) (Females) If yes to above question, did blood pressure get

> better during pregnancy?

> 13) Age when Primary Aldosteronism first diagnosed by a physician?

> 14) Type of physician who diagnosed your PA?

> 15) How many physicians did you see before you were finally

> diagnosed with PA?

> 16) Cause of your PA?

> 1 ) hyperplasia

> 2 ) unilateral adenoma

> 3 ) bilateral adenomas

> 17) What were your main symptoms before you were diagnosed with PA?

> 18) Since your diagnosis and treatment for PA, would you say that

> most of the time you feel generally well or generally unwell?

> 19) Have you had AVS (adrenal vein sampling)?

> 20) If you answered " Yes " to the above question:

> 1 ) where did you have it done?

> 2 ) done properly w/ ACTH?

> 3 ) both sides sucessfully done?

> 21) Current dose of Spironolactone or Inspira?

> 22) Has a physician ever recommended the DASH diet as part of your

> treatment for PA?

> 23) Do you measure your blood pressure at home?

> 24) If " no " to above question, why not?

> 25) What was your highest blood pressure before receiving a

> diagnosis and treatment for PA?

> 26) What was your last blood pressure measurement?

> 27) Have you had an adrenalectomy?

> 28) If yes to above question

> 1 ) When was it done?

> 2 ) Where was it done?

> 3 ) Did you have AVS beforehand?

> 4 ) Have any symptoms recurred?

> 29) Have you ever been told you had any of the following?

> 1 ) glucose intolerance or insulin resistance?

> 2 ) left ventricular hypertropy?

> 3 ) damage from high BP when a doctor looked inside your eyes?

> 4) other condition related to uncontrolled hypertension? If other ,

> please explain

> 30) Before your diagnosis of PA, how many times per night did you

> get up to urinate?

> 31) Relating to the above question:

> 1 ) how long going on?

> 2 ) more urine night than day?

> 3 ) Spiro/Inspra make it better?

> 4 ) Did surgery make it better?

> 5 ) Yes to above how much better?

> 32) Questions related to your kidneys. If you answer yes to any

> question, please explain cause and amount, if known. Have you ever:

> 1 ) had blood in your urine?

> 2 ) had albumin in your urine?

> 3 ) had kidney stones?

> 4 ) had a kidney infection?

> 5 ) had a prostate problem? (male)

>

>

> -msg p a span.yshortcuts { font-family: Verdana; font-size: 10px;

> font-weight: normal; } #ygrp-msg p a { font-family: Verdana; font-

> size: 10px; } #ygrp-mlmsg a { color: #1E66AE; } div.attach-table div

> div a { text-decoration: none; } div.attach-table { width:

> 400px; } --> l>

[Guest guest]

That would be a huge, time-consuming task to put that list together and maybe a

survey in itself.  Perhaps someone else will volunteer to do this because I

don't have the time right now.  I think most people would be like me and not

remember exactly what they were on when, especially the combinations.  At the

time we were told the medication needed to be changed or added to because it was

not controlling BP adequately.

 

a

>

> I'm working on making a survey at kwiksurveys. com. I chose this site

> because: 1)they're free 2)you can make unlimited questions, most

> free sites limit to 10-20 3)they state their site is secure 4)it's

> easy to use 5)the survey can be edited or added on to at any time

> 6)I think it will generate some statistics for us 7)looks like

> information can be left on there indefinitely. Below are the

> questions that I have so far. They're a compilation of questions

> from Dr. Grim, the group, and some of my own. I'm trying to make

> sure it doesn't get too long and involved at this point and

> intimidate people or discourage them from filling it out. I'm trying

> to limit questions to things that are most important to us. I'd

> appreciate some constructive feedback and suggestions, please.

>

> 1) Screen Name

> 2) Gender

> 3) Age

> 4) Ethnicity

> 5) Country of Residence

> 6) Age when hypertension first diagnosed

> 7) Age when low potassium first discovered, if you have/had it

> 8) If you suffer from low potassium, when it was first discovered

> were you given a reason for it being low?

> 9) If " yes " to above question, what was the reason you were given

> for it being low?

> 10) Do you require potassium supplements now?

> 11) (Females) Did you have high blood pressure before you were

> pregnant?

> 12) (Females) If yes to above question, did blood pressure get

> better during pregnancy?

> 13) Age when Primary Aldosteronism first diagnosed by a physician?

> 14) Type of physician who diagnosed your PA?

> 15) How many physicians did you see before you were finally

> diagnosed with PA?

> 16) Cause of your PA?

> 1 ) hyperplasia

> 2 ) unilateral adenoma

> 3 ) bilateral adenomas

> 17) What were your main symptoms before you were diagnosed with PA?

> 18) Since your diagnosis and treatment for PA, would you say that

> most of the time you feel generally well or generally unwell?

> 19) Have you had AVS (adrenal vein sampling)?

> 20) If you answered " Yes " to the above question:

> 1 ) where did you have it done?

> 2 ) done properly w/ ACTH?

> 3 ) both sides sucessfully done?

> 21) Current dose of Spironolactone or Inspira?

> 22) Has a physician ever recommended the DASH diet as part of your

> treatment for PA?

> 23) Do you measure your blood pressure at home?

> 24) If " no " to above question, why not?

> 25) What was your highest blood pressure before receiving a

> diagnosis and treatment for PA?

> 26) What was your last blood pressure measurement?

> 27) Have you had an adrenalectomy?

> 28) If yes to above question

> 1 ) When was it done?

> 2 ) Where was it done?

> 3 ) Did you have AVS beforehand?

> 4 ) Have any symptoms recurred?

> 29) Have you ever been told you had any of the following?

> 1 ) glucose intolerance or insulin resistance?

> 2 ) left ventricular hypertropy?

> 3 ) damage from high BP when a doctor looked inside your eyes?

> 4) other condition related to uncontrolled hypertension? If other ,

> please explain

> 30) Before your diagnosis of PA, how many times per night did you

> get up to urinate?

> 31) Relating to the above question:

> 1 ) how long going on?

> 2 ) more urine night than day?

> 3 ) Spiro/Inspra make it better?

> 4 ) Did surgery make it better?

> 5 ) Yes to above how much better?

> 32) Questions related to your kidneys. If you answer yes to any

> question, please explain cause and amount, if known. Have you ever:

> 1 ) had blood in your urine?

> 2 ) had albumin in your urine?

> 3 ) had kidney stones?

> 4 ) had a kidney infection?

> 5 ) had a prostate problem? (male)

>

>

> -msg p a span.yshortcuts { font-family: Verdana; font-size: 10px;

> font-weight: normal; } #ygrp-msg p a { font-family: Verdana; font-

> size: 10px; } #ygrp-mlmsg a { color: #1E66AE; } div.attach-table div

> div a { text-decoration: none; } div.attach-table { width:

> 400px; } --> l>

[Guest guest]

Excellent idea! Here are questions that I wish my doctors had asked:

Thirteen Steps to Diagnosis

1. Does your potassium level fluctuate even though you are on a potassium

supplement?

2. Do you have recurrent lower back pain?

3. What are your sex hormone levels?

4. Have you been placed on Spironolactone therapy?

5. What are your urinary/bowel habits? Any changes?

6. Any mental or mood changes?

7. How does stress affect you?

8. Do you experience pain or swelling in your legs?

9. Can you stand from a sitting position without using your arms to assist you?

10. Does your potassium level fall when you are in HTN crisis?

11. Have you ever heard of Conn's Syndrome, hyperaldosteronism, etc.?

12. Have you ever been tested for adrenal adenomas?

13. Have you seen an endocrinologist?

I really don't understand why so many doctors that I've seen were so clueless.

My symptoms were classic. The closest that I came to a diagnosis was a nurse

practitioner that mentioned the possibility of pheochromocytoma as a possible

cause. The cost of the test prevented me from having the test done at the

time. More than likely, it would have come back negative since I do not have

the condition!

Remember, we can add these questions to our group wiki at

http://connsyndromeproject.pbwiki.com/

(If anyone wants to compile the final survey questions into a file or final

posting, I will add them to the wiki.)

>

> Hello a!

>

> You have already got many good questions.

>

> I wish my primary doctor, or any MD I have seen the last 20 years, had asked

me about peeing habits and thirst.

> I am always thirsthy and have to pee every hour of the day. These are

classical syptoms of PA, but I have had them for so long it feels normal to

me.  

>  

> For the survey I am curious about other symtoms that can point to PA. 

> What about a list off all the symptoms and other deseases the group have

experienced, to be answered by yes, no, or dont know, to see some statistics off

our problems?

> Ex: Low K; Low vitamin D; Other hormones tare not normal, like insulin or

testosterone; fibroids; itching, bruising, sweating, hot flashes and all we can

think off?

>

> Henriette

>

>

> ________________________________

> From: a Hall <shahall@...>

> hyperaldosteronism

> Sent: Thursday, March 26, 2009 11:31:17 PM

> Subject: PA Survey Questions

>

>

>

> Again, I'd like to ask the group to contribute questions to the PA survey

that's being developed. Nobody here has questions they're curious about

regarding PA? Nobody has questions that they wish their physician had asked them

when they were searching for a diagnosis?

>

> a

>

>

>

>

>

>

>

[Guest guest]

a,

Can I assist with the wiki survey? Send me an invitation or the website

info/name.

Also, here is my contribution to this thread:

Re: PA Survey Questions

Excellent idea! Here are questions that I wish my doctors had asked:

Thirteen Steps to Diagnosis

1. Does your potassium level fluctuate even though you are on a potassium

supplement?

2. Do you have recurrent lower back pain?

3. What are your sex hormone levels?

4. Have you been placed on Spironolactone therapy?

5. What are your urinary/bowel habits? Any changes?

6. Any mental or mood changes?

7. How does stress affect you?

8. Do you experience pain or swelling in your legs?

9. Can you stand from a sitting position without using your arms to assist you?

10. Does your potassium level fall when you are in HTN crisis?

11. Have you ever heard of Conn's Syndrome, hyperaldosteronism, etc.?

12. Have you ever been tested for adrenal adenomas?

13. Have you seen an endocrinologist?

I really don't understand why so many doctors that I've seen were so clueless.

My symptoms were classic. The closest that I came to a diagnosis was a nurse

practitioner that mentioned the possibility of pheochromocytoma as a possible

cause. The cost of the test prevented me from having the test done at the time.

More than likely, it would have come back negative since I do not have the

condition! I was taking 13 meds per day at one time and still had very high

HTN. Too many doctors missed this diagnosis, choosing to play the medication

game with my life...

Remember, we can add these survey questions to our group wiki at

http://connsyndromeproject.pbwiki.com/

(If anyone wants to compile the final survey questions into a file or final

posting, I will add them to the wiki.)

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

>

> >

> > I'm working on making a survey at kwiksurveys. com. I chose this site

> > because: 1)they're free 2)you can make unlimited questions, most

> > free sites limit to 10-20 3)they state their site is secure 4)it's

> > easy to use 5)the survey can be edited or added on to at any time

> > 6)I think it will generate some statistics for us 7)looks like

> > information can be left on there indefinitely. Below are the

> > questions that I have so far. They're a compilation of questions

> > from Dr. Grim, the group, and some of my own. I'm trying to make

> > sure it doesn't get too long and involved at this point and

> > intimidate people or discourage them from filling it out. I'm trying

> > to limit questions to things that are most important to us. I'd

> > appreciate some constructive feedback and suggestions, please.

> >

> > 1) Screen Name

> > 2) Gender

> > 3) Age

> > 4) Ethnicity

> > 5) Country of Residence

> > 6) Age when hypertension first diagnosed

> > 7) Age when low potassium first discovered, if you have/had it

> > 8) If you suffer from low potassium, when it was first discovered

> > were you given a reason for it being low?

> > 9) If " yes " to above question, what was the reason you were given

> > for it being low?

> > 10) Do you require potassium supplements now?

> > 11) (Females) Did you have high blood pressure before you were

> > pregnant?

> > 12) (Females) If yes to above question, did blood pressure get

> > better during pregnancy?

> > 13) Age when Primary Aldosteronism first diagnosed by a physician?

> > 14) Type of physician who diagnosed your PA?

> > 15) How many physicians did you see before you were finally

> > diagnosed with PA?

> > 16) Cause of your PA?

> > 1 ) hyperplasia

> > 2 ) unilateral adenoma

> > 3 ) bilateral adenomas

> > 17) What were your main symptoms before you were diagnosed with PA?

> > 18) Since your diagnosis and treatment for PA, would you say that

> > most of the time you feel generally well or generally unwell?

> > 19) Have you had AVS (adrenal vein sampling)?

> > 20) If you answered " Yes " to the above question:

> > 1 ) where did you have it done?

> > 2 ) done properly w/ ACTH?

> > 3 ) both sides sucessfully done?

> > 21) Current dose of Spironolactone or Inspira?

> > 22) Has a physician ever recommended the DASH diet as part of your

> > treatment for PA?

> > 23) Do you measure your blood pressure at home?

> > 24) If " no " to above question, why not?

> > 25) What was your highest blood pressure before receiving a

> > diagnosis and treatment for PA?

> > 26) What was your last blood pressure measurement?

> > 27) Have you had an adrenalectomy?

> > 28) If yes to above question

> > 1 ) When was it done?

> > 2 ) Where was it done?

> > 3 ) Did you have AVS beforehand?

> > 4 ) Have any symptoms recurred?

> > 29) Have you ever been told you had any of the following?

> > 1 ) glucose intolerance or insulin resistance?

> > 2 ) left ventricular hypertropy?

> > 3 ) damage from high BP when a doctor looked inside your eyes?

> > 4) other condition related to uncontrolled hypertension? If other ,

> > please explain

> > 30) Before your diagnosis of PA, how many times per night did you

> > get up to urinate?

> > 31) Relating to the above question:

> > 1 ) how long going on?

> > 2 ) more urine night than day?

> > 3 ) Spiro/Inspra make it better?

> > 4 ) Did surgery make it better?

> > 5 ) Yes to above how much better?

> > 32) Questions related to your kidneys. If you answer yes to any

> > question, please explain cause and amount, if known. Have you ever:

> > 1 ) had blood in your urine?

> > 2 ) had albumin in your urine?

> > 3 ) had kidney stones?

> > 4 ) had a kidney infection?

> > 5 ) had a prostate problem? (male)

> >

> >

> > -msg p a span.yshortcuts { font-family: Verdana; font-size: 10px;

> > font-weight: normal; } #ygrp-msg p a { font-family: Verdana; font-

> > size: 10px; } #ygrp-mlmsg a { color: #1E66AE; } div.attach-table div

> > div a { text-decoration: none; } div.attach-table { width:

> > 400px; } --> l>

>

>

[Guest guest]

I will work on this one (meds). Others are free to jump in to help

as well ;-)

On Mar 28, 2009, at 7:36 PM, a Hall wrote:

> That would be a huge, time-consuming task to put that list together

> and maybe a survey in itself. Perhaps someone else will volunteer

> to do this because I don't have the time right now. I think most

> people would be like me and not remember exactly what they were on

> when, especially the combinations. At the time we were told the

> medication needed to be changed or added to because it was not

> controlling BP adequately.

>

> a

>

>

>

> >

> > I'm working on making a survey at kwiksurveys. com. I chose this

> site

> > because: 1)they're free 2)you can make unlimited questions, most

> > free sites limit to 10-20 3)they state their site is secure 4)it's

> > easy to use 5)the survey can be edited or added on to at any time

> > 6)I think it will generate some statistics for us 7)looks like

> > information can be left on there indefinitely. Below are the

> > questions that I have so far. They're a compilation of questions

> > from Dr. Grim, the group, and some of my own. I'm trying to make

> > sure it doesn't get too long and involved at this point and

> > intimidate people or discourage them from filling it out. I'm trying

> > to limit questions to things that are most important to us. I'd

> > appreciate some constructive feedback and suggestions, please.

> >

> > 1) Screen Name

> > 2) Gender

> > 3) Age

> > 4) Ethnicity

> > 5) Country of Residence

> > 6) Age when hypertension first diagnosed

> > 7) Age when low potassium first discovered, if you have/had it

> > 8) If you suffer from low potassium, when it was first discovered

> > were you given a reason for it being low?

> > 9) If " yes " to above question, what was the reason you were given

> > for it being low?

> > 10) Do you require potassium supplements now?

> > 11) (Females) Did you have high blood pressure before you were

> > pregnant?

> > 12) (Females) If yes to above question, did blood pressure get

> > better during pregnancy?

> > 13) Age when Primary Aldosteronism first diagnosed by a physician?

> > 14) Type of physician who diagnosed your PA?

> > 15) How many physicians did you see before you were finally

> > diagnosed with PA?

> > 16) Cause of your PA?

> > 1 ) hyperplasia

> > 2 ) unilateral adenoma

> > 3 ) bilateral adenomas

> > 17) What were your main symptoms before you were diagnosed with PA?

> > 18) Since your diagnosis and treatment for PA, would you say that

> > most of the time you feel generally well or generally unwell?

> > 19) Have you had AVS (adrenal vein sampling)?

> > 20) If you answered " Yes " to the above question:

> > 1 ) where did you have it done?

> > 2 ) done properly w/ ACTH?

> > 3 ) both sides sucessfully done?

> > 21) Current dose of Spironolactone or Inspira?

> > 22) Has a physician ever recommended the DASH diet as part of your

> > treatment for PA?

> > 23) Do you measure your blood pressure at home?

> > 24) If " no " to above question, why not?

> > 25) What was your highest blood pressure before receiving a

> > diagnosis and treatment for PA?

> > 26) What was your last blood pressure measurement?

> > 27) Have you had an adrenalectomy?

> > 28) If yes to above question

> > 1 ) When was it done?

> > 2 ) Where was it done?

> > 3 ) Did you have AVS beforehand?

> > 4 ) Have any symptoms recurred?

> > 29) Have you ever been told you had any of the following?

> > 1 ) glucose intolerance or insulin resistance?

> > 2 ) left ventricular hypertropy?

> > 3 ) damage from high BP when a doctor looked inside your eyes?

> > 4) other condition related to uncontrolled hypertension? If other ,

> > please explain

> > 30) Before your diagnosis of PA, how many times per night did you

> > get up to urinate?

> > 31) Relating to the above question:

> > 1 ) how long going on?

> > 2 ) more urine night than day?

> > 3 ) Spiro/Inspra make it better?

> > 4 ) Did surgery make it better?

> > 5 ) Yes to above how much better?

> > 32) Questions related to your kidneys. If you answer yes to any

> > question, please explain cause and amount, if known. Have you ever:

> > 1 ) had blood in your urine?

> > 2 ) had albumin in your urine?

> > 3 ) had kidney stones?

> > 4 ) had a kidney infection?

> > 5 ) had a prostate problem? (male)

> >

> >

> > -msg p a span.yshortcuts { font-family: Verdana; font-size: 10px;

> > font-weight: normal; } #ygrp-msg p a { font-family: Verdana; font-

> > size: 10px; } #ygrp-mlmsg a { color: #1E66AE; } div.attach-table div

> > div a { text-decoration: none; } div.attach-table { width:

> > 400px; } --> l>

>

>

[Guest guest]

We need to focus on questions that can be answered yes or no or with

a pull down list.

As you can see this will get long and complicated so need to pull

them together and merge some of the questions together.

Perhaps different folks can take one aspect of the problem and work

on that then bring the integrated questions back to us.

One topic needs to be anxiety and mood and fluctuating BP and K.

Hard to put in questions. Maybe you would like to work oin this topic.

Sex hormone levels is to broad of a term and they are almost never

measured and do not need to be. Why were yours measured? Suspect

they thought you were having menopause. Indeed include some

questions about menopause Sx and tests done.

On Mar 28, 2009, at 10:10 PM, kappi98 wrote:

> Excellent idea! Here are questions that I wish my doctors had asked:

>

> Thirteen Steps to Diagnosis

>

> 1. Does your potassium level fluctuate even though you are on a

> potassium supplement?

>

> 2. Do you have recurrent lower back pain?

>

> 3. What are your sex hormone levels?

>

> 4. Have you been placed on Spironolactone therapy?

>

> 5. What are your urinary/bowel habits? Any changes?

>

> 6. Any mental or mood changes?

>

> 7. How does stress affect you?

>

> 8. Do you experience pain or swelling in your legs?

>

> 9. Can you stand from a sitting position without using your arms to

> assist you?

>

> 10. Does your potassium level fall when you are in HTN crisis?

>

> 11. Have you ever heard of Conn's Syndrome, hyperaldosteronism, etc.?

>

> 12. Have you ever been tested for adrenal adenomas?

>

> 13. Have you seen an endocrinologist?

>

> I really don't understand why so many doctors that I've seen were

> so clueless. My symptoms were classic. The closest that I came to a

> diagnosis was a nurse practitioner that mentioned the possibility

> of pheochromocytoma as a possible cause. The cost of the test

> prevented me from having the test done at the time. More than

> likely, it would have come back negative since I do not have the

> condition!

>

> Remember, we can add these questions to our group wiki at

>

> http://connsyndromeproject.pbwiki.com/

>

> (If anyone wants to compile the final survey questions into a file

> or final posting, I will add them to the wiki.)

>

> >

> > Hello a!

> >

> > You have already got many good questions.

> >

> > I wish my primary doctor, or any MD I have seen the last 20

> years, had asked me about peeing habits and thirst.

> > I am always thirsthy and have to pee every hour of the day. These

> are classical syptoms of PA, but I have had them for so long it

> feels normal to me.

> >

> > For the survey I am curious about other symtoms that can point to

> PA.

> > What about a list off all the symptoms and other deseases the

> group have experienced, to be answered by yes, no, or dont know, to

> see some statistics off our problems?

> > Ex: Low K; Low vitamin D; Other hormones tare not normal, like

> insulin or testosterone; fibroids; itching, bruising, sweating, hot

> flashes and all we can think off?

> >

> > Henriette

> >

> >

> > ________________________________

> > From: a Hall <shahall@...>

> > hyperaldosteronism

> > Sent: Thursday, March 26, 2009 11:31:17 PM

> > Subject: PA Survey Questions

> >

> >

> >

> > Again, I'd like to ask the group to contribute questions to the

> PA survey that's being developed. Nobody here has questions they're

> curious about regarding PA? Nobody has questions that they wish

> their physician had asked them when they were searching for a

> diagnosis?

> >

> > a

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I agree, we need to keep questions short, simple and uncomplicated.  It may be

more advantageous to do several shorter surveys instead of one long, involved

one.

 

a

 

> Excellent idea! Here are questions that I wish my doctors had asked:

>

> Thirteen Steps to Diagnosis

>

> 1. Does your potassium level fluctuate even though you are on a

> potassium supplement?

>

> 2. Do you have recurrent lower back pain?

>

> 3. What are your sex hormone levels?

>

> 4. Have you been placed on Spironolactone therapy?

>

> 5. What are your urinary/bowel habits? Any changes?

>

> 6. Any mental or mood changes?

>

> 7. How does stress affect you?

>

> 8. Do you experience pain or swelling in your legs?

>

> 9. Can you stand from a sitting position without using your arms to

> assist you?

>

> 10. Does your potassium level fall when you are in HTN crisis?

>

> 11. Have you ever heard of Conn's Syndrome, hyperaldosteronism, etc.?

>

> 12. Have you ever been tested for adrenal adenomas?

>

> 13. Have you seen an endocrinologist?

>

> I really don't understand why so many doctors that I've seen were

> so clueless. My symptoms were classic. The closest that I came to a

> diagnosis was a nurse practitioner that mentioned the possibility

> of pheochromocytoma as a possible cause. The cost of the test

> prevented me from having the test done at the time. More than

> likely, it would have come back negative since I do not have the

> condition!

>

> Remember, we can add these questions to our group wiki at

>

> http://connsyndrome project.pbwiki. com/

>

> (If anyone wants to compile the final survey questions into a file

> or final posting, I will add them to the wiki.)

>

> >

> > Hello a!

> >

> > You have already got many good questions.

> >

> > I wish my primary doctor, or any MD I have seen the last 20

> years, had asked me about peeing habits and thirst.

> > I am always thirsthy and have to pee every hour of the day. These

> are classical syptoms of PA, but I have had them for so long it

> feels normal to me.

> >

> > For the survey I am curious about other symtoms that can point to

> PA.

> > What about a list off all the symptoms and other deseases the

> group have experienced, to be answered by yes, no, or dont know, to

> see some statistics off our problems?

> > Ex: Low K; Low vitamin D; Other hormones tare not normal, like

> insulin or testosterone; fibroids; itching, bruising, sweating, hot

> flashes and all we can think off?

> >

> > Henriette

> >

> >

> > ____________ _________ _________ __

> > From: a Hall <shahall@... >

> > hyperaldosteronism

> > Sent: Thursday, March 26, 2009 11:31:17 PM

> > Subject: [hyperaldosteronism ] PA Survey Questions

> >

> >

> >

> > Again, I'd like to ask the group to contribute questions to the

> PA survey that's being developed. Nobody here has questions they're

> curious about regarding PA? Nobody has questions that they wish

> their physician had asked them when they were searching for a

> diagnosis?

> >

> > a

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

There is no such thing as " normal low " K. If you also have HTN that

has been difficult to control you likely have PA.

Have you read my article in our files on the Evolution of PA?

Recommend doing so and then taking to your Drs.

All PAs start with a normal K and normal BP.

CE Grim MD

On Mar 27, 2009, at 8:58 PM, Isa Hackett wrote:

> I always wonder the same thing.

>

> And perhaps I have missed this, but - my ks have been between 3.4

> and 3.7 for the past five years. Is this considered symptomatic as

> related to PA?? My mds have said this is just normal low....

> Sent via BlackBerry from T-Mobile

>

> Re: PA Survey Questions

>

>

> How low is to low k If the one lab has 3.5 as the cut off and other

> labs have 3.7 witch one is right. My understanding is the labs come

> up with there range is they test many people and if 95 % of the

> test are between a range then that is normal. Then they take 5 % of

> other people and if they have no symtoms they use this in there

> range as well. My question is what if you are near one end of the

> range and have symtoms are you normal?

>

>

> ----- Re: PA Survey Questions

> Date: Sat, 28 Mar 2009 11:20:53 +1000

>

>

> Symptoms such as weak muscles, especially in legs, muscle pain and

> soreness, muscle cramping...fatigue generally

>

> Clarence Grim wrote:

> >

> > There are a number of ways that drawing and handling blood that can

> > falsely increase true low K to normal or even high K and these are

> > detailed in one of our files. Read these and take to your health

> care

> > team.

> >

> > What Sx are u talking about?

> >

> > Tiped sad Send form mi

> > iPhone ;-)

> >

> > May your pressure be low!

> >

> > CE Grim MD

> > Specializing in Difficult

> > Hypertension

> >

> > On Mar 26, 2009, at 8:33 PM, Carol Christie <carolch@...

> > <mailto:carolch%40gil.com.au>> wrote:

> >

> > > Hi a

> > > I'm very pleased you and others are taking these initiatives.

> > > Congratulations to all concerned!

> > >

> > > General questions

> > > 1. Can a person have low potassium levels sufficient to cause ill

> > > effects, even when the blood analysis indicates " within normal

> range " ,

> > > and the blood has been taken according to the proper guidelines?

> > > 2. Are there any known links between PA and bowel polyposis?

> > > 3. Are there any known links between PA and spinal pain?

> > > 4.Are there any known links between PA and brain functioning?

> > > 5. Why is it that in some countries, doctors are wary of

> prescribing

> > > more than 50mg per day of spiro?

> > >

> > > Survey questions

> > > 1. Where you may have BP under control and potassium normalised

> > > through

> > > the use of spiro, what symptoms persist?

> > > 2. Have you had bowel polyps?

> > > 3. Do you have weakness in the back and legs such that unsupported

> > > walking is difficult?

> > > 4. Do you suffer from mental confusion/ foggy brain?

> > > 5. What dosage of spiro has proved most beneficial to you?

> > > 6. Have you ever been able to say, " At last, I'm feeling better " ?

> > >

> > > Carol

> > >

> > > a Hall wrote:

> > > >

> > > >

> > > > Again, I'd like to ask the group to contribute questions to

> the PA

> > > > survey that's being developed. Nobody here has questions they're

> > > > curious about regarding PA? Nobody has questions that they wish

> > > their

> > > > physician had asked them when they were searching for a

> diagnosis?

> > > >

> > > > a

> > > >

> > > >

> > >

> > >

> >

> >

[Guest guest]

Again, I think we need to make two different things here. 

1)  The survey for already diagnosed PA patients to obtain information that

might be used in a medical paper on PA. 

2)  A questionnaire that new, undiagnosed members who think they might have PA

could take to their doctors so they would have a clue as to what the doctor

should be asking them and what they might want to ask their docs.  I think this

would be invaluable, I sure wish I'd had something like that when I was trying

to get a diagnosis.  We can all make suggestions that can be incorporated into

this list.  Again, these need to be simple, basic questions that most people

would know the answers to if asked. You've got a good start, why don't you begin

putting together a document that could be placed  in the " files " section of the

group website and printed out by anyone who is interested.

 

Here's a few of my suggestions that I think Physicians should ask us:

 

How long have you had hypertension?

Do you eat licorice or use licorice flavored foods, candy or drinks? (should be

one of the first things dr. asks)

Do you have an irregular heartbeat or a feeling of thumping in your chest?

Approximately how much sodium do you consume daily?

Do you have unexplained excessive thirst?

How many times a night do you get up to pee?

Do you think you pee more at night than during the day?

Do you take diuretics or laxatives? Are you anorexic or bulemic? Do you know of

any reason that would cause your potassium to be low? (if it is)

How many different blood pressure medications have you been prescribed for you

over how many years?

Has anyone else in your family ever been diagnosed with uncontrolled high blood

pressure accompanied by low potassium levels?

 

Some Questions I should have asked my Doctors:

How many PA patients have you diagnosed and treated?

Are you Board Certified?

Have you ever heard of the DASH diet?

If my renin is low and my aldosterone is high, are you suspicious of a diagnosis

of PA? If no, why not?

If my renin is low and my aldosterone is high, would I benefit from a trial of

spiro to see if my blood pressure responds to it? If no, why not?

Why are you referring me to a surgeon before seeing how my BP responds to a

trial of spiro? (if appropriate)

Why are you referring me to a surgeon before I have AVS done? (if appropriate)

 

 

From: kappi98 <kappi98a@...>

Subject: Re: PA Survey Questions < A few more questions>

hyperaldosteronism

Date: Sunday, March 29, 2009, 12:03 AM

1. Any changes in your energy level?

2. Do you have muscle tremors/twitches?

3. Do high sugar/salt foods affect your mood or blood pressure?

4. Do you feel fatigued in spite of a full night's sleep?

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

> >

> > Hello a!

> >

> > You have already got many good questions.

> >

> > I wish my primary doctor, or any MD I have seen the last 20 years, had asked

me about peeing habits and thirst.

> > I am always thirsthy and have to pee every hour of the day. These are

classical syptoms of PA, but I have had them for so long it feels normal to

me.  

> >  

> > For the survey I am curious about other symtoms that can point to PA. 

> > What about a list off all the symptoms and other deseases the group have

experienced, to be answered by yes, no, or dont know, to see some statistics off

our problems?

> > Ex: Low K; Low vitamin D; Other hormones tare not normal, like insulin or

testosterone; fibroids; itching, bruising, sweating, hot flashes and all we can

think off?

> >

> > Henriette

> >

> >

> > ____________ _________ _________ __

> > From: a Hall <shahall@>

> > hyperaldosteronism

> > Sent: Thursday, March 26, 2009 11:31:17 PM

> > Subject: [hyperaldosteronism ] PA Survey Questions

> >

> >

> >

> > Again, I'd like to ask the group to contribute questions to the PA survey

that's being developed. Nobody here has questions they're curious about

regarding PA? Nobody has questions that they wish their physician had asked them

when they were searching for a diagnosis?

> >

> > a

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Just a general comment on our health education system in pubic schools.

Note that em said she did not know what the adrenal gland did or what

it was.

This is such a basic part of normal health that we need to be

teaching about the adrenal gland in grade school biology. As 95% of

people will develop HTN if they got the wrong genes and feed them

wrong we need to be teaching everone to mastery about high blood

pressure, how to measure it, why it it so important, what makes it go

up and what makes it go down.

Better teach this than intelligent design.

CE Grim MD.

On Mar 27, 2009, at 8:06 PM, a Hall wrote:

> Absolutely.

>

>

> >

> > From: em5704 <em5704 (DOT) com>

> > Subject: [hyperaldosteronism ] Re: PA Survey Questions

> > hyperaldosteronism

> > Date: Friday, March 27, 2009, 8:00 PM

> >

> > These are all excellent questions, but they're based on the

> > assumption that the doctor would know about PA and be open to the

> > possibility that the patient could have it. And then, if the patient

> > has never heard about PA, and the doctor who is asking the questions

> > doesn't know diddly about PA, then the answers would mean

> nothing. You

> > see, it's like the blind leading the blind.

> >

> > For example, I had never heard of PA, didn't even know where my

> > adrenal gland was or what it did. For six years, I was treated by

> the

> > same doctor for HBP. I told her about the low K, but she ignored it.

> > She kept wanting me to go on a diuretic and I kept telling her

> that I

> > peed enough as it is. She never asked the followup question, " How

> many

> > times a day or night do you pee? " And I put down the excessive

> > urination as a perimenopausal symptom. I didn't realize it, but I

> was

> > sending her huge signals about what was wrong with me, which she

> > didn't know what to do with. So, I guess my question is, how do you

> > envision this survey being put to use? Will it be circulated to

> > primary care doctors? Sorry if I missed the explanation on the

> purpose

> > of this survey. I think it's a great idea to gather all of this

> > information together, but not sure what the plan is? What are we

> going

> > to do with it?

> >

> >

> > >

> > >

> > > Again, I'd like to ask the group to contribute questions to the PA

> > survey that's being developed. Nobody here has questions they're

> > curious about regarding PA? Nobody has questions that they wish

> their

> > physician had asked them when they were searching for a diagnosis?

> > >

> > > a

> > >

> >

> >

[Guest guest]

The site is www.kwiksurveys.com.  You have to open an account (free) but I used

a password that I've used for other website accounts so I'm not willing to share

it.  If you (or anyone) wants to set up another account and share your email

address and password that you set it up in, I'd be glad to share information I

have or help in any way.  I do appreciate the offer of help, though.

 

a

From: kappi98 <kappi98a@...>

Subject: Re: PA Survey Questions

hyperaldosteronism

Date: Saturday, March 28, 2009, 11:25 PM

a,

Can I assist with the wiki survey? Send me an invitation or the website

info/name.

Also, here is my contribution to this thread:

Re: PA Survey Questions

Excellent idea! Here are questions that I wish my doctors had asked:

Thirteen Steps to Diagnosis

1. Does your potassium level fluctuate even though you are on a potassium

supplement?

2. Do you have recurrent lower back pain?

3. What are your sex hormone levels?

4. Have you been placed on Spironolactone therapy?

5. What are your urinary/bowel habits? Any changes?

6. Any mental or mood changes?

7. How does stress affect you?

8. Do you experience pain or swelling in your legs?

9. Can you stand from a sitting position without using your arms to assist you?

10. Does your potassium level fall when you are in HTN crisis?

11. Have you ever heard of Conn's Syndrome, hyperaldosteronism, etc.?

12. Have you ever been tested for adrenal adenomas?

13. Have you seen an endocrinologist?

I really don't understand why so many doctors that I've seen were so clueless.

My symptoms were classic. The closest that I came to a diagnosis was a nurse

practitioner that mentioned the possibility of pheochromocytoma as a possible

cause. The cost of the test prevented me from having the test done at the time.

More than likely, it would have come back negative since I do not have the

condition! I was taking 13 meds per day at one time and still had very high

HTN. Too many doctors missed this diagnosis, choosing to play the medication

game with my life...

Remember, we can add these survey questions to our group wiki at

http://connsyndrome project.pbwiki. com/

(If anyone wants to compile the final survey questions into a file or final

posting, I will add them to the wiki.)

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

>

> >

> > I'm working on making a survey at kwiksurveys. com. I chose this site

> > because: 1)they're free 2)you can make unlimited questions, most

> > free sites limit to 10-20 3)they state their site is secure 4)it's

> > easy to use 5)the survey can be edited or added on to at any time

> > 6)I think it will generate some statistics for us 7)looks like

> > information can be left on there indefinitely. Below are the

> > questions that I have so far. They're a compilation of questions

> > from Dr. Grim, the group, and some of my own. I'm trying to make

> > sure it doesn't get too long and involved at this point and

> > intimidate people or discourage them from filling it out. I'm trying

> > to limit questions to things that are most important to us. I'd

> > appreciate some constructive feedback and suggestions, please.

> >

> > 1) Screen Name

> > 2) Gender

> > 3) Age

> > 4) Ethnicity

> > 5) Country of Residence

> > 6) Age when hypertension first diagnosed

> > 7) Age when low potassium first discovered, if you have/had it

> > 8) If you suffer from low potassium, when it was first discovered

> > were you given a reason for it being low?

> > 9) If " yes " to above question, what was the reason you were given

> > for it being low?

> > 10) Do you require potassium supplements now?

> > 11) (Females) Did you have high blood pressure before you were

> > pregnant?

> > 12) (Females) If yes to above question, did blood pressure get

> > better during pregnancy?

> > 13) Age when Primary Aldosteronism first diagnosed by a physician?

> > 14) Type of physician who diagnosed your PA?

> > 15) How many physicians did you see before you were finally

> > diagnosed with PA?

> > 16) Cause of your PA?

> > 1 ) hyperplasia

> > 2 ) unilateral adenoma

> > 3 ) bilateral adenomas

> > 17) What were your main symptoms before you were diagnosed with PA?

> > 18) Since your diagnosis and treatment for PA, would you say that

> > most of the time you feel generally well or generally unwell?

> > 19) Have you had AVS (adrenal vein sampling)?

> > 20) If you answered " Yes " to the above question:

> > 1 ) where did you have it done?

> > 2 ) done properly w/ ACTH?

> > 3 ) both sides sucessfully done?

> > 21) Current dose of Spironolactone or Inspira?

> > 22) Has a physician ever recommended the DASH diet as part of your

> > treatment for PA?

> > 23) Do you measure your blood pressure at home?

> > 24) If " no " to above question, why not?

> > 25) What was your highest blood pressure before receiving a

> > diagnosis and treatment for PA?

> > 26) What was your last blood pressure measurement?

> > 27) Have you had an adrenalectomy?

> > 28) If yes to above question

> > 1 ) When was it done?

> > 2 ) Where was it done?

> > 3 ) Did you have AVS beforehand?

> > 4 ) Have any symptoms recurred?

> > 29) Have you ever been told you had any of the following?

> > 1 ) glucose intolerance or insulin resistance?

> > 2 ) left ventricular hypertropy?

> > 3 ) damage from high BP when a doctor looked inside your eyes?

> > 4) other condition related to uncontrolled hypertension? If other ,

> > please explain

> > 30) Before your diagnosis of PA, how many times per night did you

> > get up to urinate?

> > 31) Relating to the above question:

> > 1 ) how long going on?

> > 2 ) more urine night than day?

> > 3 ) Spiro/Inspra make it better?

> > 4 ) Did surgery make it better?

> > 5 ) Yes to above how much better?

> > 32) Questions related to your kidneys. If you answer yes to any

> > question, please explain cause and amount, if known. Have you ever:

> > 1 ) had blood in your urine?

> > 2 ) had albumin in your urine?

> > 3 ) had kidney stones?

> > 4 ) had a kidney infection?

> > 5 ) had a prostate problem? (male)

> >

> >

> > -msg p a span.yshortcuts { font-family: Verdana; font-size: 10px;

> > font-weight: normal; } #ygrp-msg p a { font-family: Verdana; font-

> > size: 10px; } #ygrp-mlmsg a { color: #1E66AE; } div.attach-table div

> > div a { text-decoration: none; } div.attach-table { width:

> > 400px; } --> l>

>

>

[Guest guest]

What is CPAP??

I've had really bad sleep apnea for about ten years. Also have to pee at least

once every nite, and then have a terrible time going back to sleep. I'm just

exhausted every morning; it takes me until 2pm until I can really get going and

out of the house. Can't wait until I get into the endocrinologist May 20!

---- Clarence Grim <lowerbp2@...> wrote:

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

Sleep apnea may be more common in PA.

BP does not go down at night in PA.

Research is ongoing on this.

Some with sleep apnea has HTN that goes away with CPAP they say.

PA pts of course have to get up at night to pee which disturbs sleep.

On the other hand OSA lowers your threshold of having a full bladder

wake you up so I used to get up 4-8 x a night before CPAP.

CE Grim MD

On Mar 29, 2009, at 2:02 PM, arthur springer wrote:

> re sleep: what is the relevance?

> there are disturbed sleep patterns in many if not most chronic

> conditions.

>

> On Mar 29, 2009, at 2:41 PM, Clarence Grim wrote:

>

>> Some one needs to take up the task of putting together a series of

>> sleep questions.

>>

>> Again we need to use questions that can be answered with a yes or no

>> or a pull down multiple choice.

>>

>> And they have room for a text comment or details. Hard to sort and

>> catalog and analyze text answers.

>>

>> CE Grim MD

>>

>> On Mar 28, 2009, at 11:03 PM, kappi98 wrote:

>>

>>> 1. Any changes in your energy level?

> • Fatigue is a symptom.

>>>

>>> 2. Do you have muscle tremors/twitches?

> Relevance?

>>>

>>> 3. Do high sugar/salt foods affect your mood or blood pressure?

> PA is not a mood disorder.

> I am not familiar with anything that suggests glucose level is a PA

> symptom.

> BP is relevant.

>>>

>>> 4. Do you feel fatigued in spite of a full night's sleep?

> Or a full day's sleep.

>

>>>

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

>>>

>>>

>>>>>

>>>>> Hello a!

>>>>>

>>>>> You have already got many good questions.

>>>>>

>>>>> I wish my primary doctor, or any MD I have seen the last 20

>>> years, had asked me about peeing habits and thirst.

>>>>> I am always thirsthy and have to pee every hour of the day.

>>> These are classical syptoms of PA, but I have had them for so long

>>> it feels normal to me.

>>>>>

>>>>> For the survey I am curious about other symtoms that can point

>>> to PA.

>>>>> What about a list off all the symptoms and other deseases the

>>> group have experienced, to be answered by yes, no, or dont know, to

>>> see some statistics off our problems?

>>>>> Ex: Low K; Low vitamin D; Other hormones tare not normal, like

>>> insulin or testosterone; fibroids; itching, bruising, sweating, hot

>>> flashes and all we can think off?

>>>>>

>>>>> Henriette

>>>>>

>>>>>

>>>>> ________________________________

>>>>> From: a Hall <shahall@>

>>>>> hyperaldosteronism

>>>>> Sent: Thursday, March 26, 2009 11:31:17 PM

>>>>> Subject: PA Survey Questions

>>>>>

>>>>>

>>>>>

>>>>> Again, I'd like to ask the group to contribute questions to the

>>> PA survey that's being developed. Nobody here has questions they're

>>> curious about regarding PA? Nobody has questions that they wish

>>> their physician had asked them when they were searching for a

>>> diagnosis?

>>>>>

>>>>> a

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

[Guest guest]

RE:

" One topic needs to be anxiety and mood and fluctuating BP and K.

Hard to put in questions. .... "

Disagree,

• Have you ever been diagnosed and treated for anxiety, anxiety

disorder or panic attacks

by a board-certified psychiatrust/psychopharmacologist?

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

=========

On Mar 29, 2009, at 3:03 PM, a Hall wrote:

> I agree, we need to keep questions short, simple and uncomplicated. 

> It may be more advantageous to do several shorter surveys instead of

> one long, involved one.

>  

> a

>  

>

>

>

> > Excellent idea! Here are questions that I wish my doctors had asked:

> >

> > Thirteen Steps to Diagnosis

> >

> > 1. Does your potassium level fluctuate even though you are on a

> > potassium supplement?

> >

> > 2. Do you have recurrent lower back pain?

> >

> > 3. What are your sex hormone levels?

> >

> > 4. Have you been placed on Spironolactone therapy?

> >

> > 5. What are your urinary/bowel habits? Any changes?

> >

> > 6. Any mental or mood changes?

> >

> > 7. How does stress affect you?

> >

> > 8. Do you experience pain or swelling in your legs?

> >

> > 9. Can you stand from a sitting position without using your arms to

> > assist you?

> >

> > 10. Does your potassium level fall when you are in HTN crisis?

> >

> > 11. Have you ever heard of Conn's Syndrome, hyperaldosteronism,

> etc.?

> >

> > 12. Have you ever been tested for adrenal adenomas?

> >

> > 13. Have you seen an endocrinologist?

> >

> > I really don't understand why so many doctors that I've seen were

> > so clueless. My symptoms were classic. The closest that I came to a

> > diagnosis was a nurse practitioner that mentioned the possibility

> > of pheochromocytoma as a possible cause. The cost of the test

> > prevented me from having the test done at the time. More than

> > likely, it would have come back negative since I do not have the

> > condition!

> >

> > Remember, we can add these questions to our group wiki at

> >

> > http://connsyndrome project.pbwiki. com/

> >

> > (If anyone wants to compile the final survey questions into a file

> > or final posting, I will add them to the wiki.)

> >

> > >

> > > Hello a!

> > >

> > > You have already got many good questions.

> > >

> > > I wish my primary doctor, or any MD I have seen the last 20

> > years, had asked me about peeing habits and thirst.

> > > I am always thirsthy and have to pee every hour of the day. These

> > are classical syptoms of PA, but I have had them for so long it

> > feels normal to me.

> > >

> > > For the survey I am curious about other symtoms that can point to

> > PA.

> > > What about a list off all the symptoms and other deseases the

> > group have experienced, to be answered by yes, no, or dont know, to

> > see some statistics off our problems?

> > > Ex: Low K; Low vitamin D; Other hormones tare not normal, like

> > insulin or testosterone; fibroids; itching, bruising, sweating, hot

> > flashes and all we can think off?

> > >

> > > Henriette

> > >

> > >

> > > ____________ _________ _________ __

> > > From: a Hall <shahall@... >

> > > hyperaldosteronism

> > > Sent: Thursday, March 26, 2009 11:31:17 PM

> > > Subject: [hyperaldosteronism ] PA Survey Questions

> > >

> > >

> > >

> > > Again, I'd like to ask the group to contribute questions to the

> > PA survey that's being developed. Nobody here has questions they're

> > curious about regarding PA? Nobody has questions that they wish

> > their physician had asked them when they were searching for a

> > diagnosis?

> > >

> > > a

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I disagree. I have had the opposite experience tho I have not kept a

list of the manyu excellent sites I have found simply by following the

many links from NIH.Maybe you are looking in the wrong places.

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

===

On Mar 27, 2009, at 10:30 PM, frankbill@... wrote:

> I added a folder called web links for adenoma If you look at the web

> site you will find just how little is know about Conn's

>

> ----- Re: PA Survey Questions

> Date: Sat, 28 Mar 2009 11:20:53 +1000

>

> Symptoms such as weak muscles, especially in legs, muscle pain and

> soreness, muscle cramping...fatigue generally

>

> Clarence Grim wrote:

> >

> > There are a number of ways that drawing and handling blood that can

> > falsely increase true low K to normal or even high K and these are

> > detailed in one of our files. Read these and take to your health

> care

> > team.

> >

> > What Sx are u talking about?

> >

> > Tiped sad Send form mi

> > iPhone ;-)

> >

> > May your pressure be low!

> >

> > CE Grim MD

> > Specializing in Difficult

> > Hypertension

> >

> > On Mar 26, 2009, at 8:33 PM, Carol Christie <carolch@...

> > <mailto:carolch%40gil.com.au>> wrote:

> >

> > > Hi a

> > > I'm very pleased you and others are taking these initiatives.

> > > Congratulations to all concerned!

> > >

> > > General questions

> > > 1. Can a person have low potassium levels sufficient to cause ill

> > > effects, even when the blood analysis indicates " within normal

> range " ,

> > > and the blood has been taken according to the proper guidelines?

> > > 2. Are there any known links between PA and bowel polyposis?

> > > 3. Are there any known links between PA and spinal pain?

> > > 4.Are there any known links between PA and brain functioning?

> > > 5. Why is it that in some countries, doctors are wary of

> prescribing

> > > more than 50mg per day of spiro?

> > >

> > > Survey questions

> > > 1. Where you may have BP under control and potassium normalised

> > > through

> > > the use of spiro, what symptoms persist?

> > > 2. Have you had bowel polyps?

> > > 3. Do you have weakness in the back and legs such that unsupported

> > > walking is difficult?

> > > 4. Do you suffer from mental confusion/ foggy brain?

> > > 5. What dosage of spiro has proved most beneficial to you?

> > > 6. Have you ever been able to say, " At last, I'm feeling better " ?

> > >

> > > Carol

> > >

> > > a Hall wrote:

> > > >

> > > >

> > > > Again, I'd like to ask the group to contribute questions to the

> PA

> > > > survey that's being developed. Nobody here has questions they're

> > > > curious about regarding PA? Nobody has questions that they wish

> > > their

> > > > physician had asked them when they were searching for a

> diagnosis?

> > > >

> > > > a

> > > >

> > > >

> > >

> > >

> >

> >

[Guest guest]

RE Some Questions I should have asked my Doctors:

This is a somewhat rhetorical, but good list one might go through AFTER

making arrangements with another MD.

These are questions for an exit interview after you have already

decided to replace the MD. If he/she is smart, the MD will say I don't

have time for this today, meaning he is afraid you may be about to sue

him for malpractice.

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

=========

On Mar 30, 2009, at 1:03 AM, jwwright wrote:

> Some Questions I should have asked my Doctors:

>

> How many PA patients have you diagnosed and treated?

> Are you Board Certified?

> Have you ever heard of the DASH diet?

> If my renin is low and my aldosterone is high, are you suspicious of

> a diagnosis of PA? If no, why not?

> If my renin is low and my aldosterone is high, would I benefit from a

> trial of spiro to see if my blood pressure responds to it? If no, why

> not?

> Why are you referring me to a surgeon before seeing how my BP

> responds to a trial of spiro? (if appropriate)

> Why are you referring me to a surgeon before I have AVS done? (if

> appropriate)

[Guest guest]

I think you're right in defining separate databases and in this case simplifying

to a list.

I recall several items: one a database of patients and their meds, metabolics,

weight etc. Make that one set, perhaps with a patient code for privacy, maybe a

codename or initials. We have a limited capability for that in . I think I

started one a while back.

Another was a list of Drs in various places.

Another was a list of gripes (do that last).

hyperaldosteronism/database

click database>

notice we have a dr list (4). with 9 columns.

another: " Sleep/Awake Urine Output (Instructions in " Files " ) "

another: " steve test " sample

I just added a record to steve.

I also made test: take a look and see what we can do with that type of table.

Just trying to get a feel for what Dr Grim needs.

Regards

[hyperaldosteronism ] PA Survey Questions

> >

> >

> >

> > Again, I'd like to ask the group to contribute questions to the PA survey

that's being developed. Nobody here has questions they're curious about

regarding PA? Nobody has questions that they wish their physician had asked them

when they were searching for a diagnosis?

> >

> > a

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

BTW, that's someone else's post.

Regards

Re: PA Survey Questions

RE Some Questions I should have asked my Doctors:

This is a somewhat rhetorical, but good list one might go through AFTER

making arrangements with another MD.

These are questions for an exit interview after you have already

decided to replace the MD. If he/she is smart, the MD will say I don't

have time for this today, meaning he is afraid you may be about to sue

him for malpractice.

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

=========

On Mar 30, 2009, at 1:03 AM, jwwright wrote:

> Some Questions I should have asked my Doctors:

>

> How many PA patients have you diagnosed and treated?

> Are you Board Certified?

> Have you ever heard of the DASH diet?

> If my renin is low and my aldosterone is high, are you suspicious of

> a diagnosis of PA? If no, why not?

> If my renin is low and my aldosterone is high, would I benefit from a

> trial of spiro to see if my blood pressure responds to it? If no, why

> not?

> Why are you referring me to a surgeon before seeing how my BP

> responds to a trial of spiro? (if appropriate)

> Why are you referring me to a surgeon before I have AVS done? (if

> appropriate)

[Guest guest]

Here is what I am thinking:The ideal diagnostic protocol today consists of:Teaching pt to take own BP, if not high (<135) white coat HTN stop. if high (>135 at home) HTN.   If not on Dr Grim's combination of combinations then go to that. If fail then:1.  Stop all drugs for 2 wks (most drugs) to 3 months (if on spiro) or if never on drugs then continue below2.  Eat a high salt diet of at least 200 mM a day for a week then 3.  Collect a 24 hr urine for Na, K, creatinine, cortisol, catecholamines, aldosterone and the next day do a plasma K, aldosterone and plasma renin and calculate the plasma aldo/renin ratio.  Compare to normals for that lab.  If urine Na not 200 mM excretion repeat 2 and 3.  Cortisol high go to Cushing's workup If Catecholamines high go to Pheo workup.If family Hx of HTN and low K do genetic test for GRA.  Negative continue.  If BP is very high even on drugs do 14 day DASH trial. Do 24 hr urine at 14 days.  If urine Na and K compatible with compliance to DASH then add spironolactone, 25. Step up 25/wk.   If BP not better at 400 mg a day no PA.  Go to Dr Grim's combination of combinations (difficult HTN file) to try to get BP under control.  Add minoxidil if needed. If BP not better do renal angiogram.  If + do renal vein renins to decide on Rx. If BP not better in 1 month then no PA.If BP better taper other drugs and stay on DASH (monitor U Na and K to document diet adherence.  If suggestive of PA then do a spironolactone trial.  If BP does not improve then no PA in most cases. If BP improves then continue DASH and taper other drugs including spiro if possible.If not try eplerenone.  If works continue eplerenone.If cannot be tolerated then do CT.  If + and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).  If CT negative and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).If lateralizes then do surgery.  If no lateralization contact HTN expert to help manage BP. Maybe some one in our group can do a flow diagram of this and we can think it thru some more.CE Grim MD On Mar 27, 2009, at 7:47 PM, arthur springer wrote:U would prefer to see a competent diagnostic protocol first.asOn Mar 27, 2009, at 8:21 PM, a Hall wrote:> ,>    I agree with you 100%.  I emailed Dr. Grim earlier and suggested > that we split this into two different projects, the first being a > survey for those of us already diagnosed with PA, with the resulting > data to be used in a scientific paper about PA.  The second document > would be a joint effort between everyone here.  We could formulate a > questionaire in the "files" section of the group that would list > questions that in retrospect we wished we'd asked our doctors and the > questions  we think our doctors should have asked us on the road to > diagnosis.  It could save new members who think they might have PA a > lot of time, grief and money.  >  > a>> >> From: em5704 <em5704 >> Subject: Re: PA Survey Questions> To: hyperaldosteronism > Date: Friday, March 27, 2009, 8:00 PM>> These are all excellent questions, but they're based on the > assumption that the doctor would know about PA and be open to the > possibility that the patient could have it. And then, if the patient > has never heard about PA, and the doctor who is asking the questions > doesn't know diddly about PA, then the answers would mean nothing. You > see, it's like the blind leading the blind.>> For example, I had never heard of PA, didn't even know where my > adrenal gland was or what it did. For six years, I was treated by the > same doctor for HBP. I told her about the low K, but she ignored it. > She kept wanting me to go on a diuretic and I kept telling her that I > peed enough as it is. She never asked the followup question, "How many > times a day or night do you pee?" And I put down the excessive > urination as a perimenopausal symptom. I didn't realize it, but I was > sending her huge signals about what was wrong with me, which she > didn't know what to do with. So, I guess my question is, how do you > envision this survey being put to use? Will it be circulated to > primary care doctors? Sorry if I missed the explanation on the purpose > of this survey. I think it's a great idea to gather all of this > information together, but not sure what the plan is? What are we going > to do with it? >> > >> >> > Again, I'd like to ask the group to contribute questions to the PA > survey that's being developed. Nobody here has questions they're > curious about regarding PA? Nobody has questions that they wish their > physician had asked them when they were searching for a diagnosis?> >> > a> >>>

[Guest guest]

Wow! This is an excellent resource Dr.Grim. Can someone please put this on files so we can all access it easily? this information is so helpful for any person to take to their doctor for testing and diagnosis.Thanks so much Dr.Grim.

Farah  On Sat, Apr 25, 2009 at 11:15 PM, Clarence Grim <lowerbp2@...> wrote:

Here is what I am thinking:The ideal diagnostic protocol today consists of:Teaching pt to take own BP, if not high (<135) white coat HTN stop.

 if high (>135 at home) HTN.   If not on Dr Grim's combination of combinations then go to that. If fail then:1.  Stop all drugs for 2 wks (most drugs) to 3 months (if on spiro) or if never on drugs then continue below

2.  Eat a high salt diet of at least 200 mM a day for a week then 3.  Collect a 24 hr urine for Na, K, creatinine, cortisol, catecholamines, aldosterone and the next day do a plasma K, aldosterone and plasma renin and calculate the plasma aldo/renin ratio.  Compare to normals for that lab.  If urine Na not 200 mM excretion repeat 2 and 3. 

Cortisol high go to Cushing's workup If Catecholamines high go to Pheo workup.If family Hx of HTN and low K do genetic test for GRA.  Negative continue.  

If BP is very high even on drugs do 14 day DASH trial. Do 24 hr urine at 14 days.  If urine Na and K compatible with compliance to DASH then add spironolactone, 25. Step up 25/wk.  

If BP not better at 400 mg a day no PA.  Go to Dr Grim's combination of combinations (difficult HTN file) to try to get BP under control.  Add minoxidil if needed. If BP not better do renal angiogram.  If + do renal vein renins to decide on Rx.

If BP not better in 1 month then no PA.If BP better taper other drugs and stay on DASH (monitor U Na and K to document diet adherence.  If suggestive of PA then do a spironolactone trial.  If BP does not improve then no PA in most cases. 

If BP improves then continue DASH and taper other drugs including spiro if possible.If not try eplerenone.  If works continue eplerenone.If cannot be tolerated then do CT.  If + and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).

  If CT negative and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).If lateralizes then do surgery.  

If no lateralization contact HTN expert to help manage BP. Maybe some one in our group can do a flow diagram of this and we can think it thru some more.CE Grim MD

 On Mar 27, 2009, at 7:47 PM, arthur springer wrote:

U would prefer to see a competent diagnostic protocol first.asOn Mar 27, 2009, at 8:21 PM, a Hall wrote:> ,>    I agree with you 100%.  I emailed Dr. Grim earlier and suggested 

> that we split this into two different projects, the first being a > survey for those of us already diagnosed with PA, with the resulting > data to be used in a scientific paper about PA.  The second document 

> would be a joint effort between everyone here.  We could formulate a > questionaire in the " files " section of the group that would list > questions that in retrospect we wished we'd asked our doctors and the 

> questions  we think our doctors should have asked us on the road to > diagnosis.  It could save new members who think they might have PA a > lot of time, grief and money.  

>  > a>>

>> From: em5704 <em5704@...>> Subject: Re: PA Survey Questions

> To: hyperaldosteronism > Date: Friday, March 27, 2009, 8:00 PM

>> These are all excellent questions, but they're based on the > assumption that the doctor would know about PA and be open to the > possibility that the patient could have it. And then, if the patient 

> has never heard about PA, and the doctor who is asking the questions > doesn't know diddly about PA, then the answers would mean nothing. You > see, it's like the blind leading the blind.

>> For example, I had never heard of PA, didn't even know where my > adrenal gland was or what it did. For six years, I was treated by the > same doctor for HBP. I told her about the low K, but she ignored it. 

> She kept wanting me to go on a diuretic and I kept telling her that I > peed enough as it is. She never asked the followup question, " How many > times a day or night do you pee? " And I put down the excessive 

> urination as a perimenopausal symptom. I didn't realize it, but I was > sending her huge signals about what was wrong with me, which she > didn't know what to do with. So, I guess my question is, how do you 

> envision this survey being put to use? Will it be circulated to > primary care doctors? Sorry if I missed the explanation on the purpose > of this survey. I think it's a great idea to gather all of this 

> information together, but not sure what the plan is? What are we going > to do with it? >> > >> >> > Again, I'd like to ask the group to contribute questions to the PA > survey that's being developed. Nobody here has questions they're 

> curious about regarding PA? Nobody has questions that they wish their > physician had asked them when they were searching for a diagnosis?> >> > a> >>

>

[Guest guest]

A flow decision map would be better. Cant work on it now.CE GrimOn Apr 26, 2009, at 10:11 PM, Farah Rahbar wrote:Wow! This is an excellent resource Dr.Grim. Can someone please put this on files so we can all access it easily? this information is so helpful for any person to take to their doctor for testing and diagnosis.Thanks so much Dr.Grim.Farah  On Sat, Apr 25, 2009 at 11:15 PM, Clarence Grim <lowerbp2mac> wrote:Here is what I am thinking:The ideal diagnostic protocol today consists of:Teaching pt to take own BP, if not high (<135) white coat HTN stop. if high (>135 at home) HTN.   If not on Dr Grim's combination of combinations then go to that. If fail then:1.  Stop all drugs for 2 wks (most drugs) to 3 months (if on spiro) or if never on drugs then continue below2.  Eat a high salt diet of at least 200 mM a day for a week then 3.  Collect a 24 hr urine for Na, K, creatinine, cortisol, catecholamines, aldosterone and the next day do a plasma K, aldosterone and plasma renin and calculate the plasma aldo/renin ratio.  Compare to normals for that lab.  If urine Na not 200 mM excretion repeat 2 and 3.  Cortisol high go to Cushing's workup If Catecholamines high go to Pheo workup.If family Hx of HTN and low K do genetic test for GRA.  Negative continue.  If BP is very high even on drugs do 14 day DASH trial. Do 24 hr urine at 14 days.  If urine Na and K compatible with compliance to DASH then add spironolactone, 25. Step up 25/wk.   If BP not better at 400 mg a day no PA.  Go to Dr Grim's combination of combinations (difficult HTN file) to try to get BP under control.  Add minoxidil if needed. If BP not better do renal angiogram.  If + do renal vein renins to decide on Rx. If BP not better in 1 month then no PA.If BP better taper other drugs and stay on DASH (monitor U Na and K to document diet adherence.  If suggestive of PA then do a spironolactone trial.  If BP does not improve then no PA in most cases. If BP improves then continue DASH and taper other drugs including spiro if possible.If not try eplerenone.  If works continue eplerenone.If cannot be tolerated then do CT.  If + and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).  If CT negative and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).If lateralizes then do surgery.  If no lateralization contact HTN expert to help manage BP. Maybe some one in our group can do a flow diagram of this and we can think it thru some more.CE Grim MD On Mar 27, 2009, at 7:47 PM, arthur springer wrote:U would prefer to see a competent diagnostic protocol first.asOn Mar 27, 2009, at 8:21 PM, a Hall wrote:> ,>    I agree with you 100%.  I emailed Dr. Grim earlier and suggested > that we split this into two different projects, the first being a > survey for those of us already diagnosed with PA, with the resulting > data to be used in a scientific paper about PA.  The second document > would be a joint effort between everyone here.  We could formulate a > questionaire in the "files" section of the group that would list > questions that in retrospect we wished we'd asked our doctors and the > questions  we think our doctors should have asked us on the road to > diagnosis.  It could save new members who think they might have PA a > lot of time, grief and money.  >  > a>> >> From: em5704 <em5704 >> Subject: Re: PA Survey Questions> To: hyperaldosteronism > Date: Friday, March 27, 2009, 8:00 PM>> These are all excellent questions, but they're based on the > assumption that the doctor would know about PA and be open to the > possibility that the patient could have it. And then, if the patient > has never heard about PA, and the doctor who is asking the questions > doesn't know diddly about PA, then the answers would mean nothing. You > see, it's like the blind leading the blind.>> For example, I had never heard of PA, didn't even know where my > adrenal gland was or what it did. For six years, I was treated by the > same doctor for HBP. I told her about the low K, but she ignored it. > She kept wanting me to go on a diuretic and I kept telling her that I > peed enough as it is. She never asked the followup question, "How many > times a day or night do you pee?" And I put down the excessive > urination as a perimenopausal symptom. I didn't realize it, but I was > sending her huge signals about what was wrong with me, which she > didn't know what to do with. So, I guess my question is, how do you > envision this survey being put to use? Will it be circulated to > primary care doctors? Sorry if I missed the explanation on the purpose > of this survey. I think it's a great idea to gather all of this > information together, but not sure what the plan is? What are we going > to do with it? >> > >> >> > Again, I'd like to ask the group to contribute questions to the PA > survey that's being developed. Nobody here has questions they're > curious about regarding PA? Nobody has questions that they wish their > physician had asked them when they were searching for a diagnosis?> >> > a> >>>

[Guest guest]

Hi Dr Grim

Is it better to go on the spiro challenge before doing the AVS?

I got my MRI results today and it confimed I have a nodule in the right gland. My doctor asked me whether i wanted to go on the spiro or do the AVS. He said it was a personal choice. I dont agree with this.

I have been on verapamil for the past 3 weeks and BP was 160/90 or even higher. Doctor added 1mg of Hytrin today. The adalat 60mg used to have better Bp results but created a high pulse of 88 -100. I am following a low sodium diet. the K is at 3.4 with 100 meq of klyte.

Regards,

Suzzette>> From: em5704 <em5704 (DOT) com>> Subject: [hyperaldosteronism ] Re: PA Survey Questions> hyperaldosteronism> Date: Friday, March 27, 2009, 8:00 PM>> These are all excellent questions, but they're based on the > assumption that the doctor would know about PA and be open to the > possibility that the patient could have it. And then, if the patient > has never heard about PA, and the doctor who is asking the questions > doesn't know diddly about PA, then the answers would mean nothing. You > see, it's like the blind leading the blind.>> For example, I had never heard of PA, didn't even know where my > adrenal gland was or what it did. For six years, I was treated by the > same doctor for HBP. I told her about the low K, but she ignored it. > She kept wanting me to go on a diuretic and I kept telling her that I > peed enough as it is. She never asked the followup question, "How many > times a day or night do you pee?" And I put down the excessive > urination as a perimenopausal symptom. I didn't realize it, but I was > sending her huge signals about what was wrong with me, which she > didn't know what to do with. So, I guess my question

is, how do you > envision this survey being put to use? Will it be circulated to > primary care doctors? Sorry if I missed the explanation on the purpose > of this survey. I think it's a great idea to gather all of this > information together, but not sure what the plan is? What are we going > to do with it? >> > >> >> > Again, I'd like to ask the group to contribute questions to the PA > survey that's being developed. Nobody here has questions they're > curious about regarding PA? Nobody has questions that they wish their > physician had asked them when they were searching for a diagnosis?> >> > a> >>>

[Guest guest]

AVS carries some risk and must  be done by very experienced people and with ACTH.  The benefit is that if the aldo comes from one side you will likely be improved after surgery.  Without AVS the chances of improvement drop to maybe 50%.On the other hand if you do well on spiro or eplerenone then you do not need surgery at this time IMHO.If you need to do AVS in future you will need to be off spiro for at least 6 weeks before.Read my article to see why the BP Rx you have been on does not work in PA. Take to your Dr if you have not.Do you have your renin and aldo numbers and normal values.DASHing to the max must be documented by 24 hr urines for Na and K or at least overnight urine collection for Na and K.   On Apr 27, 2009, at 9:09 PM, Sue james wrote:Hi Dr Grim  Is it better to go on the spiro challenge before doing the AVS? I got my MRI results today and it confimed I have a nodule in the right gland. My doctor asked me whether i wanted to go on the spiro or do the AVS. He said it was a personal choice. I dont agree with this. I have been on verapamil for the past 3 weeks and BP was 160/90 or even higher. Doctor added 1mg of Hytrin today. The adalat 60mg used to have better Bp results but created a high pulse of 88 -100. I am following a low sodium diet. the K is at 3.4 with 100 meq of klyte.  Regards,Suzzette--- On Sun, 4/26/09, Clarence Grim <lowerbp2mac> wrote:From: Clarence Grim <lowerbp2mac>Subject: Re: Re: PA Survey Questionshyperaldosteronism Received: Sunday, April 26, 2009, 12:15 AMHere is what I am thinking:The ideal diagnostic protocol today consists of:Teaching pt to take own BP, if not high (<135) white coat HTN stop. if high (>135 at home) HTN.   If not on Dr Grim's combination of combinations then go to that. If fail then:1.  Stop all drugs for 2 wks (most drugs) to 3 months (if on spiro)or if never on drugs then continue below2.  Eat a high salt diet of at least 200 mM a day for a week then 3.  Collect a 24 hr urine for Na, K, creatinine, cortisol, catecholamines, aldosterone and the next day do a plasma K, aldosterone and plasma renin and calculate the plasma aldo/renin ratio.  Compare to normals for that lab.  If urine Na not 200 mM excretion repeat 2 and 3. Cortisol high go to Cushing's workupIf Catecholamines high go to Pheo workup.If family Hx of HTN and low K do genetic test for GRA.  Negative continue.  If BP is very high even on drugs do 14 day DASH trial. Do 24 hr urine at 14 days.  If urine Na and K compatible with compliance to DASH then add spironolactone, 25. Step up 25/wk.  If BP not better at 400 mg a day no PA.  Go to Dr Grim's combination of combinations (difficult HTN file) to try to get BP under control.  Add minoxidil if needed. If BP not better do renal angiogram.  If + do renal vein renins to decide on Rx.If BP not better in 1 month then no PA.If BP better taper other drugs and stay on DASH (monitor U Na and K to document diet adherence.  If suggestive of PA then do a spironolactone trial.  If BP does not improve then no PA in most cases. If BP improves then continue DASH and taper other drugs including spiro if possible.If not try eplerenone.  If works continue eplerenone.If cannot be tolerated then do CT.  If + and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).  If CT negative and aldo renin 24 hr urine suggests PA then do AVS (with ACTH).If lateralizes then do surgery.  If no lateralization contact HTN expert to help manage BP. Maybe some one in our group can do a flow diagram of this and we can think it thru some more.CE Grim MD On Mar 27, 2009, at 7:47 PM, arthur springer wrote:U would prefer to see a competent diagnostic protocol first.asOn Mar 27, 2009, at 8:21 PM, a Hall wrote:> ,>    I agree with you 100%.  I emailed Dr. Grim earlier and suggested > that we split this into two different projects, the first being a > survey for those of us already diagnosed with PA, with the resulting > data to be used in a scientific paper about PA.  The second document > would be a joint effort between everyone here.  We could formulate a > questionaire in the "files" section of the group that would list > questions that in retrospect we wished we'd asked our doctors and the > questions  we think our doctors should have asked us on the road to > diagnosis.  It could save new members who think they might have PA a > lot of time, grief and money.  >  > a>> >> From: em5704 <em5704 (DOT) com>> Subject: [hyperaldosteronism ] Re: PA Survey Questions> To: hyperaldosteronism> Date: Friday, March 27, 2009, 8:00 PM>> These are all excellent questions, but they're based on the > assumption that the doctor would know about PA and be open to the > possibility that the patient could have it. And then, if the patient > has never heard about PA, and the doctor who is asking the questions > doesn't know diddly about PA, then the answers would mean nothing. You > see, it's like the blind leading the blind.>> For example, I had never heard of PA, didn't even know where my > adrenal gland was or what it did. For six years, I was treated by the > same doctor for HBP. I told her about the low K, but she ignored it. > She kept wanting me to go on a diuretic and I kept telling her that I > peed enough as it is. She never asked the followup question, "How many > times a day or night do you pee?" And I put down the excessive > urination as a perimenopausal symptom. I didn't realize it, but I was > sending her huge signals about what was wrong with me, which she > didn't know what to do with. So, I guess my question is, how do you > envision this survey being put to use? Will it be circulated to > primary care doctors? Sorry if I missed the explanation on the purpose > of this survey. I think it's a great idea to gather all of this > information together, but not sure what the plan is? What are we going > to do with it? >> > >> >> > Again, I'd like to ask the group to contribute questions to the PA > survey that's being developed. Nobody here has questions they're > curious about regarding PA? Nobody has questions that they wish their > physician had asked them when they were searching for a diagnosis?> >> > a> >>>

[Guest guest]

If I had it to do over again, I would have gone for AVS before

ever starting spiro. Going off

spiro for six weeks was extremely hard on me. If you would never want surgery, then there

is no reason to have AVS

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

..

If

you need to do AVS in future you will need to be off spiro for at least 6 weeks

before.

On

Apr 27, 2009, at 9:09 PM, Sue james wrote:

Is

it better to go on the spiro challenge before doing the AVS?

[Guest guest]

Just make sure your insurance company will cover it first… I went

off the spiro for the intended 6 weeks and ended up being off for several

months while the Dr’s office argued with my insurance company.

From:

hyperaldosteronism [mailto:hyperaldosteronism ] On

Behalf Of Valarie

Sent: Tuesday, April 28, 2009 9:33 AM

hyperaldosteronism

Subject: RE: Re: PA Survey Questions

If I had it to do over again, I would

have gone for AVS before ever starting spiro. Going off spiro for six

weeks was extremely hard on me. If you would never want surgery, then

there is no reason to have AVS

Val

From:

hyperaldosteronism [mailto:hyperaldosteronism ] On

Behalf Of Clarence Grim

..

If

you need to do AVS in future you will need to be off spiro for at least 6 weeks

before.

On

Apr 27, 2009, at 9:09 PM, Sue james wrote:

Is

it better to go on the spiro challenge before doing the AVS?