Re: New to this, already frustrated, and very confused...please help?

January 15, 2012

Was born in LA, educated there (Pepperdine,UCLA, Institiute,etc), got

married and moved to GA. So in Atlanta now...know anyone here for endo, neph,

or AVS, or adrenal surgeon?? Also ins is BCBS PPO. Also have left ventricular

hypertrophy and mitral valve regurgitation. First script for low potassium was

3/2010 for 3.1 level. At the time, also had cytomellago virus and previous to

that EBV. In 2006, I fainted, dropped to the ground in a restaurant, broke my

leg in the process. Had a neuro and cardio workup for it, but no one did labs

for potassium. Neuro and cardio workup just yielded lipid issues, but nothing

else. Never knew why that happened, but am now wondering if I had low potassium

then...? I know when it's low, I stay low to the ground! So, since 2006, I've

developed LVH, MVR, all while DASHing under Superko's supervision. Lipids are

now fine, lost 50 lbs., BP was fine until recently though. Any case, thanks for

the feedback, let me know if you are a BCBS provider...is there a cpt code for

your consulting?

> > > >

> > > > I have low potassium (3.1 at onset) (for about 5 months now), and am

currently taking 4 tabs of k tabs/daily to deal with that.

> > > >

> > > > I also have very high blood pressure since around the same time. I am

taking 100mg of Losartin and Norvasc as well. They are bringing it down to

145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but

tanked the potassium and makes me feel dizzy.

> > > >

> > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for

four days then had labs drawn. Three doctors have looked at the following

results and have all said different things about them.

> > > >

> > > > Plasma Renin activity .17

> > > > Plasma Aldosterone 15.2

> > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > >

> > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for

hyperaldosteronism and referred me to a nephrologist to manage the blood

pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > >

> > > > Doctor 2 said that the labs absolutely confirm secondary hypertension

and hyperaldosteronism and referred me to doc 3 for further testing to determine

the rest of the story...(adenoma, pheo, AVS, etc)

> > > >

> > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw

the above salt loading labs from doc 1, said I did not have hyperaldosteronism,

and they will let me know what the rest of their labs reveal as to what I should

do about the blood pressure or any next step.

> > > >

> > > > I have lots of the symptomology that a lot of you have written about;

brain fog, thirst, flank pain, when I exercise I crash and have to take breaks,

etc.

> > > >

> > > > How is it possible for all three to have different takes on the same

labs? Anybody here know what these labs mean? Any suggestions? I am sooo

confused!

> > > >

> > > > Also, I am wondering...(obviously a newbie, here) why, if you have an

ademoma or nodule/tumor that produces too much aldosterone, why do they take the

whole adrenal gland? Why not do a lumpectomy type of thing and just take the

nodule/tumor?

> > > >

> > > > I feel for all of you who have suffered and dealt with this stuff for so

long and quite frankly, this is a club I don't really want to belong to, but I

am grateful that you are all here and have generously blogged, written, and

shared your experiences so that all of us newbies can learn and hopefully

benefit. Oh, wise ones, I beckon you!

> > > >

> > >

> >

>

January 15, 2012

labs from blood draw and urine ordered are plasma aldosterone, plasma renin,

plasma metanephrine, plasma catacholamine, 24 hour urine metanephrine,

catacholamine, aldosterone, cell met?, complete metabolic panel (smac). Does

serum smac results count? Or do I need a urine one? Is there a home test for

that at Walgreens?

> > > > > >

> > > > > > I have low potassium (3.1 at onset) (for about 5 months now), and am

currently taking 4 tabs of k tabs/daily to deal with that.

> > > > > >

> > > > > > I also have very high blood pressure since around the same time. I

am taking 100mg of Losartin and Norvasc as well. They are bringing it down to

145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but

tanked the potassium and makes me feel dizzy.

> > > > > >

> > > > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for

four days then had labs drawn. Three doctors have looked at the following

results and have all said different things about them.

> > > > > >

> > > > > > Plasma Renin activity .17

> > > > > > Plasma Aldosterone 15.2

> > > > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > > > >

> > > > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline

for hyperaldosteronism and referred me to a nephrologist to manage the blood

pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > > > >

> > > > > > Doctor 2 said that the labs absolutely confirm secondary

hypertension and hyperaldosteronism and referred me to doc 3 for further testing

to determine the rest of the story...(adenoma, pheo, AVS, etc)

> > > > > >

> > > > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he

saw the above salt loading labs from doc 1, said I did not have

hyperaldosteronism, and they will let me know what the rest of their labs reveal

as to what I should do about the blood pressure or any next step.

> > > > > >

> > > > > > I have lots of the symptomology that a lot of you have written

about; brain fog, thirst, flank pain, when I exercise I crash and have to take

breaks, etc.

> > > > > >

> > > > > > How is it possible for all three to have different takes on the same

labs? Anybody here know what these labs mean? Any suggestions? I am sooo

confused!

> > > > > >

> > > > > > Also, I am wondering...(obviously a newbie, here) why, if you have

an ademoma or nodule/tumor that produces too much aldosterone, why do they take

the whole adrenal gland? Why not do a lumpectomy type of thing and just take the

nodule/tumor?

> > > > > >

> > > > > > I feel for all of you who have suffered and dealt with this stuff

for so long and quite frankly, this is a club I don't really want to belong to,

but I am grateful that you are all here and have generously blogged, written,

and shared your experiences so that all of us newbies can learn and hopefully

benefit. Oh, wise ones, I beckon you!

> > > > > >

> > > > >

> > > >

> > >

> >

>

January 15, 2012

Atlanta, GA...thanks.

> > >

> > > My whole, long story can be found in at left in Files > Conns Stories >

> > > msmith1928 PA story final 11-4-11.pdf

> > > <http://f1.grp.fs.com/v1/MEESTwV4fkEsiXx6OQLWsVH2UGQRVjDsJWOk7lHc04\

> > > hCokv9iYJgSJIGNlVzmvTembApIksRcpy3XiPzESFNNrifEwfuQP2x_g4YzqYTTg/Conns%2\

> > > 0Stories/msmith1928%20PA%20story%20final%2011-4-11.pdf> - not sure if

> > > that link will work for you or not.

> > >

> > > A few answers:

> > >

> > > How does work go with all of you? Are you able to work with all of this?

> > > How much time off of work is necessary?

> > >

> > > I worked throughout the entire diagnostic process, from misdiagnosis in

> > > 2001 through adrenalectomy in 2011. Fortunately I've got a really

> > > flexible schedule and am often able to work from home. I was also

> > > fortunate in that I *could* work - there are some here who have it so

> > > much worse than I ever did. Truth be told, I didn't realize that I felt

> > > sick until I wasn't sick anymore.

> > >

> > > How much time off for just AVS? I can assume 4-6 weeks off work with

> > > surgery, but is that true for the laparoscopy as

> > > well?

> > >

> > > I had AVS twice. Each time it was done on a Friday, which I took off

> > > from work; I was back to work for a half-day the next Monday and

> > > full-time thereafter. I was completely unconscious for each AVS

> > > procedure and really, the hardest part of the recovery was getting past

> > > the nausea and grogginess from the anesthesia.

> > >

> > > I took two weeks off work for my surgery. I felt great immediately upon

> > > waking up in the recovery room, and was really anxious to get back to

> > > " normal life " - looking back, I probably should have taken things a

> > > little slower. I ended up having a setback about 4 weeks post-op where I

> > > did something to the incision site - either ripped the stitches, damaged

> > > the scar tissue, pulled a muscle, or all of the above, either in yoga

> > > class or while doing some lifting/carrying.

> > >

> > > Are you back functioning normally yet?

> > >

> > > As of the first of the year, yes! After the aforementioned setback, I

> > > *really* slowed down for a month. That pain took longer to go away than

> > > the initial post-op pain, but now I'm pain free and doing everything as

> > > normal again.

> > >

> > > Do you lose or gain weight or does it impact that? Seems like it would,

> > > given it's connected to cortisol levels, but

> > > ????

> > >

> > > Weight has been a... challenging aspect of this disease for me. After an

> > > entire lifetime of being underweight/really thin/never over 100 pounds,

> > > the year I started having symptoms my almost doubled within a year (89

> > > pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed with

> > > gluten and fructose intolerance, and by default began eating low-carb

> > > since that was all I could eat! I lost 50 pounds in 3 months and kept it

> > > off, but it was a real struggle to keep my weight in the 120-125 zone.

> > > Considering how little I eat and how restricted my diet was, this never

> > > made sense to me. I was told that I was insulin resistant and that I

> > > would have to struggle with my weight for the rest of my life.

> > >

> > > Interestingly, since the surgery, I've actually been eating more than

> > > when I still had the tumor (I was on an extremely low sodium diet and it

> > > was really boring and I ate just enough to stay alive!) but even though

> > > I'm eating more, I keep losing weight. Right now I'm down to 111,

> > > without even trying. At least for me, there was a definite connection

> > > between PA and weight, but I don't fully understand what impacted what.

> > >

> > > And what's the rest of your story? How did you go from UCLA dude

> > > negating the diagnosis to surgery? Did you just go with the

> > > nephrologist?

> > >

> > > The nephrologist was the PA expert, so I trusted his opinion. I got the

> > > sense that the endocrinologist was just not up to speed on PA and had a

> > > little bit too much ego to allow himself to learn. After the (second)

> > > AVS there was no doubt that I had PA.

> > >

> > > Did you have pain on the side where the adenoma was?

> > >

> > > Not that I know of. But looking back to 2001, when I first had symptoms,

> > > I used to get a lot of " stomach pain " on my left side only. This ended

> > > up being attributed to digestive issues from my then-undiagnosed food

> > > intolerances, but I kind of wonder why it was always only on the left.

> > >

> >

>

January 15, 2012

No, have not been scanned. Doc's 2 and 3 both agree on this one. They both say

that adenomas and pheos, are better diagnosed with labs, then AVS because you

can often see nodules, etc on a scan, but they may or may not be producing

problematic hormones. Further, they say, that AVS is the " gold standard " for

differentiating between hyperplasia, tumors and bilateral or unilateral issues.

Doc 1, didn't address AVS or scanning, just said repeat salt loading labwork in

3 months. Gyno was appalled that I hadn't been scanned and sent me to her

husband, Doc 3, but he didn't concur with her.

> > > >

> > > > I have low potassium (3.1 at onset) (for about 5 months now), and am

currently taking 4 tabs of k tabs/daily to deal with that.

> > > >

> > > > I also have very high blood pressure since around the same time. I am

taking 100mg of Losartin and Norvasc as well. They are bringing it down to

145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but

tanked the potassium and makes me feel dizzy.

> > > >

> > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for

four days then had labs drawn. Three doctors have looked at the following

results and have all said different things about them.

> > > >

> > > > Plasma Renin activity .17

> > > > Plasma Aldosterone 15.2

> > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > >

> > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for

hyperaldosteronism and referred me to a nephrologist to manage the blood

pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > >

> > > > Doctor 2 said that the labs absolutely confirm secondary hypertension

and hyperaldosteronism and referred me to doc 3 for further testing to determine

the rest of the story...(adenoma, pheo, AVS, etc)

> > > >

> > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw

the above salt loading labs from doc 1, said I did not have hyperaldosteronism,

and they will let me know what the rest of their labs reveal as to what I should

do about the blood pressure or any next step.

> > > >

> > > > I have lots of the symptomology that a lot of you have written about;

brain fog, thirst, flank pain, when I exercise I crash and have to take breaks,

etc.

> > > >

> > > > How is it possible for all three to have different takes on the same

labs? Anybody here know what these labs mean? Any suggestions? I am sooo

confused!

> > > >

> > > > Also, I am wondering...(obviously a newbie, here) why, if you have an

ademoma or nodule/tumor that produces too much aldosterone, why do they take the

whole adrenal gland? Why not do a lumpectomy type of thing and just take the

nodule/tumor?

> > > >

> > > > I feel for all of you who have suffered and dealt with this stuff for so

long and quite frankly, this is a club I don't really want to belong to, but I

am grateful that you are all here and have generously blogged, written, and

shared your experiences so that all of us newbies can learn and hopefully

benefit. Oh, wise ones, I beckon you!

> > > >

> > >

> >

>

January 15, 2012

Here is a list of Dr from the ASH site that should have a understanding on PA.

Maybe Dr grim knows one of them.

Bassey Ephraim MD Atlanta Nephrology

Doyle Joyce MD Atlanta Adult Medicine, Primary Care

Hall W. Dallas MD Atlanta

Lea Janice MD Atlanta Adult Medicine, Nephrology

Obialo Chamberlain MBBS Atlanta Adult Medicine, Nephrology

Onwuanyi Anekwe MBBS Atlanta Adult Medicine, Cardiology

MD Atlanta Adult Medicine, Endocrinology, Consultations Only

Schuck Harvey MD Atlanta Pharmaceutical Research

Wells MD, MBA Atlanta Adult Medicine, Nephrology

> > > >

> > > > My whole, long story can be found in at left in Files > Conns Stories >

> > > > msmith1928 PA story final 11-4-11.pdf

> > > >

<http://f1.grp.fs.com/v1/MEESTwV4fkEsiXx6OQLWsVH2UGQRVjDsJWOk7lHc04\

> > > >

hCokv9iYJgSJIGNlVzmvTembApIksRcpy3XiPzESFNNrifEwfuQP2x_g4YzqYTTg/Conns%2\

> > > > 0Stories/msmith1928%20PA%20story%20final%2011-4-11.pdf> - not sure if

> > > > that link will work for you or not.

> > > >

> > > > A few answers:

> > > >

> > > > How does work go with all of you? Are you able to work with all of this?

> > > > How much time off of work is necessary?

> > > >

> > > > I worked throughout the entire diagnostic process, from misdiagnosis in

> > > > 2001 through adrenalectomy in 2011. Fortunately I've got a really

> > > > flexible schedule and am often able to work from home. I was also

> > > > fortunate in that I *could* work - there are some here who have it so

> > > > much worse than I ever did. Truth be told, I didn't realize that I felt

> > > > sick until I wasn't sick anymore.

> > > >

> > > > How much time off for just AVS? I can assume 4-6 weeks off work with

> > > > surgery, but is that true for the laparoscopy as

> > > > well?

> > > >

> > > > I had AVS twice. Each time it was done on a Friday, which I took off

> > > > from work; I was back to work for a half-day the next Monday and

> > > > full-time thereafter. I was completely unconscious for each AVS

> > > > procedure and really, the hardest part of the recovery was getting past

> > > > the nausea and grogginess from the anesthesia.

> > > >

> > > > I took two weeks off work for my surgery. I felt great immediately upon

> > > > waking up in the recovery room, and was really anxious to get back to

> > > > " normal life " - looking back, I probably should have taken things a

> > > > little slower. I ended up having a setback about 4 weeks post-op where I

> > > > did something to the incision site - either ripped the stitches, damaged

> > > > the scar tissue, pulled a muscle, or all of the above, either in yoga

> > > > class or while doing some lifting/carrying.

> > > >

> > > > Are you back functioning normally yet?

> > > >

> > > > As of the first of the year, yes! After the aforementioned setback, I

> > > > *really* slowed down for a month. That pain took longer to go away than

> > > > the initial post-op pain, but now I'm pain free and doing everything as

> > > > normal again.

> > > >

> > > > Do you lose or gain weight or does it impact that? Seems like it would,

> > > > given it's connected to cortisol levels, but

> > > > ????

> > > >

> > > > Weight has been a... challenging aspect of this disease for me. After an

> > > > entire lifetime of being underweight/really thin/never over 100 pounds,

> > > > the year I started having symptoms my almost doubled within a year (89

> > > > pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed with

> > > > gluten and fructose intolerance, and by default began eating low-carb

> > > > since that was all I could eat! I lost 50 pounds in 3 months and kept it

> > > > off, but it was a real struggle to keep my weight in the 120-125 zone.

> > > > Considering how little I eat and how restricted my diet was, this never

> > > > made sense to me. I was told that I was insulin resistant and that I

> > > > would have to struggle with my weight for the rest of my life.

> > > >

> > > > Interestingly, since the surgery, I've actually been eating more than

> > > > when I still had the tumor (I was on an extremely low sodium diet and it

> > > > was really boring and I ate just enough to stay alive!) but even though

> > > > I'm eating more, I keep losing weight. Right now I'm down to 111,

> > > > without even trying. At least for me, there was a definite connection

> > > > between PA and weight, but I don't fully understand what impacted what.

> > > >

> > > > And what's the rest of your story? How did you go from UCLA dude

> > > > negating the diagnosis to surgery? Did you just go with the

> > > > nephrologist?

> > > >

> > > > The nephrologist was the PA expert, so I trusted his opinion. I got the

> > > > sense that the endocrinologist was just not up to speed on PA and had a

> > > > little bit too much ego to allow himself to learn. After the (second)

> > > > AVS there was no doubt that I had PA.

> > > >

> > > > Did you have pain on the side where the adenoma was?

> > > >

> > > > Not that I know of. But looking back to 2001, when I first had symptoms,

> > > > I used to get a lot of " stomach pain " on my left side only. This ended

> > > > up being attributed to digestive issues from my then-undiagnosed food

> > > > intolerances, but I kind of wonder why it was always only on the left.

> > > >

> > >

> >

>

January 15, 2012

If you put the names and there MD or what ever they have after there name in

search you can find a lot about them. Looks like some very good MD here. No sure

if Hall W. Dallas is still practicing.

> > > > >

> > > > > My whole, long story can be found in at left in Files > Conns Stories

>

> > > > > msmith1928 PA story final 11-4-11.pdf

> > > > >

<http://f1.grp.fs.com/v1/MEESTwV4fkEsiXx6OQLWsVH2UGQRVjDsJWOk7lHc04\

> > > > >

hCokv9iYJgSJIGNlVzmvTembApIksRcpy3XiPzESFNNrifEwfuQP2x_g4YzqYTTg/Conns%2\

> > > > > 0Stories/msmith1928%20PA%20story%20final%2011-4-11.pdf> - not sure

if

> > > > > that link will work for you or not.

> > > > >

> > > > > A few answers:

> > > > >

> > > > > How does work go with all of you? Are you able to work with all of

this?

> > > > > How much time off of work is necessary?

> > > > >

> > > > > I worked throughout the entire diagnostic process, from misdiagnosis

in

> > > > > 2001 through adrenalectomy in 2011. Fortunately I've got a really

> > > > > flexible schedule and am often able to work from home. I was also

> > > > > fortunate in that I *could* work - there are some here who have it so

> > > > > much worse than I ever did. Truth be told, I didn't realize that I

felt

> > > > > sick until I wasn't sick anymore.

> > > > >

> > > > > How much time off for just AVS? I can assume 4-6 weeks off work with

> > > > > surgery, but is that true for the laparoscopy as

> > > > > well?

> > > > >

> > > > > I had AVS twice. Each time it was done on a Friday, which I took off

> > > > > from work; I was back to work for a half-day the next Monday and

> > > > > full-time thereafter. I was completely unconscious for each AVS

> > > > > procedure and really, the hardest part of the recovery was getting

past

> > > > > the nausea and grogginess from the anesthesia.

> > > > >

> > > > > I took two weeks off work for my surgery. I felt great immediately

upon

> > > > > waking up in the recovery room, and was really anxious to get back to

> > > > > " normal life " - looking back, I probably should have taken things a

> > > > > little slower. I ended up having a setback about 4 weeks post-op where

I

> > > > > did something to the incision site - either ripped the stitches,

damaged

> > > > > the scar tissue, pulled a muscle, or all of the above, either in yoga

> > > > > class or while doing some lifting/carrying.

> > > > >

> > > > > Are you back functioning normally yet?

> > > > >

> > > > > As of the first of the year, yes! After the aforementioned setback, I

> > > > > *really* slowed down for a month. That pain took longer to go away

than

> > > > > the initial post-op pain, but now I'm pain free and doing everything

as

> > > > > normal again.

> > > > >

> > > > > Do you lose or gain weight or does it impact that? Seems like it

would,

> > > > > given it's connected to cortisol levels, but

> > > > > ????

> > > > >

> > > > > Weight has been a... challenging aspect of this disease for me. After

an

> > > > > entire lifetime of being underweight/really thin/never over 100

pounds,

> > > > > the year I started having symptoms my almost doubled within a year (89

> > > > > pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed

with

> > > > > gluten and fructose intolerance, and by default began eating low-carb

> > > > > since that was all I could eat! I lost 50 pounds in 3 months and kept

it

> > > > > off, but it was a real struggle to keep my weight in the 120-125 zone.

> > > > > Considering how little I eat and how restricted my diet was, this

never

> > > > > made sense to me. I was told that I was insulin resistant and that I

> > > > > would have to struggle with my weight for the rest of my life.

> > > > >

> > > > > Interestingly, since the surgery, I've actually been eating more than

> > > > > when I still had the tumor (I was on an extremely low sodium diet and

it

> > > > > was really boring and I ate just enough to stay alive!) but even

though

> > > > > I'm eating more, I keep losing weight. Right now I'm down to 111,

> > > > > without even trying. At least for me, there was a definite connection

> > > > > between PA and weight, but I don't fully understand what impacted

what.

> > > > >

> > > > > And what's the rest of your story? How did you go from UCLA dude

> > > > > negating the diagnosis to surgery? Did you just go with the

> > > > > nephrologist?

> > > > >

> > > > > The nephrologist was the PA expert, so I trusted his opinion. I got

the

> > > > > sense that the endocrinologist was just not up to speed on PA and had

a

> > > > > little bit too much ego to allow himself to learn. After the (second)

> > > > > AVS there was no doubt that I had PA.

> > > > >

> > > > > Did you have pain on the side where the adenoma was?

> > > > >

> > > > > Not that I know of. But looking back to 2001, when I first had

symptoms,

> > > > > I used to get a lot of " stomach pain " on my left side only. This ended

> > > > > up being attributed to digestive issues from my then-undiagnosed food

> > > > > intolerances, but I kind of wonder why it was always only on the left.

> > > > >

> > > >

> > >

> >

>

January 15, 2012

Hi ,

Thanks for your thoughts and I want you to know I was moved by your writing. I

am glad that you were able to get that off your chest and hope it helps. What a

nightmare for you and your family! I know well the insidious drain of energy

and the merry go round of doctor visits, etc, with weird, rare stuff. It

happens also with sinus infections, though. I seem to know more about

antibiotics than many docs I've seen who whip out a z pac for everything, over

and over again. I am new to this one, however I am not new to the nightmare of

the medical care world.

My mother was a bright, eccentric woman who early in her mid 20's was diagnosed

with schizophrenia. She graduated summa cum laude from Pepperdine with 2

majors, on no meds, but was too unconventional for my Dad and they divorced.

She made weird, bad choices a lot and was not like other mothers, but, long

story short, after I took over her care in her early 50's, I went to school on

the medical diagnostic world. My mother was in her 50's, but seemed like an

advanced case of alzheimers. I took her to geriatric specialists, neurologists,

pscychitrists, endocrinologists, infectious disease docs (who, by the way, are

as a group, I think the best docs out there, and everyone should have one.) In

any case, she had had 2 heart attacks, but went against medical advise and would

rip out her IV's, then walk out of the hospital, basically because she hated

IV's. I took her to the ER one time for chest pain; another heart attack. When

she was being admitted, the ER docs wanted her info. I had begged for anyone to

send her to a place here in Atlanta, at Emory Univ, where they could evaluate

her and tell me what in God's name was wrong with her? No one thought she

needed that, she just needed SSRI's. The fact that she wouldn't remember to

take them, or that if I would give them to her, she would spit them out, didn't

seem to matter. So, this time, in the ER, I told them that the only way I would

tell them anything about her, including her name, was if they would promise to

transfer her to Wesley Woods at Emory for a complete neuro psych eval after her

treatment and that they would get a neurologist and psychiatrist involved in her

cardiac care. They looked at me like I was from the moon. I gave them my

business card, took my son by the hand, and told them I would be in the

cafeteria if they needed me, but if they couldn't give me those things, ask my

Mom for her info. It only took about 5 minutes for them to call me. My Mom

wouldn't stop biting the nurse. They asked me, what did you want? So, from

there, I was lucky...and it was pure luck. I got her into Wesley Woods, she got

an amazing attending neuro psychiatrist who was also an endocrinologist. He

kept her there 10 days and then sent me with her to NIH. My mother's MRI showed

a brain that only had a dime size solid place on one side and a quarter on the

other where the entire frontal section of her brain should have been. He

thought she had Picks Disease. It is one of the rarest diseases. NIH

concurred, but Pick's could only be diagnosed with autopsy. When she died,

shortly thereafter, I sent her brain to NIH, she had had Pick's disease. My

life, my mother's life would have been much different had we known and though it

wasn't treatable, she at least might have been less judged and marginalized. Me,

who grew up as her caregiver, could have used some help, but it took my first 4

decades of life to find out, and all of hers.

I would have given my eye teeth to have a group like this for Pick's. Maybe

it's there now, but I tell you, I went through that all by my lonesome...and

the only info I could get was from the NIH project. Now, there's a friend of

mine, her Mom has it, we get together for lunch, and she has more help than I

did. There's much more known about it now.

While I'm at it, I might as well tell you another of my stories...when I was 15,

I was in an accident. I ended up having a spinal tap. Didn't know it, but it

never healed right and I leaked spinal fluid for years until I ended up with

spinal menningits and the ER doc there, before doing another spinal tap, noticed

the spinal fluid on my back. I had been diagnosed with a siezure disorder,

cluster migraines, god knows what...static migraine, I can't even remember now,

but I got treated for the menningitis, they patched the leak, and I haven't

suffered a siezure, or a headache like those ever since. A damn spinal fluid

leak, and not one of the fine docs at UCLA, or Cedars Sanai, or any of the many,

many ER's that I landed in ever checked my back.

So, yeah, I'm at the front end of this one, and lucky so far from your point of

view, but I have been around the block enough to know that I am not getting the

care I need as of yet. I want docs who call me back with my labs and explain

them to me, not their nurse. I want someone who gets that it is bad enough being

evaluated for this, and knows that waiting on labs and phone calls is torture!

My doc 1 hasn't talked to me, only her nurse who couldn't answer any of my

questions. I was told to consult a nephrologist and the doc will see me Feb.

14. Doc 3 read my labs, had the nurse call, and when I asked if he read the

labs knowing that I was taking 4 ktabs, and was salt loaded, she did not know.

She said she would ask the doctor. That was early Friday afternoon. They never

called back. Not acceptable.

I don't run my practice like that! I want docs who know what they are dealing

with, are up on the research and give a shit. Or even if they don't give a shit,

take care of their patients. Not calling me back is not taking care. I don't

care about bedside manner, but I want someone to listen and be bright and

skilled enough to put it together.

There is a web site that seems to give an accurate picture of an MD. It's

called ratemd's.com or something like that. Google rate MD's and you'll find

it. You can also write your opinion about your bad docs there and help others

not go to them. Only problem is that you can get info on their overall user

approval, but no where can you plug in the endos or nephros, and see if they

know anything about this...so, I am going to a neph who is rated well, has been

highly recommended by my gyno, and crossing my fingers...but I am going as a

consumer, and if she doesn't give me what I need, I will look for better care.

That's it for my rant....I will have an attitude of gratitude as I proceed! Try

to everyday, some days it comes easier than others. I know I am grateful for

this group and all of you for sharing and being willing to help and support!

> > > >

> > > > I have low potassium (3.1 at onset) (for about 5 months now), and am

currently taking 4 tabs of k tabs/daily to deal with that.

> > > >

> > > > I also have very high blood pressure since around the same time. I am

taking 100mg of Losartin and Norvasc as well. They are bringing it down to

145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but

tanked the potassium and makes me feel dizzy.

> > > >

> > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for

four days then had labs drawn. Three doctors have looked at the following

results and have all said different things about them.

> > > >

> > > > Plasma Renin activity .17

> > > > Plasma Aldosterone 15.2

> > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > >

> > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for

hyperaldosteronism and referred me to a nephrologist to manage the blood

pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > >

> > > > Doctor 2 said that the labs absolutely confirm secondary hypertension

and hyperaldosteronism and referred me to doc 3 for further testing to determine

the rest of the story...(adenoma, pheo, AVS, etc)

> > > >

> > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw

the above salt loading labs from doc 1, said I did not have hyperaldosteronism,

and they will let me know what the rest of their labs reveal as to what I should

do about the blood pressure or any next step.

> > > >

> > > > I have lots of the symptomology that a lot of you have written about;

brain fog, thirst, flank pain, when I exercise I crash and have to take breaks,

etc.

> > > >

> > > > How is it possible for all three to have different takes on the same

labs? Anybody here know what these labs mean? Any suggestions? I am sooo

confused!

> > > >

> > > > Also, I am wondering...(obviously a newbie, here) why, if you have an

ademoma or nodule/tumor that produces too much aldosterone, why do they take the

whole adrenal gland? Why not do a lumpectomy type of thing and just take the

nodule/tumor?

> > > >

> > > > I feel for all of you who have suffered and dealt with this stuff for so

long and quite frankly, this is a club I don't really want to belong to, but I

am grateful that you are all here and have generously blogged, written, and

shared your experiences so that all of us newbies can learn and hopefully

benefit. Oh, wise ones, I beckon you!

> > > >

> > >

> >

>

January 15, 2012

ASH website? What is that? Thanks for the list. None of my docs are on

there....I will check them against the rate md site and go from there. Thank

you!

> > > > > >

> > > > > > My whole, long story can be found in at left in Files > Conns

Stories >

> > > > > > msmith1928 PA story final 11-4-11.pdf

> > > > > >

<http://f1.grp.fs.com/v1/MEESTwV4fkEsiXx6OQLWsVH2UGQRVjDsJWOk7lHc04\

> > > > > >

hCokv9iYJgSJIGNlVzmvTembApIksRcpy3XiPzESFNNrifEwfuQP2x_g4YzqYTTg/Conns%2\

> > > > > > 0Stories/msmith1928%20PA%20story%20final%2011-4-11.pdf> - not sure

if

> > > > > > that link will work for you or not.

> > > > > >

> > > > > > A few answers:

> > > > > >

> > > > > > How does work go with all of you? Are you able to work with all of

this?

> > > > > > How much time off of work is necessary?

> > > > > >

> > > > > > I worked throughout the entire diagnostic process, from misdiagnosis

in

> > > > > > 2001 through adrenalectomy in 2011. Fortunately I've got a really

> > > > > > flexible schedule and am often able to work from home. I was also

> > > > > > fortunate in that I *could* work - there are some here who have it

so

> > > > > > much worse than I ever did. Truth be told, I didn't realize that I

felt

> > > > > > sick until I wasn't sick anymore.

> > > > > >

> > > > > > How much time off for just AVS? I can assume 4-6 weeks off work with

> > > > > > surgery, but is that true for the laparoscopy as

> > > > > > well?

> > > > > >

> > > > > > I had AVS twice. Each time it was done on a Friday, which I took off

> > > > > > from work; I was back to work for a half-day the next Monday and

> > > > > > full-time thereafter. I was completely unconscious for each AVS

> > > > > > procedure and really, the hardest part of the recovery was getting

past

> > > > > > the nausea and grogginess from the anesthesia.

> > > > > >

> > > > > > I took two weeks off work for my surgery. I felt great immediately

upon

> > > > > > waking up in the recovery room, and was really anxious to get back

to

> > > > > > " normal life " - looking back, I probably should have taken things a

> > > > > > little slower. I ended up having a setback about 4 weeks post-op

where I

> > > > > > did something to the incision site - either ripped the stitches,

damaged

> > > > > > the scar tissue, pulled a muscle, or all of the above, either in

yoga

> > > > > > class or while doing some lifting/carrying.

> > > > > >

> > > > > > Are you back functioning normally yet?

> > > > > >

> > > > > > As of the first of the year, yes! After the aforementioned setback,

I

> > > > > > *really* slowed down for a month. That pain took longer to go away

than

> > > > > > the initial post-op pain, but now I'm pain free and doing everything

as

> > > > > > normal again.

> > > > > >

> > > > > > Do you lose or gain weight or does it impact that? Seems like it

would,

> > > > > > given it's connected to cortisol levels, but

> > > > > > ????

> > > > > >

> > > > > > Weight has been a... challenging aspect of this disease for me.

After an

> > > > > > entire lifetime of being underweight/really thin/never over 100

pounds,

> > > > > > the year I started having symptoms my almost doubled within a year

(89

> > > > > > pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed

with

> > > > > > gluten and fructose intolerance, and by default began eating

low-carb

> > > > > > since that was all I could eat! I lost 50 pounds in 3 months and

kept it

> > > > > > off, but it was a real struggle to keep my weight in the 120-125

zone.

> > > > > > Considering how little I eat and how restricted my diet was, this

never

> > > > > > made sense to me. I was told that I was insulin resistant and that I

> > > > > > would have to struggle with my weight for the rest of my life.

> > > > > >

> > > > > > Interestingly, since the surgery, I've actually been eating more

than

> > > > > > when I still had the tumor (I was on an extremely low sodium diet

and it

> > > > > > was really boring and I ate just enough to stay alive!) but even

though

> > > > > > I'm eating more, I keep losing weight. Right now I'm down to 111,

> > > > > > without even trying. At least for me, there was a definite

connection

> > > > > > between PA and weight, but I don't fully understand what impacted

what.

> > > > > >

> > > > > > And what's the rest of your story? How did you go from UCLA dude

> > > > > > negating the diagnosis to surgery? Did you just go with the

> > > > > > nephrologist?

> > > > > >

> > > > > > The nephrologist was the PA expert, so I trusted his opinion. I got

the

> > > > > > sense that the endocrinologist was just not up to speed on PA and

had a

> > > > > > little bit too much ego to allow himself to learn. After the

(second)

> > > > > > AVS there was no doubt that I had PA.

> > > > > >

> > > > > > Did you have pain on the side where the adenoma was?

> > > > > >

> > > > > > Not that I know of. But looking back to 2001, when I first had

symptoms,

> > > > > > I used to get a lot of " stomach pain " on my left side only. This

ended

> > > > > > up being attributed to digestive issues from my then-undiagnosed

food

> > > > > > intolerances, but I kind of wonder why it was always only on the

left.

> > > > > >

> > > > >

> > > >

> > >

> >

>

January 15, 2012

Well I might add believe a properly done trial. ESP if it has been replicAted. And apply it to people like those in the trial. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 14, 2012, at 23:52, Barb Tatro <rainbowdayz@...> wrote:

ï»¿

Hi ,

I don't know if you've read my story yet, but I'm medical too... retired surgical heart ICU CCRN and I have 2/3 double Master's, MSN/MBA. I am currently in the query phase of publishing my book To Death We Owe the Truth. The book is an expose' of what I have witnessed inside the cult. Based on what I've seen, the treatment that we all have/are receiving is no surprise. When facilities are hiring professionals to some in and teach them the techniques of 'Service Recovery' it follows that it has everything to do with the bottom line and nothing to do with patient outcomes.

Doctors and nurses enter the profession innocent and ethical but it doesn't take long before the pressure exerted by the cult and knowing that we are co-conspirators forces us into rank and file. From that point forward we function in survival mode... comply or your fired, or your license is taken, or you're doing time for someone else's negligence/malpractice. As long as I have been in the profession, the philosophy has been and will always be, cover your ass. If decent patient outcomes occur within that framework it is purely by chance.

So, , I blame myself, not any of them. God gave me a brain and killer assessment skills. That I used them on everyone else but myself is nobody's fault but my own. I trusted people within the profession and took them at their word. I know better. Quoting Buddha ~ Believe nothing just because a so-called wise person said it. Believe nothing just because a belief is generally held. Believe nothing just because it is said in ancient books. Believe nothing just because it is said to be of divine origin. Believe nothing just because someone else believes it. Believe only what you, yourself, test and judge to be true.

So you and I and several others have stepped outside the cult to find truth and that truth is grounded in like stories, lab values, research, test results, and a online group that hold themselves accountable and responsible. We can't change the cult, but we can change our outcomes, day after day, and one by one. I am including an excerpt from the book to show everyone what they are up against. Time apent hating on the system and those within is time better spent educating others and attending to our own health and families.

Barbara

Here is an excerpt from the book:

Healthcare also controls internal information. The latest in many techniques used to control internal information is called Service Recovery. Here is one sales pitch for a book that is currently all the rage in healthcare administration circles: Making It Right: Healthcare Service Recovery Tools, Techniques and Best Practices (Press Ganey - $149.00):

The success of any healthcare facility depends on an effective service recovery system. Failure to resolve a patientâ€™s problem, whether real or perceived, or to make amends to the patient will definitely result in an unhappy patient â€“ and possible lawsuit. Fortunately, it is possible to mitigate the impact of flawed healthcare service. By exceeding expectations in the way you address the situation, you can re-capture the loyalty of a wronged patient, and send your patient satisfaction scores through the roof. By relying on this dependable, authoritative resource to create, implement and maintain a service recovery program, you can achieve success with:

high patient satisfaction profitable financial returns regulatory compliance measurable results to show others

It is unnecessary for me to dissect these words. They are pretty straightforward. Instead, as a potential health care customer, I will tell you what offends me.

Â· A successful facility should depend on patient recovery, not hospital recovery.

Â· Calling any problem that I have, â€˜perceivedâ€™, is insulting. The remark is condescending; it implies stupidity and is nothing more than an opinion. However, if the opinion is passed along, it becomes truth.

Â· If theyâ€™re doing nothing wrong, why do they need to make amends?

Â· Possible lawsuit? They obviously know their activities could land them in court.

Â· Re-capturing loyaltyâ€¦ as in prisoners of warâ€¦ or as in Stockholm Syndrome?

What do healthcare facilities get for their effort: brainwashed patients, money, a regulatory stamp of approval, and results that can be fed to the media or tacked up on billboards. What do the patients get: a free cafeteria meal, two tickets to a local theater, a $10 gift card, or perhaps a bag of M & Ms? Patients misinterpret the bribes as expressions of empathy and a sincere desire to right the wrongs. The saddest part is, though nothing could be further from the truth, its working.

Againâ€¦ if you are doing nothing wrong, why are you in recovery mode?

Re: New to this, already frustrated, and very confused...please help?hyperaldosteronism Date: Saturday, January 14, 2012, 9:56 PM

What did Card RX? Remember you have to be off all MCBs (spiro and epler) for 6 weeks before they can do AVS. No need for AVS if meds and DASHing are doing the trick. - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59 BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD and PTSD.Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS.> > >> > > I have low potassium (3.1 at onset) (for about 5 months now), and am currently taking 4 tabs of k tabs/daily to deal with that.> > > > > > I also have very high blood pressure since around the same time. I am taking 100mg of Losartin and Norvasc as well. They are bringing it down to 145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but tanked the potassium and makes me feel dizzy.> > > > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for four days then had labs drawn. Three doctors have looked at the following results and have all said different things about them.> > > > > > Plasma Renin activity .17> > > Plasma Aldosterone 15.2> > > Potassium 3.8 (supplemented with 4 kclor/daily)> > > > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for hyperaldosteronism and referred me to a nephrologist to manage the blood pressure. And to repeat the same blood test (salt loading) again in 3 months.> > > > > > Doctor 2 said that the labs absolutely confirm secondary hypertension and hyperaldosteronism and referred me to doc 3 for further testing to determine the rest of the story...(adenoma, pheo, AVS, etc)> > > > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw the above salt loading labs from doc 1, said I did not have hyperaldosteronism, and they will let me know what the rest of their labs reveal as to what I should do about the blood pressure or any next step.> > > > > > I have lots of the symptomology that a lot of you have written about; brain fog, thirst, flank pain, when I exercise I crash and have to take breaks, etc. > > > > > > How is it possible for all three to have different takes on the same labs? Anybody here know what these labs mean? Any suggestions? I am sooo confused!> > > > > > Also, I am wondering...(obviously a newbie, here) why, if you have an ademoma or nodule/tumor that produces too much aldosterone, why do they take the whole adrenal gland? Why not do a lumpectomy type of thing and just take the nodule/tumor?> > > > > > I feel for all of you who have suffered and dealt with this stuff for so long and quite frankly, this is a club I don't really want to belong to, but I am grateful that you are all here and have generously blogged, written, and shared your experiences so that all of us newbies can learn and hopefully benefit. Oh, wise ones, I beckon you!> > >> >>

January 15, 2012

ASH is American Society of Hypertension. All that on the list are board

certified in Hypertension.

> > > > > > >

> > > > > > > My whole, long story can be found in at left in Files > Conns

Stories >

> > > > > > > msmith1928 PA story final 11-4-11.pdf

> > > > > > >

<http://f1.grp.fs.com/v1/MEESTwV4fkEsiXx6OQLWsVH2UGQRVjDsJWOk7lHc04\

> > > > > > >

hCokv9iYJgSJIGNlVzmvTembApIksRcpy3XiPzESFNNrifEwfuQP2x_g4YzqYTTg/Conns%2\

> > > > > > > 0Stories/msmith1928%20PA%20story%20final%2011-4-11.pdf> - not

sure if

> > > > > > > that link will work for you or not.

> > > > > > >

> > > > > > > A few answers:

> > > > > > >

> > > > > > > How does work go with all of you? Are you able to work with all of

this?

> > > > > > > How much time off of work is necessary?

> > > > > > >

> > > > > > > I worked throughout the entire diagnostic process, from

misdiagnosis in

> > > > > > > 2001 through adrenalectomy in 2011. Fortunately I've got a really

> > > > > > > flexible schedule and am often able to work from home. I was also

> > > > > > > fortunate in that I *could* work - there are some here who have it

so

> > > > > > > much worse than I ever did. Truth be told, I didn't realize that I

felt

> > > > > > > sick until I wasn't sick anymore.

> > > > > > >

> > > > > > > How much time off for just AVS? I can assume 4-6 weeks off work

with

> > > > > > > surgery, but is that true for the laparoscopy as

> > > > > > > well?

> > > > > > >

> > > > > > > I had AVS twice. Each time it was done on a Friday, which I took

off

> > > > > > > from work; I was back to work for a half-day the next Monday and

> > > > > > > full-time thereafter. I was completely unconscious for each AVS

> > > > > > > procedure and really, the hardest part of the recovery was getting

past

> > > > > > > the nausea and grogginess from the anesthesia.

> > > > > > >

> > > > > > > I took two weeks off work for my surgery. I felt great immediately

upon

> > > > > > > waking up in the recovery room, and was really anxious to get back

to

> > > > > > > " normal life " - looking back, I probably should have taken things

a

> > > > > > > little slower. I ended up having a setback about 4 weeks post-op

where I

> > > > > > > did something to the incision site - either ripped the stitches,

damaged

> > > > > > > the scar tissue, pulled a muscle, or all of the above, either in

yoga

> > > > > > > class or while doing some lifting/carrying.

> > > > > > >

> > > > > > > Are you back functioning normally yet?

> > > > > > >

> > > > > > > As of the first of the year, yes! After the aforementioned

setback, I

> > > > > > > *really* slowed down for a month. That pain took longer to go away

than

> > > > > > > the initial post-op pain, but now I'm pain free and doing

everything as

> > > > > > > normal again.

> > > > > > >

> > > > > > > Do you lose or gain weight or does it impact that? Seems like it

would,

> > > > > > > given it's connected to cortisol levels, but

> > > > > > > ????

> > > > > > >

> > > > > > > Weight has been a... challenging aspect of this disease for me.

After an

> > > > > > > entire lifetime of being underweight/really thin/never over 100

pounds,

> > > > > > > the year I started having symptoms my almost doubled within a year

(89

> > > > > > > pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was

diagnosed with

> > > > > > > gluten and fructose intolerance, and by default began eating

low-carb

> > > > > > > since that was all I could eat! I lost 50 pounds in 3 months and

kept it

> > > > > > > off, but it was a real struggle to keep my weight in the 120-125

zone.

> > > > > > > Considering how little I eat and how restricted my diet was, this

never

> > > > > > > made sense to me. I was told that I was insulin resistant and that

I

> > > > > > > would have to struggle with my weight for the rest of my life.

> > > > > > >

> > > > > > > Interestingly, since the surgery, I've actually been eating more

than

> > > > > > > when I still had the tumor (I was on an extremely low sodium diet

and it

> > > > > > > was really boring and I ate just enough to stay alive!) but even

though

> > > > > > > I'm eating more, I keep losing weight. Right now I'm down to 111,

> > > > > > > without even trying. At least for me, there was a definite

connection

> > > > > > > between PA and weight, but I don't fully understand what impacted

what.

> > > > > > >

> > > > > > > And what's the rest of your story? How did you go from UCLA dude

> > > > > > > negating the diagnosis to surgery? Did you just go with the

> > > > > > > nephrologist?

> > > > > > >

> > > > > > > The nephrologist was the PA expert, so I trusted his opinion. I

got the

> > > > > > > sense that the endocrinologist was just not up to speed on PA and

had a

> > > > > > > little bit too much ego to allow himself to learn. After the

(second)

> > > > > > > AVS there was no doubt that I had PA.

> > > > > > >

> > > > > > > Did you have pain on the side where the adenoma was?

> > > > > > >

> > > > > > > Not that I know of. But looking back to 2001, when I first had

symptoms,

> > > > > > > I used to get a lot of " stomach pain " on my left side only. This

ended

> > > > > > > up being attributed to digestive issues from my then-undiagnosed

food

> > > > > > > intolerances, but I kind of wonder why it was always only on the

left.

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

January 15, 2012

Remember most is due to bilateral disease so taking out 1 small one leaves many others. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 15, 2012, at 11:50, Francis Bill SUSPECTED PA <georgewbill@...> wrote:

Some in Japan don't do surgery just insert needle and inject solution that burns out the tumor.

>

> > I have low potassium (3.1 at onset) (for about 5 months now), and am currently taking 4 tabs of k tabs/daily to deal with that.

> >

> > I also have very high blood pressure since around the same time. I am taking 100mg of Losartin and Norvasc as well. They are bringing it down to 145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but tanked the potassium and makes me feel dizzy.

> >

> > I was taken off all BP meds for 5 weeks and took 4 grams of salt for four days then had labs drawn. Three doctors have looked at the following results and have all said different things about them.

> >

> > Plasma Renin activity .17

> > Plasma Aldosterone 15.2

> > Potassium 3.8 (supplemented with 4 kclor/daily)

> >

> > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for hyperaldosteronism and referred me to a nephrologist to manage the blood pressure. And to repeat the same blood test (salt loading) again in 3 months.

> >

> > Doctor 2 said that the labs absolutely confirm secondary hypertension and hyperaldosteronism and referred me to doc 3 for further testing to determine the rest of the story...(adenoma, pheo, AVS, etc)

> >

> > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw the above salt loading labs from doc 1, said I did not have hyperaldosteronism, and they will let me know what the rest of their labs reveal as to what I should do about the blood pressure or any next step.

> >

> > I have lots of the symptomology that a lot of you have written about; brain fog, thirst, flank pain, when I exercise I crash and have to take breaks, etc.

> >

> > How is it possible for all three to have different takes on the same labs? Anybody here know what these labs mean? Any suggestions? I am sooo confused!

> >

> > Also, I am wondering...(obviously a newbie, here) why, if you have an ademoma or nodule/tumor that produces too much aldosterone, why do they take the whole adrenal gland? Why not do a lumpectomy type of thing and just take the nodule/tumor?

> >

> > I feel for all of you who have suffered and dealt with this stuff for so long and quite frankly, this is a club I don't really want to belong to, but I am grateful that you are all here and have generously blogged, written, and shared your experiences so that all of us newbies can learn and hopefully benefit. Oh, wise ones, I beckon you!

> >

>

January 15, 2012

Take cash only and then u can try to get from ins. There is a code for seeing HTN SPECIALIST AND WILL NEED to find out what it is. For A years worth of expertise pretty good deal. Can ask others here if it was with it to them. We have one here who had surgery in Atlanta but can't recall name at this time. Had surgery at VA as I recall. Working with dr from Atlanta and will ask him. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 15, 2012, at 15:22, maggiekat7 <ljurkovic@...> wrote:

Was born in LA, educated there (Pepperdine,UCLA, Institiute,etc), got married and moved to GA. So in Atlanta now...know anyone here for endo, neph, or AVS, or adrenal surgeon?? Also ins is BCBS PPO. Also have left ventricular hypertrophy and mitral valve regurgitation. First script for low potassium was 3/2010 for 3.1 level. At the time, also had cytomellago virus and previous to that EBV. In 2006, I fainted, dropped to the ground in a restaurant, broke my leg in the process. Had a neuro and cardio workup for it, but no one did labs for potassium. Neuro and cardio workup just yielded lipid issues, but nothing else. Never knew why that happened, but am now wondering if I had low potassium then...? I know when it's low, I stay low to the ground! So, since 2006, I've developed LVH, MVR, all while DASHing under Superko's supervision. Lipids are now fine, lost 50 lbs., BP was fine until recently though. Any case, thanks for the feedback, let me know if you are

a BCBS provider...is there a cpt code for your consulting?

> > > >

> > > > I have low potassium (3.1 at onset) (for about 5 months now), and am currently taking 4 tabs of k tabs/daily to deal with that.

> > > >

> > > > I also have very high blood pressure since around the same time. I am taking 100mg of Losartin and Norvasc as well. They are bringing it down to 145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but tanked the potassium and makes me feel dizzy.

> > > >

> > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for four days then had labs drawn. Three doctors have looked at the following results and have all said different things about them.

> > > >

> > > > Plasma Renin activity .17

> > > > Plasma Aldosterone 15.2

> > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > >

> > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for hyperaldosteronism and referred me to a nephrologist to manage the blood pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > >

> > > > Doctor 2 said that the labs absolutely confirm secondary hypertension and hyperaldosteronism and referred me to doc 3 for further testing to determine the rest of the story...(adenoma, pheo, AVS, etc)

> > > >

> > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw the above salt loading labs from doc 1, said I did not have hyperaldosteronism, and they will let me know what the rest of their labs reveal as to what I should do about the blood pressure or any next step.

> > > >

> > > > I have lots of the symptomology that a lot of you have written about; brain fog, thirst, flank pain, when I exercise I crash and have to take breaks, etc.

> > > >

> > > > How is it possible for all three to have different takes on the same labs? Anybody here know what these labs mean? Any suggestions? I am sooo confused!

> > > >

> > > > Also, I am wondering...(obviously a newbie, here) why, if you have an ademoma or nodule/tumor that produces too much aldosterone, why do they take the whole adrenal gland? Why not do a lumpectomy type of thing and just take the nodule/tumor?

> > > >

> > > > I feel for all of you who have suffered and dealt with this stuff for so long and quite frankly, this is a club I don't really want to belong to, but I am grateful that you are all here and have generously blogged, written, and shared your experiences so that all of us newbies can learn and hopefully benefit. Oh, wise ones, I beckon you!

> > > >

> > >

> >

>

January 15, 2012

Jeff had an apparently successful adrenalectomy.Â He left the group a few months ago. Val-----Original Message-----Mon Dec 18, 2006 Dr. Grim, I think in my case the surgeon spent a great deal of extra time (4hours in OR) to get the organ out intact as well as identify the mass.Based on the pathology findings which described specific location ofthe adenoma, cellular makeup, borders, and description of the rest ofthe gland, I am certain pathology didn't get a lump of " hamburger meat. " That said, if someone must use a surgeon that has not done many ofthese procedures, the patient should be very clear about theirexpectation that an intact gland be removed and sent to pathology. By the way, be sure to add to your MD list the follow physicians: Dr. Gordon Wotton (endocrinologist)5667 Peachtree Dunwoody Rd, Suite 150Atlanta, GA 30342(404) 256-6281 Dr. Iqbal Garcha (surgeon)5670 Peachtree Dunwoody Rd, Suite 920Atlanta, GA 30342(404) 250-1694 Regards,Jeff From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim Take cash only and then u can try to get from ins. There is a code for seeing HTN SPECIALIST AND WILL NEED to find out what it is. For A years worth of expertise pretty good deal. Can ask others here if it was with it to them. We have one here who had surgery in Atlanta but can't recall name at this time. Had surgery at VA as I recall. Working with dr from Atlanta and will ask him. May your pressure be low! CE Grim MS, MDSpecializing in DifficultHypertension

January 15, 2012

Thanks Val and Dr.G...these guys are in the same med complex as the neph I see

on Tues...if they are still in practice. What does HTN stand for? hypertension,

perhaps?

>

> Dr. Grim,

>

> I think in my case the surgeon spent a great deal of extra time (4

> hours in OR) to get the organ out intact as well as identify the mass.

> Based on the pathology findings which described specific location of

> the adenoma, cellular makeup, borders, and description of the rest of

> the gland, I am certain pathology didn't get a lump of " hamburger meat. "

>

> That said, if someone must use a surgeon that has not done many of

> these procedures, the patient should be very clear about their

> expectation that an intact gland be removed and sent to pathology.

>

> By the way, be sure to add to your MD list the follow physicians:

>

> Dr. Gordon Wotton (endocrinologist)

> 5667 Peachtree Dunwoody Rd, Suite 150

> Atlanta, GA 30342

> (404) 256-6281

>

> Dr. Iqbal Garcha (surgeon)

> 5670 Peachtree Dunwoody Rd, Suite 920

> Atlanta, GA 30342

> (404) 250-1694

>

> Regards,

> Jeff

>

> From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

>

> Take cash only and then u can try to get from ins. There is a code for seeing

HTN SPECIALIST AND WILL NEED to find out what it is. For A years worth of

expertise pretty good deal. Can ask others here if it was with it to them. We

have one here who had surgery in Atlanta but can't recall name at this time. Had

surgery at VA as I recall. Working with dr from Atlanta and will ask him.

> May your pressure be low!

>

> CE Grim MS, MD

> Specializing in Difficult

> Hypertension

>

January 15, 2012

You can order Ã‡L testing sticks to tea Ã‡L in urine as it mostly comes from Na l. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 15, 2012, at 15:37, maggiekat7 <ljurkovic@...> wrote:

labs from blood draw and urine ordered are plasma aldosterone, plasma renin, plasma metanephrine, plasma catacholamine, 24 hour urine metanephrine, catacholamine, aldosterone, cell met?, complete metabolic panel (smac). Does serum smac results count? Or do I need a urine one? Is there a home test for that at Walgreens?

> > > > > >

> > > > > > I have low potassium (3.1 at onset) (for about 5 months now), and am currently taking 4 tabs of k tabs/daily to deal with that.

> > > > > >

> > > > > > I also have very high blood pressure since around the same time. I am taking 100mg of Losartin and Norvasc as well. They are bringing it down to 145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but tanked the potassium and makes me feel dizzy.

> > > > > >

> > > > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for four days then had labs drawn. Three doctors have looked at the following results and have all said different things about them.

> > > > > >

> > > > > > Plasma Renin activity .17

> > > > > > Plasma Aldosterone 15.2

> > > > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > > > >

> > > > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for hyperaldosteronism and referred me to a nephrologist to manage the blood pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > > > >

> > > > > > Doctor 2 said that the labs absolutely confirm secondary hypertension and hyperaldosteronism and referred me to doc 3 for further testing to determine the rest of the story...(adenoma, pheo, AVS, etc)

> > > > > >

> > > > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw the above salt loading labs from doc 1, said I did not have hyperaldosteronism, and they will let me know what the rest of their labs reveal as to what I should do about the blood pressure or any next step.

> > > > > >

> > > > > > I have lots of the symptomology that a lot of you have written about; brain fog, thirst, flank pain, when I exercise I crash and have to take breaks, etc.

> > > > > >

> > > > > > How is it possible for all three to have different takes on the same labs? Anybody here know what these labs mean? Any suggestions? I am sooo confused!

> > > > > >

> > > > > > Also, I am wondering...(obviously a newbie, here) why, if you have an ademoma or nodule/tumor that produces too much aldosterone, why do they take the whole adrenal gland? Why not do a lumpectomy type of thing and just take the nodule/tumor?

> > > > > >

> > > > > > I feel for all of you who have suffered and dealt with this stuff for so long and quite frankly, this is a club I don't really want to belong to, but I am grateful that you are all here and have generously blogged, written, and shared your experiences so that all of us newbies can learn and hopefully benefit. Oh, wise ones, I beckon you!

> > > > > >

> > > > >

> > > >

> > >

> >

>

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January 15, 2012

The dx is already clear and classic. Issue is how soon do u want to begin to feel better. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 15, 2012, at 15:46, maggiekat7 <ljurkovic@...> wrote:

No, have not been scanned. Doc's 2 and 3 both agree on this one. They both say that adenomas and pheos, are better diagnosed with labs, then AVS because you can often see nodules, etc on a scan, but they may or may not be producing problematic hormones. Further, they say, that AVS is the "gold standard" for differentiating between hyperplasia, tumors and bilateral or unilateral issues. Doc 1, didn't address AVS or scanning, just said repeat salt loading labwork in 3 months. Gyno was appalled that I hadn't been scanned and sent me to her husband, Doc 3, but he didn't concur with her.

> > > >

> > > > I have low potassium (3.1 at onset) (for about 5 months now), and am currently taking 4 tabs of k tabs/daily to deal with that.

> > > >

> > > > I also have very high blood pressure since around the same time. I am taking 100mg of Losartin and Norvasc as well. They are bringing it down to 145-165 over 100-110. Lisinopril didn't work at all, but HCTZ did a little, but tanked the potassium and makes me feel dizzy.

> > > >

> > > > I was taken off all BP meds for 5 weeks and took 4 grams of salt for four days then had labs drawn. Three doctors have looked at the following results and have all said different things about them.

> > > >

> > > > Plasma Renin activity .17

> > > > Plasma Aldosterone 15.2

> > > > Potassium 3.8 (supplemented with 4 kclor/daily)

> > > >

> > > > Doctor 1 calculated the ratio to 89.4 and said that I am borderline for hyperaldosteronism and referred me to a nephrologist to manage the blood pressure. And to repeat the same blood test (salt loading) again in 3 months.

> > > >

> > > > Doctor 2 said that the labs absolutely confirm secondary hypertension and hyperaldosteronism and referred me to doc 3 for further testing to determine the rest of the story...(adenoma, pheo, AVS, etc)

> > > >

> > > > Doctor 3 took more blood, had me do a 24 urine sample, and when he saw the above salt loading labs from doc 1, said I did not have hyperaldosteronism, and they will let me know what the rest of their labs reveal as to what I should do about the blood pressure or any next step.

> > > >

> > > > I have lots of the symptomology that a lot of you have written about; brain fog, thirst, flank pain, when I exercise I crash and have to take breaks, etc.

> > > >

> > > > How is it possible for all three to have different takes on the same labs? Anybody here know what these labs mean? Any suggestions? I am sooo confused!

> > > >

> > > > Also, I am wondering...(obviously a newbie, here) why, if you have an ademoma or nodule/tumor that produces too much aldosterone, why do they take the whole adrenal gland? Why not do a lumpectomy type of thing and just take the nodule/tumor?

> > > >

> > > > I feel for all of you who have suffered and dealt with this stuff for so long and quite frankly, this is a club I don't really want to belong to, but I am grateful that you are all here and have generously blogged, written, and shared your experiences so that all of us newbies can learn and hopefully benefit. Oh, wise ones, I beckon you!

> > > >

> > >

> >

>

January 15, 2012

I know Hall, Lea, and Wells. Know Hall the best and would choose him if still seeing pts. The. Dr . May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 15, 2012, at 16:16, Francis Bill SUSPECTED PA <georgewbill@...> wrote:

Here is a list of Dr from the ASH site that should have a understanding on PA. Maybe Dr grim knows one of them.

Bassey Ephraim MD Atlanta Nephrology

Doyle Joyce MD Atlanta Adult Medicine, Primary Care

Hall W. Dallas MD Atlanta

Lea Janice MD Atlanta Adult Medicine, Nephrology

Obialo Chamberlain MBBS Atlanta Adult Medicine, Nephrology

Onwuanyi Anekwe MBBS Atlanta Adult Medicine, Cardiology

MD Atlanta Adult Medicine, Endocrinology, Consultations Only

Schuck Harvey MD Atlanta Pharmaceutical Research

Wells MD, MBA Atlanta Adult Medicine, Nephrology

> > > >

> > > > My whole, long story can be found in at left in Files > Conns Stories >

> > > > msmith1928 PA story final 11-4-11.pdf

> > > > <http://f1.grp.fs.com/v1/MEESTwV4fkEsiXx6OQLWsVH2UGQRVjDsJWOk7lHc04\

> > > > hCokv9iYJgSJIGNlVzmvTembApIksRcpy3XiPzESFNNrifEwfuQP2x_g4YzqYTTg/Conns%2\

> > > > 0Stories/msmith1928%20PA%20story%20final%2011-4-11.pdf> - not sure if

> > > > that link will work for you or not.

> > > >

> > > > A few answers:

> > > >

> > > > How does work go with all of you? Are you able to work with all of this?

> > > > How much time off of work is necessary?

> > > >

> > > > I worked throughout the entire diagnostic process, from misdiagnosis in

> > > > 2001 through adrenalectomy in 2011. Fortunately I've got a really

> > > > flexible schedule and am often able to work from home. I was also

> > > > fortunate in that I *could* work - there are some here who have it so

> > > > much worse than I ever did. Truth be told, I didn't realize that I felt

> > > > sick until I wasn't sick anymore.

> > > >

> > > > How much time off for just AVS? I can assume 4-6 weeks off work with

> > > > surgery, but is that true for the laparoscopy as

> > > > well?

> > > >

> > > > I had AVS twice. Each time it was done on a Friday, which I took off

> > > > from work; I was back to work for a half-day the next Monday and

> > > > full-time thereafter. I was completely unconscious for each AVS

> > > > procedure and really, the hardest part of the recovery was getting past

> > > > the nausea and grogginess from the anesthesia.

> > > >

> > > > I took two weeks off work for my surgery. I felt great immediately upon

> > > > waking up in the recovery room, and was really anxious to get back to

> > > > "normal life" - looking back, I probably should have taken things a