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

January 14, 2012

Looks like you have PA. But will see what Dr Grim says.

>

> 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 14, 2012

My adenoma was an adrenal cortex adenoma.There was no choice really but to take the whole thing Juli 41y F 13 months post right adrenalectomy Sent from my iPhoneOn Jan 14, 2012, at 7:33 PM, "Francis Bill SUSPECTED PA" <georgewbill@...> wrote:

Looks like you have PA. But will see what Dr Grim says.

>

> 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 14, 2012

Welcome to the club! Yeah, definitely not one to which anyone wants to belong,

but I'm glad that you found us. I can't imagine going through this without

getting as much information as possible. For me, anecdotal evidence from other

patients was equally important as what the doctors and medical journals could

tell me.

As for how three docs could have three different takes on your labs - that seems

pretty typical with PA. After a nephrologist had already diagnosed me, I had an

endocrinologist (faculty at UCLA, well-regarded) tell me my labs looked

" perfectly normal " and that there was no way I could have PA. Proved him wrong:

had my left adrenal taken out last October and, amazingly enough, all of my

symptoms improved!

The explanation I was given as to why they take the entire gland, rather than

just the tumor, is that typically if there is one tumor there is the potential

for more to grow in the same gland. In my case, I was told that my left adrenal

was enlarged and lumpy, in addition to having the tumor. My right adrenal,

however, looked " normal " . I have heard of surgeons who take only the tumor -

there are a couple people on this board who have had this done - but it seems to

be the exception rather than the rule.

It's only been a short time since I had the surgery, but I've been doing great

and have had absolutely no regrets. Well, the only regret is that it took 10

years to get diagnosed and treated!

-msmith1928

Nulliparous female, 46, left laparoscopic adrenalectomy on 10/13/2011.

>

> 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 14, 2012

I would vote with doctor #2! Most use a ratio of 25 to consider the process for

more testing if appropriate. With renin at .17 at the minimum you have " low

renin HTN' which Dr. Grim tells me is early PA and the treatment is the same.

The path you take depends some on your age, history and desire. If you have an

adenoma and desire removal then more testing is in order. Since they can always

treat with MCB, Dr. Grim's first choice, there is no need for further testing if

that is your choice. You can start a low dose of an MCB and see what it does to

your BP. If you have insurance or can afford it I would recommend Eplerenone

but it is more expensive so most start you on Spironolactone and switch if

adverse side effects. I see no reason to wait and suffer for 3 months before

starting a treatment plan!

- 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 14, 2012

Hey, and thanks for the reply...studied hours and hours at the neuro-med library

at UCLA! Might know the endo there by sight at least. Sorry to hear of your

plight, but glad to hear you are better. I was just wondering about taking the

whole thing because there's a lot of posts about the other adrenal not working

and then people have to take steroids. I absolutely don't tolerate steroids

well; they are like taking poison to me, so if there's any question of the other

one not working and being left with that option, I might as well shoot myself!

I am going to Doc 4 on Tuesday. Doc 1 and 3 are endocrinologists, Doc 2 my

cardiologist, Doc 4 is a nephrologist. I guess she will have to agree with one

of the previous; since one is a maybe, and the others are yes and no; gotta be

one of those, que no? If she doesn't seem to bright, I have a script for

something from the cardio that blocks aldosterone and I'm thinking of stopping

the other BP meds and taking that to see if it lowers my BP. If it does, then I

just need recommendations as to the best docs and where to go for AVS...if not,

then who knows, maybe make sure my thyroid is stable and then retest at that

time. Right now tsh and t4 free are off just a tad...been adjusting the

synthroid since menopause...I suppose that could impact all of this as well.

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? 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?

Are you back functioning normally yet? Do you lose or gain weight or does it

impact that? Seems like it would, given it's connected to cortisol levels, but

????

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? Did you have pain

on the side where the adenoma was?

> >

> > 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 14, 2012

If I am already taking Losartin and Norvasc, do I add the MCB or go off the

other BP meds and start the Epler. I already have some of that one; cardio, doc

2 gave it to me, but said to wait to take it until after AVS. If I find a doc to

do the AVS, and more of a reason to think it's worth having, I would like to get

it dealth with because I have left flank pain, the low potassium is difficult,

headaches, I don't know if the meds will deal with all that or just lower the

BP? If nephrologist (doc 4, Tues) is ignorant as to this disease, I will go on

the meds just to self diagnose, buy time to find a good doc somewhere to help

further. I am considering Dr.G's offer to consult, but need to speak with him

further about insurance coverage of his fees. Do you know if insurance covers

his fees? I don't see why not, but would like to know.

BTW, I am a very active 52 year old. I ski, waterski, crochet, work, mother an

11 year old that I have to keep up with that wants me jumping on the trampoline

and playing tennis with him. All of these symptoms are annoying and impairing

my life overall. I have the brain fog, the lack of ability to sleep, the

nocturnalism, when I used to be a 9pm to bed person, the constant headaches,

horrific leg cramps, freezing hands and feet, numb toes, BP that is downright

scary, constant thirst and when I ski, I have to stop all the time, I make it

through the mornings ok, but by the midafternoon, I crash. I used to work out

for an hour and now just 30 min. Can't get through a zumba class anymore. I

don't know if I have this disorder yet, maybe I am just 52 and feeling it, but

if there is a cure for this and it's not my age, but something wrong, then, I

just need a good doc, a good AVS radiologist and a good surgeon.

> >

> > 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 14, 2012

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 14, 2012

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

msmith1928 PA story final 11-4-11.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 14, 2012

Thank you! I hope you continue to do well...I will try the link in the

morning...sleep well too, I am on eastern time, my left side hurts so I am

turning in... good night....

>

> 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 14, 2012

Cardio gave me epler, and DASH info long ago. She thinks we DASH well, even

though BP has skyrocketed, she knows our diet and excercise. We first did

Supeko's diet, then I had to be more insulin resistant and my husband more

anti-inflammatory. So, we were pretty much dashing when I read about it. The

brand name of the med starts with an I, I have to pick it up, haven't yet,

pharmacy was out of it, will get it tomorrow, I guess. I will wait until neph

on Tues weighs in and other labs are in and doc 2 takes a look at all labs

again. Then, I'll think about the rest.....it's all daunting. Too many doc

visits, period.

What is washing Spiro? What does that mean?

Just out of curiosity, don't say if you aren't comfortable...your PTSD? From

this stuff?

> > > >

> > > > 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 14, 2012

So far you are incredibly lucky as most of us suffered for many many years with the obvious uncontrolled HTN and low potassiums along with many other various problems. But regardless of dozens of visits EACH year to ER's, hospitalizations, and countless doctor visits and the changing of doctors, we were outright ignored or they just added a new, but wrong medication.

PA for me, and I had hyperthyroidism that also was misdiagnosed over and over, finally got so bad (and the severe and chronic hypokalemia) that it came to a head and completely and severely disrupted our lives and my professional life, so bad that I am still trying to recover from it, if I ever do. For the first time in my life, and I am a 25 year paramedic (started in South Central Los Angeles) and physician assistant so I had seen, and have seen my fair share of what some may call "traumatic stress", I now saw a therapist because my anger was getting so bad regarding so many bad and lazy doctors, many who just did not listen or were purely rude, over a period of about 5 years, that I knew the anger was just unproductive. I felt/feel like my own system completely let me down and I am paying for it to this day.

I was in great physical shape at the beginning of the first signs of PA that I am positive this is why I never had a stroke or MI (I did have an unk cause seizure in late 2008 that could not be explained, but I suspect possibly low K given how I had been feeling). I was in the ER and/or hospital so many times for severe HTN and Low K and they never considered even once Connn's / PA. Never. And I had a daily BP for years and years that easily reached 160/120 and often would go as high as 180/140. My nurse would tease me every day and just say I was out of shape when they would check it. All the time it was that high. To them it was always stress/depression and they even would whisper to my wife that I needed to get away. I would argue that I wasn't depressed and refused SSRI's. But their minds were made up.

When a cardiologist finally, after I sat in his office with a BP of 180/140 that he took again and again because he too didn't believe it, nor accepted my own logs I had given him (he literally told me they couldn't be correct), and on 5 BP meds at the time, started spiro on a hunch, my BP was down in 2 doses to 120/80. If I DASH and take spiro it stays fine. But alot of "life" damage and professional damage has been done - and never needed to be this way.

I think:

1. the system is just horrible and we medical professionals simply don't listen. They direct the conversation so often down a path they WANT to see, and have lost the art of history taking and patient assessment, They will look for a pheo again and again, which I would have better odds playing the lottery than have one, than consider PA when really they could just google HTN and hypokalemia and have their answer.

2. Everything is always stress and depression to them. Those two things NEVER cause the symptoms we have, but they don't care, as they can prescribe an SSRI to everyone (and no, I work in the system, there are NO kickbacks or payments or anything for prescribing those contrary to common myths, it's more convenience and laziness).

3. It may be worse for a man, because as I feel I have to say all the time that "men have hormones too!" but they will more often consider hormones in a woman, and women tend to demand that theirs gets checked, and ignore that exact same things in a man or maybe, we as men, act more stoic and tough that we don't "look" like we are as sick as we are so they attribute it to stress, or a heart problem, but when the heart keeps coming up normal, they don't know what to do.

4. I think in my case, that I didn't "look" sick, and drug myself into work every single day year after year. I could hardly lift my head out of bed somedays, but life had to go on. I went to the doc constantly, but when no answer came from them then I had no excuse to not go in, or to complain. Sometimes I was so sick - I was always so sick actually, and combined with the hyperthyroid I had, that I suspect could have only been Graves (I have clear obvious photos of my eyes before and after and after and there is no mistake in the changes). I fought this forever. I had weeks long insomnia and when I would tell someone they would shrug and say or act like "Oh yeah, I have trouble sleeping too..." and had NO IDEA and I had no way of convincing anyone how terrible it was for me. Every provider compares it to how THEY feel.

But because I seemingly could "do it" no one would believe me that I could be as sick as I was. I have a sister in law, who is a housewife (NEVER has had a 9-5 nor had to get up to an alarm (she homeschooled her kids....well sort of....), but has grown kids, who has come down with Graves and the whole family stops the world over it. I feel that many still think I was faking, or being lazy or was an addict, or something like that, that they just blow off me being so sick. I think that hurts the most as I could NEVER fully put into words how ill I was. I tried, but after so many brush offs I gave up. It wasn't until the thyroid went haywire combined with PA and the severe insomnia that I was nearly psychotic and had to find help. It helped but it also hurt as my professional board who I was honest with, held it against me. It was like being slapped again and again.

Life is better and I feel healthier, except I have a few odd issues that I cannot tell if they are residual effects of all this, or other issues going on. Still I do mainly have my energy since my BP and K are kept good. I DASH and this is healthy and helps, and I exercise. If I can just fix the professional aspect (the medical board wants literally tens of thousands of dollars in "assessments' for me to work again, but we are so broke and the illness being misdaignosed led to it all. I stay positive except for this here rnt in answer to your question, but maybe I needed to get some off my chest........so forgive me???

So, sorry, but this is the path many of us have taken. You are months in and you can be incredibly grateful at least you have some willing to explore and listen. Most of us have had some aspect of our lives flipped over due to this Your road certainly isn't clear yet, but let's pray they stay on the right track at least.

44 yo male physician assistant (the PA with PA) and paramedic, with 7 wonderful children and an even better wife, who went at least 5 years misdiagnosed (more like 10 maybe), now stable BP on DASH and spiro.

From: <jclark24p@...>Subject: 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 14, 2012

Most of us add the MCB and then eliminate other meds after (watch your K, that

might be an exception). In my case I was on 7 BP meds and a K suppl. Take your

BP every morning before AM meds but don't worry. If you have PA they are

probably not doing anything. In my case on 5 of them, BP stayed the same on 3

and actually went down on 2!

I was on spiro for 18 months and it was remarkable until I developrd

gynecomastisa and I had to get off it. I had right flank pain, the side the

tumor is on, so bad they had me on narcotics. I was a professional bus driver

and had to go on disability. Don't let anyone tell you the pain is not

associated with PA. It went away when PA resolved and started to return

whenever I overloaded my NA. Now that I have been off spiro for 3 weeks it's

back, I'm trying to decide if I can make another month or need to break out the

methadone and Oxycodone!

You are Not suffering from MAW Syndrome! (msmith and I decided on that syndrome

- Middle Aged Woman Syndrome.) I expect once you get PA resolved and K at a

level your body considers acceptable. In my case it was like turning off a

light switch, April 23, 2010!

I saw all your SX, well I don't ski anymore, and my sleep was limited to 1 1/2

hr at a time at night. The midafternoon crash resulted in a nap (No, I don't

have any preteens running around - she's now 27!) While spiro was working it was

8 or more uninterupted hours and no naps! I also has LVH bad enough that I was

on Oxygen. That resolved in 12 weeks!

Tell that kid of your's he better be ready because " MOMMA'S COMING HOME " !!!

BTW, your Card. sounds trainable, I wouldn't spend a lot of time looking for a

specialist. With the help from Dr. Grim and the people on this site you'll

likely have all the info you need and be able to make him/her an expert. I've

been training the doctors at the local VA Hospital. I even DXed my first case

the other day but that's another story!

Stay with us, post often and remember, " The only dumb question is the one not

asked! "

- 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 14, 2012

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 14, 2012

I believe the " I " medicine is Inspra (Eplerenone). I believe it is a better

choice because it is more selective.

You mentioned insulin, be aware if you have PA it often impacts insulin release.

" Washing Spiro " is being off all MCBs for 6 weeks to prepare for an AVS.

PTSD is from serving in Vietnam in the late '60s. I blame this for MDD (Major

Depressive Disorder). I've dealt w/HTN for over 30 years and then it has been

warp speed for 18 months.

I hear you about too many docs. I'd suggest you train your Card, she sounds

like she already knows something about it and you can get good info here from

Dr. Grim and others. I've spent a year training the doctors at the local VA and

the only one that started with any knowledge was a temporary who was there for

just 6 months!

> > > > >

> > > > > 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

Have you has a CT or MRI. If so what did they show?

> > >

> > > 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

If you give us your location someone may know of good Dr near 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

Need normal value for the lab. You have PA AT FIRST glance. His do they explain thievery low renin but high Aldo? If you have not yet read my evolution paper please do so now. It will make many issues clear. Eg why the meds they have bee. Using don't work and HCTZ tanked K. Begin to dash now and observe effects on u and K and BP. SOME are trying lumpectomy we will know in a few years. Take/send my art to all who have missed u so they can help all the others they are seeing. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 14, 2012, at 12:13, maggiekat7 <ljurkovic@...> wrote:

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 recommend DASH AND MCBs to start. If u ate back to normal then keep with that. If. I effect then insider surgery. Be sure u have ins first as AVS CANCOST UP to $18000 and surgery 35000. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 14, 2012, at 21:25, maggiekat7 <ljurkovic@...> wrote:

Hey, and thanks for the reply...studied hours and hours at the neuro-med library at UCLA! Might know the endo there by sight at least. Sorry to hear of your plight, but glad to hear you are better. I was just wondering about taking the whole thing because there's a lot of posts about the other adrenal not working and then people have to take steroids. I absolutely don't tolerate steroids well; they are like taking poison to me, so if there's any question of the other one not working and being left with that option, I might as well shoot myself!

I am going to Doc 4 on Tuesday. Doc 1 and 3 are endocrinologists, Doc 2 my cardiologist, Doc 4 is a nephrologist. I guess she will have to agree with one of the previous; since one is a maybe, and the others are yes and no; gotta be one of those, que no? If she doesn't seem to bright, I have a script for something from the cardio that blocks aldosterone and I'm thinking of stopping the other BP meds and taking that to see if it lowers my BP. If it does, then I just need recommendations as to the best docs and where to go for AVS...if not, then who knows, maybe make sure my thyroid is stable and then retest at that time. Right now tsh and t4 free are off just a tad...been adjusting the synthroid since menopause...I suppose that could impact all of this as well.

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? 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?

Are you back functioning normally yet? Do you lose or gain weight or does it impact that? Seems like it would, given it's connected to cortisol levels, but ????

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

> >

> > 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

You have PA. Classically and advanced. If u want to begin to feel better in a few days DASH to the max, begin the eplere and stop other meds but talk to your team. If you want to feel bad for a few more months till dx is clear then wait for the work up and surgery is my advice. R u in LA?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 14, 2012, at 21:55, maggiekat7 <ljurkovic@...> wrote:

If I am already taking Losartin and Norvasc, do I add the MCB or go off the other BP meds and start the Epler. I already have some of that one; cardio, doc 2 gave it to me, but said to wait to take it until after AVS. If I find a doc to do the AVS, and more of a reason to think it's worth having, I would like to get it dealth with because I have left flank pain, the low potassium is difficult, headaches, I don't know if the meds will deal with all that or just lower the BP? If nephrologist (doc 4, Tues) is ignorant as to this disease, I will go on the meds just to self diagnose, buy time to find a good doc somewhere to help further. I am considering Dr.G's offer to consult, but need to speak with him further about insurance coverage of his fees. Do you know if insurance covers his fees? I don't see why not, but would like to know.

BTW, I am a very active 52 year old. I ski, waterski, crochet, work, mother an 11 year old that I have to keep up with that wants me jumping on the trampoline and playing tennis with him. All of these symptoms are annoying and impairing my life overall. I have the brain fog, the lack of ability to sleep, the nocturnalism, when I used to be a 9pm to bed person, the constant headaches, horrific leg cramps, freezing hands and feet, numb toes, BP that is downright scary, constant thirst and when I ski, I have to stop all the time, I make it through the mornings ok, but by the midafternoon, I crash. I used to work out for an hour and now just 30 min. Can't get through a zumba class anymore. I don't know if I have this disorder yet, maybe I am just 52 and feeling it, but if there is a cure for this and it's not my age, but something wrong, then, I just need a good doc, a good AVS radiologist and a good surgeon.

> >

> > 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

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

Do you have references?

> >

> > > 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 will have to find one. Gr Grim says it hurts like hell.

> > >

> > > > 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 one study

http://jcem.endojournals.org/content/88/12/5814.full

> > > >

> > > > > 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

Treating PA treats the IR as IR is due to low KMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 14, 2012, at 21:58, msmith_1928 <janeray1940@...> wrote:

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

msmith1928 PA story final 11-4-11.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 he did not check your urine NA / K he has not monitored many or every one he treats follows it to the letter. Ask him to check u Na KMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 14, 2012, at 22:22, maggiekat7 <ljurkovic@...> wrote:

Cardio gave me epler, and DASH info long ago. She thinks we DASH well, even though BP has skyrocketed, she knows our diet and excercise. We first did Supeko's diet, then I had to be more insulin resistant and my husband more anti-inflammatory. So, we were pretty much dashing when I read about it. The brand name of the med starts with an I, I have to pick it up, haven't yet, pharmacy was out of it, will get it tomorrow, I guess. I will wait until neph on Tues weighs in and other labs are in and doc 2 takes a look at all labs again. Then, I'll think about the rest.....it's all daunting. Too many doc visits, period.

What is washing Spiro? What does that mean?

Just out of curiosity, don't say if you aren't comfortable...your PTSD? From this stuff?

> > > >

> > > > 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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