Val's story (con't)

[Guest guest]

recon she never read Conn's first case. See my review for a brief

oversight.

Indeed Dr. Conn even suggested that perhaps 25% of all DM were do to PA.

On May 22, 2008, at 9:45 PM, Valarie wrote:

> he also has multiple medical problems that would

> not be seen in hyperaldosteronism such as hyperglycemia, insulin

> resistance,

> etc. things that are generally seen in Cushing's disease.

[Guest guest]

The record-keeping has been invaluable for me. It's the only way I've been

able to isolate some cause and effect.

My doc wants me to take metoprolol when I get to 140/??. I really hate

taking it. I get breathless and can't do much, but will take it at some

point.

I take Elavil, too. I cry less when on it.

I hate to hear you're having aldo problems again. Refresh me, did you have

AVS?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of ipscalifornia

Dear Val,

Good for you for conducting your own experimenting.I have also had

irregular heart beats for about 40 years. It would come and go for

seemingly no reason. About 10 years ago, it became so unconfortable

and kept me from sleeping that my doctor put me on a beta blocker and

I now have no palpitations at all (currently on 100mg toprol xl a

day). 2 years ago, prior to my adrenalectomy, my cardiologists said

my heart showed no disease but there was clearly adosterone present

in my heart but should resolve with surgery. He also wants me to

stay on a beta blocker to protect my heart.Thankfully, I stayed on

the bb as I'm now in trouble with aldosterone again.

By keeping careful records like you're doing, I just discovered that

elavil lowers my bp. My doctors are in agreement with me (I thought

they would say I'm crazy). I've also found that 2 new meds that I've

tried raised my bp (lyrica and prednisone). I'm glad I found out but

it seems that I'm more and more limited to options for treatment.

I hope you get some help from you're new doctors and looking forward

to hearing what happens.

Good Luck

Jan

[Guest guest]

>

> The record-keeping has been invaluable for me. It's the only way

I've been

> able to isolate some cause and effect.

>

> My doc wants me to take metoprolol when I get to 140/??. I really

hate

> taking it. I get breathless and can't do much, but will take it at

some

> point.

>

> I take Elavil, too. I cry less when on it.

>

> I hate to hear you're having aldo problems again. Refresh me, did

you have

> AVS?

Val

Dear Val,

There are other bbs that you could try. I tried atenalol for awhile

but it made me too sleepy. Toprol seems to work well for me. My doc

just advised my to take the tropol at night instead of morning as he

thought it might be adding to the nausea problem I have in the

morning. So far it seems to be working.

I did not have AVS before surgery because it was clear that I had do

something right away.Bp was 195-200 over 90/95 and nothing was

getting it down. K was only 3.4 with maximum does of potassium and

sodium dropped to 114. There was a visable tumor on the left gland

(1.7) and my ARR was high plus salt loaded urine collection showed

clearly that there was a problem (don't remember the numbers). I had

tried many bp meds and combinations and none of them helped. Spiro

helped some but even at a low dose,it only helped if I added maxide

and that pushed my k up to 5.8. It also made me nauseous and dizzy

all day every day. Reading other's experience here, my condition

seemed to go downhill very fast but who knows how long I had it(at

least 20 years as that's when I had sudden onset hpt). Surgery was 2

years ago in August.

I felt pretty good for about 10 months but I was back on maxide about

2 months after surgery and the neuropathy came back gradually and now

I'm really struggling to save the other gland. My biggest complaint

is pain and every time I try another drug it raises my bp. I am now

up to 100mg of elavil. Trying to change to another drug is how I

discovered that elavil lowers my bp.

My husband is very medical and through research, he found a top

endocrinologist at UCSF that we are trying to get an appointment with.

I believe that the problem for people with this dread disease is that

the medical profession does not fully understand the effects of this

condition. If you read through the posts here you can see the

similarity of problems we all have depending on how advanced we are.

This denies us the treatment we need in order to have some quality of

life. I could go on and on with the wrong diagnosis and meds I have

recieved over the years. This is so complicated and doctors have so

little experience with this that the only hope is a doctor who has

seem some advanced cases.

Sorry to go on but I'm getting worn out by all of this and I need to

just vent once in awhile.

Thanks to all here who tell their experiences and help to make us

feel we are not alone.

Jan

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of

ipscalifornia

>

> Dear Val,

>

> Good for you for conducting your own experimenting.I have also had

> irregular heart beats for about 40 years. It would come and go for

> seemingly no reason. About 10 years ago, it became so unconfortable

> and kept me from sleeping that my doctor put me on a beta blocker

and

> I now have no palpitations at all (currently on 100mg toprol xl a

> day). 2 years ago, prior to my adrenalectomy, my cardiologists said

> my heart showed no disease but there was clearly adosterone present

> in my heart but should resolve with surgery. He also wants me to

> stay on a beta blocker to protect my heart.Thankfully, I stayed on

> the bb as I'm now in trouble with aldosterone again.

>

> By keeping careful records like you're doing, I just discovered

that

> elavil lowers my bp. My doctors are in agreement with me (I thought

> they would say I'm crazy). I've also found that 2 new meds that

I've

> tried raised my bp (lyrica and prednisone). I'm glad I found out

but

> it seems that I'm more and more limited to options for treatment.

>

> I hope you get some help from you're new doctors and looking

forward

> to hearing what happens.

>

> Good Luck

> Jan

>

>

>

>

>

[Guest guest]

Where to start.

My visit to Mayo was quite a dismal experience. I felt very confronted from

the moment I walked in. The physician thumbed through my records and a

stack of records my doc had sent. On the front of what my doc had sent, he

had written in blue felt-tip pen " OK RECON Primary Aldo Be sure Stanton is

in town. WFY 5/23/08 " (Stanton is the AVS radiologist.) I have that stack

of records.

Finally, he came across my aldo/renin results and said, " Ahh, here it is;

renin is too high. There is no way you can have an adenoma with a renin

that high. It should be below 0.5. " My renin was 1.35 and aldo was 28. On

low sodium ( about 30 - 75 - where I think I was at the time), normal renin

is 4.09 - 7.73. Three years ago, on more normal (but not excess) sodium, my

renins were 0.9 and 0.4. ARRs were 21 and 33. I asked the physician why

the divergence in renin from three years ago to now and he said he didn't

know.

The physician repeated several times that he is the expert. I could not

talk, especially given my brain malfunction right now. He told me there are

no symptoms of primary aldosteronism other than those of low potassium. If

there are no symptoms, then anything I was experiencing was invalid. I

tried to talk about my sweats, paralysis, sodium intolerance, etc. I

learned that I came for an aldosterone consultation and that was the only

thing that would be addressed. I have compiled our members' comments about

anxiety, sweats, etc., in the files section of this group. I showed him the

comments (without names). He said that anything you all say is not accurate

unless it references low potassium. He also said that surgery will not do

anything spiro doesn't do. According to the experiences of people on this

list, that may not be accurate.

Why my husband and I made that expensive and difficult trip is still

escaping me. If renin = 0.5 is the magic number, why was my appointment

approved?????

My BP was 152/87. It was measured with an automatic device that measures it

six times and then gives the average. That was pretty much in line with

what I'd been getting since being off spiro but controlling sodium.

He looked at the MRI I brought on CD. The left adrenal looked good but he

questioned the right one as it was a bit fuzzy. Then he said MRI's are just

not very good for detecting an adenoma. He did not ask for a CT.

He saw a letter from the cardiologist to Dr. Grim and asked, " Who is Dr.

Grim? " I could not tell whether he actually knew who he is or not. (Note:

Dr. Grim had referred me to the cardiologist, hence his name on a letter).

Then, he decided he needed new tests so he ordered renin, aldo, K, urinary

Na, etc. When I went back the next day, only renin, K and urinary Na had

come back. The only instruction I had was to be off spiro for six weeks.

Nothing was instructed about sodium. Results were as follows:

1) Urine Na = <7 (40 - 150) Below it says " Too low to quantitate "

2) Renin = 1.85 (no normal levels included - will have to get) I think

normal for that level of urinary Na is about 9 - 24

3) K = 3.8 (taken with tourniquet and clenched fist) I was on 20 mEq K +

3,000 mg in diet.

I was on HCTZ which, in addition to low sodium, tends to increase renin. I

don't understand why my lack of urinary sodium seemed to be totally missed

as a factor in the renin level. He said the average Minnesotan's urinary Na

is 150 and that he'd never seen such a low one. I would think that, as an

expert, he had seen many people control their sodium intake as well as I do.

I believe the whole concept of ARR blows up if the patient is on a low

sodium diet. Therefore, the validity of the ARR is in question unless

urinary sodium is known.

My return visit the next day had a whole different atmosphere. My husband

was with me.

He said I have " hypertension with probable inappropriate aldosterone

secretion, " the cause of which is unknown. He agreed with me that HCTZ is

inappropriate. I'd been on HCTZ for six years. I even took Actos and

metformin for a while. My glucose dropped to normal after only two weeks on

spiro.

I've read and read about this and have yet to find anything about renin

having to be below 0.5. In everything I've read, the renin/aldosterone

ratio is the one they look at for a first pass. In the Endocrine Society's

" Case Detection, Diagnosis, and Treatment of Patients with Primary

Aldosteronism: An Endocrine Society Clinical Practice Guideline " that was

just published, I can find no mention of renin having to be below 0.5. The

physician I saw was one author of those guidelines.

http://www.ncbi.nlm.nih.gov/pubmed/18552288?ordinalpos=1

<http://www.ncbi.nlm.nih.gov/pubmed/18552288?ordinalpos=1 & itool=EntrezSystem

2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

or

http://tinyurl.com/583w33

My aldo was not back when I left. I was so distressed at the inhospitable

atmosphere that I didn't much care where it was. As much as some would like

to deny it, sick people are human too.

I got the remainder in the mail. No urinary potassium was done.

Creatinine 0.8 (0.6-1.1) (Down from 1.1 when I'd been on 150 mg spiro)

Aldosterone 13 (<21)

Urinary aldo 19 (2 - 20)

For now, all I can do is take spironolactone, stay below 800 mg/day Na, and

juggle the daily K/Na problem. I've been horribly retaining water after

being off spiro for six weeks. I've gone back on estrogen, too. I've been

crying a lot and think low E is part of the problem. My nerves are still

raw but not as bad as last Fall and Winter. I think the 14 weeks of spiro

did some heart healing as the arrhythmias have more or less stopped. I

still have frequent sweats and am " brittle " (my word for anxious). I've

been up every two hours at night with sweats and urination.

If things do not turn around after a sufficient time back on spiro, I am

going to seek alternative or complimentary help. It is not normal to feel

constantly brittle like I do. I've lived with me for a long time and this

is not the normal me.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Sorry to hear about the visit to Mayo. But informing our group is

important I would think.

Most sing their praises but they were probably not as well prepared

as you were.

[Guest guest]

Hi Val

I am not a bit surprised reading about your visit to Mayo.Whitch one

did you waist your time and money at?? Same old story. hummm I had

seen 4 Endos in the last few years each one of them treated me like I

was a complaint machine not knowing nothing about myself. I have a

signed letter from #8 Endo stating that " Your hormones are in

balance, 2 months after I recieved a high aldo in labs from their

facility. So I took all the information from Dr. Grims website to go

see her, she wanted no part of his research on Conn's and wrote a

letter to primary care stating, I went there with the lab work and

other paper work that she did not need to get back at her. Making my

visit about her. LOL

I do believe that most all Endo's graduated at the very bottom of the

class and could barely make it through med school choosing

Endocronology and to prey upon or treat treat Diabetics with a

minumin of pencil pushing and intellengence. She was Endo #8. The

next one was even worse. After #8 and #9 I decided to go get the text

books for med students in Endocronology and in one month I figured

out what was wrong with me and found dr. Grim.

I was sick for 2 years with low K and no one ever checked aldo and

Renin.Oh my renin is always a 5 just sits at the bottom on the range.

I found living on bannanas made me feel better for years and I took

Estrogen which also helps keep K up. I cannot barely eat a bannana

now unless it is blended in a smoothe. I am jacked up to the max and

I am a nerves wreck. Lately I had to take valium for 2 days because I

could not stop crying. I take spiro and 3 other blood pressure pills.

I am still weak,shakey and beyond miserable my stomach feels like I

eat glass, and wood screws on a regular basis every day.

My swelling in now out of controll and my blood pressure in creeping

up I am sweating all the time now.

Another bad place for Endocronology in UCD in sacaramento. I was

there a few weeks ago and after telling the dr. I am getting much

worse and got bad pills of spiro from the pharmacy, I need some lab

work done, he said well see you next year. hmmmmmmmmm I thought to

myself at this rate probably not.

Any way stick to your guns your know your sick and sounds like you

have the early stages of Conn's. The lab work does not seem to be

very sensitive in the area that concerns us untill were almost dead.

More Endo delema is their labs a night mare on elm st. UCD in

Sacramento also said when my thyroid went kaput and i had a very low

Free T 4 the Professor said it was lab errors. I could no longer

drive a car and was passing out daily I didnt know what year it was

or who was president. But it was lab errors. I am so distrustfull now

of Endo's it is not funny they have almost killed me twice.

I found a Nurse practioner who put me on thyroid drugs as she could

read the lab report and it was not errors. She also prescribes all my

Conn's drugs as well for the last 2 years. AVS was a nightmare and

they punchured my vein. I am not me any more either this illness has

taken everything from me. I am close to just having surgery, my tumor

has grown to 1/2 " in a years time from being to small to be measured

a year ago. I have no MD I trust to make sure I live after surgery.

I just dont want to be alive any more the pain and suffering is

overwelming me.

ita

>

> Where to start.

>

> My visit to Mayo was quite a dismal experience. I felt very

confronted from

> the moment I walked in. The physician thumbed through my records

and a

> stack of records my doc had sent. On the front of what my doc had

sent, he

> had written in blue felt-tip pen " OK RECON Primary Aldo Be sure

Stanton is

> in town. WFY 5/23/08 " (Stanton is the AVS radiologist.) I have

that stack

> of records.

>

> Finally, he came across my aldo/renin results and said, " Ahh, here

it is;

> renin is too high. There is no way you can have an adenoma with a

renin

> that high. It should be below 0.5. " My renin was 1.35 and aldo

was 28. On

> low sodium ( about 30 - 75 - where I think I was at the time),

normal renin

> is 4.09 - 7.73. Three years ago, on more normal (but not excess)

sodium, my

> renins were 0.9 and 0.4. ARRs were 21 and 33. I asked the

physician why

> the divergence in renin from three years ago to now and he said he

didn't

> know.

>

> The physician repeated several times that he is the expert. I

could not

> talk, especially given my brain malfunction right now. He told me

there are

> no symptoms of primary aldosteronism other than those of low

potassium. If

> there are no symptoms, then anything I was experiencing was

invalid. I

> tried to talk about my sweats, paralysis, sodium intolerance, etc.

I

> learned that I came for an aldosterone consultation and that was

the only

> thing that would be addressed. I have compiled our members'

comments about

> anxiety, sweats, etc., in the files section of this group. I

showed him the

> comments (without names). He said that anything you all say is not

accurate

> unless it references low potassium. He also said that surgery will

not do

> anything spiro doesn't do. According to the experiences of people

on this

> list, that may not be accurate.

>

> Why my husband and I made that expensive and difficult trip is still

> escaping me. If renin = 0.5 is the magic number, why was my

appointment

> approved?????

>

> My BP was 152/87. It was measured with an automatic device that

measures it

> six times and then gives the average. That was pretty much in line

with

> what I'd been getting since being off spiro but controlling sodium.

>

> He looked at the MRI I brought on CD. The left adrenal looked good

but he

> questioned the right one as it was a bit fuzzy. Then he said MRI's

are just

> not very good for detecting an adenoma. He did not ask for a CT.

>

> He saw a letter from the cardiologist to Dr. Grim and asked, " Who

is Dr.

> Grim? " I could not tell whether he actually knew who he is or

not. (Note:

> Dr. Grim had referred me to the cardiologist, hence his name on a

letter).

>

> Then, he decided he needed new tests so he ordered renin, aldo, K,

urinary

> Na, etc. When I went back the next day, only renin, K and urinary

Na had

> come back. The only instruction I had was to be off spiro for six

weeks.

> Nothing was instructed about sodium. Results were as follows:

>

> 1) Urine Na = <7 (40 - 150) Below it says " Too low to quantitate "

> 2) Renin = 1.85 (no normal levels included - will have to get) I

think

> normal for that level of urinary Na is about 9 - 24

> 3) K = 3.8 (taken with tourniquet and clenched fist) I was on 20

mEq K +

> 3,000 mg in diet.

>

> I was on HCTZ which, in addition to low sodium, tends to increase

renin. I

> don't understand why my lack of urinary sodium seemed to be totally

missed

> as a factor in the renin level. He said the average Minnesotan's

urinary Na

> is 150 and that he'd never seen such a low one. I would think

that, as an

> expert, he had seen many people control their sodium intake as well

as I do.

>

>

> I believe the whole concept of ARR blows up if the patient is on a

low

> sodium diet. Therefore, the validity of the ARR is in question

unless

> urinary sodium is known.

>

> My return visit the next day had a whole different atmosphere. My

husband

> was with me.

>

> He said I have " hypertension with probable inappropriate aldosterone

> secretion, " the cause of which is unknown. He agreed with me that

HCTZ is

> inappropriate. I'd been on HCTZ for six years. I even took Actos

and

> metformin for a while. My glucose dropped to normal after only two

weeks on

> spiro.

>

> I've read and read about this and have yet to find anything about

renin

> having to be below 0.5. In everything I've read, the

renin/aldosterone

> ratio is the one they look at for a first pass. In the Endocrine

Society's

> " Case Detection, Diagnosis, and Treatment of Patients with Primary

> Aldosteronism: An Endocrine Society Clinical Practice Guideline "

that was

> just published, I can find no mention of renin having to be below

0.5. The

> physician I saw was one author of those guidelines.

> http://www.ncbi.nlm.nih.gov/pubmed/18552288?ordinalpos=1

> <http://www.ncbi.nlm.nih.gov/pubmed/18552288?

ordinalpos=1 & itool=EntrezSystem

> 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum>

>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSu

m

> or

> http://tinyurl.com/583w33

>

> My aldo was not back when I left. I was so distressed at the

inhospitable

> atmosphere that I didn't much care where it was. As much as some

would like

> to deny it, sick people are human too.

>

> I got the remainder in the mail. No urinary potassium was done.

> Creatinine 0.8 (0.6-1.1) (Down from 1.1 when I'd been on 150 mg

spiro)

> Aldosterone 13 (<21)

> Urinary aldo 19 (2 - 20)

>

> For now, all I can do is take spironolactone, stay below 800 mg/day

Na, and

> juggle the daily K/Na problem. I've been horribly retaining water

after

> being off spiro for six weeks. I've gone back on estrogen, too.

I've been

> crying a lot and think low E is part of the problem. My nerves are

still

> raw but not as bad as last Fall and Winter. I think the 14 weeks

of spiro

> did some heart healing as the arrhythmias have more or less

stopped. I

> still have frequent sweats and am " brittle " (my word for anxious).

I've

> been up every two hours at night with sweats and urination.

>

> If things do not turn around after a sufficient time back on spiro,

I am

> going to seek alternative or complimentary help. It is not normal

to feel

> constantly brittle like I do. I've lived with me for a long time

and this

> is not the normal me.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Clarence

Grim

>

> Sorry to hear about the visit to Mayo. But informing our group is

> important I would think.

>

> Most sing their praises but they were probably not as well prepared

> as you were.

>

>

>

>

>

[Guest guest]

Angies list is now doing drs

Sent from my iPhone

On Sep 19, 2008, at 9:36 AM, Farah Rahbar <farahbar@...> wrote:

> Hi Val:

> I've been thinking of going public with all our experiences with

> doctors

> online. I think if we post any kind of experience, good or bad will

> help

> future patients of any physician. I recently was searching for a good

> ophtholmologist and found the info online not very helpful even when

> I paid

> to get a doctor's background info, the info was not helpful at all.

> I think

> the more we place out comments and grade the doctors, the better care

> patients will receive, so for example, if I type a doctor's name on

> google,

> I should be able to see anything that people posted about him/her

> online.

>

> Farah

>

> On Fri, Sep 19, 2008 at 8:37 AM, Valarie <val@...>

> wrote:

>

> > Friends, I cannot tell you what good care I've gotten at National

> Jewish

> > Hospital in Denver. It is a respiratory treatment hospital and

> research

> > center. People with respiratory problems come from all over the

> world.

> > Granted, they don't treat PA, but Dr. Grim referred me to a

> cardiologist

> > there. He did several tests in June and I saw him on Wednesday. My

> heart

> > is in pretty good shape considering all I've gone through. It is

> normal

> > sized. It tends to pump a bit too hard but Dr. Weinberger didn't

> think that

> > was a problem. It was doing that back in 1999 when I first had an

> echo. I

> > have mild bicuspid and mitral valve dysfunction, probably from fen-

> phen.

> > Perhaps those valves will last a while longer. My BP is always

> elevated

> > when I'm there. This time, I took my machine to check and it was

> only off

> > by one point on the systolic and a few more on the diastolic. I

> think had I

> > re-checked, the diastolic would have come down. It always gets

> high when I

> > am nervous.

> >

> > Dr. Weinberger sent me to see a pulmonologist for a consultation on

> > carcinoid. He thinks there is hardly any chance but expressed his

> desire to

> > not miss anything. I saw that doc yesterday. That doc, Dr. Downey,

> is

> > going to get me an ultra thin slice CT with contrast. They have

> one of only

> > a few ultra-thin slice CT machines in the U.S. Something about 128

> slices

> > or something???

> >

> > Both of these doctors have treated me with respect and kindness.

> That is in

> > stark contrast with my Mayo Clinic experience. They have both

> expressed a

> > need to leave no stones unturned. That, again, is in start

> contrast with my

> > Mayo Clinic experience. When I tried to talk about what could be

> causing my

> > continued, severe sweats and other symptoms, the Mayo doctor

> barked that I

> > had come for an aldosterone consultation and that is all he would

> talk

> > about, and that there are no symptoms of hyperaldosteronism.

> >

> > Val

> >

> >

[Guest guest]

I have checked Angies list and basically doesn't have any valuable info

about physicians.

Farah

On Fri, Sep 19, 2008 at 11:03 AM, Lowerbp2 <lowerbp2@...> wrote:

> Angies list is now doing drs

>

> Sent from my iPhone

>

>

> On Sep 19, 2008, at 9:36 AM, Farah Rahbar

<farahbar@...<farahbar%40gmail.com>>

> wrote:

>

> > Hi Val:

> > I've been thinking of going public with all our experiences with

> > doctors

> > online. I think if we post any kind of experience, good or bad will

> > help

> > future patients of any physician. I recently was searching for a good

> > ophtholmologist and found the info online not very helpful even when

> > I paid

> > to get a doctor's background info, the info was not helpful at all.

> > I think

> > the more we place out comments and grade the doctors, the better care

> > patients will receive, so for example, if I type a doctor's name on

> > google,

> > I should be able to see anything that people posted about him/her

> > online.

> >

> > Farah

> >

> > On Fri, Sep 19, 2008 at 8:37 AM, Valarie

<val@...<val%40wyosip.com>>

>

> > wrote:

> >

> > > Friends, I cannot tell you what good care I've gotten at National

> > Jewish

> > > Hospital in Denver. It is a respiratory treatment hospital and

> > research

> > > center. People with respiratory problems come from all over the

> > world.

> > > Granted, they don't treat PA, but Dr. Grim referred me to a

> > cardiologist

> > > there. He did several tests in June and I saw him on Wednesday. My

> > heart

> > > is in pretty good shape considering all I've gone through. It is

> > normal

> > > sized. It tends to pump a bit too hard but Dr. Weinberger didn't

> > think that

> > > was a problem. It was doing that back in 1999 when I first had an

> > echo. I

> > > have mild bicuspid and mitral valve dysfunction, probably from fen-

> > phen.

> > > Perhaps those valves will last a while longer. My BP is always

> > elevated

> > > when I'm there. This time, I took my machine to check and it was

> > only off

> > > by one point on the systolic and a few more on the diastolic. I

> > think had I

> > > re-checked, the diastolic would have come down. It always gets

> > high when I

> > > am nervous.

> > >

> > > Dr. Weinberger sent me to see a pulmonologist for a consultation on

> > > carcinoid. He thinks there is hardly any chance but expressed his

> > desire to

> > > not miss anything. I saw that doc yesterday. That doc, Dr. Downey,

> > is

> > > going to get me an ultra thin slice CT with contrast. They have

> > one of only

> > > a few ultra-thin slice CT machines in the U.S. Something about 128

> > slices

> > > or something???

> > >

> > > Both of these doctors have treated me with respect and kindness.

> > That is in

> > > stark contrast with my Mayo Clinic experience. They have both

> > expressed a

> > > need to leave no stones unturned. That, again, is in start

> > contrast with my

> > > Mayo Clinic experience. When I tried to talk about what could be

> > causing my

> > > continued, severe sweats and other symptoms, the Mayo doctor

> > barked that I

> > > had come for an aldosterone consultation and that is all he would

> > talk

> > > about, and that there are no symptoms of hyperaldosteronism.

> > >

> > > Val

> > >

> > >