Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

[Guest guest]

, if you will go to the group home for Hyperaldosteronism, click on " Files " on the left, you will find a folder called " AVS stores. " That might get your started. If I could be 40 years old and healed by an adrenalectomy, I'd do it in a minute. I would not, however, give up an adrenal without competent AVS. Many radiologists are not competent. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of jessdell72 Hello,It seems very likely that I have Aldosteronism. I am awaiting theresults of my saline infusion test. Unfortunately, I hadn't read theinformation about collecting urine during the infusion testprior...and the hospital I went to didn't collect the urine.I have a lot to learn and read about PA, and I am so grateful thatI found this group. It is so wonderful to feel part of a group andnot " alone " in this. My major question right now is regarding AVS. Has anyone had it? Could you share your experience? Do you recommend it? I am a 39 and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal gland. My doctor said AVS is recommended for patients over 40 years old, but since I am so close to turning 40, she is not certain which way to go with me. She explained thepros and cons of each (cons: blood clots, invasive procedure.....pros:more certain to remove the CORRECT adrenal gland!). Obviously, weneed to await the final results of my infusion test, and unfortunatelyI was 1/2 way through the 4 hour test before they got my initial labsback that indicated my potassium was very low (2.8) even though we hadit under control (average 3.7) prior to the test...so I may have tohave the infusion test done again. Aaagghhh.If anyone has any advice or experiences to share, I would greatlyappreciate it. Thank you so much!

[Guest guest]

Hi - I had AVS twice before my adrenalectomy; both of my stories can be

found in Files > AVS Experiences (see the two beginning with msmith):

hyperaldosteronism/files/AVS%20Experiences

I was 45 at the time of diagnosis and based on my imaging and symptoms, a couple

of my doctors felt confident that I could have had surgery WITHOUT AVS first,

even though I was over 40. I refused - I wanted to know absolutely everything I

possibly could before taking that step!

If I were in your position, I would INSIST on AVS first. While there have been

some negative experiences here, neither one of my experiences was particularly

remarkable. Be sure you are in the hands of an experienced interventional

radiologist - let us know where in the world you are, and perhaps someone here

has a recommendation.

-msmith1928

Successful left laparoscopic adrenalectomy 10/13/11

>

> Hello,

>

> It seems very likely that I have Aldosteronism. I am awaiting the

> results of my saline infusion test. Unfortunately, I hadn't read the

> information about collecting urine during the infusion test

> prior...and the hospital I went to didn't collect the urine.

>

> I have a lot to learn and read about PA, and I am so grateful that

> I found this group. It is so wonderful to feel part of a group and

> not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> pros and cons of each (cons: blood clots, invasive procedure.....pros:

> more certain to remove the CORRECT adrenal gland!). Obviously, we

> need to await the final results of my infusion test, and unfortunately

> I was 1/2 way through the 4 hour test before they got my initial labs

> back that indicated my potassium was very low (2.8) even though we had

> it under control (average 3.7) prior to the test...so I may have to

> have the infusion test done again. Aaagghhh.

>

> If anyone has any advice or experiences to share, I would greatly

> appreciate it. Thank you so much!

>

> D.

>

[Guest guest]

Do you recall how much you passed during saline?We have a number of AVS stories in our files. Give us your detailed story when you have time with numbers as well. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 13, 2012, at 21:33, jessdell72 <jessdell72@...> wrote:

Hello,

It seems very likely that I have Aldosteronism. I am awaiting the

results of my saline infusion test. Unfortunately, I hadn't read the

information about collecting urine during the infusion test

prior...and the hospital I went to didn't collect the urine.

I have a lot to learn and read about PA, and I am so grateful that

I found this group. It is so wonderful to feel part of a group and

not "alone" in this. My major question right now is regarding AVS. Has anyone had it? Could you share your experience? Do you recommend it? I am a 39 and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal gland. My doctor said AVS is recommended for patients over 40 years old, but since I am so close to turning 40, she is not certain which way to go with me. She explained the

pros and cons of each (cons: blood clots, invasive procedure.....pros:

more certain to remove the CORRECT adrenal gland!). Obviously, we

need to await the final results of my infusion test, and unfortunately

I was 1/2 way through the 4 hour test before they got my initial labs

back that indicated my potassium was very low (2.8) even though we had

it under control (average 3.7) prior to the test...so I may have to

have the infusion test done again. Aaagghhh.

If anyone has any advice or experiences to share, I would greatly

appreciate it. Thank you so much!

D.

[Guest guest]

Hi !

And welcome. I know I'm not thrilled to be a member of this condition, but it's

definitely good to be a member of this group! I'm so glad you're getting the

help you need. It sounds like you are on track to figuring everything out.

Ultimately, it sounds like every person has a unique situation and unique

experiences regarding testing procedures. I'm a 35yr female, diagnosed with PA

last September, and I just had AVS done this last Tuesday. The big concern for

us was the quality of the interventional radiologist. It sounds like all signs

point to " might as well do it " IF you can expect the doc to catch the right

adrenal (the tricky one) and not nick an artery. So where you live, or where

you might consider driving to, could make a difference in your choice. That

said, my procedure was fantastic. I was given local anesthesia and some

sedatives (not valium....but something like that). In my opinion they gave me

too much because I slept for a LOOOOOOng time after. But, if that's my biggest

complaint, I call that lucky! I was told to expect it all to take 1-4 hours

because of that right adrenal, but I was back in my little room in 1.5 hours and

released about three hours later. They said they got many great samples. That

day and maybe the next, I felt only a little achy, almost like a stretched

muscle. Also, a little cramping in the abdomen, like gas pains or menstrual

cramps. And that was it! Now, five days later, you can hardly see the entry

mark. Good luck in your journey. We'll all be looking forward to hearing how

it goes.

~Ann

>

> Hello,

>

> It seems very likely that I have Aldosteronism. I am awaiting the

> results of my saline infusion test. Unfortunately, I hadn't read the

> information about collecting urine during the infusion test

> prior...and the hospital I went to didn't collect the urine.

>

> I have a lot to learn and read about PA, and I am so grateful that

> I found this group. It is so wonderful to feel part of a group and

> not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> pros and cons of each (cons: blood clots, invasive procedure.....pros:

> more certain to remove the CORRECT adrenal gland!). Obviously, we

> need to await the final results of my infusion test, and unfortunately

> I was 1/2 way through the 4 hour test before they got my initial labs

> back that indicated my potassium was very low (2.8) even though we had

> it under control (average 3.7) prior to the test...so I may have to

> have the infusion test done again. Aaagghhh.

>

> If anyone has any advice or experiences to share, I would greatly

> appreciate it. Thank you so much!

>

> D.

>

[Guest guest]

Hi!

I was 37 when my hbp was first picked up and 39 by the time a firm diagnosis was

made. I skipped AVS on the advice on my endocrinologist (I'm in Switzerland if

that's relevant) and went straight for surgery. So far - surgery was last summer

- it seems to have been 100% successful and my BP continues normal, all my renin

and aldosterone levels were back to normal, K climbing etc. last time I was

tested (August).

I was aware of the risks of skipping the test but my case was very clear cut - a

well defined 21mm growth on my left adrenal, right absolutely clear, bloods were

also clear cut (undetectable renin, aldosterone well over the normal range) so I

decided to take a punt. There were risks associated with the AVS, it would delay

the overall cure, my doctors were quite clear in their recommendations and it

was going to be very hard to arrange two bouts of surgery cover for my three

kids under five (I realise that shouldn't be a major consideration but it was a

factor for me).

AVS removes the doubt - or should do if it's performed well - so if you have the

chance of going somewhere with a good track record, I'd go for it - it's the

conservative approach - but your scenario does sound very similar to mine so I

guess much comes down to your attitude to risk.....

H

> >

> > Hello,

> >

> > It seems very likely that I have Aldosteronism. I am awaiting the

> > results of my saline infusion test. Unfortunately, I hadn't read the

> > information about collecting urine during the infusion test

> > prior...and the hospital I went to didn't collect the urine.

> >

> > I have a lot to learn and read about PA, and I am so grateful that

> > I found this group. It is so wonderful to feel part of a group and

> > not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> > pros and cons of each (cons: blood clots, invasive procedure.....pros:

> > more certain to remove the CORRECT adrenal gland!). Obviously, we

> > need to await the final results of my infusion test, and unfortunately

> > I was 1/2 way through the 4 hour test before they got my initial labs

> > back that indicated my potassium was very low (2.8) even though we had

> > it under control (average 3.7) prior to the test...so I may have to

> > have the infusion test done again. Aaagghhh.

> >

> > If anyone has any advice or experiences to share, I would greatly

> > appreciate it. Thank you so much!

> >

> > D.

> >

>

[Guest guest]

Ann do we have your AVS results yet?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 15, 2012, at 13:02, Ann Marie <annmariehardesty@...> wrote:

Hi !

And welcome. I know I'm not thrilled to be a member of this condition, but it's definitely good to be a member of this group! I'm so glad you're getting the help you need. It sounds like you are on track to figuring everything out. Ultimately, it sounds like every person has a unique situation and unique experiences regarding testing procedures. I'm a 35yr female, diagnosed with PA last September, and I just had AVS done this last Tuesday. The big concern for us was the quality of the interventional radiologist. It sounds like all signs point to "might as well do it" IF you can expect the doc to catch the right adrenal (the tricky one) and not nick an artery. So where you live, or where you might consider driving to, could make a difference in your choice. That said, my procedure was fantastic. I was given local anesthesia and some sedatives (not valium....but something like that). In my opinion they gave me too much because I slept for a LOOOOOOng time after.

But, if that's my biggest complaint, I call that lucky! I was told to expect it all to take 1-4 hours because of that right adrenal, but I was back in my little room in 1.5 hours and released about three hours later. They said they got many great samples. That day and maybe the next, I felt only a little achy, almost like a stretched muscle. Also, a little cramping in the abdomen, like gas pains or menstrual cramps. And that was it! Now, five days later, you can hardly see the entry mark. Good luck in your journey. We'll all be looking forward to hearing how it goes.

~Ann

>

> Hello,

>

> It seems very likely that I have Aldosteronism. I am awaiting the

> results of my saline infusion test. Unfortunately, I hadn't read the

> information about collecting urine during the infusion test

> prior...and the hospital I went to didn't collect the urine.

>

> I have a lot to learn and read about PA, and I am so grateful that

> I found this group. It is so wonderful to feel part of a group and

> not "alone" in this. My major question right now is regarding AVS. Has anyone had it? Could you share your experience? Do you recommend it? I am a 39 and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal gland. My doctor said AVS is recommended for patients over 40 years old, but since I am so close to turning 40, she is not certain which way to go with me. She explained the

> pros and cons of each (cons: blood clots, invasive procedure.....pros:

> more certain to remove the CORRECT adrenal gland!). Obviously, we

> need to await the final results of my infusion test, and unfortunately

> I was 1/2 way through the 4 hour test before they got my initial labs

> back that indicated my potassium was very low (2.8) even though we had

> it under control (average 3.7) prior to the test...so I may have to

> have the infusion test done again. Aaagghhh.

>

> If anyone has any advice or experiences to share, I would greatly

> appreciate it. Thank you so much!

>

> D.

>

[Guest guest]

You did not tell us how you have done on DASH AND or minerLocorticoid blockers MCBsMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 15, 2012, at 13:02, Ann Marie <annmariehardesty@...> wrote:

Hi !

And welcome. I know I'm not thrilled to be a member of this condition, but it's definitely good to be a member of this group! I'm so glad you're getting the help you need. It sounds like you are on track to figuring everything out. Ultimately, it sounds like every person has a unique situation and unique experiences regarding testing procedures. I'm a 35yr female, diagnosed with PA last September, and I just had AVS done this last Tuesday. The big concern for us was the quality of the interventional radiologist. It sounds like all signs point to "might as well do it" IF you can expect the doc to catch the right adrenal (the tricky one) and not nick an artery. So where you live, or where you might consider driving to, could make a difference in your choice. That said, my procedure was fantastic. I was given local anesthesia and some sedatives (not valium....but something like that). In my opinion they gave me too much because I slept for a LOOOOOOng time after.

But, if that's my biggest complaint, I call that lucky! I was told to expect it all to take 1-4 hours because of that right adrenal, but I was back in my little room in 1.5 hours and released about three hours later. They said they got many great samples. That day and maybe the next, I felt only a little achy, almost like a stretched muscle. Also, a little cramping in the abdomen, like gas pains or menstrual cramps. And that was it! Now, five days later, you can hardly see the entry mark. Good luck in your journey. We'll all be looking forward to hearing how it goes.

~Ann

>

> Hello,

>

> It seems very likely that I have Aldosteronism. I am awaiting the

> results of my saline infusion test. Unfortunately, I hadn't read the

> information about collecting urine during the infusion test

> prior...and the hospital I went to didn't collect the urine.

>

> I have a lot to learn and read about PA, and I am so grateful that

> I found this group. It is so wonderful to feel part of a group and

> not "alone" in this. My major question right now is regarding AVS. Has anyone had it? Could you share your experience? Do you recommend it? I am a 39 and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal gland. My doctor said AVS is recommended for patients over 40 years old, but since I am so close to turning 40, she is not certain which way to go with me. She explained the

> pros and cons of each (cons: blood clots, invasive procedure.....pros:

> more certain to remove the CORRECT adrenal gland!). Obviously, we

> need to await the final results of my infusion test, and unfortunately

> I was 1/2 way through the 4 hour test before they got my initial labs

> back that indicated my potassium was very low (2.8) even though we had

> it under control (average 3.7) prior to the test...so I may have to

> have the infusion test done again. Aaagghhh.

>

> If anyone has any advice or experiences to share, I would greatly

> appreciate it. Thank you so much!

>

> D.

>

[Guest guest]

Hi! Thanks for checking! I had written a long post about the AVS and it got

lost, so I had run out of steam to write it over. The Doc felt he had

gotten great samples and said that they send it to Rochester - Mayo for

analysis. I peeked on my patient records online and there appears to be some

raw data, but no commentary. I see four samples taken (not sure which are from

which adrenal. my left adrenal has a 2cm tumor). That would put the level of

aldosterone in the four samples, in order of collection: 55ng, <4ng, 21ng, and

54ng where the lab's normal range is <=21ng. Soooo curious which are from

which. My follow up with the nephrologist is a week from Tuesday.

Name Result Normal Range

Special Chemistry (04/10/2012 12:09 PM MST)

Cort, Random 41.9 mcg/dL

Adrenal (04/10/2012 12:09 PM MST)

Adrenocort Hormone 6.6 pg/mL See Comment

Adrenal (04/10/2012 12:09 PM MST)

Aldosterone 54.0 ng/dL <=21

Adrenal (04/10/2012 12:09 PM MST)

Norepinephrine Level 189.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 12.0 pg/mL See Comment

Special Chemistry (04/10/2012 12:07 PM MST)

Cort, Random 42.5 mcg/dL

Adrenal (04/10/2012 12:07 PM MST)

Adrenocort Hormone 8.5 pg/mL See Comment

Adrenal (04/10/2012 12:07 PM MST)

Aldosterone 21.0 ng/dL <=21

Adrenal (04/10/2012 12:07 PM MST)

Norepinephrine Level 139.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 21.0 pg/mL See Comment

Special Chemistry (04/10/2012 11:45 AM MST)

Cort, Random 35.4 mcg/dL

Adrenal (04/10/2012 11:45 AM MST)

Adrenocort Hormone 6.8 pg/mL See Comment

Adrenal (04/10/2012 11:45 AM MST)

Aldosterone <4.0 ng/dL <=21

Adrenal (04/10/2012 11:45 AM MST)

Norepinephrine Level 137.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 20.0 pg/mL See Comment

Special Chemistry (04/10/2012 11:10 AM MST)

Cort, Random 33.4 mcg/dL

Adrenal (04/10/2012 11:10 AM MST)

Adrenocort Hormone 8.9 pg/mL See Comment

Adrenal (04/10/2012 11:10 AM MST)

Aldosterone 55.0 ng/dL <=21

Adrenal (04/10/2012 11:10 AM MST)

Norepinephrine Level 343.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 39.0 pg/mL See Comment

> > >

> > > Hello,

> > >

> > > It seems very likely that I have Aldosteronism. I am awaiting the

> > > results of my saline infusion test. Unfortunately, I hadn't read the

> > > information about collecting urine during the infusion test

> > > prior...and the hospital I went to didn't collect the urine.

> > >

> > > I have a lot to learn and read about PA, and I am so grateful that

> > > I found this group. It is so wonderful to feel part of a group and

> > > not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> > > pros and cons of each (cons: blood clots, invasive procedure.....pros:

> > > more certain to remove the CORRECT adrenal gland!). Obviously, we

> > > need to await the final results of my infusion test, and unfortunately

> > > I was 1/2 way through the 4 hour test before they got my initial labs

> > > back that indicated my potassium was very low (2.8) even though we had

> > > it under control (average 3.7) prior to the test...so I may have to

> > > have the infusion test done again. Aaagghhh.

> > >

> > > If anyone has any advice or experiences to share, I would greatly

> > > appreciate it. Thank you so much!

> > >

> > > D.

> > >

> >

> >

>

[Guest guest]

P.S. the format of the results didn't transfer over, so FYI everywhere it says "see comment" were in regards to the normal range, and were not visible along with this data sheet. From: Ann Marie <annmariehardesty@...> hyperaldosteronism Sent: Sunday, April 15, 2012 12:54 PM Subject: Re: Does anyone

have experience, opinions or advice on Adrenal Vein Sampling?

Hi! Thanks for checking! I had written a long post about the AVS and it got lost, so I had run out of steam to write it over. The Doc felt he had gotten great samples and said that they send it to Rochester - Mayo for analysis. I peeked on my patient records online and there appears to be some raw data, but no commentary. I see four samples taken (not sure which are from which adrenal. my left adrenal has a 2cm tumor). That would put the level of aldosterone in the four samples, in order of collection: 55ng, <4ng, 21ng, and 54ng where the lab's normal range is <=21ng. Soooo curious which are from which. My follow up with the nephrologist is a week from Tuesday.

Name Result Normal Range

Special Chemistry (04/10/2012 12:09 PM MST)

Cort, Random 41.9 mcg/dL

Adrenal (04/10/2012 12:09 PM MST)

Adrenocort Hormone 6.6 pg/mL See Comment

Adrenal (04/10/2012 12:09 PM MST)

Aldosterone 54.0 ng/dL <=21

Adrenal (04/10/2012 12:09 PM MST)

Norepinephrine Level 189.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 12.0 pg/mL See Comment

Special Chemistry (04/10/2012 12:07 PM MST)

Cort, Random 42.5 mcg/dL

Adrenal (04/10/2012 12:07 PM MST)

Adrenocort Hormone 8.5 pg/mL See Comment

Adrenal (04/10/2012 12:07 PM MST)

Aldosterone 21.0 ng/dL <=21

Adrenal (04/10/2012 12:07 PM MST)

Norepinephrine Level 139.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 21.0 pg/mL See Comment

Special Chemistry (04/10/2012 11:45 AM MST)

Cort, Random 35.4 mcg/dL

Adrenal (04/10/2012 11:45 AM MST)

Adrenocort Hormone 6.8 pg/mL See Comment

Adrenal (04/10/2012 11:45 AM MST)

Aldosterone <4.0 ng/dL <=21

Adrenal (04/10/2012 11:45 AM MST)

Norepinephrine Level 137.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 20.0 pg/mL See Comment

Special Chemistry (04/10/2012 11:10 AM MST)

Cort, Random 33.4 mcg/dL

Adrenal (04/10/2012 11:10 AM MST)

Adrenocort Hormone 8.9 pg/mL See Comment

Adrenal (04/10/2012 11:10 AM MST)

Aldosterone 55.0 ng/dL <=21

Adrenal (04/10/2012 11:10 AM MST)

Norepinephrine Level 343.0 pg/mL See Comment

Epineph <10 pg/mL

Dopamine 39.0 pg/mL See Comment

> > >

> > > Hello,

> > >

> > > It seems very likely that I have Aldosteronism. I am awaiting the

> > > results of my saline infusion test. Unfortunately, I hadn't read the

> > > information about collecting urine during the infusion test

> > > prior...and the hospital I went to didn't collect the urine.

> > >

> > > I have a lot to learn and read about PA, and I am so grateful that

> > > I found this group. It is so wonderful to feel part of a group and

> > > not "alone" in this. My major question right now is regarding AVS. Has anyone had it? Could you share your experience? Do you recommend it? I am a 39 and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal gland. My doctor said AVS is recommended for patients over 40 years old, but since I am so close to turning 40, she is not certain which way to go with me. She explained the

> > > pros and cons of each (cons: blood clots, invasive procedure.....pros:

> > > more certain to remove the CORRECT adrenal gland!). Obviously, we

> > > need to await the final results of my infusion test, and unfortunately

> > > I was 1/2 way through the 4 hour test before they got my initial labs

> > > back that indicated my potassium was very low (2.8) even though we had

> > > it under control (average 3.7) prior to the test...so I may have to

> > > have the infusion test done again. Aaagghhh.

> > >

> > > If anyone has any advice or experiences to share, I would greatly

> > > appreciate it. Thank you so much!

> > >

> > > D.

> > >

> >

> >

>

[Guest guest]

I had one AVS in January and another in early March. During both, I chose to

forgo sedation, I'd had several heart caths before and felt more comfortable

being wide awake. After the initial shot of local anesthetic, all you are able

to feel is dull pressure and if you are able to remain still lack of sedation is

not a problem.

During the first AVS the view screens were positioned where I was able to see

the entire test. The Dr. performing the procedure was able to get to the right

adrenal on the first try and take the samples. I watched and listened

throughout the whole procedure. Each sample was identified and confirmed by the

the dr and staff of the cath lab. This is the same staff that has performed

numerous heart caths on me and are great at pointing out what is on the screen

and answering questions. It was a simple quick and professional procedure.

However when the results came back it appeared that at some point the blood

samples became mixed up. Based on my experiences in the cath lab, this likely

happened in later handling of the samples. The results did not match what my

scans indicated and the cortisol and aldosterone results were not consistent

with each other indicating the adrenal without the adenoma was overproducing

aldosterone but with a cortisol reading that was more in line with normal

production.

My surgeon thought that a second test was in order. The second AVS was

performed at another hospital with another radiologist. I again refused

sedation. The staff was very professional but very surprised that I did not

want to be sedated. The dr came in and the first thing he did was check with

the tech as to the labeling of the sample tubes. Unlike the first procedure, my

right adrenal proved to be troublesome. They must have tried every size and

shape of catheter in the lab in order to get to the correct location to take the

sample. In addition, the chief radiologist called in another radiologist to

assist him. About half-way through the procedure, the radiologist tried to

apologize but I stopped him. I let him know that I was fine and not

uncomfortable - only feeling the usual dull pressure associated with a cath. I

also let him know that I was aware that the right adrenal could be difficult to

reach and that I was ok with anything he needed to do in order to get the sample

- including sedation if he felt it was necessary. He let out a breath and with

what seemed like a sense of relief said " Good - that's the kind of patient I

like. " He went back to work and after a few more tries everything was in

position and the samples were taken. Again the samples were identified and

confirmed. The lab results were consistent with each other and the scans.

In looking back, I perhaps should have taken the sedation on the second AVS -

not for me but for the radiologist and the staff. I have had many similar

procedures without sedation but they have all involved the same team. All but

the first one were performed without any sedation only local anesthesia. This

choice was made based on my experience with my first heart cath in which life

threatening complications developed and my sedation hindered my ability to

respond to the medical personnel. I have no fear of these cath procedures now -

the only pain is from the initial shot and after that only a dull pressure - and

my usual cath team knows me well enough that they know what to expect from me.

However, if I ever have another cath procedure with another team, I will elect

to have mild sedation to help with their comfort level.

I had my adrenalectomy three weeks ago. While I have a way to o with tweeking

meds, I feel better than I have in years.

[Guest guest]

Hi Dr. Grimm, Unfortunately, the hospital I went do didn't collect the urine. It seems so odd that they wouldn't have?!? If they have to re-do the test due to the low potassium, I will insist that they collect urine next time. I will pick up a copy of my tests to date so I can list my numbers etc soon. Thank you for your feedback!Green Bay, Wisconsin

[Guest guest]

Looks like ACTH was not given during the procedure.Yes without sides hard to interpret.No sure what cortisol "random" means trust it was from adrenal with each sample.or Adrenocrot Hormone from Adrenal -trust they were not measuring ACTH from adrenal as does not give information that I know of. Also hope somewhere they have a detailed log of which adrenal was which.Keep us posted.We have a form in our files so they or you or we can enter data when we know side.My guess is that "Adrenal 3 is from the liver as the aldo is very low. But need all the details. CE Grim MD On Apr 15, 2012, at 2:54 PM, Ann Marie wrote: Hi! Thanks for checking! I had written a long post about the AVS and it got lost, so I had run out of steam to write it over. The Doc felt he had gotten great samples and said that they send it to Rochester - Mayo for analysis. I peeked on my patient records online and there appears to be some raw data, but no commentary. I see four samples taken (not sure which are from which adrenal. my left adrenal has a 2cm tumor). That would put the level of aldosterone in the four samples, in order of collection: 55ng, <4ng, 21ng, and 54ng where the lab's normal range is <=21ng. Soooo curious which are from which. My follow up with the nephrologist is a week from Tuesday. Name Result Normal Range Special Chemistry (04/10/2012 12:09 PM MST) Cort, Random 41.9 mcg/dL Adrenal (04/10/2012 12:09 PM MST) Adrenocort Hormone 6.6 pg/mL See Comment Adrenal (04/10/2012 12:09 PM MST) Aldosterone 54.0 ng/dL <=21Lets call the one above adrenal 1:aldo 54/cort 42The one below is adrenal 2:aldo 21/cort 42Then we have adrenal 3aldo 4.4/cort 35.4Adrenal 4aldo 55/cort 33.4 Adrenal (04/10/2012 12:09 PM MST) Norepinephrine Level 189.0 pg/mL See Comment Epineph <10 pg/mL Dopamine 12.0 pg/mL See Comment Special Chemistry (04/10/2012 12:07 PM MST) Cort, Random 42.5 mcg/dL Adrenal (04/10/2012 12:07 PM MST) Adrenocort Hormone 8.5 pg/mL See Comment Adrenal (04/10/2012 12:07 PM MST) Aldosterone 21.0 ng/dL <=21 Adrenal (04/10/2012 12:07 PM MST) Norepinephrine Level 139.0 pg/mL See Comment Epineph <10 pg/mL Dopamine 21.0 pg/mL See Comment ADRENAL 3pecial Chemistry (04/10/2012 11:45 AM MST) Cort, Random 35.4 mcg/dL Adrenal (04/10/2012 11:45 AM MST) Adrenocort Hormone 6.8 pg/mL See Comment Adrenal (04/10/2012 11:45 AM MST) Aldosterone <4.0 ng/dL <=21 Adrenal (04/10/2012 11:45 AM MST) Norepinephrine Level 137.0 pg/mL See Comment Epineph <10 pg/mL Dopamine 20.0 pg/mL See CommentADRENAL 4 Special Chemistry (04/10/2012 11:10 AM MST) Cort, Random 33.4 mcg/dL Adrenal (04/10/2012 11:10 AM MST) Adrenocort Hormone 8.9 pg/mL See Comment Adrenal (04/10/2012 11:10 AM MST) Aldosterone 55.0 ng/dL <=21 Adrenal (04/10/2012 11:10 AM MST) Norepinephrine Level 343.0 pg/mL See Comment Epineph <10 pg/mL Dopamine 39.0 pg/mL See Comment > > > > > > Hello, > > > > > > It seems very likely that I have Aldosteronism. I am awaiting the > > > results of my saline infusion test. Unfortunately, I hadn't read the > > > information about collecting urine during the infusion test > > > prior...and the hospital I went to didn't collect the urine. > > > > > > I have a lot to learn and read about PA, and I am so grateful that > > > I found this group. It is so wonderful to feel part of a group and > > > not "alone" in this. My major question right now is regarding AVS. Has anyone had it? Could you share your experience? Do you recommend it? I am a 39 and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal gland. My doctor said AVS is recommended for patients over 40 years old, but since I am so close to turning 40, she is not certain which way to go with me. She explained the > > > pros and cons of each (cons: blood clots, invasive procedure.....pros: > > > more certain to remove the CORRECT adrenal gland!). Obviously, we > > > need to await the final results of my infusion test, and unfortunately > > > I was 1/2 way through the 4 hour test before they got my initial labs > > > back that indicated my potassium was very low (2.8) even though we had > > > it under control (average 3.7) prior to the test...so I may have to > > > have the infusion test done again. Aaagghhh. > > > > > > If anyone has any advice or experiences to share, I would greatly > > > appreciate it. Thank you so much! > > > > > > D. > > > > > > > >

[Guest guest]

Thanks for the info. If you can put this in our AVS experiences under LK's AVS 1 and 2. Keep us posted on BPBe certain you get copy of the pathology report for both you and family.CE Grin MDOn Apr 15, 2012, at 3:48 PM, lk.barns wrote: I had one AVS in January and another in early March. During both, I chose to forgo sedation, I'd had several heart caths before and felt more comfortable being wide awake. After the initial shot of local anesthetic, all you are able to feel is dull pressure and if you are able to remain still lack of sedation is not a problem. During the first AVS the view screens were positioned where I was able to see the entire test. The Dr. performing the procedure was able to get to the right adrenal on the first try and take the samples. I watched and listened throughout the whole procedure. Each sample was identified and confirmed by the the dr and staff of the cath lab. This is the same staff that has performed numerous heart caths on me and are great at pointing out what is on the screen and answering questions. It was a simple quick and professional procedure. However when the results came back it appeared that at some point the blood samples became mixed up. Based on my experiences in the cath lab, this likely happened in later handling of the samples. The results did not match what my scans indicated and the cortisol and aldosterone results were not consistent with each other indicating the adrenal without the adenoma was overproducing aldosterone but with a cortisol reading that was more in line with normal production. My surgeon thought that a second test was in order. The second AVS was performed at another hospital with another radiologist. I again refused sedation. The staff was very professional but very surprised that I did not want to be sedated. The dr came in and the first thing he did was check with the tech as to the labeling of the sample tubes. Unlike the first procedure, my right adrenal proved to be troublesome. They must have tried every size and shape of catheter in the lab in order to get to the correct location to take the sample. In addition, the chief radiologist called in another radiologist to assist him. About half-way through the procedure, the radiologist tried to apologize but I stopped him. I let him know that I was fine and not uncomfortable - only feeling the usual dull pressure associated with a cath. I also let him know that I was aware that the right adrenal could be difficult to reach and that I was ok with anything he needed to do in order to get the sample - including sedation if he felt it was necessary. He let out a breath and with what seemed like a sense of relief said "Good - that's the kind of patient I like." He went back to work and after a few more tries everything was in position and the samples were taken. Again the samples were identified and confirmed. The lab results were consistent with each other and the scans. In looking back, I perhaps should have taken the sedation on the second AVS - not for me but for the radiologist and the staff. I have had many similar procedures without sedation but they have all involved the same team. All but the first one were performed without any sedation only local anesthesia. This choice was made based on my experience with my first heart cath in which life threatening complications developed and my sedation hindered my ability to respond to the medical personnel. I have no fear of these cath procedures now - the only pain is from the initial shot and after that only a dull pressure - and my usual cath team knows me well enough that they know what to expect from me. However, if I ever have another cath procedure with another team, I will elect to have mild sedation to help with their comfort level. I had my adrenalectomy three weeks ago. While I have a way to o with tweeking meds, I feel better than I have in years.

[Guest guest]

Do you have any estimate of how much you peeded during the infusion?Did you go one or twice or none.CE Grim MDOn Apr 15, 2012, at 7:18 PM, Jess Dellemann wrote: Hi Dr. Grimm, Unfortunately, the hospital I went do didn't collect the urine. It seems so odd that they wouldn't have?!? If they have to re-do the test due to the low potassium, I will insist that they collect urine next time. I will pick up a copy of my tests to date so I can list my numbers etc soon. Thank you for your feedback!Green Bay, Wisconsin

[Guest guest]

I went at least 4 times during the 4 hour test. From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...>

Sent: Monday, April 16, 2012 12:15 AM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

Do you have any estimate of how much you peeded during the infusion?Did you go one or twice or none.CE Grim MDOn Apr 15, 2012, at 7:18 PM, Jess Dellemann wrote: Hi Dr. Grimm, Unfortunately, the hospital I went do didn't collect the urine. It seems so odd that they wouldn't have?!? If they have to re-do the test due to the low potassium, I will insist that they collect urine next time. I will pick up a copy of my tests to date so I can list my

numbers etc soon. Thank you for your feedback!Green Bay, Wisconsin

[Guest guest]

Any idea at all about how much each time?Sounds like the total was over 1 liter or 1 quart? Estimate is good enough. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 16, 2012, at 6:42, Jess Dellemann <jessdell72@...> wrote:

I went at least 4 times during the 4 hour test. From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...>

Sent: Monday, April 16, 2012 12:15 AM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

Do you have any estimate of how much you peeded during the infusion?Did you go one or twice or none.CE Grim MDOn Apr 15, 2012, at 7:18 PM, Jess Dellemann wrote: Hi Dr. Grimm, Unfortunately, the hospital I went do didn't collect the urine. It seems so odd that they wouldn't have?!? If they have to re-do the test due to the low potassium, I will insist that they collect urine next time. I will pick up a copy of my tests to date so I can list my

numbers etc soon. Thank you for your feedback!Green Bay, Wisconsin

[Guest guest]

, I may have the most current info re: AVS, I had my bandages from it

removed this morning! I will go ahead and do a general post but if you have

specific questions, just ask.

.....

>

> Hello,

>

> It seems very likely that I have Aldosteronism. I am awaiting the

> results of my saline infusion test. Unfortunately, I hadn't read the

> information about collecting urine during the infusion test

> prior...and the hospital I went to didn't collect the urine.

>

> I have a lot to learn and read about PA, and I am so grateful that

> I found this group. It is so wonderful to feel part of a group and

> not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> pros and cons of each (cons: blood clots, invasive procedure.....pros:

> more certain to remove the CORRECT adrenal gland!). Obviously, we

> need to await the final results of my infusion test, and unfortunately

> I was 1/2 way through the 4 hour test before they got my initial labs

> back that indicated my potassium was very low (2.8) even though we had

> it under control (average 3.7) prior to the test...so I may have to

> have the infusion test done again. Aaagghhh.

>

> If anyone has any advice or experiences to share, I would greatly

> appreciate it. Thank you so much!

>

> D.

>

[Guest guest]

Yes, I would think it would be at least a quart. From: Clarence Grim <lowerbp2@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, April 16, 2012 8:18 AM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

Any idea at all about how much each time?Sounds like the total was over 1 liter or 1 quart? Estimate is good enough. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 16, 2012, at 6:42, Jess Dellemann <jessdell72@...> wrote:

I went at least 4 times during the 4 hour test. From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...>

Sent: Monday, April 16, 2012 12:15 AM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

Do you have any estimate of how much you peeded during the infusion?Did you go one or twice or none.CE Grim MDOn Apr 15, 2012, at 7:18 PM, Jess Dellemann wrote: Hi Dr. Grimm, Unfortunately, the hospital I went do didn't collect the urine. It seems so odd that they wouldn't have?!? If they have to re-do the test due to the low potassium, I will insist that they collect urine next time. I will pick up a copy of my tests to date so I can list

my

numbers etc soon. Thank you for your feedback!Green Bay, Wisconsin

[Guest guest]

, I will all but guarantee the 40 year old rule is a financial / acturial

rule. The money and who pays for it are a major factor. I do believe a

risk/benefit appraisal must be taken into consideration since there are risks

associated with every thing you do!

>

> Hello,

>

> It seems very likely that I have Aldosteronism. I am awaiting the

> results of my saline infusion test. Unfortunately, I hadn't read the

> information about collecting urine during the infusion test

> prior...and the hospital I went to didn't collect the urine.

>

> I have a lot to learn and read about PA, and I am so grateful that

> I found this group. It is so wonderful to feel part of a group and

> not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> pros and cons of each (cons: blood clots, invasive procedure.....pros:

> more certain to remove the CORRECT adrenal gland!). Obviously, we

> need to await the final results of my infusion test, and unfortunately

> I was 1/2 way through the 4 hour test before they got my initial labs

> back that indicated my potassium was very low (2.8) even though we had

> it under control (average 3.7) prior to the test...so I may have to

> have the infusion test done again. Aaagghhh.

>

> If anyone has any advice or experiences to share, I would greatly

> appreciate it. Thank you so much!

>

> D.

>

[Guest guest]

At least a quart suggests PA. Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired (well semi-retired) Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The GOAL of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, and low potassium (K). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Without excess salt in the diet, aldosterone cannot do most of its damage. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Conn's Stories. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. I trained with he and his team in Ann Arbor, MI in 1969. To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The Deadly Duo. Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds in only 2-3 days. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 4. Measure your own BP and insist that your health care team always measures BP correctly with an recently calibrated device: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. There is a brief discussion of this in my Evolution Article. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day. 2. No BP meds in last 4-12 weeks depending on meds and Drs advice. 3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone without this. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldosterone and K using our guidelines to get an accurate K. Try to get this done about 1-4 hours after you have been out of bed. Be sure the laboratory orders and does aldosterone NOT aldolase. 5. Send us the results with the normal values for your lab. 6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I call this Dr. Grim’s “Quick Pee Test” for PA. 7. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 4/20/11 for me would be Grim110420. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/291869. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.11. Learn as much as you can about how High Blood Pressure should be diagnosed and managed: Go to nih.gov and download and read the latest Joint National Commission (JNC) Report to get an overview on current guidelines. I have always asked all my staff (including secretaries) to read this so they can communicate the importance of high blood pressure to my patients. Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FASH.Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. On Apr 16, 2012, at 3:53 PM, Jess Dellemann wrote: Yes, I would think it would be at least a quart. From: Clarence Grim <lowerbp2@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, April 16, 2012 8:18 AM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling? Any idea at all about how much each time?Sounds like the total was over 1 liter or 1 quart? Estimate is good enough. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 16, 2012, at 6:42, Jess Dellemann <jessdell72@...> wrote: I went at least 4 times during the 4 hour test. From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Monday, April 16, 2012 12:15 AM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling? Do you have any estimate of how much you peeded during the infusion?Did you go one or twice or none.CE Grim MDOn Apr 15, 2012, at 7:18 PM, Jess Dellemann wrote: Hi Dr. Grimm, Unfortunately, the hospital I went do didn't collect the urine. It seems so odd that they wouldn't have?!? If they have to re-do the test due to the low potassium, I will insist that they collect urine next time. I will pick up a copy of my tests to date so I can list my numbers etc soon. Thank you for your feedback!Green Bay, Wisconsin

[Guest guest]

Be certain they measure the urine voulme during the infusion on of the saline.Send us results when you get last saline numbers. I have prob done more salines than most. CE Grim MDOn Apr 16, 2012, at 9:25 PM, wrote:> more certain to remove the CORRECT adrenal gland!). Obviously, we> need to await the final results of my infusion test, and unfortunately> I was 1/2 way through the 4 hour test before they got my initial labs> back that indicated my potassium was very low (2.8) even though we had> it under control (average 3.7) prior to the test...so I may have to> have the infusion test done again. Aaagghhh.

[Guest guest]

Had you been eating out a lot or ordered to eat a high salt diet before the saline. You may have outsalted your diet K and or any meds you were on before the saline.CE Grim MDOn Apr 16, 2012, at 9:25 PM, wrote:Obviously, we> need to await the final results of my infusion test, and unfortunately> I was 1/2 way through the 4 hour test before they got my initial labs> back that indicated my potassium was very low (2.8) even though we had> it under control (average 3.7) prior to the test...so I may have to> have the infusion test done again. Aaagghhh.

[Guest guest]

I'm not sure how these statments got attributed to me - did someone's snipper

get away from them?

.....

>

> > Obviously, we

> > > need to await the final results of my infusion test, and

> > unfortunately

> > > I was 1/2 way through the 4 hour test before they got my initial

> > labs

> > > back that indicated my potassium was very low (2.8) even though we

> > had

> > > it under control (average 3.7) prior to the test...so I may have to

> > > have the infusion test done again. Aaagghhh.

>

[Guest guest]

I think that oversimplifies it - the guideline is in existence in Europe under

national health systems too. Maybe that makes it more likely to be influenced by

public health spending but it is the doctors that have recommended the cut off.

And they'd be the ones benefitting financially from additional procedures,

H

> >

> > Hello,

> >

> > It seems very likely that I have Aldosteronism. I am awaiting the

> > results of my saline infusion test. Unfortunately, I hadn't read the

> > information about collecting urine during the infusion test

> > prior...and the hospital I went to didn't collect the urine.

> >

> > I have a lot to learn and read about PA, and I am so grateful that

> > I found this group. It is so wonderful to feel part of a group and

> > not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> > pros and cons of each (cons: blood clots, invasive procedure.....pros:

> > more certain to remove the CORRECT adrenal gland!). Obviously, we

> > need to await the final results of my infusion test, and unfortunately

> > I was 1/2 way through the 4 hour test before they got my initial labs

> > back that indicated my potassium was very low (2.8) even though we had

> > it under control (average 3.7) prior to the test...so I may have to

> > have the infusion test done again. Aaagghhh.

> >

> > If anyone has any advice or experiences to share, I would greatly

> > appreciate it. Thank you so much!

> >

> > D.

> >

>

[Guest guest]

Obviously you have different resources than I and I could be wrong. My source

is a world renown Endroconolgy team primarily from Greece and currently doing a

lot of work in this area at the National Institute of Health in Bethesda

land, USA. One of the doctors mentioned he is currently working on this

issue and when I told him I would quit the protocol if he told me it was

anything other than what I stated he asked if I would do a prepublication review

of his publication. (I am still part of the protocol BTW.)

What little I know about doctors and their desire " to do no harm " and actuaraies

and their desire to weigh all factors and do probabilities, the ones I was

associated with for 27 years were concerned about life and death so they didn't

have to factor in QOL issues, my guess is my answer is pretty close. Maybe you

would like to expand on your opinion.

> > >

> > > Hello,

> > >

> > > It seems very likely that I have Aldosteronism. I am awaiting the

> > > results of my saline infusion test. Unfortunately, I hadn't read the

> > > information about collecting urine during the infusion test

> > > prior...and the hospital I went to didn't collect the urine.

> > >

> > > I have a lot to learn and read about PA, and I am so grateful that

> > > I found this group. It is so wonderful to feel part of a group and

> > > not " alone " in this. My major question right now is regarding AVS. Has

anyone had it? Could you share your experience? Do you recommend it? I am a 39

and 3/4 years old female. A CT scan shows a 2.5 cm adenoma on my left adrenal

gland. My doctor said AVS is recommended for patients over 40 years old, but

since I am so close to turning 40, she is not certain which way to go with me.

She explained the

> > > pros and cons of each (cons: blood clots, invasive procedure.....pros:

> > > more certain to remove the CORRECT adrenal gland!). Obviously, we

> > > need to await the final results of my infusion test, and unfortunately

> > > I was 1/2 way through the 4 hour test before they got my initial labs

> > > back that indicated my potassium was very low (2.8) even though we had

> > > it under control (average 3.7) prior to the test...so I may have to

> > > have the infusion test done again. Aaagghhh.

> > >

> > > If anyone has any advice or experiences to share, I would greatly

> > > appreciate it. Thank you so much!

> > >

> > > D.

> > >

> >

>