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

[Guest guest]

Might depend on who has better lobbyist.

> > > >

> > > > 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 think I missed it but do you have PA and if not what is your diagnosis.Sent from my Verizon Wireless BlackBerryFrom: " " <jclark24p@...>Sender: hyperaldosteronism Date: Tue, 17 Apr 2012 20:56:15 +0000<hyperaldosteronism >Reply hyperaldosteronism Subject: Re: Does anyone have experience,opinions or advice on Adrenal Vein Sampling? 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.> > >> >>

[Guest guest]

Phyllis, I'm not sure that you missed it because I have not been officially

told. There are a quarter million dollars of tests out there currently being

analysed and they won't tell me until they know the answer. We are assuming I

have PA and it is " masking " something which may be known as " 17 Hydroxy Steroid "

(I have officially heard that term once so I may be wrong.) I believe it has

something to do with excess cortisol but I am reaching at this point.

AVS among other things need to come back and they then need to provide me what

they know and we, I emphasize WE, need to decide the best way to proceed. I

feel like I am in the early chapters of a mystery and am quite sure I'll be

invited back to Bethesda! WHAT A TRIP and I'm taking it at your expense!

Thanks! (Well, I did invest $350 travel money but bet they will pay for the

next one!)

> > > >

> > > > 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]

Maybe someone flipped a coin or had a dart board! (I bet if you were under 40

and was accepted to the protocol I am on you would be invited to have an AVS,

any takers?)

> > > > >

> > > > > 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]

So you never paid taxes? I would think it is on OUR money.I recommend you have them send me a copy of the complete report as one of the members of your health care team if you approve. The Dr. report might be a bit different but maybe not. CE Grim MDOn Apr 17, 2012, at 5:41 PM, wrote: Phyllis, I'm not sure that you missed it because I have not been officially told. There are a quarter million dollars of tests out there currently being analysed and they won't tell me until they know the answer. We are assuming I have PA and it is "masking" something which may be known as "17 Hydroxy Steroid" (I have officially heard that term once so I may be wrong.) I believe it has something to do with excess cortisol but I am reaching at this point. AVS among other things need to come back and they then need to provide me what they know and we, I emphasize WE, need to decide the best way to proceed. I feel like I am in the early chapters of a mystery and am quite sure I'll be invited back to Bethesda! WHAT A TRIP and I'm taking it at your expense! Thanks! (Well, I did invest $350 travel money but bet they will pay for the next one!) > > > > > > > > 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'm sorry, I don't follow your Greek doctor example.

I'm used to two different systems and by the sound of it both are very different

to the US. The long discussions about politics and funding on this board leave

me cold because they bear no relevance to 'my world'.

Here in Switzerland the system is 100% private - no health insurance, no visa,

no living in the country. There may be influence at higher levels over the

medical community but from all my experience at individual patient level, the

doctor will choose the best treatment for the patient irrelevant of cost.

Because the patient has insurance and they claim it back from the health

insurance company (who ae all well funded too), there is an element of 'cost is

irrelevant' which was new to me. A lot of people get rich under the system, but

most of Switzerland is rich by international standards. So there will have been

absolutely no pressure from my health insurance company onto my endocrinologist

to not get an AVS carried out because there was no interaction between the two -

my doctor didn't even know which company insures me.

In the Uk and Sweden where I have lived before, there is a public health system

and costs are more tightly controlled. I know there are some drugs that may be

released in some areas but not others because the funding varies. However, the

national bodies that represent doctors are also powerful and are fierce

advocates of patient rights. They're still not at the stage of politicians

deciding on medical priorities.

The purely economic argument also falls flat because AVS is a cheaper procedure

than adrenalectomy so if the outcome of AVS is that adrenalectomy would not be

successful, the health insurance companies or government would save some money.

The only reason the logic holds is if 99% (or whatever high percentage) of

patients under 40, with a well defined growth of about 20mm on one adrenal can

be proved to have PA due to that growth then it makes both economic and medical

sense to go straight to adrenalectomy. That was the logic of my doctor - that

the statistics were extremely strongly in favour of the growth being the cause

so I could save myself an intervention but the decision was ultimately mine -

and economic factors did not play a part in my decision,

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]

H, The Greek comment is because I just returned from 2 weeks at NIH and the

protocol I am in is led by a team of Greek doctors. (To get an idea of who they

are google their leader, Constantine Stratakis.) I felt it important to point

out it wasn't USA biased, novel idea huh!

Although money is often the goal, actuaries need to consider all aspects and

risks (at least in the Life Insurance industry.) If you needlessly kill people

prematurely it impacts the bottom line!

It should be governed by " risk/benefit " since you need to weigh the risks of two

procedures vs the benefit, especially if an ADx is extremely likely. There are

also psych issues to consider and QOL issues and the list goes on!

And there is no totally safe answer! Take my case for example. I took the

consertative route and used Spiro. I now have the same issue and have added

gynecomastia to the mix. You roll the dice, you pay the price! If you spend

all your time looking backwards you will have a hard time getting anywhere,

Coulda, Woulda, Shoulda doesn't live at my house!

I think we are in agreement!

> > > > >

> > > > > 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]

Question is what changes after age 40. Where is the data that says if you are

under 40 and have that well defined growth of about 20mm on one adrenal it can

be proved to be PA due to that growth. What changes if you are over 40 that you

need AVS to make sure that well defined growth of about 20mm on one adrenal is

PA.

With out this information how can you decide risk of surgery is worth it.

> > > > >

> > > > > 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]

Is this a trick question? It's the number of candles on the cake ofcourse! If

you want to have the best odds of not removing a " good " adrenal, an AVS is

probably your best bet no matter what age. Is it the safest? Maybe not when

you weigh in the risk associated with AVS. (Remember to include not only the

actual procedure risks but also in hospital exposure risk and even the risk you

take to even get there!) If cost is an issue and you happen to be in a country

where " Big Brother " protects you you are on your own! Get your checkbook out or

fight the system!

I can't think of any other way to explain it but will let you know if Dr.

Moraitis has any other ideas when I prepublish review his article.

> > > > > >

> > > > > > 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]

The assumption that the doctor in America will do no harm is a basic tenet of medicine, but as we have sadly learned about the American medical system is that altruistic endeavours can always be overriden by 1. the chance to make alot of money 2. And the avoidance of losing alot of money in a lawsuit.

The US system is set up to reward doctors (and include PA's and NP's) for unneccessary procedures and tests and while the public maintains, or carries the perception that insurance companies do not pay for most things, and this is very untrue. SOME things aren't paid for as a generality, like sleep studies, experimental medicines, many alternative treatments (ironically they will almost always pay for acupuncture but never massage therapy which I personally feel is one the most underutilized aspect of medicine and would cut in half pain pill use), and the things like transplants being refused or delayed tend to make the news (I believe in the thought that the patient will die in the meantime, saving the company money), most docs or their staff know how to get something approved and paid for.

But because of how medicare set up, and medicaid and other insurance companies followed suit, a doc for example, will get reimbursed $35 for an office visit to refill your blood pressure medicine, but if he or she puts a needle on you or in you, they now get $135 (it can be that dramatic a change in reimbursement). Under the estimated value units system (EVU's) that medicare came up with to "reward" doctors there exists this quarterly system for bonuses that pays extra or you gain "points" that translate to money later, if you order a chest xray, if you do a lab test, if you biopsy a mole, and anything "extra" you earn EVU's and this is calculated into a bonus.

One system I worked with in Az we saw everyone's bonuses posted quarterly. Mine stunk, because I refused to order unneccessary tests or do procedures they didn't need, like chest xrays because of the cancer risk. I could justify it, and get it paid for, by calling it "screening", but I couldn't do it. I took a lower salary because they sold me on this bonus system (I got a good salary and benefits back in Texas and we put the bonuses into the clinic - not to me). But each quarter, and I only worked there for 3, the OB/GYNs would get between $20,000 to $40,000 a quarter (now they DO have $100,000 malpractice payments too), because surgical procedures, and paps, and U/S etc earned them HUGE points. One other PA-C a lady who had some very serious issues as far as care and rapport with patients went, would make $10,000 because everyone who saw her got something. She figured out the system. A rheumatologist called me once complaining about her

ordering some bizzare tests on their patient when she filled in for me once

I am not some saint, but I just couldn't do it, so I quit. I was also VERY sick with undiagnosed PA and hyperthyroidism at the time and couldn't fight with them over it, but I went to a straight hourly job in urgent care until I could no longer work because of the mystery illnesses at the time....another sad story I've told.......but the system in the US is set up for fraud and test ordering and procedure doing. I bet an AVS is worth ALOT of EVU's and so the incentive to do one is there. It is for any surgical procedure.

Now I have said this before, that if we have determined that a pen with a medications name on it, or a spaghetti dinner can influence a doctors prescribing habits, how much more would the chance of a big bonus - aka more freakin money in one's pocket - influence a doctors tendency to lean toward a certain procedure or a test.

Now the pain management docs (most who are just surgeons or family practice docs since pain management is not a speciality) have this down to a "T" as they have learned that instead of writing a script for methadone - which they often do anyway - that if they take 5 minutes and stick a needle with some cortisone in your back, they have just went from $50 to $300 in 5 minutes.

Think about that next time your doc, like my GI guy recently, who steered and steered and steered the conversation away from any complaint(s) we needed to discuss(and he did it in record time too less than 5 minutes) to keep saying "we need to get a colonoscopy, lets get a colonoscopy, let's get the colonoscopy scheduled, blah blah...." and who owned his own machine in his suite. He needed to get me to the big ticket item, not discuss my anemia or lumps in my stomach (which he never felt), to pay for his machine and his paycheck. Some aren't as obvious as he was, but some are.

Last thought.....try to google the bonus system, or the EVU system, and see what one can find on how it works. Good luck...talk about conspiracy theories and hidden things, it's well hidden.

When money is involved it's amazing how we can "see" a need to do something. We can always justify it.

From: <jclark24p@...>Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?hyperaldosteronism Date: Wednesday, April 18, 2012, 11:40 AM

Is this a trick question? It's the number of candles on the cake ofcourse! If you want to have the best odds of not removing a "good" adrenal, an AVS is probably your best bet no matter what age. Is it the safest? Maybe not when you weigh in the risk associated with AVS. (Remember to include not only the actual procedure risks but also in hospital exposure risk and even the risk you take to even get there!) If cost is an issue and you happen to be in a country where "Big Brother" protects you you are on your own! Get your checkbook out or fight the system! I can't think of any other way to explain it but will let you know if Dr. Moraitis has any other ideas when I prepublish review his article.> > > > > >> > > > > > 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]

There's clearly nothing magical about 40 - no sudden step change. But there will

be progression over time that indicates the older you are, the higher the

probability of having random, non-hormone producing bumps. Conversely the

younger you are, the more likely it is that the 20mm lump is the one causing PA.

So the question of AVS or not becomes more pertinent the older you get. The

medical research must indicate that before the age of 40, the probability of the

lump being the problem is extremely high so if you're a gambling man (or woman),

it's a risk worth taking. But you could be one of the small percentage for whom

the lump is not the problem, even under forty. And over forty there must still

be a significant majority with an active hormone producing tumour which

hopefully AVS would prove.

As says, AVS is always going to be the sensible way to go if you want to be

100% sure that an adrenalectomy will be the answer. I took a gamble, I

understood the risks and it paid off,

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]

Great summary, H. The only thing I will add as these new bumps start to form

they start small and may not be seen. That's why NIH takes the time to wean

people with DM off Metformin so they can use contrast. It was interesting but I

told Dr. Moraitis to move on since I wouldn't be reading any more, he's pretty

good at it anyway IMHO! (Mine was bigger according to him.)

> > > > > > > >

> > > > > > > > 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]

Thank you everyone, for the feedback. I greatly appreciate hearing your experiences and advice. I am still waiting for the results of my saline infusion test...it's been just over a week. I hate waiting...but it sounds like that is going to be the new normal...wait, wait, wait. I need to learn to relax, relax, relax...kind of hard to do when you are full of excess hormones. Thanks again everyone! I am sure I will have more questions as my journey continues... From: <jclark24p@...> hyperaldosteronism Sent: Wednesday, April 18, 2012 2:48 PM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

Great summary, H. The only thing I will add as these new bumps start to form they start small and may not be seen. That's why NIH takes the time to wean people with DM off Metformin so they can use contrast. It was interesting but I told Dr. Moraitis to move on since I wouldn't be reading any more, he's pretty good at it anyway IMHO! (Mine was bigger according to him.)

> > > > > > > >

> > > > > > > > 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]

Dr. Grim, I wanted to let you know why I won't be able to have NIH include you

with my complete report. They limit me to naming two doctors for this. Dr.

Webster, my PCP and referring physician naturally gets the first. I will be

discussing who gets the second with her and the Quality Manager at the VA. (I'm

thinking I'm going to need a good Endocronologist and hope they can direct me to

one.)

I have complete confidence in Drs. Moriatis' and Stratakis' ability to interpret

results and make recommendtions. (And I have " walk in, no appt. needed "

priveledge anytime if I feel they are screwing up or I need attention!

> > > > > >

> > > > > > 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 am curious when you say there in no insurance in Switz but insurance pays everything. What do you do about those that do not buy the private insurance?CE Grim MDOn Apr 18, 2012, at 2:05 AM, hesterfenwick wrote: I'm sorry, I don't follow your Greek doctor example. I'm used to two different systems and by the sound of it both are very different to the US. The long discussions about politics and funding on this board leave me cold because they bear no relevance to 'my world'. Here in Switzerland the system is 100% private - no health insurance, no visa, no living in the country. There may be influence at higher levels over the medical community but from all my experience at individual patient level, the doctor will choose the best treatment for the patient irrelevant of cost. Because the patient has insurance and they claim it back from the health insurance company (who ae all well funded too), there is an element of 'cost is irrelevant' which was new to me. A lot of people get rich under the system, but most of Switzerland is rich by international standards. So there will have been absolutely no pressure from my health insurance company onto my endocrinologist to not get an AVS carried out because there was no interaction between the two - my doctor didn't even know which company insures me. In the Uk and Sweden where I have lived before, there is a public health system and costs are more tightly controlled. I know there are some drugs that may be released in some areas but not others because the funding varies. However, the national bodies that represent doctors are also powerful and are fierce advocates of patient rights. They're still not at the stage of politicians deciding on medical priorities. The purely economic argument also falls flat because AVS is a cheaper procedure than adrenalectomy so if the outcome of AVS is that adrenalectomy would not be successful, the health insurance companies or government would save some money. The only reason the logic holds is if 99% (or whatever high percentage) of patients under 40, with a well defined growth of about 20mm on one adrenal can be proved to have PA due to that growth then it makes both economic and medical sense to go straight to adrenalectomy. That was the logic of my doctor - that the statistics were extremely strongly in favour of the growth being the cause so I could save myself an intervention but the decision was ultimately mine - and economic factors did not play a part in my decision, 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]

And an individual risk/benefit analysis is not a 100% certain bet that the outcome will be as predicted.So that is the reason the individual must input the numbers for the final analysis of what x and y means to them.CE Grim MDOn Apr 18, 2012, at 3:09 AM, wrote: H, The Greek comment is because I just returned from 2 weeks at NIH and the protocol I am in is led by a team of Greek doctors. (To get an idea of who they are google their leader, Constantine Stratakis.) I felt it important to point out it wasn't USA biased, novel idea huh! Although money is often the goal, actuaries need to consider all aspects and risks (at least in the Life Insurance industry.) If you needlessly kill people prematurely it impacts the bottom line! It should be governed by "risk/benefit" since you need to weigh the risks of two procedures vs the benefit, especially if an ADx is extremely likely. There are also psych issues to consider and QOL issues and the list goes on! And there is no totally safe answer! Take my case for example. I took the consertative route and used Spiro. I now have the same issue and have added gynecomastia to the mix. You roll the dice, you pay the price! If you spend all your time looking backwards you will have a hard time getting anywhere, Coulda, Woulda, Shoulda doesn't live at my house! I think we are in agreement! > > > > > > > > > > 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]

understand. They should send you a copy I would hope.CE Grim MDOn Apr 21, 2012, at 10:22 AM, wrote: Dr. Grim, I wanted to let you know why I won't be able to have NIH include you with my complete report. They limit me to naming two doctors for this. Dr. Webster, my PCP and referring physician naturally gets the first. I will be discussing who gets the second with her and the Quality Manager at the VA. (I'm thinking I'm going to need a good Endocronologist and hope they can direct me to one.) I have complete confidence in Drs. Moriatis' and Stratakis' ability to interpret results and make recommendtions. (And I have "walk in, no appt. needed" priveledge anytime if I feel they are screwing up or I need attention! > > > > > > > > > > > > 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]

Gruetzi!

My whole family has insurance in Switzerland. Rather expensive though, my Mom's

insurance for just her costs her more per month than my entire family here.

> > > > > >

> > > > > > 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 and Dr. Moriatis will review with me.

> > > > > > > >

> > > > > > > > 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 and Dr. Moriatis will review with me.

> > > > > > > >

> > > > > > > > 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]

Excellent!CE Grim MDOn Apr 21, 2012, at 5:15 PM, wrote: Yes and Dr. Moriatis will review with me. > > > > > > > > > > > > > > > > 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]

Excellent!CE Grim MDOn Apr 21, 2012, at 5:15 PM, wrote: Yes and Dr. Moriatis will review with me. > > > > > > > > > > > > > > > > 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]

My Endo called me today to let me know that my saline suppression test was inconclusive. She did some research and realized that the Atenolol and Amlodipine that I am on, may have skewed the results. So, now she is taking me off of those 2 drugs and putting me on Verapamil 120 mg for 2 weeks, and then they will re-do the Saline suppression. She also made the comment that I should EAT PLENTY OF SALT!! ????? Shouldn't I be off of all drugs for several weeks before the saline test? I have also gained about 15 lbs in the past 3 months. This is very unusual since I am on weight watchers and very closely monitor my calories (points). Wisconsin, USA39 yrs old (turning 40 in a

few months)K - currently 3.8 (but was 2.8 - 3.2)BP - has been 120s/80s with Atenolol and AmlodipineTaking 5 packets 20 meqs daily2.5 tumor on left adrenal glandARR 200 From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Monday, April 16, 2012 11:19 PM Subject: Re: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

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 gave up on Weight Watchers, I gained 10 lbs eating 1400-1600

calories a day. I am now on Paleo diet which I eat about 2200

calories a day and I am losing again.

Dr Grim says I was drinking heavy water

;-)

Phyllis

On 4/24/2012 9:14 PM, Jess Dellemann wrote:

My Endo called me today to let me know that my

saline suppression test was inconclusive. She did

some research and realized that the Atenolol and

Amlodipine that I am on, may have skewed the results.

So, now she is taking me off of those 2 drugs and

putting me on Verapamil 120 mg for 2 weeks, and then

they will re-do the Saline suppression. She also made

the comment that I should EAT PLENTY OF SALT!! ?????

Shouldn't I be off of all drugs for several weeks

before the saline test? I have also gained about 15

lbs in the past 3 months. This is very unusual since

I am on weight watchers and very closely monitor my

calories (points).

Wisconsin, USA

39 yrs old (turning 40 in a few months)

K - currently 3.8 (but was 2.8 - 3.2)

BP - has been 120s/80s with Atenolol and

Amlodipine

Taking 5 packets 20 meqs daily

2.5 tumor on left adrenal gland

ARR 200

From:

Clarence Grim <lowerbp2@...>

To:

hyperaldosteronism

Cc:

Clarence Grim <lowerbp2@...>

Sent:

Monday, April 16, 2012 11:19 PM

Subject:

Re: Re: Does anyone have

experience, opinions or advice on Adrenal Vein

Sampling?

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 MD

On 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]

NIH! Forget her. NIH does it all for you, you don't have to do all the

research and figure it all out. They do. Follow the yellow brick road ('s

links to NIH all over this site).

>

> 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.

>