Re: adrenal vein testing

[Guest guest]

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

[Guest guest]

You have two issues going on so I will seperate them. What would I do? I might

very well proceed without an AVS and in fact almost did about a year ago! NOW,

WITH THAT SAID I WOULD NOT RECOMMEND ANYONE ELSE DO THAT IF THEY ARE OVER 39

YEARS OLD! In fact, I usually don't make recommendations. I try to limit my

points to what the professionals have recommended and published after studies!

I have other issues going on that lead me to that conclusion but I think it

better not to discuss them because I don't want to bias anyone else! I make my

decisions and seldom look backwards, that is not where the future is!

> > > >>

> > > >> > Question regarding avs testing. I had an adenoma on my left gland

removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP

remains on the high side, around 160/105. I never was offered AVS test. Having

severe bouts with anxiety, irritability, like PMS times 10, most of the time!

My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone

over production? I have endo appt. March 1st. I've requested aldo renin tests

again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took

myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > > >> > Thanks guys

> > > >> >

> > > >>

> > > >

> > > >

> > >

> >

>

[Guest guest]

You have two issues going on so I will seperate them. What would I do? I might

very well proceed without an AVS and in fact almost did about a year ago! NOW,

WITH THAT SAID I WOULD NOT RECOMMEND ANYONE ELSE DO THAT IF THEY ARE OVER 39

YEARS OLD! In fact, I usually don't make recommendations. I try to limit my

points to what the professionals have recommended and published after studies!

I have other issues going on that lead me to that conclusion but I think it

better not to discuss them because I don't want to bias anyone else! I make my

decisions and seldom look backwards, that is not where the future is!

> > > >>

> > > >> > Question regarding avs testing. I had an adenoma on my left gland

removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP

remains on the high side, around 160/105. I never was offered AVS test. Having

severe bouts with anxiety, irritability, like PMS times 10, most of the time!

My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone

over production? I have endo appt. March 1st. I've requested aldo renin tests

again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took

myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > > >> > Thanks guys

> > > >> >

> > > >>

> > > >

> > > >

> > >

> >

>

[Guest guest]

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

[Guest guest]

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

[Guest guest]

Ms. Abdallah,Attached, please, find some results of my AVS and the conclusion of my nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim told me practically the same thing about 6 -8 months ago. So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral according to the results of AVS. Even my right side produces slightly more hormones. And it's a common case according to Dr. Grim.>So what if it does turn out to be bilateral..then what?I only can give you my advices, what would I do in this case. It's up to you to decide. 1. I would IMMEDIATELY go to low Na/high K

diet.2. I would ask to prescribe me Inspra or spiro.3. I would go on private consultation with Dr. Grim. I will not overestimate anything saying that he saved my life.4. I would do all tests that Dr. Grim and your team recommend to do to figure out what happened.5. I would prepare to tomorrow's appointment very well. I would be especially interested to get all prove that the doctor has, that it's not bilateral. 6. After all of that it's a long road to regulate your diet and your dosage/medications. It's not that simple at all. Just remember, we are still lucky, that by a medication and diet we can control this disease.Good luck with tomorrow. Natalia Kamneva 67

Russian F with 3 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Kalthoum Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 3:45 PM Subject: Re: Re: adrenal vein testing

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

1 of 1 File(s)

AVS and Dr. Levinson conclusion.pdf

[Guest guest]

On to the other half of your discussion. A nice and friendly doctor only gets a

temporary pass that I might not abuse them! Confidence on the otherhand will

gain respect because it usually takes knowledge and experience to breed

confidence.

I feel the doctor followed SOP in determining that surgery was appropriate

bypassing AVS (assuming the PTN is < 40). Now I do feel she missed the boat by

not offering the alterntive of meds and I certainly feel they didn't follow

standard of care after surgery! If you feel strongly that everyone should have

an AVS you might want to get your input into the ObamaCare package, I'm sure

they won't be looking to add that expense!

In your case an AVS would definately be in order. Your advance age ;>) in

itself calls for one! Also the size of your adenoma is only 2/3 of the size

that calls for an immediate removal (3cm is the cutoff and yours is only 2cm as

I recall.) The doctor(s) that were recommending immediate removal were wrong,

IMHO! Now I hope they have established a followup plan to make sure the tumor

is stable and not growing. I also hope you are feeling as well as I did before

I had to get off Spiro. Now I am trying to learn how to do a breast self-exam

and trying to figure out " my cycle " so I'll know when to do it! Also, nobody

can tell me if my " boobs " are 65 years old or just the two years I've had them

so I don't know what my mammogram schedule should be! ;>()

> > > >>

> > > >> > Question regarding avs testing. I had an adenoma on my left gland

removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP

remains on the high side, around 160/105. I never was offered AVS test. Having

severe bouts with anxiety, irritability, like PMS times 10, most of the time!

My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone

over production? I have endo appt. March 1st. I've requested aldo renin tests

again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took

myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > > >> > Thanks guys

> > > >> >

> > > >>

> > > >

> > > >

> > >

> >

>

[Guest guest]

Dianne,Thank you for the advice, and well wishes.The reason I'm co concerned about having bilateral PA,, On Mar 5, 2012, at 5:31 PM, Dianne strong <dianstrong@...> wrote:

Katt,I agree with Natalia's advice completely. I have bi-lateral adenomas and with Dr. Grim's advice now adhere to a Dash diet and feel better than I have in over 25 years. You can live a good life with PA, but it may take a while for your body to adjust to its new reality of a lower BP, and also take a while just to completely accept just what low sodium really means in terms of your diet. Reading labels will become your new hobby. Almost all preprepared foods, even bread, contain huge amounts of sodium. Fresh foods are in and everything else is out.The things I've had to give up are a small price to pay for not suffering the way I was before, and wondering when a big stroke would come along due to a BP that was reaching 224/120 despite being on 4 medications to control it. This morning my BP was 133/76, and that's

pretty standard for me now.Don't dispare if you end up having bi-lateral adenomas and can't have surgery to correct PA. The Dash diet is a big adjustment, but it becomes part of your life. Now when I look at a piece of pizza, or a hot dog that everyone else is having I just think back to the bad-old-days and am so, so happy that I have a way of not having to live that way anymore. It makes the choice easy-peasy.And I wish you Good Luck tomorrow as well.DianneF-69, bi-lateral adenomas, CKD due to CT scan contrast dye, 75mg spiro, 37.5 mg Atenolol,

Dashing.

br>

..0

br>

Ms. Abdallah,Attached, please, find some results of my AVS and the conclusion of my nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim told me practically the same thing about 6 -8 months ago. So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral according to the results of AVS. Even my right side produces slightly more hormones. And it's a common case according to Dr. Grim.>So what if it does turn out to be bilateral..then what?I only can give you my advices, what would I do in this case. It's up to you to decide. 1. I would IMMEDIATELY go to low Na/high K

diet.2. I would ask to prescribe me Inspra or spiro.3. I would go on private consultation with Dr. Grim. I will not overestimate anything saying that he saved my life.4. I would do all tests that Dr. Grim and your team recommend to do to figure out what happened.5. I would prepare to tomorrow's appointment very well. I would be especially interested to get all prove that the doctor has, that it's not bilateral. 6. After all of that it's a long road to regulate your diet and your dosage/medications. It's not that simple at all. Just remember, we are still lucky, that by a medication and diet we can control this disease.Good luck with tomorrow. Natalia Kamneva 67

Russian F with 3 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Kalthoum Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 3:45 PM Subject: Re: Re: adrenal vein testing

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

=

[Guest guest]

As I was saying my concern is that I already had an adrenalectomy. Just never had AVS.On Mar 5, 2012, at 7:18 PM, Katt Abdallah <kattabdallah77@...> wrote:

Dianne,Thank you for the advice, and well wishes.The reason I'm co concerned about having bilateral PA,, On Mar 5, 2012, at 5:31 PM, Dianne strong <dianstrong@...> wrote:

Katt,I agree with Natalia's advice completely. I have bi-lateral adenomas and with Dr. Grim's advice now adhere to a Dash diet and feel better than I have in over 25 years. You can live a good life with PA, but it may take a while for your body to adjust to its new reality of a lower BP, and also take a while just to completely accept just what low sodium really means in terms of your diet. Reading labels will become your new hobby. Almost all preprepared foods, even bread, contain huge amounts of sodium. Fresh foods are in and everything else is out.The things I've had to give up are a small price to pay for not suffering the way I was before, and wondering when a big stroke would come along due to a BP that was reaching 224/120 despite being on 4 medications to control it. This morning my BP was 133/76, and that's

pretty standard for me now.Don't dispare if you end up having bi-lateral adenomas and can't have surgery to correct PA. The Dash diet is a big adjustment, but it becomes part of your life. Now when I look at a piece of pizza, or a hot dog that everyone else is having I just think back to the bad-old-days and am so, so happy that I have a way of not having to live that way anymore. It makes the choice easy-peasy.And I wish you Good Luck tomorrow as well.DianneF-69, bi-lateral adenomas, CKD due to CT scan contrast dye, 75mg spiro, 37.5 mg Atenolol,

Dashing.

br>

..0

br>

Ms. Abdallah,Attached, please, find some results of my AVS and the conclusion of my nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim told me practically the same thing about 6 -8 months ago. So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral according to the results of AVS. Even my right side produces slightly more hormones. And it's a common case according to Dr. Grim.>So what if it does turn out to be bilateral..then what?I only can give you my advices, what would I do in this case. It's up to you to decide. 1. I would IMMEDIATELY go to low Na/high K

diet.2. I would ask to prescribe me Inspra or spiro.3. I would go on private consultation with Dr. Grim. I will not overestimate anything saying that he saved my life.4. I would do all tests that Dr. Grim and your team recommend to do to figure out what happened.5. I would prepare to tomorrow's appointment very well. I would be especially interested to get all prove that the doctor has, that it's not bilateral. 6. After all of that it's a long road to regulate your diet and your dosage/medications. It's not that simple at all. Just remember, we are still lucky, that by a medication and diet we can control this disease.Good luck with tomorrow. Natalia Kamneva 67

Russian F with 3 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Kalthoum Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 3:45 PM Subject: Re: Re: adrenal vein testing

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

=

=

[Guest guest]

You will need to DASH TO THE MAX and add MCBS IF THAT does not get u to goal. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 5, 2012, at 15:45, Kalthoum Abdallah <kattabdallah77@...> wrote:

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> That is a lot of HCTZ. Give us your complete story and we can help better and faster. If K still normal on that much HCTZ THEN they must have gotten the big source. In the best of hand long term cure-off all Bp meds and K normal is ~ 40%. But time will tell. Till BP IS NORMAL I would DASH now.

> > >>

> > >>

> > >>

> > >> May your pressure be low!

> > >>

> > >> CE Grim MS, MD

> > >> Specializing in Difficult

> > >> Hypertension

> > >>

> > >> On Fe

[Guest guest]

Okay, don't remove the second one :-) Natalia Kamneva 67 Russian F with 2 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Katt Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism >

Sent: Monday, March 5, 2012 10:30 PM Subject: Re: Re: adrenal vein testing

As I was saying my concern is that I already had an adrenalectomy. Just never had AVS.On Mar 5, 2012, at 7:18 PM, Katt Abdallah <kattabdallah77@...> wrote:

Dianne,Thank you for the advice, and well wishes.The reason I'm co concerned about having bilateral PA,, On Mar 5, 2012, at 5:31 PM, Dianne strong <dianstrong@...> wrote:

Katt,I agree with Natalia's advice completely. I have bi-lateral adenomas and with Dr. Grim's advice now adhere to a Dash diet and feel better than I have in over 25 years. You can live a good life with PA, but it may take a while for your body to adjust to its new reality of a lower BP, and also take a while just to completely accept just what low sodium really means in terms of your diet. Reading labels will become your new hobby. Almost all preprepared foods, even bread, contain huge amounts of sodium. Fresh foods are in and everything else is out.The things I've had to give up are a small price to pay for not suffering the way I was before, and wondering when a big stroke would come along due to a BP that was reaching 224/120 despite being on 4 medications to control it. This morning my BP was 133/76,

and that's

pretty standard for me now.Don't dispare if you end up having bi-lateral adenomas and can't have surgery to correct PA. The Dash diet is a big adjustment, but it becomes part of your life. Now when I look at a piece of pizza, or a hot dog that everyone else is having I just think back to the bad-old-days and am so, so happy that I have a way of not having to live that way anymore. It makes the choice easy-peasy.And I wish you Good Luck tomorrow as well.DianneF-69, bi-lateral adenomas, CKD due to CT scan contrast dye, 75mg spiro, 37.5 mg Atenolol,

Dashing.

br>

br>

/div>

..0

br>

Ms. Abdallah,Attached, please, find some results of my AVS and the conclusion of my nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim told me practically the same thing about 6 -8 months ago. So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral according to the results of AVS. Even my right side produces slightly more hormones. And it's a common case according to Dr. Grim.>So what if it does turn out to be bilateral..then what?I only can give you my advices, what would I do in this case. It's up to you to decide. 1. I would IMMEDIATELY go to low Na/high K

diet.2. I would ask to prescribe me Inspra or spiro.3. I would go on private consultation with Dr. Grim. I will not overestimate anything saying that he saved my life.4. I would do all tests that Dr. Grim and your team recommend to do to figure out what happened.5. I would prepare to tomorrow's appointment very well. I would be especially interested to get all prove that the doctor has, that it's not bilateral. 6. After all of that it's a long road to regulate your diet and your dosage/medications. It's not that simple at all. Just remember, we are still lucky, that by a medication and diet we can control this disease.Good luck with tomorrow. Natalia Kamneva 67

Russian F with 3 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Kalthoum Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 3:45 PM Subject: Re: Re: adrenal vein testing

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

> > >>

> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

> > >> >

> > >>

> > >

> > >

> >

>

=

=

[Guest guest]

Man alive! I really don't like age standards when it comes to stuff like this.

I look back on my health history and have the distinct feeling that I've been

dealing with this low k for a while now. If my BP was high, and my k was low

and my aldo renin ratio was indictating PA, my cat scan showed something, then I

would hope that if I was 30, 40, or 50, the next step would be AVS, since that

IS the next step unless this Pet Scan can do it. This is a slippery slope,

isn't it? How about good medicine? Good individual medicine! Let's get out

and vote today people!

> > > > >>

> > > > >> > Question regarding avs testing. I had an adenoma on my left gland

removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP

remains on the high side, around 160/105. I never was offered AVS test. Having

severe bouts with anxiety, irritability, like PMS times 10, most of the time!

My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone

over production? I have endo appt. March 1st. I've requested aldo renin tests

again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took

myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > > > >> > Thanks guys

> > > > >> >

> > > > >>

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Cost of AVS should not be part of this equation at this point in time. Why?

Because there are free clinical trials that will do AVS and treatment that are

open and taking patients to evaluate. So, at this time, AVS cost is whatever

your round trip flight to Baltimore or Dulles plus the time off work for a week.

> > > > >>

> > > > >> > Question regarding avs testing. I had an adenoma on my left gland

removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP

remains on the high side, around 160/105. I never was offered AVS test. Having

severe bouts with anxiety, irritability, like PMS times 10, most of the time!

My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone

over production? I have endo appt. March 1st. I've requested aldo renin tests

again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took

myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > > > >> > Thanks guys

> > > > >> >

> > > > >>

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

They also do NP-59 scans. This scan has been arould a while. Don't know why it

isn't done more. Believe Study Circle had this done.

> > > > > >>

> > > > > >> > Question regarding avs testing. I had an adenoma on my left

gland removed Feb 2nd. Potassium has since returned to normal range 5.0

actually. BP remains on the high side, around 160/105. I never was offered AVS

test. Having severe bouts with anxiety, irritability, like PMS times 10, most

of the time! My family is fed up, I'm frustrated! Is it posible I had

bilateral aldosterone over production? I have endo appt. March 1st. I've

requested aldo renin tests again. Anything else I should ask the Endo? Still

taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

Atenolol 50 mg.

> > > > > >> > Thanks guys

> > > > > >> >

> > > > > >>

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Most have found it not reliable in early PA. AND isotope not available at all Hosp. Don't know why.May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 6, 2012, at 12:18, Francis Bill SUSPECTED PA <georgewbill@...> wrote:

They also do NP-59 scans. This scan has been arould a while. Don't know why it isn't done more. Believe Study Circle had this done.

> > > > >

> > > > > ÂÂÂ

> > > > > >Ok this is a response from my Endo, when I emailed her regarding my BP and concerns that it remains high almost one month post op. I had asked about AVS and why I was not tested. I have my appointment tomorrow and looking for feedback and wondering how accurate her response is. I'm dealing with Kaiser here, and my experiences with them thus far have been negative to say the least.

> > > > > >This was her response below. Any feedback would be much appreciated.

> > > > > >Thanks!

> > > > > >

> > > > > >Ms. Abdallah,

> > > > > >The main purpose of your appointment with me later this week is, in fact, to go over several of the issues/questions you raised in your email. We always repeat the aldosterone and renin levels after surgery to assess for surgical cure. As you've read, hypertension is improved after surgery for all patients with unilateral disease and is cured (meaning blood pressure medications are no longer required) in about 30-60% of patients. So, very often we are able to reduce the medications but not stop them all together. I think the significant improvement in your potassium levels is telling in and of itself that you've benefited from the surgery.

> > > > > >The adrenal vein sampling tends to be used more in academic and tertiary care level medical centers. Even in these settings, the general guidelines developed by the experts in the field (a consensus report with guidelines was published just a few years ago) indicates that for a patient under the age of 40 with a well defined unilateral adrenal mass the vein sampling could be deferred. If the CT was unclear( meaning the adrenal glan

[Guest guest]

Let me play the devils advocate for a minute. (These numbers are ALL

fictitious.)

Assume after ~20 years of records the chance of removing the wrong adrenal based

on only a ct-scan if the PTN was <40 is .5%. If the PTN is >39 the risk is

25.5%. The risk of ruining the good adrenal or other complications with AVS is

1.5%. Treating w/MCBs & DASH is not an option. Now what is your choice?

Life is a gamble, the best we can do is play the odds!

> > > > > >>

> > > > > >> > Question regarding avs testing. I had an adenoma on my left

gland removed Feb 2nd. Potassium has since returned to normal range 5.0

actually. BP remains on the high side, around 160/105. I never was offered AVS

test. Having severe bouts with anxiety, irritability, like PMS times 10, most

of the time! My family is fed up, I'm frustrated! Is it posible I had

bilateral aldosterone over production? I have endo appt. March 1st. I've

requested aldo renin tests again. Anything else I should ask the Endo? Still

taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

Atenolol 50 mg.

> > > > > >> > Thanks guys

> > > > > >> >

> > > > > >>

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

No reason to do AVS now if controlled in DASH AND MCBs. Very rarely a Conn's can be outside the adrenal. Ovary and brain are two that I recall now. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 5, 2012, at 23:46, Natalia Kamneva <natalia_kamneva@...> wrote:

Okay, don't remove the second one :-) Natalia Kamneva 67 Russian F with 2 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Katt Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism >

Sent: Monday, March 5, 2012 10:30 PM Subject: Re: Re: adrenal vein testing

As I was saying my concern is that I already had an adrenalectomy. Just never had AVS.On Mar 5, 2012, at 7:18 PM, Katt Abdallah <kattabdallah77@...> wrote:

Dianne,Thank you for the advice, and well wishes.The reason I'm co concerned about having bilateral PA,, On Mar 5, 2012, at 5:31 PM, Dianne strong <dianstrong@...> wrote:

Katt,I agree with Natalia's advice completely. I have bi-lateral adenomas and with Dr. Grim's advice now adhere to a Dash diet and feel better than I have in over 25 years. You can live a good life with PA, but it may take a while for your body to adjust to its new reality of a lower BP, and also take a while just to completely accept just what low sodium really means in terms of your diet. Reading labels will become your new hobby. Almost all preprepared foods, even bread, contain huge amounts of sodium. Fresh foods are in and everything else is out.The things I've had to give up are a small price to pay for not suffering the way I was before, and wondering when a big stroke would come along due to a BP that was reaching 224/120 despite being on 4 medications to control it. This morning my BP was 133/76,

and that's

pretty standard for me now.Don't dispare if you end up having bi-lateral adenomas and can't have surgery to correct PA. The Dash diet is a big adjustment, but it becomes part of your life. Now when I look at a piece of pizza, or a hot dog that everyone else is having I just think back to the bad-old-days and am so, so happy that I have a way of not having to live that way anymore. It makes the choice easy-peasy.And I wish you Good Luck tomorrow as well.DianneF-69, bi-lateral adenomas, CKD due to CT scan contrast dye, 75mg spiro, 37.5 mg Atenolol,

Dashing.

br>

br>

/div>

..0

br>

Ms. Abdallah,Attached, please, find some results of my AVS and the conclusion of my nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim told me practically the same thing about 6 -8 months ago. So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral according to the results of AVS. Even my right side produces slightly more hormones. And it's a common case according to Dr. Grim.>So what if it does turn out to be bilateral..then what?I only can give you my advices, what would I do in this case. It's up to you to decide. 1. I would IMMEDIATELY go to low Na/high K

diet.2. I would ask to prescribe me Inspra or spiro.3. I would go on private consultation with Dr. Grim. I will not overestimate anything saying that he saved my life.4. I would do all tests that Dr. Grim and your team recommend to do to figure out what happened.5. I would prepare to tomorrow's appointment very well. I would be especially interested to get all prove that the doctor has, that it's not bilateral. 6. After all of that it's a long road to regulate your diet and your dosage/medications. It's not that simple at all. Just remember, we are still lucky, that by a medication and diet we can control this disease.Good luck with tomorrow. Natalia Kamneva 67

Russian F with 3 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim.

[Guest guest]

Yes, I did NP59 and found left adenoma…and I was delighted to find it far more reliable accurate and painless relative to AVS that should be performed by a very experienced radiologist or else must be done twice or three times. AVS must be called an obsolete method and eliminated from PA dx L However, after reading couple of PA stories on laparoscopic adrenalectomy and nearly a week of pain after that I decided to stay with Spiro and other meds for now.If one has a dedicated person to look after him for a week or two after surgery then I suspect adrenalectomy is preferred…only if adenoma lateralization is >95% certain.NP59 documentation I hope still is found in Group’s Files folder.Max. They also do NP-59 scans. This scan has been arould a while. Don't know why it isn't done more. Believe Study Circle had this done.

[Guest guest]

If it is ovary or brain is there n underlying tumor? You mentioned ovary, is

testis an option?

> >>>

> >>>

> >>> Ms. Abdallah,

> >>>

> >>> Attached, please, find some results of my AVS and the conclusion of my

nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim

told me practically the same thing about 6 -8 months ago.

> >>>

> >>> So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral

according to the results of AVS. Even my right side produces slightly more

hormones. And it's a common case according to Dr. Grim.

> >>>

> >>> >So what if it does turn out to be bilateral..then what?

> >>>

> >>> I only can give you my advices, what would I do in this case. It's up to

you to decide.

> >>>

> >>> 1. I would IMMEDIATELY go to low Na/high K diet.

> >>> 2. I would ask to prescribe me Inspra or spiro.

> >>> 3. I would go on private consultation with Dr. Grim. I will not

overestimate anything saying that he saved my life.

> >>> 4. I would do all tests that Dr. Grim and your team recommend to do to

figure out what happened.

> >>> 5. I would prepare to tomorrow's appointment very well. I would be

especially interested to get all prove that the doctor has, that it's not

bilateral.

> >>> 6. After all of that it's a long road to regulate your diet and your

dosage/medications. It's not that simple at all.

> >>>

> >>> Just remember, we are still lucky, that by a medication and diet we can

control this disease.

> >>>

> >>> Good luck with tomorrow.

> >>>

> >>>

> >>> Natalia Kamneva 67 Russian F with 3 cm left adrenal adenoma, diabetic; on

100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg

Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on

private consultation with Dr Grim.

>

[Guest guest]

I think you have the <40 % of 0.5% as way too low. Unless you are talking about taking out the L when the AVS pointed to the R. Or taking out the one that is identified as the guilty one and not getting a cure because of bilateral disease. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 6, 2012, at 12:36, <jclark24p@...> wrote:

Let me play the devils advocate for a minute. (These numbers are ALL fictitious.)

Assume after ~20 years of records the chance of removing the wrong adrenal based on only a ct-scan if the PTN was <40 is .5%. If the PTN is >39 the risk is 25.5%. The risk of ruining the good adrenal or other complications with AVS is 1.5%. Treating w/MCBs & DASH is not an option. Now what is your choice?

Life is a gamble, the best we can do is play the odds!

> > > > >

> > > > > ÂÂÂ

> > > > > >Ok this is a response from my Endo, when I emailed her regarding my BP and concerns that it remains high almost one month post op. I had asked about AVS and why I was not tested. I have my appointment tomorrow and looking for feedback and wondering how accurate her response is. I'm dealing with Kaiser here, and my experiences with them thus far have been negative to say the least.

> > > > > >This was her response below. Any feedback would be much appreciated.

> > > > > >Thanks!

> > > > > >

> > > > > >Ms. Abdallah,

> > > > > >The main purpose of your appointment with me later this week is, in fact, to go over several of the issues/questions you raised in your email. We always repeat the aldosterone and renin levels after surgery to assess for surgical cure. As you've read, hypertension is improved after surgery for all patients with unilateral disease and is cured (meaning blood pressure medications are no longer required) in about 30-60% of patients. So, very often we are able to reduce the medications but not stop them all together. I think the significant improvement in your potassium levels is telling in and of itself that you've benefited from the surgery.

> > > > > >The adrenal vein sampling tends to be used more in academic and tertiary care level medical cente

[Guest guest]

what's an np59 scan?

>

> Yes, I did NP59 and found left adenoma…and I was delighted to find it far

more reliable accurate and painless relative to AVS that should be performed by

a very experienced radiologist or else must be done twice or three times. AVS

must be called an obsolete method and eliminated from PA dx L

>

> However, after reading couple of PA stories on laparoscopic adrenalectomy and

nearly a week of pain after that I decided to stay with Spiro and other meds for

now.

>

> If one has a dedicated person to look after him for a week or two after

surgery then I suspect adrenalectomy is preferred…only if adenoma

lateralization is >95% certain.

>

> NP59 documentation I hope still is found in Group’s Files folder.

>

> Max.

>

>

>

> They also do NP-59 scans. This scan has been arould a while. Don't know why it

isn't done more. Believe Study Circle had this done.

>

[Guest guest]

My point, , is not about my judgement about these odds, it's about the

desire that each patient be able to evaluate their situation and have all

choices available to them for further care. Then, they can figure out those

odds and pick the choice themselves.

For me, I am now concerned about something you just wrote...a 1.5% chance of

ruining an adrenal gland or other complications of AVS???? PLlllleeeeaaase tell

me more! OMG!!! I guess I'd better up my cyberchondriosis cause I've missed

all this! Scheduled for it next Friday...and I'm always in that percentage!

> > > > > > >

> > > > > > > ÃÆ'‚ÂÂ

> > > > > > > >Ok this is a response from my Endo, when I emailed her regarding

my BP and concerns that it remains high almost one month post op. I had asked

about AVS and why I was not tested. I have my appointment tomorrow and looking

for feedback and wondering how accurate her response is. I'm dealing with Kaiser

here, and my experiences with them thus far have been negative to say the least.

> > > > > > > >This was her response below. Any feedback would be much

appreciated.

> > > > > > > >Thanks!

> > > > > > > >

> > > > > > > >Ms. Abdallah,

> > > > > > > >The main purpose of your appointment with me later this week is,

in fact, to go over several of the issues/questions you raised in your email. We

always repeat the aldosterone and renin levels after surgery to assess for

surgical cure. As you've read, hypertension is improved after surgery for all

patients with unilateral disease and is cured (meaning blood pressure

medications are no longer required) in about 30-60% of patients. So, very often

we are able to reduce the medications but not stop them all together. I think

the significant improvement in your potassium levels is telling in and of itself

that you've benefited from the surgery.

> > > > > > > >The adrenal vein sampling tends to be used more in academic and

tertiary care level medical cente

>

[Guest guest]

Hi Maggiekat, I've been through 2 AVS procedures and I have to say this: the

stuff they legally have to tell you beforehand about the 1.5% chance of

rupturing an adrenal, not to mention the 1% chance of DEATH (yes, they really do

tell you this) is far more scary than the actual procedure, at least if you are

in good hands. Did I understand correctly that you are scheduled for one next

Friday? Please don't put too much effort into worrying - just be aware that

there are risks, and that you are willing to take those risks in order to get

better.

-msmith1928

Successful left laparoscopic adrenalectomy 10/13/11

> > > > > > > >

> > > > > > > > ÃÆ'‚ÂÂ

> > > > > > > > >Ok this is a response from my Endo, when I emailed her

regarding my BP and concerns that it remains high almost one month post op. I

had asked about AVS and why I was not tested. I have my appointment tomorrow and

looking for feedback and wondering how accurate her response is. I'm dealing

with Kaiser here, and my experiences with them thus far have been negative to

say the least.

> > > > > > > > >This was her response below. Any feedback would be much

appreciated.

> > > > > > > > >Thanks!

> > > > > > > > >

> > > > > > > > >Ms. Abdallah,

> > > > > > > > >The main purpose of your appointment with me later this week

is, in fact, to go over several of the issues/questions you raised in your

email. We always repeat the aldosterone and renin levels after surgery to assess

for surgical cure. As you've read, hypertension is improved after surgery for

all patients with unilateral disease and is cured (meaning blood pressure

medications are no longer required) in about 30-60% of patients. So, very often

we are able to reduce the medications but not stop them all together. I think

the significant improvement in your potassium levels is telling in and of itself

that you've benefited from the surgery.

> > > > > > > > >The adrenal vein sampling tends to be used more in academic and

tertiary care level medical cente

> >

>

[Guest guest]

The reason I started with the caveat regarding the numbers is because the

discussion of the actual numbers is not the point, I purposely biased them!

This has been studied by many professional and that is their conclusion. I'm

sure every study must survive the review of their peers. The concensus after

many years appears to be to skip AVS if under 40. If you disagree, your " beef "

is with them! It is highly unlikely that a birthday switches a switch so I hope

the actual age is closer to 45 and they have included a margin of error. Now

what is your experience? How many AVSs have proved the scan incorrect? Of

those, how many were < 40? Of the latter, how was the incorrect answer

confirmed? Of the ones that persued treatment with MCBs and Dash, either by

choice or DX, how many have experienced adverse side effects? Do adenomas

advance with time, either in size or production of excess aldosterone? How

often should you rescan if you keep the adenoma? If you add exposure to

radition, what is the risk and do you consider other things that add radiation?

(Both now and in the future!)

I probably have other questions but there are some of the " easy " ones!

.....

> > > > > > >

> > > > > > > ÃÆ'‚ÂÂ

> > > > > > > >Ok this is a response from my Endo, when I emailed her regarding

my BP and concerns that it remains high almost one month post op. I had asked

about AVS and why I was not tested. I have my appointment tomorrow and looking

for feedback and wondering how accurate her response is. I'm dealing with Kaiser

here, and my experiences with them thus far have been negative to say the least.

> > > > > > > >This was her response below. Any feedback would be much

appreciated.

> > > > > > > >Thanks!

> > > > > > > >

> > > > > > > >Ms. Abdallah,

> > > > > > > >The main purpose of your appointment with me later this week is,

in fact, to go over several of the issues/questions you raised in your email. We

always repeat the aldosterone and renin levels after surgery to assess for

surgical cure. As you've read, hypertension is improved after surgery for all

patients with unilateral disease and is cured (meaning blood pressure

medications are no longer required) in about 30-60% of patients. So, very often

we are able to reduce the medications but not stop them all together. I think

the significant improvement in your potassium levels is telling in and of itself

that you've benefited from the surgery.

> > > > > > > >The adrenal vein sampling tends to be used more in academic and

tertiary care level medical cente

>

[Guest guest]

yes, going to NIH this coming Saturday...scheduled for bloodwork, other labs,

kidney and coratid ultrasounds, cat scan, and avs, and maybe more. They will

send me home and then I go back if I opt to have further treatment with them

(like laparascopic adrenalectomy). I am scheduled to be there 8 days...and

believe it or not, I am looking forward to it.

> > > > > > > > >

> > > > > > > > > ÃÆ'‚ÂÂ

> > > > > > > > > >Ok this is a response from my Endo, when I emailed her

regarding my BP and concerns that it remains high almost one month post op. I

had asked about AVS and why I was not tested. I have my appointment tomorrow and

looking for feedback and wondering how accurate her response is. I'm dealing

with Kaiser here, and my experiences with them thus far have been negative to

say the least.

> > > > > > > > > >This was her response below. Any feedback would be much

appreciated.

> > > > > > > > > >Thanks!

> > > > > > > > > >

> > > > > > > > > >Ms. Abdallah,

> > > > > > > > > >The main purpose of your appointment with me later this week

is, in fact, to go over several of the issues/questions you raised in your

email. We always repeat the aldosterone and renin levels after surgery to assess

for surgical cure. As you've read, hypertension is improved after surgery for

all patients with unilateral disease and is cured (meaning blood pressure

medications are no longer required) in about 30-60% of patients. So, very often

we are able to reduce the medications but not stop them all together. I think

the significant improvement in your potassium levels is telling in and of itself

that you've benefited from the surgery.

> > > > > > > > > >The adrenal vein sampling tends to be used more in academic

and tertiary care level medical cente

> > >

> >

>