Re: Re: NIH report on necessity of AVS

[Guest guest]

Why?1. Experience over 40+ years. Did you also read Bravo's article in our files? If not do so-please.2. Most (all?) have bilateral disease in my analysis in looking at many surgically removed glands myself.3. Never say ALDO damage. You MUST eat too much salt to get ALDO damage.So always say ALDO/SALT damage to BP, heart, kidney, blood vessels.Therefore Low salt (AKA DASH diet) protects you from the ALDO/SALT damage. You might want to look up DOCA-Salt Model of Hypertension or ALDO-Salt Model of hypertension on pubmed or get the AHA Hypertension Primer and read it. It is a very good summary of what we expect all Drs to know by the time they graduate from Medical School and each chapter is about 2 pages. If you read a chapter every weeknight you will finish in a year. Then you can teach all of your health care team. They almost certainly never read it. CE Grim MDDr. Grim,This report is interesting and I plan to pass this on to my Endocrinologist at Mayo. You have mentioned before that you would personally wait to do AVS/surgery until the Spiro and DASH does not work. If out of 52 bilateral CT patients, 43 showed lateralization, this study would point to many missed surgery opportunities for those with inconclusive CT scans. Why is surgery not the best option to treat PA? It would seem to me that it would be more cost effective long term and if curative, prevent potential cardio damage from the Aldo excess. All of the doctors I have spoken to take the same approach and don't recommend surgery or AVS until Spiro fails. However, no one has given me the reason for this approach. Thumbnail under construction. 34 year old male. PA diagnosed 04/2011. CT inconclusive. Low K for last four years. HTN since 30 years old. >> .> J Am Coll Surg. 2010 Sep;211(3):384-90. Epub 2010 Jul 14.> Consequences of adrenal venous sampling in primary hyperaldosteronism > and predictors of unilateral adrenal disease.> Mathur A, Kemp CD, Dutta U, Baid S, Ayala A, Chang RE, Steinberg SM, > Papademetriou V, Lange E, Libutti SK,Pingpank JF, HR, Phan > GQ, M, Linehan WM, Pinto PA, Stratakis CA, Kebebew E.> Endocrine Oncology Section, Surgery Branch, National Cancer Institute, > MD, USA.> Abstract> BACKGROUND: In patients with primary hyperaldosteronism, > distinguishing between unilateral and bilateral adrenal hypersecretion > is critical in assessing treatment options. Adrenal venous sampling > (AVS) has been advocated by some to be the gold standard for > localization of the responsible lesion, but there remains a lack of > consensus for the criteria and the standardization of technique.> STUDY DESIGN: We performed a retrospective study of 114 patients with > a biochemical diagnosis of primary hyperaldosteronism who all > underwent CT scan and AVS before and after corticotropin (ACTH) > stimulation. Univariate and multivariate analyses were performed to > determine what factors were associated with AVS lateralization, and > which AVS values were the most accurate criteria for lateralization.> RESULTS: Eighty-five patients underwent surgery at our institution for > unilateral hyperaldosteronism. Of the 57 patients who demonstrated > unilateral abnormalities on CT, AVS localized to the contralateral > side in 5 patients and revealed bilateral hyperplasia in 6 patients. > Of the 52 patients who showed bilateral disease on CT scan, 43 > lateralized with AVS. The most accurate criterion on AVS for > lateralization was the post-ACTH stimulation value. Factors associated > with AVS lateralization included a low renin value, high plasma > aldosterone-to plasma-renin ratio, and adrenal mass > or = 3 cm on CT > scan.> CONCLUSIONS: Because 50% of patients would have been inappropriately > managed based on CT scan findings, patients with biochemical evidence > of primary hyperaldosteronism and considering adrenalectomy should > have AVS. The most accurate measurement for AVS lateralization was the > post-ACTH stimulation value. Although several factors predict > successful AVS lateralization, none are accurate enough to perform AVS > selectively.> Copyright © 2010 American College of Surgeons. Published by Elsevier > Inc. All rights reserved.>

[Guest guest]

Yes but they do not discuss the importance of DASHIng in reducing cost of meds.So if you and the thousands with PA can DASH and pay less for meds the cost analysis gets better.CE Grim MDI've seen a few journal articles in which it was stated that adrenalectomy is more cost-effective than meds in the long term. Sorry I can't point to citations at the moment.-msmith192845, female, 5'3", 120 lbs, 1cm left adrenal nodule, aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia, no HTN meds; other meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, and cyclobenzaprine 5mg as needed; low sodium, fructose- and grain-free dietIt would seem to me that it would be more cost effective long term and if curative, prevent potential cardio damage from the Aldo excess.

[Guest guest]

Last week we had a pdf file posted here about follow-up of 24 PA patients up

to about 17 or 20 years without surgery.

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|Thanks for the reply. So if most have bilateral disease, they

|most likely would need medicine in the future to control the

|PA. Have there been any follow up studies on long term follow

|up for those opting for surgery. I would imagine that if most

|end up having bilateral disease, the long term cure rates of

|surgery would be alarmingly low.

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[Guest guest]

Of the 60 members of this group who have been diagnosed with PA and who have filled out our survey, 10 have opted for adenalectomy. Of those 10 members, six have experienced some recurring symptoms. So our group shows is showing a rate slightly higher than Dr. Grim's estimated 50% recurrence. It sounds to me like surgery is a crap shoot at this point. You may end up cured but you may end up no better off than you were before surgery. Not good odds, I guess it's up to the individual whether they want to take the chance or not.

a

Subject: Re: NIH report on necessity of AVSTo: hyperaldosteronism Date: Tuesday, April 12, 2011, 1:05 PM

It seems to be a pretty big debate. Personally I want to see the long term curative rates of surgery. I have been reading the articles here and trying to get as much information as possible. From what I can tell, treating with Spiro will definitely not harm me in the short term and could end up being the best overall option. Therefore, I have started Spiro and continue to DASH like I am serious about DASHing. One thing is for certain, I don't want to have surgery and still have PA. If that would happen surgery would at that point be an unnecessary risk.> >>

[Guest guest]

Many of us here no doubt had PA for many years before diagnosis and treatment. I personally think I went 20+ years without a diagnosis and I'm still here and kicking. I sort of used to feel like you do, that aldosterone is a bad thing and that we who secrete too much of it are all doomed. But Dr. Grim convinced me that when aldosterone is blocked at the distal convoluted renal tubule by a mineralocorticoid blocker it isn't much of a problem unless you out-salt the medication. The key to this condition is the amount of salt ingested. If you've already decided that you're going to have an adrenalectomy, then my wish for you is that you'll be in the group that experience a long-term cure.

a

Subject: Re: NIH report on necessity of AVSTo: hyperaldosteronism Date: Tuesday, April 12, 2011, 12:58 PM

, I can tell you with certainty that for (relatively) young folks like you and me, the medical center I'm being treated by (UCLA) does *not* view surgery as a last resort - they view it as the best option for those of us who still have half a lifetime ahead of us.> > >> > > It would seem to me that it would be more cost effective long term > > > and if curative, prevent potential cardio damage from the Aldo excess.> > >> > >> > >> >>------------------------------------

[Guest guest]

I don't know of any other studies, . Like Dr. Grim says, there doesn't seem to be many studies done on those of us who don't have surgery.

a

Subject: Re: NIH report on necessity of AVSTo: hyperaldosteronism Date: Tuesday, April 12, 2011, 1:30 PM

Thanks a! That makes sense to me. Do you know of any other research completed out there? It seems to me that the standard for treatment is moving away from surgery. I say that because that is the advice I am getting across the board. The bad news for those opting for surgery is that surgery would become a very bad option if you have already had one adrenal gland removed. Living without an adrenal gland looks to be pretty messy from what I have read so far.Thanks for the info a. > > >> >>------------------------------------

[Guest guest]

Check ur urine Na And K to be certain ur dashing to the max. No Na no Aldo effects. Mostly nTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Thanks a, I'm pretty sure I've had this for somewhere between 15 and 20 years myself. I already eat a completely no-salt-added diet (and haven't touched any kind of processed food in over 10 years). I'm one of those who gets side effects from just about every medication I take, and in most cases, the side effects make me feel a lot worse than the condition that they are supposed to treat.

In one of your other posts you wrote "You may end up cured but you may end up no better off than you were before surgery. Not good odds, I guess it's up to the individual whether they want to take the chance or not." That's exactly where I am right now - if AVS shows that I'm a candidate for surgery, I plan to have it. Even if it buys me 5 years without medication, I will consider it a success.

Right now, the thing I am dreading most is that AVS will show mine is bilateral. Since spiro is already proven to not be an option, my only hope then will be Inspra. The files here show headaches and depression as common side effects - I already get migraines as well as PA-related headaches, so this has me feeling a little uneasy! And if I got any more headaches than I already do, depression most certainly would set in

-msmith1928

45, female, 5'3", 120 lbs, 1cm left adrenal nodule, aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia, no HTN meds; other meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, and cyclobenzaprine 5mg as needed; low sodium, fructose- and grain-free diet

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I had terrible migraines for all my life and they were even worse during last 6 months, when as I suppose I developed PA. As soon as I started to take eplerenone, my migraines disappeared compeletely. I take it for 4 months now, and I didn't have one headache. It's maybe too soon to talk about long term side effects of eplerenone, but I seriously doubt that this medicine might cause severe depression. When you feel so much better how you can get depressed? But, of course, everything is individual.

Natalia Kamneva 67 Russian F with left 1.5 cm adrenal adenoma, HTN and low renin , low aldosteron and high cortisol, K=3.4; eplerenone 25 mg twice a day works perfectly.

To: hyperaldosteronism Sent: Tue, April 12, 2011 2:06:48 PMSubject: Re: NIH report on necessity of AVS

Thanks a, I'm pretty sure I've had this for somewhere between 15 and 20 years myself. I already eat a completely no-salt-added diet (and haven't touched any kind of processed food in over 10 years). I'm one of those who gets side effects from just about every medication I take, and in most cases, the side effects make me feel a lot worse than the condition that they are supposed to treat.In one of your other posts you wrote "You may end up cured but you may end up no better off than you were before surgery. Not good odds, I guess it's up to the individual whether they want to take the chance or not." That's exactly where I am right now - if AVS shows that I'm a candidate for surgery, I plan to have it. Even if it buys me 5 years without medication, I will consider it a success.Right now, the thing I am dreading most is that AVS will show mine is bilateral. Since spiro is already proven to not be an option, my only hope then will

be Inspra. The files here show headaches and depression as common side effects - I already get migraines as well as PA-related headaches, so this has me feeling a little uneasy! And if I got any more headaches than I already do, depression most certainly would set in -msmith192845, female, 5'3", 120 lbs, 1cm left adrenal nodule, aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia, no HTN meds; other meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, and cyclobenzaprine 5mg as needed; low sodium, fructose- and grain-free diet> > > >> > > > It would seem to me that it would be more cost effective long

term > > > > and if curative, prevent potential cardio damage from the Aldo excess.> > > >> > > >> > > >> > >> >> > > > > ------------------------------------> >

[Guest guest]

Your's is a common story in my experience. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I had terrible migraines for all my life and they were even worse during last 6 months, when as I suppose I developed PA. As soon as I started to take eplerenone, my migraines disappeared compeletely. I take it for 4 months now, and I didn't have one headache. It's maybe too soon to talk about long term side effects of eplerenone, but I seriously doubt that this medicine might cause severe depression. When you feel so much better how you can get depressed? But, of course, everything is individual.

Natalia Kamneva 67 Russian F with left 1.5 cm adrenal adenoma, HTN and low renin , low aldosteron and high cortisol, K=3.4; eplerenone 25 mg twice a day works perfectly.

To: hyperaldosteronism Sent: Tue, April 12, 2011 2:06:48 PMSubject: Re: NIH report on necessity of AVS

Thanks a, I'm pretty sure I've had this for somewhere between 15 and 20 years myself. I already eat a completely no-salt-added diet (and haven't touched any kind of processed food in over 10 years). I'm one of those who gets side effects from just about every medication I take, and in most cases, the side effects make me feel a lot worse than the condition that they are supposed to treat.In one of your other posts you wrote "You may end up cured but you may end up no better off than you were before surgery. Not good odds, I guess it's up to the individual whether they want to take the chance or not." That's exactly where I am right now - if AVS shows that I'm a candidate for surgery, I plan to have it. Even if it buys me 5 years without medication, I will consider it a success.Right now, the thing I am dreading most is that AVS will show mine is bilateral. Since spiro is already proven to not be an option, my only hope then will

be Inspra. The files here show headaches and depression as common side effects - I already get migraines as well as PA-related headaches, so this has me feeling a little uneasy! And if I got any more headaches than I already do, depression most certainly would set in -msmith192845, female, 5'3", 120 lbs, 1cm left adrenal nodule, aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia, no HTN meds; other meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, and cyclobenzaprine 5mg as needed; low sodium, fructose- and grain-free diet> > > >> > > > It would seem to me that it would be more cost effective long

term > > > > and if curative, prevent potential cardio damage from the Aldo excess.> > > >> > > >> > > >> > >> >> > > > > ------------------------------------> >

[Guest guest]

What we really need is study of large group of PAs with lateralizing AVS who agree to be randomly allocated to surgery or Med RX. And then we follow up BP, K, BP meds, satisfaction with life and health care costs including strokes, CHF, cardiomegaly, renal failure, etc at 5, 10, etc years. Then we can make some better recommendations for the next folks. This is not likely to be done now due to "rarity of the disease". Until we get amnational health data base and see how much cost and suffering is related to other problems. A large study lime this -1000- in pts with atherosclerotic RAS: 1/2 randomized to ate ting and 1/2 to medical RX. Results of. This study are due in about 3 years. The driver for that study was the cost of thousands of people getting stented for any AS RAS. Maybe 200,000 are done each year with no data to prove long term benefits of stenting except to the pocketbook of the stenter. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I actually want the study on those who opt for surgery. If it is true that most end up having bilateral hyperplasia, logic would dictate that a very high percentage of those who have surgery (and have an AVS done) go on to have PA in the other adrenal. I am looking for the statistics of a cure rate for those who show lateralization in one adrenal gland. The cure rate mentioned is 50%. However, is that 50% of total surgeries or 50% of AVS positive surgeries.

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You are part of the cure. So hang in here with us. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Exactly what I want to look at Dr. Grim. Is there any research out there that examines the 5, 10 and 20 year cures? I would think BP meds might be needed eventually due to essential hypertension in someone who is approaching an elderly age. This use of medication would likely be needed with or without hyper aldosteronism.

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Now you are thinking my way but continue to think it thru. you might want to get and read with a pencil and paper in hand the book Clinical Epidemiology by Sackett and Haynes so you can rationalize this through is a quantitative fashion with you and your health care team. You are the only one who can make the ultimate valuations on what is called utility of the plan: Say how averse are you to taking a risk of say 1 in 10,000 or 100,000 at the time of surgery.CE Grim MDIt seems to be a pretty big debate. Personally I want to see the long term curative rates of surgery. I have been reading the articles here and trying to get as much information as possible. From what I can tell, treating with Spiro will definitely not harm me in the short term and could end up being the best overall option. Therefore, I have started Spiro and continue to DASH like I am serious about DASHing. One thing is for certain, I don't want to have surgery and still have PA. If that would happen surgery would at that point be an unnecessary risk.> > > >> > > > It would seem to me that it would be more cost effective long term > > > > and if curative, prevent potential cardio damage from the Aldo excess.> > > >> > > >> > > >> > >> >>

[Guest guest]

Well it was written a few years ago. Note there is no mention of low sodium diet in the treatment either but then Endos don't believe in salt as a culprit in HTN mostly.I have spoken to and presented posters to the National Meeting of the Endocrine Society and published in their journals and used to be a member till I could not longer afford to belong to HTN,Cards, Neph and Endocrine groups.Again most Endos say they don't seem much PA. The truth is they see it but don't recognize it.CE Grim MDIn an article posted by Val in the files, I found the Endocrine Societies guidelines for treating PA. On page 5 of the article I found the following:Primary Aldosteronism Guidelines 5four commonly used confirmatory tests. We recommend that all patients with primary aldosteronism undergo adrenal computed tomography (CT) as the initial study in subtype testing and to exclude adrenocortical carcinoma. We recommend the presence of a unilateral form of primary aldosteronism should be established/excluded by bilateral adrenal venous sampling by an experienced radiologist and, where present, optimally treated by laparoscopic adrenalectomy. We recommend that patients with bilateral adrenal hyperplasia, or those unsuitable for surgery, optimally be treated medically by mineralocorticoid receptor antagonists.It seems that the informed doctors I am getting information from all see to view AVS and surgery as a last resort. If this is now true, is this particular article now outdated? If the article is outdated, should it be removed from the group files?> > > >> > > > .> > > > J Am Coll Surg. 2010 Sep;211(3):384-90. Epub 2010 Jul 14.> > > > Consequences of adrenal venous sampling in primary > > > hyperaldosteronism> > > > and predictors of unilateral adrenal disease.> > > > Mathur A, Kemp CD, Dutta U, Baid S, Ayala A, Chang RE, Steinberg SM,> > > > Papademetriou V, Lange E, Libutti SK,Pingpank JF, HR, Phan> > > > GQ, M, Linehan WM, Pinto PA, Stratakis CA, Kebebew E.> > > > Endocrine Oncology Section, Surgery Branch, National Cancer > > > Institute,> > > > MD, USA.> > > > Abstract> > > > BACKGROUND: In patients with primary hyperaldosteronism,> > > > distinguishing between unilateral and bilateral adrenal > > > hypersecretion> > > > is critical in assessing treatment options. Adrenal venous sampling> > > > (AVS) has been advocated by some to be the gold standard for> > > > localization of the responsible lesion, but there remains a lack of> > > > consensus for the criteria and the standardization of technique.> > > > STUDY DESIGN: We performed a retrospective study of 114 patients > > > with> > > > a biochemical diagnosis of primary hyperaldosteronism who all> > > > underwent CT scan and AVS before and after corticotropin (ACTH)> > > > stimulation. Univariate and multivariate analyses were performed to> > > > determine what factors were associated with AVS lateralization, and> > > > which AVS values were the most accurate criteria for lateralization.> > > > RESULTS: Eighty-five patients underwent surgery at our institution > > > for> > > > unilateral hyperaldosteronism. Of the 57 patients who demonstrated> > > > unilateral abnormalities on CT, AVS localized to the contralateral> > > > side in 5 patients and revealed bilateral hyperplasia in 6 patients.> > > > Of the 52 patients who showed bilateral disease on CT scan, 43> > > > lateralized with AVS. The most accurate criterion on AVS for> > > > lateralization was the post-ACTH stimulation value. Factors > > > associated> > > > with AVS lateralization included a low renin value, high plasma> > > > aldosterone-to plasma-renin ratio, and adrenal mass > or = 3 cm on > > > CT> > > > scan.> > > > CONCLUSIONS: Because 50% of patients would have been inappropriately> > > > managed based on CT scan findings, patients with biochemical > > > evidence> > > > of primary hyperaldosteronism and considering adrenalectomy should> > > > have AVS. The most accurate measurement for AVS lateralization was > > > the> > > > post-ACTH stimulation value. Although several factors predict> > > > successful AVS lateralization, none are accurate enough to perform > > > AVS> > > > selectively.> > > > Copyright © 2010 American College of Surgeons. Published by Elsevier> > > > Inc. All rights reserved.> > > >> > >> > >> > >> >>

[Guest guest]

Thanks a.As you note only 60 of our 500+ members have filled out our data base.Please all you lurkers out there who have not entered anything into our data base please do so now. You are the cure!Only if we collect lots of good data can we make sense out of all of the many problems. We now have one of the largest groups of PA anywhere in the world.PLEASE fill out your data in our data base form-as much as you can or want to. See item 8 below in the welcome.ThanksCE Grim MD Welcome to the exciting world of Hyperaldosteronism! You are in the right place! I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Jerome W. Conn in Endocrinology and Metabolism 1969-70 and have published over 240 papers and book chapters in most areas of the discipline of High Blood Pressure. My CV is in our files for details. The goal of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt (sodium(Na) chloride (Cl) or NaCL) and potassium (K) and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you into a doctor we will make you into a pretty good BP doctor-a skill that you will have for life and you can transfer to the rest of your family who will likely have high blood pressure eventually-if they live long enough. 1. A brief history of Primary Aldosteronsim and why it is so common today in drug resistant high blood pressure. Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). READING THIS WILL SAVE YOU TIME AND MONEY. By taking it to your health care team they will not treat their other patients in the future as badly as they may have treated you in the past. You can also read and take the url to your health care team link: http://www.endotext.org/protocols/protocols7/protocolsframe7.htmThis is from a leading Endocrine text book they may have not read recently. 2. Read about other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. The first patient is described in my review article.To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. DASH to lower your BP. Your and my tax dollars funded the most important series of studies on how to improve blood pressure, blood sugar, blood lipids and make your heart smaller: The DASH Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, (http://www.amazon.com/DASH-Diet-Hypertension--/dp/0743202953) read it and use it: ~$8 in paperback at your local bookstore or online. If they don’t have it ask them to order it for you. You can also get the hardback larger print version as well at Amazon. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. See http://en.wikipedia.org/wiki/DASH_diet for an overview and more details. In the book go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds. Measure your BP every day and post to us. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP (20/10 mm Hg or more) and let your Dr. know you are doing this. And/Or go to (but costs money monthly) DASH Diet for Health Program (http://www.dashforhealth.com/pages/public/tour.php)The DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week they will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on the website, they create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise. I strongly recommend you get this book by .... and read it. 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist that your health care team do BP the AHA way. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: If you have a twin be sure to let us know. Go to familyhistory.hhs.gov and do your detailed family medical history (FHx or FH) so we can review with you to help diagnosis (Dx) and treat (Rx) familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Note one with PA whose BP and K normalized with low Na, High K diet and only 25 mg of spiro. DX: Also see our file from the Endocrine Society Guidelines on PA. 7. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks.2. No BP meds in last 4-12 weeks depending on meds.3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this.4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K (http://groups.yahoo.com/group/hyperaldosteronism/files/Investigating%20elevated%20potassium%20values..txt) Try to get this done about 4 hours after you have been out of bed.5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I helped perfect this test and have probably done more saline infusions than anyone in the world. 8. Become a participant in our PA Registry and contribute to our large database on PA: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 9. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/2918610. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm11. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor. Read our consumer's guide to an accurate blood pressure.12. How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can communicate the importance of high blood pressure to my patients. JNC 8 will be out soon.Then: get (and study) the Hypertension Primer from americanheart.org 4th addition. I coauthored the chapter on BP measurement. You can also get this for about $6 from Amazon.com. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned. If you don't like it take it to your health care team so they will know what every medical student today should know.13. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. We have had this site for 10 years and over 30,000 emails are searchable. This is the largest collection of communications about Conn's Syndrome in the World. 14. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....15: Abbreviations of common use in aldo speak include: AME apparent mineralocorticoid excess AVS adrenal vein sampling BB beta blockers CCB calcium channel blockers Dx diagnosis FHx family history GRE glucocorticoid remedial aldosteronism LNaV8 low sodium V8 juice. MCB mineralocorticoid blocker also called AB aldosterone blocker. MHx medical history Rx treatment SHx social history UNaKCr urinary sodium, potassium, creatinine May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FAHA Council for High Blood Pressure Research. Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure by the American Society of Hypertension. Retired Faculty/Professor of Medicine (U of MO, Indiana, UCLA/DREW, Medical College of Wisconsin in Nephrology, Endocrinology, Cardiology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Of the 60 members of this group who have been diagnosed with PA and who have filled out our survey, 10 have opted for adenalectomy. Of those 10 members, six have experienced some recurring symptoms. So our group shows is showing a rate slightly higher than Dr. Grim's estimated 50% recurrence. It sounds to me like surgery is a crap shoot at this point. You may end up cured but you may end up no better off than you were before surgery. Not good odds, I guess it's up to the individual whether they want to take the chance or not. aSubject: Re: NIH report on necessity of AVSTo: hyperaldosteronism Date: Tuesday, April 12, 2011, 1:05 PMIt seems to be a pretty big debate. Personally I want to see the long term curative rates of surgery. I have been reading the articles here and trying to get as much information as possible. From what I can tell, treating with Spiro will definitely not harm me in the short term and could end up being the best overall option. Therefore, I have started Spiro and continue to DASH like I am serious about DASHing. One thing is for certain, I don't want to have surgery and still have PA. If that would happen surgery would at that point be an unnecessary risk.> >>

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One is usually no problem. Two out is a disaster or can be. CE Grim MDThanks a! That makes sense to me. Do you know of any other research completed out there? It seems to me that the standard for treatment is moving away from surgery. I say that because that is the advice I am getting across the board. The bad news for those opting for surgery is that surgery would become a very bad option if you have already had one adrenal gland removed. Living without an adrenal gland looks to be pretty messy from what I have read so far.Thanks for the info a. > > >> >>

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I'm still with you 100% on this wondering business (and the fact that here in Switzerland the advice is to go with the surgery). Since the Spiro is not actually affecting the hormone production of the tumour, it's just dealing with the symptoms, surely delaying surgery until the tumour becomes even more active is a bad move? Isn't that basically what the advice is - start with the meds until they can no longer cope and then do the surgery - by which time the tumour is more active that it was to begin with?I heard a talk from a Dr in Switzerland who had been following several hundred patients with adrenal bumps but doing no surgery. But have not seen it formally published. But unless u are DASHing you really don't know how little meds you need to control the ALDO/SALT poisoning.I'm missing the data too - and missing the fact that collecting data on this board from anybody who happens to fill the files in is a scientifically valid survey of PA patients? Surely the research that has taken all the patients treated in a certain hospital over a period of time and following them up is a more valid base? Yes you are right but we now have more that anyone else in the world if folks would just put their data in.As has been said on here before, most people on here have more severe cases, more side-effects or meds/surgery has failed to cure for some reason. I have read all the qualitative reports - it's interesting to find out what other patients have been through - but I don't know how the data can actually be used to draw valid conclusions? Anybody?Numbers do not lie. Assuming folks here are telling the truth but that is a problem in all patient oriented research.Always good to question the data.CE Grim MDSorry, feeling cynical,H> > >> > > It would seem to me that it would be more cost effective long term > > > and if curative, prevent potential cardio damage from the Aldo excess.> > >> > >> > >> >>

[Guest guest]

Polls are not usually scientifically "accountable" but are great tools for trends and patterns....so POLL away....you are right Dr G it is more than anyone else seems to be doing and from great ideas come great answers...eventually

I'm still with you 100% on this wondering business (and the fact that here in Switzerland the advice is to go with the surgery). Since the Spiro is not actually affecting the hormone production of the tumour, it's just dealing with the symptoms, surely delaying surgery until the tumour becomes even more active is a bad move? Isn't that basically what the advice is - start with the meds until they can no longer cope and then do the surgery - by which time the tumour is more active that it was to begin with?

I heard a talk from a Dr in Switzerland who had been following several hundred patients with adrenal bumps but doing no surgery. But have not seen it formally published.

But unless u are DASHing you really don't know how little meds you need to control the ALDO/SALT poisoning.

I'm missing the data too - and missing the fact that collecting data on this board from anybody who happens to fill the files in is a scientifically valid survey of PA patients? Surely the research that has taken all the patients treated in a certain hospital over a period of time and following them up is a more valid base?

Yes you are right but we now have more that anyone else in the world if folks would just put their data in.

As has been said on here before, most people on here have more severe cases, more side-effects or meds/surgery has failed to cure for some reason. I have read all the qualitative reports - it's interesting to find out what other patients have been through - but I don't know how the data can actually be used to draw valid conclusions? Anybody?

Numbers do not lie. Assuming folks here are telling the truth but that is a problem in all patient oriented research.

Always good to question the data.

CE Grim MD

Sorry, feeling cynical,H> > >> > > It would seem to me that it would be more cost effective long term > > > and if curative, prevent potential cardio damage from the Aldo excess.> > >> > >> > >> >>

[Guest guest]

And she is taking no BP meds at all and eating all the salt she wants? Great then she is cured.Being from MIssouri I would like to look at her properly measured BP and urine Na, K and renin and aldo.You might remind him that he can follow 500 or so here.CE Grim MDI am planning to ask. For now, I can tell you that my nephrologist has been following his one (one!) adrenalectomy patient for 15 years, and she is still "cured."> > > > >> > > > > It would seem to me that it would be more cost effective long > > term> > > > > and if curative, prevent potential cardio damage from the Aldo > > excess.> > > > >> > > > >> > > > >> > > >> > >> >> >> >>

[Guest guest]

good sounds like a cure at 15 years to me.Maybe she should join our group?CE Grim MDNo BP meds at all. Didn't discuss diet.> > > > > > >> > > > > > > It would seem to me that it would be more cost effective > > long> > > > term> > > > > > > and if curative, prevent potential cardio damage from the > > Aldo> > > > excess.> > > > > > >> > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > > >> > > >> > >> >> >> >>

[Guest guest]

Go to PUMMED and search DOCA-SALT and ALDO-SALT HTN. Most will be animal studies but also look at Dr. Calhoun on low salt diet in drug resistant HTN.I assume you read the Bravo Article in our files as recommend in our welcome below.Also search on aldosterone and cardiac fibrosis.CE Grim MD Welcome to the exciting world of Hyperaldosteronism! You are in the right place! I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Jerome W. Conn in Endocrinology and Metabolism 1969-70 and have published over 240 papers and book chapters in most areas of the discipline of High Blood Pressure. My CV is in our files for details. The goal of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt (sodium(Na) chloride (Cl) or NaCL) and potassium (K) and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you into a doctor we will make you into a pretty good BP doctor-a skill that you will have for life and you can transfer to the rest of your family who will likely have high blood pressure eventually-if they live long enough. 1. A brief history of Primary Aldosteronsim and why it is so common today in drug resistant high blood pressure. Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). READING THIS WILL SAVE YOU TIME AND MONEY. By taking it to your health care team they will not treat their other patients in the future as badly as they may have treated you in the past. You can also read and take the url to your health care team link: http://www.endotext.org/protocols/protocols7/protocolsframe7.htmThis is from a leading Endocrine text book they may have not read recently. 2. Read about other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. The first patient is described in my review article.To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. DASH to lower your BP. Your and my tax dollars funded the most important series of studies on how to improve blood pressure, blood sugar, blood lipids and make your heart smaller: The DASH Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, (http://www.amazon.com/DASH-Diet-Hypertension--/dp/0743202953) read it and use it: ~$8 in paperback at your local bookstore or online. If they don’t have it ask them to order it for you. You can also get the hardback larger print version as well at Amazon. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. See http://en.wikipedia.org/wiki/DASH_diet for an overview and more details. In the book go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds. Measure your BP every day and post to us. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP (20/10 mm Hg or more) and let your Dr. know you are doing this. And/Or go to (but costs money monthly) DASH Diet for Health Program (http://www.dashforhealth.com/pages/public/tour.php)The DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week they will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on the website, they create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise. I strongly recommend you get this book by .... and read it. 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist that your health care team do BP the AHA way. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: If you have a twin be sure to let us know. Go to familyhistory.hhs.gov and do your detailed family medical history (FHx or FH) so we can review with you to help diagnosis (Dx) and treat (Rx) familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Note one with PA whose BP and K normalized with low Na, High K diet and only 25 mg of spiro. DX: Also see our file from the Endocrine Society Guidelines on PA. 7. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks.2. No BP meds in last 4-12 weeks depending on meds.3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this.4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K (http://groups.yahoo.com/group/hyperaldosteronism/files/Investigating%20elevated%20potassium%20values..txt) Try to get this done about 4 hours after you have been out of bed.5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I helped perfect this test and have probably done more saline infusions than anyone in the world. 8. Become a participant in our PA Registry and contribute to our large database on PA: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 9. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/2918610. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm11. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor. Read our consumer's guide to an accurate blood pressure.12. How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can communicate the importance of high blood pressure to my patients. JNC 8 will be out soon.Then: get (and study) the Hypertension Primer from americanheart.org 4th addition. I coauthored the chapter on BP measurement. You can also get this for about $6 from Amazon.com. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned. If you don't like it take it to your health care team so they will know what every medical student today should know.13. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. We have had this site for 10 years and over 30,000 emails are searchable. This is the largest collection of communications about Conn's Syndrome in the World. 14. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....15: Abbreviations of common use in aldo speak include: AME apparent mineralocorticoid excess AVS adrenal vein sampling BB beta blockers CCB calcium channel blockers Dx diagnosis FHx family history GRE glucocorticoid remedial aldosteronism LNaV8 low sodium V8 juice. MCB mineralocorticoid blocker also called AB aldosterone blocker. MHx medical history Rx treatment SHx social history UNaKCr urinary sodium, potassium, creatinine May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FAHA Council for High Blood Pressure Research. Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure by the American Society of Hypertension. Retired Faculty/Professor of Medicine (U of MO, Indiana, UCLA/DREW, Medical College of Wisconsin in Nephrology, Endocrinology, Cardiology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. My next focus of research will be looking at the long term affect of Aldo on the body. Dr. Grim, you mention that Aldo does not harm the system unless one consumes a diet high in salt. What research is that based on? Is there an article that I could read regarding this relationship? If I can convince myself with relative certainty that the Aldo won't harm my heart if I am strict about my diet, then I think that would make up my mind to use the meds as long as possible. My concern is the possibility of PA hurting me long term while on the Spiro. I've tried to locate information on Aldo, but the only study I found was on how Aldo harms the heart and organs independent of blood pressure control. However, salt is not mentioned in that particular article.34 male. Diagnosed PA 04/2011. Low k since early 20s. HTN for last 4 years. Currently deciding if I should pursue AVS and/or surgery.> > > > > >> > > > > > It would seem to me that it would be more cost effective > > long term> > > > > > and if curative, prevent potential cardio damage from the > > Aldo excess.> > > > > >> > > > > >> > > > > >> > > > >> > > >> > >> >> >> >>

[Guest guest]

It is a combo of the BP and the low K and the aldo. So DASHCE Grim MDOn Apr 13, 2011, at 7:45 AM, Francis Bill SUSPECTED PA wrote:Need to research what aldo does to the brain. Is what Aldo does in brain also related to how much salt as well. Is it low K that affects the brain? Here is one study in our files that has some of this in it. http://health.groups.yahoo.com/group/hyperaldosteronism/files/depression%20and%20PA/--- In hyperaldosteronism , "crzylnebkr" wrote:>> My next focus of research will be looking at the long term affect of Aldo on the body. Dr. Grim, you mention that Aldo does not harm the system unless one consumes a diet high in salt. What research is that based on? Is there an article that I could read regarding this relationship? If I can convince myself with relative certainty that the Aldo won't harm my heart if I am strict about my diet, then I think that would make up my mind to use the meds as long as possible. My concern is the possibility of PA hurting me long term while on the Spiro. I've tried to locate information on Aldo, but the only study I found was on how Aldo harms the heart and organs independent of blood pressure control. However, salt is not mentioned in that particular article.> > > 34 male. Diagnosed PA 04/2011. Low k since early 20s. HTN for last 4 years. Currently deciding if I should pursue AVS and/or surgery.> > > > > > > > > >> > > > > > > It would seem to me that it would be more cost effective > > > long term> > > > > > > and if curative, prevent potential cardio damage from the > > > Aldo excess.> > > > > > >> > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> > >> > >> >>