Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 I bought ink so now I can print out your article. I have fingers and toes crossed that this new Dr will listen. Thanks again! Thats what we are here for.Tell your health care team as well.They may want to read my article as well.CE Grim MDI stopped the CCB and my BP went down. Thanks to y'all for the info Possibly. What meds are you taking? There was someone else on this board who mentioned that she stopped taking a CCB and her BP went down.> > > Subject: Re: up next, AVS> To: hyperaldosteronism > Date: Thursday, March 3, 2011, 8:31 PM> > > > > > > > Â > > > > > > > > > > > I read some others BP's they post and they often report theirs in the 140-160/90-110 range off meds. I walked around nearly always even on 4-5 meds (but never spiro) at the 160-170/110-130ish and often the diastolic hit 140. > > > > , while *on* meds - CCBs and ARBs - my BP was in the 160s/100s range. Once I stopped those, it dropped to the 140s/90s.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 Have u entered ur data in our database. Only by keeping track can we learn to better advise future pts. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension , Thanks for that link. It does support the advice I'm getting which is great news. I'm a clear 'go down the left hand side of the flow chart'. Interesting that 40 seems to be such a cut off and I don't know how much research has gone into that (I'm sure some on here do) since other factors must be just as critical. Still if I base a decision on that link alone, I would be leaping past AVS. Hester > > > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!) > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general. > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery. > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks! > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 I will definitely take this info to new GP. Thanks you! I won't be off the BP meds that long tho. should he hold off testing urine til 6 weeks? Or all labs? I will post my full story and labs . I found some of my old labs. Before surgery labs. Would those be of any use here. Give us your complete story and numbers and we can help.Be sure your new GP PCP does the Grim test below (#7). Ideally off all drugs from 6 weeks. 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. 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. I hAd l-adrenalectomy about 5 years ago. I felt the operation was successful. All my symptoms went away nd I even lost a lot of weight with no effort. Moon face went away too. Now I'm gettin symptoms again so I found this site. I'm wondering if I had bilateral0PA or something else? Thyroid? I do have a pituitary adenoma. I am seeing a new PCP next week to start all the labs. Why can't you still do that? You haven't had the operation yet have you? Any time I've had a proceedure they ask if I have any reservations before I sign the form, it sounds like you do. I'm sure they will still be there to do the operation if you want to try DASHing first. Good Luck!> >> > >>> > >>> I've been on this list since 2005. I've seen many come through who got surgery; nearly all after having AVS. After a while, they just disappear. I assume they got well. I've only seen one (Dave, now deceased) who had an adrenalectomy at Hospital in St. Louis, and continued to have PA. I think that was long before AVS was routine. For people who continue to have problems without following the advice to have AVS before surgery, I doubt we'd hear much from them.> >>> > >>> > >>> > >>> Val> >>> > >>> > >>> > >>> From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of msmith_1928> >>> > >>> > >>> Hi Hester, sounds like a pretty similar situation to mine - otherwise great general health, clear-cut lab results, presence of an adenoma. I think my specialist may have said based on all of that, he's 99% sure that the adenoma is the culprit and that skipping the AVS is an option. > >>> > >>> As you have noted, there is very little information out there on the pros and cons of surgery vs. meds. As Dr. Grim has mentioned, we only hear from the people who are having problems. Once the problems are solved, the generally don't hang around posting to message boards, or seek them out in the first place.> >>> > >>> It's very nerve-wracking, to say the least! Please keep us posted of your progress and your decisions.> >>> > >>> > >>> > >>> > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 yes put in our data base.cegI will definitely take this info to new GP. Thanks you! I won't be off the BP meds that long tho. should he hold off testing urine til 6 weeks? Or all labs? I will post my full story and labs . I found some of my old labs. Before surgery labs. Would those be of any use here. Give us your complete story and numbers and we can help.Be sure your new GP PCP does the Grim test below (#7). Ideally off all drugs from 6 weeks. 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. 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. Seesharedcareinc.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 tofamilyhistory.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 fromAmazon.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. I hAd l-adrenalectomy about 5 years ago. I felt the operation was successful. All my symptoms went away nd I even lost a lot of weight with no effort. Moon face went away too. Now I'm gettin symptoms again so I found this site. I'm wondering if I had bilateral0PA or something else? Thyroid? I do have a pituitary adenoma. I am seeing a new PCP next week to start all the labs. Why can't you still do that? You haven't had the operation yet have you? Any time I've had a proceedure they ask if I have any reservations before I sign the form, it sounds like you do. I'm sure they will still be there to do the operation if you want to try DASHing first. Good Luck!> >> > >>> > >>> I've been on this list since 2005. I've seen many come through who got surgery; nearly all after having AVS. After a while, they just disappear. I assume they got well. I've only seen one (Dave, now deceased) who had an adrenalectomy at Hospital in St. Louis, and continued to have PA. I think that was long before AVS was routine. For people who continue to have problems without following the advice to have AVS before surgery, I doubt we'd hear much from them.> >>> > >>> > >>> > >>> Val> >>> > >>> > >>> > >>> From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of msmith_1928> >>> > >>> > >>> Hi Hester, sounds like a pretty similar situation to mine - otherwise great general health, clear-cut lab results, presence of an adenoma. I think my specialist may have said based on all of that, he's 99% sure that the adenoma is the culprit and that skipping the AVS is an option. > >>> > >>> As you have noted, there is very little information out there on the pros and cons of surgery vs. meds. As Dr. Grim has mentioned, we only hear from the people who are having problems. Once the problems are solved, the generally don't hang around posting to message boards, or seek them out in the first place.> >>> > >>> It's very nerve-wracking, to say the least! Please keep us posted of your progress and your decisions.> >>> > >>> > >>> > >>> > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 , First, let me say that I have bilateral functioning adenomas and am not a candidate for surgery. I was finally diagnosed with PA about 5 years ago at the University of Michigan, where Dr. Grim trained with Dr. Conn a few years back . I had not found this group at that time and I opted to have an AVS there in hopes that only one adenoma was functional and I might be a candidate for surgery. Yes, there are risks to AVS but I can tell you that if you do your homework and find an Interventional Radiologist experienced with AVS, it is no more than a minor inconvenience and takes about four hours of your time. Anyway, the point I wanted to make is that I was told by the experts at the U-M that adrenal adenomas very rarely turn malignant and I did not need to have another CT unless there was an unexplained change in my condition. And when I found this group I was glad to find that Dr. Grim agrees. Good luck, a Subject: Re: up next, AVSTo: hyperaldosteronism Date: Friday, March 4, 2011, 9:57 PM Again, I want to make sure you know that I have no ownership in this decision so you do what you feel is best for you. I only hope I can provide you some good unbiased information to help you with the process.I can tell you I had a few years writing statistical programs for a large insurance company so I am pretty good at figuring out how to "work the numbers". The group that came up with that chart I provided you apparently certify all the Endocrine Surgeons of North and South America as well as some international countries, trustworthy I guess!To the numbers: What is the distribution of tumors, by age? (Us older individuals have more time to grow extra parts!) I personally am beginning to think this is important enough that I consider any survey that can't or doesn't is ambigious at best! I know one of our surveys asks age at first notification, it might be fun to check it out. What is the risk of problems with the AVS? (Ruptured vein or inconclusive results = adrenal removal I believe.) What happens if the one you rupture is the one you wanted to keep? Now you are left with none!What do you do with the tumor if it isn't producing? The instructions I remember is scan every 6-12 mos. to ensure it isn't growing and becomming maliginant. Assuming you are mid-life at 40 that's 40 to 60 xrays, did somebody say radiation!I'm going to quit fot the night, I've probably said enough to start a good discussion. Besides, my "bad eye:" is trying to take over so I have been 1 key off all night, ignore the typo's! (I also just "lost" most of a paragraph , let me know if you find it!)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 How do I upload a paper into a folder on our site?Thanks.The link may now work. When I first read this I tried it and it didn't work but now seems to. You can find this on group site in files. Look for Endocrine_Society_PA_Guidelines.pdf > > > > > >> > > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general.> > > > > > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery.> > > > > > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks!> > > > > > > > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Yep and the chances of cure are much less than if you have AVS done.CE Grim MDOn Mar 5, 2011, at 10:51 AM, Francis Bill SUSPECTED PA wrote:By the information in this link. Any one less then 40 and tests show they have PA has CT done to see if there is a tumor. If tumor shows automaticiy have it removed with out doing AVS. If you are over 40 they you have AVS to see if side with tumor is the side to remove. > > > > >> > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general.> > > > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery.> > > > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks!> > > > > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 But I want to add to a folder already there.CE Grim MDOn Mar 5, 2011, at 11:01 AM, Francis Bill SUSPECTED PA wrote:after you go to files on the left top just under the add you will see create folder click on that fill in the information and save. then go to folder and top left side click add file this then lets you browse to where the file you want to add is thet click upload. Or something like that > > > > > > > >> > > > > > > > My doctor just called with the results of last week's > > aldosterone suppresion test/oral sodium loading test. As expected, > > my aldo was off the charts high, both serum and urine. (I can post > > numbers when I have a hard copy in front of me, if anyone is > > interested.) The interesting thing my doctor observed was that I did > > not excrete a lot of sodium - he believes it's because my diet is > > very low sodium. (I believe it's still trapped in my body in the > > form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > >> > > > > > > > This gives me the go-ahead for AVS, or, interestingly, > > he said I could skip the AVS and have the adrenalectomy. I want to > > be good and certain that the culprit is my left adrenal before > > surgery, so I think I'm going through with the AVS first. I'm aware > > of the high risk of inconclusive results, and the risks of the > > procedure in general.> > > > > > > >> > > > > > > > This brings up two questions: how common is it to skip > > the AVS entirely? I only heard of that recently from another member > > here; I had been under the impression that standard protocol was AVS > > before surgery.> > > > > > > >> > > > > > > > And, long shot I know, but - anybody here have their AVS > > done at UCLA? Or anywhere in the greater Los Angeles area? If you > > have an interventional radiologist in the area that you'd recommend, > > please let me know. Thanks!> > > > > > > >> > > > > > > >> > > > > > > > - 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 meds currently > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 And be sure the do it with ACTH.CE Grim MDa, thank you for your input on this. Your story is exactly why I am insisting on AVS before surgery, even though my doctor is certain that the adenoma visible on my CT scan is aldo producing. I can only hope that my AVS experience is as successful as yours!- 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> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Our folks have not found us until too late to do Things right. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension By the information in this link. Any one less then 40 and tests show they have PA has CT done to see if there is a tumor. If tumor shows automaticiy have it removed with out doing AVS. If you are over 40 they you have AVS to see if side with tumor is the side to remove. > > > > > > > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!) > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general. > > > > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery. > > > > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks! > > > > > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Go to the group (click on link at the bottom of this email) /Files /Find the folder you want and double click on it - i.e., Conn's Articles of Note /Find the folder you want and double click on it. At the bottom of the list, you will see the option to upload something or create a new folder. Click on what you want and it will guide you to the light. Before you start, BTW, you should know where it is on your computer. I note that stories and other items are out of their appropriate folders. Maybe one of these days, I'll try cleaning it up. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim How do I upload a paper into a folder on our site? Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Because good/experienced radiologists demand more money for it while junior ones can't do it properly. | | |As you should, you OLD lady! You might take that chart and |ask your Dr. why s/he recommended skipping the AVS. Might be |a good time to review credentials! | | |> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Don't forget we have more experience here than an single Dr has in the world. Tough to bet that. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Probably a momentary oversight - I constantly have to remind my doctors that I'm an old middle-aged lady Apparently I look/act younger, whatever that means! But I am going to print the chart out for him regardless. In his 30+ years of practice, I'm his 6th confirmed PA case, and only the second to opt for surgery, so he may not be up to speed on the protocol. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Most likely recommended because he does not have long term followup in his pts. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension As you should, you OLD lady! You might take that chart and ask your Dr. why s/he recommended skipping the AVS. Might be a good time to review credentials! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 That's ALOT of metoprolol! How do you keep your heart rate up and stay awake? On Metoprolol, if I went over 25mg, it always made me feel almost like I was depressed. I take 25mg now when my heart gets up, but only if I need it. It used to drop my heart rate into the 40's until I had hyperthyroidism, then even when it resolved my heart still likes to race.Subject: Re: up next, AVSTo: hyperaldosteronism Date: Saturday, March 5, 2011, 6:45 PM First, I'm not on nearly as many drugs as I was on a short time ago! I'm down to 3 BP meds (yesterday it was 2 but I found out you don't go from 400 mg of METOPROLOL TARTRATE to zero overnight!) So back on to MT and AMLODIPINE BESYLAT and LISINOPRIL. The replacement drugs they have me on are FUROSEMIDE 40MG and SPIRONOLACTONE 25MG x 2. (That cocktail of drugs gave me a 105/58 BP for last week with an ave. for the month of 110/60.) That is why it is time to loose another one but apparently I have to wean down and can't just stop like I did the rest. Dr.W will be in Monday and we will figure out what/when & how. Regarding your suggestion, Did you run my meds. and get a result of, "May cause blue balls or something similar?" If it is just something you think may be possible, I'll be looking for that after the current testing comes to conclusion if and when it fails. I learned many years ago troubleshooting computer problems that you only take one path at a time and also limit the number of changes so you know what caused a change if something unexpected happened. (That is how I knew to go back to the MP and wait for Dr.W when Heart Rate went to 115 BPM!) > > > > > > > > > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!) > > > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general. > > > > > > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery. > > > > > > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks! > > > > > > > > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 As trust worthy as surgeons can be. They also know how to work the numbers. You don't see anyone back after a year.Again, I want to make sure you know that I have no ownership in this decision so you do what you feel is best for you. I only hope I can provide you some good unbiased information to help you with the process.I can tell you I had a few years writing statistical programs for a large insurance company so I am pretty good at figuring out how to "work the numbers". The group that came up with that chart I provided you apparently certify all the Endocrine Surgeons of North and South America as well as some international countries, trustworthy I guess!To the numbers: What is the distribution of tumors, by age? (Us older individuals have more time to grow extra parts!) I personally am beginning to think this is important enough that I consider any survey that can't or doesn't is ambigious at best! I know one of our surveys asks age at first notification, it might be fun to check it out. What is the risk of problems with the AVS? (Ruptured vein or inconclusive results = adrenal removal I believe.) What happens if the one you rupture is the one you wanted to keep? Now you are left with none!What do you do with the tumor if it isn't producing? The instructions I remember is scan every 6-12 mos. to ensure it isn't growing and becomming maliginant. Assuming you are mid-life at 40 that's 40 to 60 xrays, did somebody say radiation!I'm going to quit fot the night, I've probably said enough to start a good discussion. Besides, my "bad eye:" is trying to take over so I have been 1 key off all night, ignore the typo's! (I also just "lost" most of a paragraph , let me know if you find it!)> > > >> > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general.> > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery.> > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks!> > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 It should not as it leads to false results. See my CV on this in about 1977 as I recall. CE Grim MDDr Grim, thank you for clarifying that. I've seen reports of with/without and was wondering why there seems to be two schools of thought on this - why would some do it without ACTH?> > > >> > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 CT has no bearing at all on whether or not one has Conn's. Conn's is a biochemical diagnosis made from periphreal blood, urine and adrenal vein blood.CE Grim MDLooks like you have it right, again this is one group (who happens to represent a large section of the Endocrine Surgeons of the world). As Dr. G. pointed out, they do have a vested interest in surgery but I feel their highest priority is still honesty and what's best for the patient. They are also the first of many to validate their recommendation - they have the adnoma in their hand! If you are under 40 and elect to do the AVS and it is negative let us and the world know, it will be one step in proving that there should not be descrimination based on age! If you are 40 or older and skip the AVS anyway and find the tumor was producing CONGRATULATIONS, you beat the odds! You should take the $27,000 you saved and head to Los Vegas and see just how lucky you really are! (You might consider starting a fund to help the other fools that follow your path and had a needless operation IF you are a winner!)(Did I just call myself a fool? NO, REMEMBER I HAVE AN ALTERIOR MOTIVE - the pain!)Again, it's your body; You decide what's best for you and then go for it! Whatever you decide, let us know so maybe we can make it easier and better for those that follow us! GOOD LUCK and "B" HEALTHY!> > > > > >> > > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general.> > > > > > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery.> > > > > > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks!> > > > > > > > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 CT has no bearing at all on whether or not one has Conn's. Conn's is a biochemical diagnosis made from periphreal blood, urine and adrenal vein blood.CE Grim MDLooks like you have it right, again this is one group (who happens to represent a large section of the Endocrine Surgeons of the world). As Dr. G. pointed out, they do have a vested interest in surgery but I feel their highest priority is still honesty and what's best for the patient. They are also the first of many to validate their recommendation - they have the adnoma in their hand! If you are under 40 and elect to do the AVS and it is negative let us and the world know, it will be one step in proving that there should not be descrimination based on age! If you are 40 or older and skip the AVS anyway and find the tumor was producing CONGRATULATIONS, you beat the odds! You should take the $27,000 you saved and head to Los Vegas and see just how lucky you really are! (You might consider starting a fund to help the other fools that follow your path and had a needless operation IF you are a winner!)(Did I just call myself a fool? NO, REMEMBER I HAVE AN ALTERIOR MOTIVE - the pain!)Again, it's your body; You decide what's best for you and then go for it! Whatever you decide, let us know so maybe we can make it easier and better for those that follow us! GOOD LUCK and "B" HEALTHY!> > > > > >> > > > > > My doctor just called with the results of last week's aldosterone suppresion test/oral sodium loading test. As expected, my aldo was off the charts high, both serum and urine. (I can post numbers when I have a hard copy in front of me, if anyone is interested.) The interesting thing my doctor observed was that I did not excrete a lot of sodium - he believes it's because my diet is very low sodium. (I believe it's still trapped in my body in the form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could skip the AVS and have the adrenalectomy. I want to be good and certain that the culprit is my left adrenal before surgery, so I think I'm going through with the AVS first. I'm aware of the high risk of inconclusive results, and the risks of the procedure in general.> > > > > > > > > > > > This brings up two questions: how common is it to skip the AVS entirely? I only heard of that recently from another member here; I had been under the impression that standard protocol was AVS before surgery.> > > > > > > > > > > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional radiologist in the area that you'd recommend, please let me know. Thanks!> > > > > > > > > > > > > > > > > > - 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Will try tonight.CEGo to the group (click on link at the bottom of this email)/Files/Find the folder you want and double click on it - i.e., Conn's Articles of Note/Find the folder you want and double click on it.At the bottom of the list, you will see the option to upload something or create a new folder. Click on what you want and it will guide you to the light. Before you start, BTW, you should know where it is on your computer. I note that stories and other items are out of their appropriate folders. Maybe one of these days, I'll try cleaning it up. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence GrimHow do I upload a paper into a folder on our site? Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Good but HIPPA is tricky. Actually he should not tell you about anyother patients unless they have given him permission to do that.CE Grim MDActually he does - of his 6 PA patients, one opted for adrenalectomy 15 years ago. She still sees him, and says she is doing well. I'm planning on asking him to put me in touch with her, but with HIPAA and all that, who knows...> > > > >> > > >> > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 You have summarized it pretty well. Except I do not know any 97% stuff in AVS or surgery results.CE Grim MDI'm also interested in the actual stats on 'much less'. If the recommendation of the AAES (if that's how they're known) is to skip AVS if you're under 40, I presume they base this on some data that supports that (my yet-to-be-supported 97%?)? Especially as over 40 they clearly recommend AVS first so it's not that they're anti-AVS. And is it even more näive to imagine that my position is currently a lifetime of drugs vs. surgery that may or may not lead to cure. And if it doesn't lead to cure, then I have a lifetime of drugs (either immediately or whenever I get a recurrence on the other side). If surgery is not successful, does that mean a higher drug requirement than if I just opt for drugs straight off? Or is it a question of life expectancy? What downside have I missed?I get the clear risk that the growth on one side could be benign and co-incidentally the other, apparently clear, side could be the trouble maker (or it could be bilateral) but if I can get a justification for 97%, that's a 3% risk I'm willing to take (topside risk given that even AVS will not necessarily give a clear picture). Especially if the only downside of the risk is a lifetime of drugs. I'm not ignoring DASH and all that but I see that as supplementary in every scenario - it's not going to effect a cure for me.Hester> > > > > > > >> > > > > > > > My doctor just called with the results of last week's > > > aldosterone suppresion test/oral sodium loading test. As expected, > > > my aldo was off the charts high, both serum and urine. (I can post > > > numbers when I have a hard copy in front of me, if anyone is > > > interested.) The interesting thing my doctor observed was that I did > > > not excrete a lot of sodium - he believes it's because my diet is > > > very low sodium. (I believe it's still trapped in my body in the > > > form of the extra 2 pounds I've been carrying around since the test!)> > > > > > > >> > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he > > > said I could skip the AVS and have the adrenalectomy. I want to be > > > good and certain that the culprit is my left adrenal before surgery, > > > so I think I'm going through with the AVS first. I'm aware of the > > > high risk of inconclusive results, and the risks of the procedure in > > > general.> > > > > > > >> > > > > > > > This brings up two questions: how common is it to skip the > > > AVS entirely? I only heard of that recently from another member > > > here; I had been under the impression that standard protocol was AVS > > > before surgery.> > > > > > > >> > > > > > > > And, long shot I know, but - anybody here have their AVS > > > done at UCLA? Or anywhere in the greater Los Angeles area? If you > > > have an interventional radiologist in the area that you'd recommend, > > > please let me know. Thanks!> > > > > > > >> > > > > > > >> > > > > > > > - 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 meds currently > > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Do a pub med search and read the Endo Guidelines in our files for numbers. Some seem to forget that I have been doing this for 40+ years and have published over 220 paper related to most aspects of HTN ESP PA. And have been doing this site for almost 10 years so I prob one of the most knowledgeable folks in the business. IMHO. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Dr Grim - going back to the quote 'Yep and the chances of cure are much less than if you have AVS done.' > > > > > > > > > > > > > > > > > > > > > > > > My doctor just called with the results of last week's > > > > > > > aldosterone suppresion test/oral sodium loading test. As > > > > expected, > > > > > > > my aldo was off the charts high, both serum and urine. (I can > > > > post > > > > > > > numbers when I have a hard copy in front of me, if anyone is > > > > > > > interested.) The interesting thing my doctor observed was that > > > > I did > > > > > > > not excrete a lot of sodium - he believes it's because my diet > > > > is > > > > > > > very low sodium. (I believe it's still trapped in my body in the > > > > > > > form of the extra 2 pounds I've been carrying around since the > > > > test!) > > > > > > > > > > > > > > > > > > > > > > > > This gives me the go-ahead for AVS, or, > > > > interestingly, he > > > > > > > said I could skip the AVS and have the adrenalectomy. I want > > > > to be > > > > > > > good and certain that the culprit is my left adrenal before > > > > surgery, > > > > > > > so I think I'm going through with the AVS first. I'm aware of > > > > the > > > > > > > high risk of inconclusive results, and the risks of the > > > > procedure in > > > > > > > general. > > > > > > > > > > > > > > > > > > > > > > > > This brings up two questions: how common is it to > > > > skip the > > > > > > > AVS entirely? I only heard of that recently from another member > > > > > > > here; I had been under the impression that standard protocol > > > > was AVS > > > > > > > before surgery. > > > > > > > > > > > > > > > > > > > > > > > > And, long shot I know, but - anybody here have their > > > > AVS > > > > > > > done at UCLA? Or anywhere in the greater Los Angeles area? If > > > > you > > > > > > > have an interventional radiologist in the area that you'd > > > > recommend, > > > > > > > please let me know. Thanks! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > - 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 meds currently > > > > > > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 The surgeon's guidelines. They prefer to operate on younger folks. They heal faster. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Most likey not going to find much on the 40 year old cut off on doing AVS. What would change this just based on age? > > > > > > > > > > > > > > > > > > > > > > > > > > Interestingly I'm at the same stage - doctor called > > > > > > today > > > > > > > > > with Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 And I gave u my response based on 40 + ur experience. At the way u can look it up yourself as you do not believe my assessment. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Aha - but I am but a recently diagnosed novice to all this - and therein lies the problem. Which is why I've turned up here to this support group. So when I read scary facts like 'your chances of cure are much less than if you have an AVS done' when I'm planning on surgery without going through AVS first, I question the expert about what that's based on. I have in forefront of my mind your experience and assume you know what those stats are (or at least which research has quantified it) as well as the qualitative summary. I will, of course, start searching pub med immediately but isn't the point of this support group to allow non-medics like myself to get in touch with experts for advice rather than having to trawl through the research? Hester > > > > > > > > > > > > > > > > > > > > > > > > Hester, First, everyone has to make this decision for > > > > > > > > > themself. I recently explained on this site how I made my > > > > > > decision. > > > > > > > > > I even provided some of the sites I researched to come to my > > > > > > > > > conclusion. Rather than ask you to trust me, I suggest you visit > > > > > > > > > this site: > > > > > > > > > > > > http://www.endocrinesurgery.org/patient_education/adrenal/hyperaldosteronism_diagnosis.shtml > > > > > > > > > (it is easiest to go to page 2) > > > > > > > > > > > > > > > > > > > > > > > > Marie, you might do a quick review, Remember THE 40 YEAR > > > > > > OLD > > > > > > > > > TEST? I believe somebody was over 40! (I draw the conclision > > > > > > that > > > > > > > > > "us old farts" like to grow non-functioning adnomas just keep > > > > > > the > > > > > > > > > doctors employed! ;>) > > > > > > > > > > > > > > > > > > > > > > > > Good Luck, Keep us posted, we care > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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