Guest guest Posted March 2, 2011 Report Share Posted March 2, 2011 No a low sodium intake (diet) is much better to test for PA but most dont do it because it is so hard to do. (please give us the ENa and EK in the 24 hr urine that was collected. if renin is low and aldo high on a low sodiium intake that is a better test for PA than when on a high sodium intake. You do not need to do a saline or salt loading test but need to know what the urine data was.The lab testing you should have normal valued depending on Na intake. If not they have not been doing much testing.CE Grim MDDr Grim, could the fact that I've been eating low sodium throughout the diagnostic process be causing a false positive for PA?My doctor didn't put me on a high sodium diet prior to testing for several reasons, mainly because I knew I would be so sick that I couldn't work. When I take in too much salt, I get severe headaches and nausea. Will post lab results when I have them. Spiro is not an option for me, and diet alone isn't enough - my unmedicated BP averages about 145/93 these days. I haven't tried Inspra yet but would really prefer to explore any alternatives to taking pills the rest of my life - I'm only 45 and plan on being around a good long time I tend to be really sensitive to medications and find more often than not, the side effects make me feel worse than the problems they are treating.- 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > > 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 2, 2011 Report Share Posted March 2, 2011 He should be experienced but better to get the one with the best record other than the head of the dept-they may be the same tho.Thank you Dr. Grim, if you do run across that name please let me know. My doctor is hoping to arrange the AVS with the head of interventional radiology at UCLA, but I'd be interested in hearing any other recommendations also.- 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 meds currently except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet> > >> > Dr. Grim may know someone. Just be sure he/she has done many, many > > AVS procedures and find out the success rate. I would never have an > > adrenal removed without AVS first.> >> >> >> > Val> >> >> >> > From: hyperaldosteronism [mailto:hyperaldosteronism > > ] On Behalf Of msmith_1928> >> >> > 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 2, 2011 Report Share Posted March 2, 2011 Dr Hseuh is not longer there. CE Grim MDOn Mar 2, 2011, at 11:06 AM, Francis Bill SUSPECTED PA wrote:From one of your posting in 2003. There should be someone at UCLA who does the lap surgery. The Dr. To see there is Dr. Willa Hseuh who is the chair or Endocrin and HTN. Tell her I referred you-I know her well. > > >> > Dr. Grim may know someone. Just be sure he/she has done many, many > > AVS procedures and find out the success rate. I would never have an > > adrenal removed without AVS first.> >> >> >> > Val> >> >> >> > From: hyperaldosteronism [mailto:hyperaldosteronism > > ] On Behalf Of msmith_1928> >> >> > 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 2, 2011 Report Share Posted March 2, 2011 Even if you have insurance, ask how much it will cost. I found here that a mammogram is $360 if billed to insurance but $160 if paid at the time of service. What a scam! Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of a Hall Unless you have very good insurance, ask how much it will cost. The price varies wildly at different places. a .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2011 Report Share Posted March 2, 2011 Yours is one approach. The sources you quote do not have the experience we have here or I have in 40+ years of practice.The Surgeons are going to recommend surgery. They have no long term followup in most cases.There is no reason to do repeat scans est with the risk of radiation one gets from a CT.Keep us posted and be certain you update you database on our site so you can help us learn what is the best approach. 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. Hi msmith, I'm guessing you may have seen my post where I referenced I was proceeding with my laparoscopic adrenalectomy, "no AVS, no salt loading, no B.S."! Let me extrapolate and explain my position.First, one of my unexplained issues is a pain that radiates from my right flank area, read kidney, to my right testicle. I have been telling doctors about this for more than 6 years and when they told me they were going to look for a tumor in one of my Adrenal glands I suggested they only needed to look at the rt. one! That's where it is, a 12 x 13 mm adenoma! I`m not necessarily saying the tumor itself is causing the pain but I think it is a direct cause of the pain so I want it gone. If my theory is right, in addition to BP drugs I can get off the narcotic that I'm on for the pain. (I haven't been able to confirm that suspicion but was encouraged when I found the Cortisol in Cushing`s disease could cause a similar pain.) When asked about that condition on this website I got the response that, "We have never surveyed that particular point" and I have since heard from a couple of people who had similar pains. Why did I choose to proceed directly to the adrenalectomy instead of treating with meds? I was watching a show on TV the other night and they had a situation they called "Suicide by Cop" where the individual forced the cop to shoot him to commit suicide. Looking at all the meds. I've been taking and their side effects, I wonder if I have not been "Committing Suicide by Rx"! :>) On a serious note, Spironolactone would probably be a good option if I wanted to go the medicine route but quite honestly I don't like some of the side effects. (I realize there are alternatives if I don't want to get too chesty but with my mind quite well made up I didn't bother to pursue.) Spiro was how my Nephrologists identified my disease. He put me on a 25 mg dose twice a day and it has done wonders. (I've so far gotten off 3 of 7 BP meds and Potassium Supp. and my BP has been: 100/48, 114/59, 103/52 and 95/58 so far this week. Just waiting for Dr. to call and tell me which is the next one I should ditch!) I don't have any interest in undoing that plus loosing 4-6 weeks while Spiro clears my system just so we could risk ruining my good Adrenal gland just so we could run a test that was going to have no bearing on my decision! Some people, including a well known Doctor, say meds are the way to go but I don't know if it cures all the symptoms or only the BP problems. There are also reputable people and organizations that say removal is the way to go and suggest steps like AVS are only necessary if you haven't identified a tumor some other way.Some places I researched so you can look yourself if you care to:American Association of Endocrine Surgeons - They have very good 2 page explanation including a flow chart of the process, my primary care physician will get a copy! (They actually skip the AVS if you are under 40, I just lied about my age and justified it because I was under 40 when it started, it just took them 35 years to find it!)THE HORMONE FOUNDATION, "When a tumor is the cause medication and lifestyle changes can be used to treat PA. However, surgery is usually recommended."Center for Pancreatic and Biliary Diseases, University of Southern California, Department of Surgery, "Surgical removal of the adrenal gland where the tumor is located is the treatment of choice."NATIONAL ADRENAL DISEASE FOUNDTION (NADF) Looks at Aldosterone, Cortisol and Androgens or Adrenaline in the same document, "and if they are non-functioning follow up with CT Imagining every 6 to 12 months. If they grow it should be removed because there is a potential it will become malignant."I considered the impact of postponing and decided there could be a good possibility that if I wait too long my health might decline to a point where an operation might not be feasible in a few years. (I'm not too optimistic after this last year when I added COPD with full time oxygen and Diabetes Type II to my list of aliments! Add to that the fact that I am Morbidly Obese and I think God may have been "showing me the way" when he led me to a surgeon who lists Adrenal and Bariatric surgery among his specialties. (He said a BMI of 52 didn't scare him a bit!) He didn't hesitate at all to recommend the surgery once he saw my ct-scans and lab reports. He said he didn't have any need to study it further.I also noted there were quite a few people who originally opted to treat with medication and then opted to proceed with the surgery at a later date. The only reason I could see to wait was if I decided to die before I decided I needed to operate - THAT IS NOT AN OPTION!The sites/organizations I mentioned are quite easy to find with a web search. If you have trouble, let me know and I'll list the exact address.If you get to the point of looking into having your Adrenal Gland removed Laparoscopically there is an excellent document published by "the Society of American Gastrointestinal and Endoscopic Surgeons (SAGES)".Check it out at: www.sages.org/publication/id/PI14This is rather "long winded" but hopefully you found it worth while and maybe a little thought provoking if you made it this far. Good Luck in all your travels!>> 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 3, 2011 Report Share Posted March 3, 2011 , It's your body and your life, you can decide what you want to do. But go in with your eyes wide open as to what your future might bring afterward. One AVS study showed that 50% of 52 patients studied would have been inappropriately managed based on CT scan findings alone. Other studies indicate that roughly half the people who undergo adrenalectomy will redevelop PA in the future. Our survey in this group of 55 people with PA shows that of the 9 people who opted for adrenalectomy, 6 have had at least some symptoms reccur since surgery. Good luck with whatever you decide, a Subject: Re: up next, AVSTo: hyperaldosteronism Date: Wednesday, March 2, 2011, 11:22 PM Hi msmith, I'm guessing you may have seen my post where I referenced I was proceeding with my laparoscopic adrenalectomy, "no AVS, no salt loading, no B.S."! Let me extrapolate and explain my position.First, one of my unexplained issues is a pain that radiates from my right flank area, read kidney, to my right testicle. I have been telling doctors about this for more than 6 years and when they told me they were going to look for a tumor in one of my Adrenal glands I suggested they only needed to look at the rt. one! That's where it is, a 12 x 13 mm adenoma! I`m not necessarily saying the tumor itself is causing the pain but I think it is a direct cause of the pain so I want it gone. If my theory is right, in addition to BP drugs I can get off the narcotic that I'm on for the pain. (I haven't been able to confirm that suspicion but was encouraged when I found the Cortisol in Cushing`s disease could cause a similar pain.) When asked about that condition on this website I got the response that, "We have never surveyed that particular point" and I have since heard from a couple of people who had similar pains. Why did I choose to proceed directly to the adrenalectomy instead of treating with meds? I was watching a show on TV the other night and they had a situation they called "Suicide by Cop" where the individual forced the cop to shoot him to commit suicide. Looking at all the meds. I've been taking and their side effects, I wonder if I have not been "Committing Suicide by Rx"! :>) On a serious note, Spironolactone would probably be a good option if I wanted to go the medicine route but quite honestly I don't like some of the side effects. (I realize there are alternatives if I don't want to get too chesty but with my mind quite well made up I didn't bother to pursue.) Spiro was how my Nephrologists identified my disease. He put me on a 25 mg dose twice a day and it has done wonders. (I've so far gotten off 3 of 7 BP meds and Potassium Supp. and my BP has been: 100/48, 114/59, 103/52 and 95/58 so far this week. Just waiting for Dr. to call and tell me which is the next one I should ditch!) I don't have any interest in undoing that plus loosing 4-6 weeks while Spiro clears my system just so we could risk ruining my good Adrenal gland just so we could run a test that was going to have no bearing on my decision! Some people, including a well known Doctor, say meds are the way to go but I don't know if it cures all the symptoms or only the BP problems. There are also reputable people and organizations that say removal is the way to go and suggest steps like AVS are only necessary if you haven't identified a tumor some other way.Some places I researched so you can look yourself if you care to:American Association of Endocrine Surgeons - They have very good 2 page explanation including a flow chart of the process, my primary care physician will get a copy! (They actually skip the AVS if you are under 40, I just lied about my age and justified it because I was under 40 when it started, it just took them 35 years to find it!)THE HORMONE FOUNDATION, "When a tumor is the cause medication and lifestyle changes can be used to treat PA. However, surgery is usually recommended."Center for Pancreatic and Biliary Diseases, University of Southern California, Department of Surgery, "Surgical removal of the adrenal gland where the tumor is located is the treatment of choice."NATIONAL ADRENAL DISEASE FOUNDTION (NADF) Looks at Aldosterone, Cortisol and Androgens or Adrenaline in the same document, "and if they are non-functioning follow up with CT Imagining every 6 to 12 months. If they grow it should be removed because there is a potential it will become malignant."I considered the impact of postponing and decided there could be a good possibility that if I wait too long my health might decline to a point where an operation might not be feasible in a few years. (I'm not too optimistic after this last year when I added COPD with full time oxygen and Diabetes Type II to my list of aliments! Add to that the fact that I am Morbidly Obese and I think God may have been "showing me the way" when he led me to a surgeon who lists Adrenal and Bariatric surgery among his specialties. (He said a BMI of 52 didn't scare him a bit!) He didn't hesitate at all to recommend the surgery once he saw my ct-scans and lab reports. He said he didn't have any need to study it further.I also noted there were quite a few people who originally opted to treat with medication and then opted to proceed with the surgery at a later date. The only reason I could see to wait was if I decided to die before I decided I needed to operate - THAT IS NOT AN OPTION!The sites/organizations I mentioned are quite easy to find with a web search. If you have trouble, let me know and I'll list the exact address.If you get to the point of looking into having your Adrenal Gland removed Laparoscopically there is an excellent document published by "the Society of American Gastrointestinal and Endoscopic Surgeons (SAGES)".Check it out at: www.sages.org/publication/id/PI14This is rather "long winded" but hopefully you found it worth while and maybe a little thought provoking if you made it this far. Good Luck in all your travels!>> 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 3, 2011 Report Share Posted March 3, 2011 : I appreciate your hard work. As I suspect you have learned, Medicine is a difficult mistress. I have been doing the same for 40+ years.So as they say "you pays your money and makes your choice".Dr. Grim, I am really surprised and disappointed that you belittled my sources as "not having 40+ years of practice" and "Surgeons who are going to recommend surgery". I spent a great amount of time and energy researching and verifying my information (I didn't have $500!) It does a disservice to your 500+ members who may want to investigate the whole picture.You don't need to keep repeating your intro, at least as far as I'm concerned, I've seen it many times!Just to make sure nobody misunderstands their creditability, here are their credentials taken directly from their respective web sites:About AAES The American Association of Endocrine Surgeons (AAES) is dedicated to the advancement of the science and art of endocrine surgery. Our members have clinical expertise in and research interests that focus on endocrine surgical diseases. They are certified by either the American Board of Surgery of the United States, the Royal College of Surgeons of Canada or the equivalent governing boards in Mexico and South America. Our membership has recently expanded to include international leaders in endocrine surgery and allied specialists that have demonstrated a similar focus of practice. The AAES is committed to providing surgical expertise in diseases of the thyroid, parathyroid, adrenal glands as well as in neuroendocrine tumors of the pancreas and GI tract. Our goal is to discover and promote the best treatments for endocrine disease to help improve our patients' lives.CEG: surgeons cut. They rarely do long term followup.THE HORMONE FOUNDATION is the public education affiliate of The Endocrine Society according to their website.Vision for The Endocrine SocietyThe Endocrine Society will be the leading organization for scientists and physicians involved in the study of hormones and metabolism, molecular, cellular and systems communication and related fields. Acknowledged as the foremost authority for scientific and clinical leadership and innovation, the Society will continue to pioneer basic science and discovery and clinical care that lead to enhanced treatment and cures for endocrine diseases. The Society's unique strength reflects a synergy among its diverse membership of basic researchers, clinical investigators, and physicians in practice. As a leader in fostering this synergy internationally, Society programs and services will emphasize the integration of the field and the importance of basic research and its translation to patient care. The Society will be a leader in shaping policy affecting research and patient care, closely coordinating with domestic and international partners. The Society will enhance its efforts both to advocate for increased funding for biomedical research and to ensure that the work of its clinicians is appropriately valued by health care systems. The Society will also be widely recognized for its excellent patient and public information programs through the Hormone Foundation.The Endocrine Society will solidify and expand its reputation for excellent journals, meetings, and educational programs. Students, trainees, and young professionals will be attracted to the Society by its vibrant programs which will provide opportunities to work at the cutting edge of research and practice.Our MissionThe National Adrenal Diseases Foundation is a 501©(3) non-profit organization dedicated to providing support, information and education to individuals having 's disease as well as other diseases of the adrenal glands. Individuals suffering from 's disease are often misdiagnosed or go for long painful periods without proper diagnosis. Symptoms of this disease frequently and most dramatically include a darkening of the skin that may look like an inappropriate tan on a person who feels quite ill with the vague symptoms of worsening fatigue, loss of appetite and slow, gradual weight loss. Blood pressure is low and falls further upon standing, producing lightheadedness, sometimes to the point of fainting, and nausea, often to the point of vomiting. Because of salt loss, a craving for salt in any shape or form is common.Individuals with 's disease or another disease of the adrenal glands can expect to live a normal life span as long as the proper medical care is received and the correct dose of replacement medication is taken every day. NADF is committed to bringing information regarding these rare diseases into the public's awareness to facilitate early diagnosis and treatment. NADF sponsors support groups across the country allowing for an exchange of ideas and feelings by individuals who share a common illness. NADF members receive quarterly newsletters, educational materials, and access to a library of related information. NADF does not receive funding from the U.S. Government.NADF is committed to bringing information regarding these rare diseases into the public's awareness to facilitate early diagnosis and treatment.NADF sponsors support groups across the country allowing for an exchange of ideas and feelings by individuals who share a common illness.NADF members receive quarterly newsletters, educational materials, and access to a library of related information.Individuals with 's disease or another disease of the adrenal glands can expect to live a crisis-free life as long as the proper medical care is received and the correct dose of replacement medication is taken every day.The newly diagnosed can look to NADF for information from our"Facts You Need To Know" and other pamphlets.Anyone wishing to correspond with a fellow addisonian or find understanding through participation in a support group need look no further than NADF.CEG: too bad they don't educate Endocrinologists about Primary Aldosteronism. Many of our Conn's stories document long term mismanagement of PA. Several Endos stating that they have never seen a case. They should say they have never Recognized a case. They have likely seen many just missed them. Most say they have only see one or two. We have 500+ here.Recommend you get and read Clinical Epidemiology by Haynes and Sackett and work with a pencil and paper thru it so you better understand risk and benefit analysis in your decision making. Only you can do this as there are costs to decisions (utility) that only you can decide on.Clinical Epidemiology by I forget now but we have mentioned it several times in our discussions.Let us know if we an help.> > >> > > 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 3, 2011 Report Share Posted March 3, 2011 : I appreciate your hard work. As I suspect you have learned, Medicine is a difficult mistress. I have been doing the same for 40+ years.So as they say "you pays your money and makes your choice".Dr. Grim, I am really surprised and disappointed that you belittled my sources as "not having 40+ years of practice" and "Surgeons who are going to recommend surgery". I spent a great amount of time and energy researching and verifying my information (I didn't have $500!) It does a disservice to your 500+ members who may want to investigate the whole picture.You don't need to keep repeating your intro, at least as far as I'm concerned, I've seen it many times!Just to make sure nobody misunderstands their creditability, here are their credentials taken directly from their respective web sites:About AAES The American Association of Endocrine Surgeons (AAES) is dedicated to the advancement of the science and art of endocrine surgery. Our members have clinical expertise in and research interests that focus on endocrine surgical diseases. They are certified by either the American Board of Surgery of the United States, the Royal College of Surgeons of Canada or the equivalent governing boards in Mexico and South America. Our membership has recently expanded to include international leaders in endocrine surgery and allied specialists that have demonstrated a similar focus of practice. The AAES is committed to providing surgical expertise in diseases of the thyroid, parathyroid, adrenal glands as well as in neuroendocrine tumors of the pancreas and GI tract. Our goal is to discover and promote the best treatments for endocrine disease to help improve our patients' lives.CEG: surgeons cut. They rarely do long term followup.THE HORMONE FOUNDATION is the public education affiliate of The Endocrine Society according to their website.Vision for The Endocrine SocietyThe Endocrine Society will be the leading organization for scientists and physicians involved in the study of hormones and metabolism, molecular, cellular and systems communication and related fields. Acknowledged as the foremost authority for scientific and clinical leadership and innovation, the Society will continue to pioneer basic science and discovery and clinical care that lead to enhanced treatment and cures for endocrine diseases. The Society's unique strength reflects a synergy among its diverse membership of basic researchers, clinical investigators, and physicians in practice. As a leader in fostering this synergy internationally, Society programs and services will emphasize the integration of the field and the importance of basic research and its translation to patient care. The Society will be a leader in shaping policy affecting research and patient care, closely coordinating with domestic and international partners. The Society will enhance its efforts both to advocate for increased funding for biomedical research and to ensure that the work of its clinicians is appropriately valued by health care systems. The Society will also be widely recognized for its excellent patient and public information programs through the Hormone Foundation.The Endocrine Society will solidify and expand its reputation for excellent journals, meetings, and educational programs. Students, trainees, and young professionals will be attracted to the Society by its vibrant programs which will provide opportunities to work at the cutting edge of research and practice.Our MissionThe National Adrenal Diseases Foundation is a 501©(3) non-profit organization dedicated to providing support, information and education to individuals having 's disease as well as other diseases of the adrenal glands. Individuals suffering from 's disease are often misdiagnosed or go for long painful periods without proper diagnosis. Symptoms of this disease frequently and most dramatically include a darkening of the skin that may look like an inappropriate tan on a person who feels quite ill with the vague symptoms of worsening fatigue, loss of appetite and slow, gradual weight loss. Blood pressure is low and falls further upon standing, producing lightheadedness, sometimes to the point of fainting, and nausea, often to the point of vomiting. Because of salt loss, a craving for salt in any shape or form is common.Individuals with 's disease or another disease of the adrenal glands can expect to live a normal life span as long as the proper medical care is received and the correct dose of replacement medication is taken every day. NADF is committed to bringing information regarding these rare diseases into the public's awareness to facilitate early diagnosis and treatment. NADF sponsors support groups across the country allowing for an exchange of ideas and feelings by individuals who share a common illness. NADF members receive quarterly newsletters, educational materials, and access to a library of related information. NADF does not receive funding from the U.S. Government.NADF is committed to bringing information regarding these rare diseases into the public's awareness to facilitate early diagnosis and treatment.NADF sponsors support groups across the country allowing for an exchange of ideas and feelings by individuals who share a common illness.NADF members receive quarterly newsletters, educational materials, and access to a library of related information.Individuals with 's disease or another disease of the adrenal glands can expect to live a crisis-free life as long as the proper medical care is received and the correct dose of replacement medication is taken every day.The newly diagnosed can look to NADF for information from our"Facts You Need To Know" and other pamphlets.Anyone wishing to correspond with a fellow addisonian or find understanding through participation in a support group need look no further than NADF.CEG: too bad they don't educate Endocrinologists about Primary Aldosteronism. Many of our Conn's stories document long term mismanagement of PA. Several Endos stating that they have never seen a case. They should say they have never Recognized a case. They have likely seen many just missed them. Most say they have only see one or two. We have 500+ here.Recommend you get and read Clinical Epidemiology by Haynes and Sackett and work with a pencil and paper thru it so you better understand risk and benefit analysis in your decision making. Only you can do this as there are costs to decisions (utility) that only you can decide on.Clinical Epidemiology by I forget now but we have mentioned it several times in our discussions.Let us know if we an help.> > >> > > 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 3, 2011 Report Share Posted March 3, 2011 There is a database in Europe Switzerland as I recall that have been following non surgical over 400 for 20 + years and had seen no malignant transformation. So again it is a risk to the hundreds of thousands of those who have a nodule to get a CT every year lets say. As I recall the radiation from a CT is about 100 Chest x-rays but may be old data. I recall you get about 1 chest x ray of radiation each time you fly high-as in an airplane.CE Grim MDYou mentioned: "There is no reason to do repeat scans est with the risk of radiation". I presume that was in the reference to repeating the CT imaging every 6 to 12 months in the NADF recomendation if you chose to leave it. If that is the case, how do you monitor them for growth? Their contention is that if they get very large, "there is a significant potential that it will become milignant". > > >> > > 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 3, 2011 Report Share Posted March 3, 2011 I just worked 4 months at a VA clinic and picked up 2 PAs that had been missed for some time.1 had recognized bilat disease but they did not interpret the renin and aldos correctly and the other I picked up the adrenal bumps when I was reviewing an old CT. They had been missed. Both now nomotensive and edema free only on spiro.Lots of folks have pains on one side or the other. It seems we have some here who have had their pain go away after surgery but that may be just because the nerves to the area were cut.Most have more pains than they had before over the incision area but that was mostly from the bigger older surgeries that had to be done.Only time will tell I think in your case and in each individual case.CE Grim MDNo date yet because I need to know exactly how $$$'s work. (My wallet is less impacted if the VA will do a referral.) The other angle I can persue is I have private ins. with Medicare Part A as secondary. I also want to contact NIH to understand exactly what they are studying. (There is one that lists at least 7 conditions. Being fat with Conn's and a Diabetic, I can address 3 of the 7!) Probably my biggest concern might be getting home to Vermont after the surgery.Regarding your direction, it looks great as far as I'm concermed If you want the AVS to be as certain as possible - go for it! I might feel differently if I wasn't considering my pain issue. Dr. Grim, do you want to take a stab at that?During my research I started to wonder if maybe some specialists were beginning to stray away from "the Gold Standard" (AVS) and rely more on CT-scans as their quality improves. I get the feeling that and experience may be where the 40-yr old threshold came in. (Ofcourse money and the Government and insurance companies probably have something to say about 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 3, 2011 Report Share Posted March 3, 2011 When I click on this it says document not found?CE Grim MDYou need to read this. http://f1.grp.yahoofs.com/v1/0JBvTdREU_eCt0nGgFjqcfqVjkKyKncQ6M4-FSOBSBz72HyiO3CQexOnilW36TPBswjU7LsAdHZu76gRy0RuG5hU0DjdyEBXlw/Endocrine_Society_PA_Guidelines.pdfSprio will work in some that don't have PA. You could have a kidney problem making you BP high. It you have have done enough research you will see that 80% of adrenal gland tumors do nothing. This means that only 20% need treatment. How can Dr tell just by CT scan that your tumor is one of the 20% that is causing you problems. Only way to to find out is by proper testing by the Endocrine Society PA Guidelines.> > > >> > > > 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 3, 2011 Report Share Posted March 3, 2011 I worked at the MKE VA 10 years ago on the Geriatrics and Hospice unit and said this is where I want to go when I am ready. I was also very impressed with the VA health care system where I just worked for 4 months was a CBOC.Minimal paper work. Few worries about testing costs. One problem was that for many tests vets have to drive 225 miles one way to the main VA.30-45 minutes with every pt. and excellent EMR system.Could not do renins and a number of other tests because they had to be frozen to ship to main office 225 miles. and the transport system could not do this.One complaint I had from many (average age 70) was that they only give 2 ED pills a month.Still they had missed these two flagrant cases of PA for 8 years in one and 5 in another. I suspected the Dx within 2 minutes of seeing them and then in 5 min of reviewing the EMRs. One even had Dx of non-functioning bilat adrenal adenomas. Now only on spiro and DASH where before was on 6 drugs and swollen like a fat pig. BTW I think they have a EMR that should be adopted by all of US medical care but too many vested interests for this to happen I suspect.You make this statement based on what? I am quite aware how the VA operates and I have found out one thing, You never know if you don't ask! Does the VA have sleep studies available "in Boston"? I had my last two, a month apart because I failed the first, done at DHMC and paid for by the VA!Regarding my experiences with VA services:My Dad, a disabled Vet, received his care at the VA in WRJ for over 50 yrs. In addition to "normal" care and some "minor" operations he gave them in excess of 5,000 volunteer hours! That was the last hospital he was in before being moved to full time care for Alzhimer.My Mom, a disabled Vet, recieved all her care, except for when she was having 6 babies, at the VA in WRJ for over 65 yrs. She actually passed away, in my arms, in their Hospitaitly Room (an excellent facility I might add.My Brother, just a "normal" vet who did his 2yrs. at the Pentagon, had his medical service at the VA in WRJ. for over 20 yrs. They did his Kidney Transplant. He actually Passed away at DHMC after the VA transfered him because they don't do dialisis (he was in intensive care with a ruptured colon and his "rented kidneys" were starting to fail after 13 yrs).Myself, just a "normal" 4-yr vet with SEA service, have had my medical service provided by the VA in WRJ since 2005. With the exception of the sleep studies, everything has been done at tne VA in WRJ. (They did tell me I would have to go to Jamica Plains for my eye surgey when it came time! Oh yes, that reminds me - my brother had his eye surgery in the VA in Albany.I provided that introduction so that you might feel comfortable that I had some idea how "the system" works! I had my Primary Care Doctor at the VA, Dr. Webster, set up my appointment with the doctor at DHMC because we (read both of us) were not comfortable with the level of experience and answers we were getting "within the systems". I figured I could have "drilled down" and eventially got what I needed but didn't want to wait. I can always look at the DHMC visit as a "second opinion". By the way, it cost me a $40 co-pay and it costs me a $50 co-pay at the VA, even if I see a resident - GO FIGURE!(By the way, Dr. Laycock said he got a lot of the laproscopic surgeries fron the VA because they didn't have the experience nor facilities "over there".)KEEP THOSE CARDS AND LETTERS COMING IN - ANSWERING THEM BEATS GOING OUT IN THE COLD! For you people in warm country, it's 12 degrees at noon today with a "Bluebird sky"! We set an all time record for snow here in Vermont for Feb. with over 44 inches! ;>)> > > > >> > > > > 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 3, 2011 Report Share Posted March 3, 2011 It is never only meds. Always meds And DASH. NO diet salt excess no Aldo problems. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Hi msmith, I'm guessing you may have seen my post where I referenced I was proceeding with my laparoscopic adrenalectomy, "no AVS, no salt loading, no B.S."! Let me extrapolate and explain my position. First, one of my unexplained issues is a pain that radiates from my right flank area, read kidney, to my right testicle. I have been telling doctors about this for more than 6 years and when they told me they were going to look for a tumor in one of my Adrenal glands I suggested they only needed to look at the rt. one! That's where it is, a 12 x 13 mm adenoma! I`m not necessarily saying the tumor itself is causing the pain but I think it is a direct cause of the pain so I want it gone. If my theory is right, in addition to BP drugs I can get off the narcotic that I'm on for the pain. (I haven't been able to confirm that suspicion but was encouraged when I found the Cortisol in Cushing`s disease could cause a similar pain.) When asked about that condition on this website I got the response that, "We have never surveyed that particular point" and I have since heard from a couple of people who had similar pains. Why did I choose to proceed directly to the adrenalectomy instead of treating with meds? I was watching a show on TV the other night and they had a situation they called "Suicide by Cop" where the individual forced the cop to shoot him to commit suicide. Looking at all the meds. I've been taking and their side effects, I wonder if I have not been "Committing Suicide by Rx"! :>) On a serious note, Spironolactone would probably be a good option if I wanted to go the medicine route but quite honestly I don't like some of the side effects. (I realize there are alternatives if I don't want to get too chesty but with my mind quite well made up I didn't bother to pursue.) Spiro was how my Nephrologists identified my disease. He put me on a 25 mg dose twice a day and it has done wonders. (I've so far gotten off 3 of 7 BP meds and Potassium Supp. and my BP has been: 100/48, 114/59, 103/52 and 95/58 so far this week. Just waiting for Dr. to call and tell me which is the next one I should ditch!) I don't have any interest in undoing that plus loosing 4-6 weeks while Spiro clears my system just so we could risk ruining my good Adrenal gland just so we could run a test that was going to have no bearing on my decision! Some people, including a well known Doctor, say meds are the way to go but I don't know if it cures all the symptoms or only the BP problems. There are also reputable people and organizations that say removal is the way to go and suggest steps like AVS are only necessary if you haven't identified a tumor some other way. Some places I researched so you can look yourself if you care to: American Association of Endocrine Surgeons - They have very good 2 page explanation including a flow chart of the process, my primary care physician will get a copy! (They actually skip the AVS if you are under 40, I just lied about my age and justified it because I was under 40 when it started, it just took them 35 years to find it!) THE HORMONE FOUNDATION, "When a tumor is the cause medication and lifestyle changes can be used to treat PA. However, surgery is usually recommended." Center for Pancreatic and Biliary Diseases, University of Southern California, Department of Surgery, "Surgical removal of the adrenal gland where the tumor is located is the treatment of choice." NATIONAL ADRENAL DISEASE FOUNDTION (NADF) Looks at Aldosterone, Cortisol and Androgens or Adrenaline in the same document, "and if they are non-functioning follow up with CT Imagining every 6 to 12 months. If they grow it should be removed because there is a potential it will become malignant." I considered the impact of postponing and decided there could be a good possibility that if I wait too long my health might decline to a point where an operation might not be feasible in a few years. (I'm not too optimistic after this last year when I added COPD with full time oxygen and Diabetes Type II to my list of aliments! Add to that the fact that I am Morbidly Obese and I think God may have been "showing me the way" when he led me to a surgeon who lists Adrenal and Bariatric surgery among his specialties. (He said a BMI of 52 didn't scare him a bit!) He didn't hesitate at all to recommend the surgery once he saw my ct-scans and lab reports. He said he didn't have any need to study it further. I also noted there were quite a few people who originally opted to treat with medication and then opted to proceed with the surgery at a later date. The only reason I could see to wait was if I decided to die before I decided I needed to operate - THAT IS NOT AN OPTION! The sites/organizations I mentioned are quite easy to find with a web search. If you have trouble, let me know and I'll list the exact address. If you get to the point of looking into having your Adrenal Gland removed Laparoscopically there is an excellent document published by "the Society of American Gastrointestinal and Endoscopic Surgeons (SAGES)". Check it out at: www.sages.org/publication/id/PI14 This is rather "long winded" but hopefully you found it worth while and maybe a little thought provoking if you made it this far. Good Luck in all your travels! > > 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 3, 2011 Report Share Posted March 3, 2011 OElectronic Medical record Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension EMR stands for what? I didn't recognize that one but I have witnessed quite a bit that I think is on the forefront. For instance they have just opened a feature where the patient can access labs on line! Won't it be nice if you as a consulting physician had access to all lab results and commments from visits by attending Ph going back (with security and my approval of course)! You mentioned 30-45 mins per patient - Dr. Webster got way behind the day I introduced her to PA (and provided her your position paper). After 1hr and 20mins she asked if there was anything else, she was running behind! I told her she hadn't listened to my heart/lungs yet! (I wasn't concerened, I had been with Pulmanary Drs. 2-days prior!) I think that speaks well of her realizing she was being educated on something that would be very oimportant in her future practice. I'm confident she will "spread the word" around WRJ! BTW, Don't be in too much of a hurry to take advantage of your reservation in that Ger. and Hospice unit- WE STILL NEED YOU! > > > > > > > > > > > > > > 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 3, 2011 Report Share Posted March 3, 2011 Yahoo links to Group photos and files are temporary and transient. They expire in short time and are not useful as permanent links to send to anyone. The only reliable links are to Photo main folder and Files main folder and then user should search for a file there. WHY USEFUL FEATURE IS DISABLED? One extremely useful feature is Group's folder called ATTACHMENTS + enabling attachments instead of being distributed, stay in attachment folder. When distributed, important documents no longer are available for new members or even old members. When archived on site, they are always available for research and reference. This feature is much more useful and user friendly than saving files in Files folder. Max. | |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 | | | |> |> Francis, I had a problem when I tried to access your hyperlink, this |> is what I got: Oops! This link appears to be broken |> |> Tell me where you were trying to send me, I'm really interested in |> what you have found. |> |> I have observations/commets re. your coments but will reserve them |> until see the whole picture. |> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 No good excuse. Give me password to fix it then change password. Max. | | |WHY USEFUL FEATURE IS DISABLED? Because Dr grim needs help to |turn it on. He has tried to turn it on but it doesn't seem to work. | | |> |> Yahoo links to Group photos and files are temporary and transient. |> They expire in short time and are not useful as permanent links to |> send to anyone. The only reliable links are to Photo main folder and |> Files main folder and then user should search for a file there. |> |> WHY USEFUL FEATURE IS DISABLED? One extremely useful feature is |> Group's folder called ATTACHMENTS + enabling attachments instead of |> being distributed, stay in attachment folder. When distributed, |> important documents no longer are available for new members or even |> old members. When archived on site, they are always available for |> research and reference. This feature is much more useful and user |> friendly than saving files in Files folder. |> |> Max. |> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 How do I put them in a specific folder?CEYahoo links to Group photos and files are temporary and transient. Theyexpire in short time and are not useful as permanent links to send toanyone. The only reliable links are to Photo main folder and Files mainfolder and then user should search for a file there.WHY USEFUL FEATURE IS DISABLED? One extremely useful feature is Group'sfolder called ATTACHMENTS + enabling attachments instead of beingdistributed, stay in attachment folder. When distributed, importantdocuments no longer are available for new members or even old members. Whenarchived on site, they are always available for research and reference. Thisfeature is much more useful and user friendly than saving files in Filesfolder.Max.||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 ||||>|> Francis, I had a problem when I tried to access your hyperlink, this |> is what I got: Oops! This link appears to be broken|> |> Tell me where you were trying to send me, I'm really interested in |> what you have found.|> |> I have observations/commets re. your coments but will reserve them |> until see the whole picture.|> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Prob not a bad way to go assuming they have long term followup experience say 5, 10 20 years on cure and how many are back on meds by each time period. If you see our results and most other published results the 97% quote is way out of line. Well maybe not in Swiss as they are so precise.Do we have your detailed story and numbers so we can help to the Max. Have you completed our data base yet? See item 8 below. If not please do so as you are part of the cure.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. 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. Interestingly I'm at the same stage - doctor called today with a positive diagnosis of primary aldosteronism. Given my age (under 40 - just), general health (great), blood test results (clear cut) and an MRI that revealed a 21mm adenoma on one adrenal gland, she's 97% sure (no idea where that figure came from - will meet in person next week to find out more) that it's an APA. So is recommending skipping the AVS (which would only give a 99% certainty at best) and going straight to the adrenalectomy. I'm tending to agree - and certainly have no wish to be on drugs for life so am naturally leaning towards surgery vs. Spiro (although I'll be going on that for the short term).There have been limited studies here (I'm in Zürich, Switzerland) that surgery in the case of APA tends to be very effective. When I was in the earlier stages of diagnosis, I posted on this board to try and understand the pros and cons of surgery vs. drugs and still haven't seen a clear balance of argument so I'm sure there are points I've missed. Now I'm just trusting the judgement of my local experts.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 3, 2011 Report Share Posted March 3, 2011 Thanks Marie. Good on Ya!.Good to hear this confirmation of my approach.CE Grim MD I had my left adrenal removed in December 2010....I had a CT scan that showed a Mass on my right adrenal but my endo said I need the AVS to make sure that is the right one to remove.........LOW AN ..BEHOLD it was not the right adrenal that was causing my problems it was the left one......Thanks to the AVS which I had problems with but all worked out, I would have had the wrong one removed. and probably would have to take meds for the rest of my life..........Just though you would like something else to think about before you have surgery......which could be the wrong adrenal removed......or maybe the right one.........you just never know........and get someone that has alot of knowledge with AVS and with experience....Just my opinion.........Marie Re: up next, AVS Interestingly I'm at the same stage - doctor called today with a positive diagnosis of primary aldosteronism. Given my age (under 40 - just), general health (great), blood test results (clear cut) and an MRI that revealed a 21mm adenoma on one adrenal gland, she's 97% sure (no idea where that figure came from - will meet in person next week to find out more) that it's an APA. So is recommending skipping the AVS (which would only give a 99% certainty at best) and going straight to the adrenalectomy. I'm tending to agree - and certainly have no wish to be on drugs for life so am naturally leaning towards surgery vs. Spiro (although I'll be going on that for the short term).There have been limited studies here (I'm in Zürich, Switzerland) that surgery in the case of APA tends to be very effective. When I was in the earlier stages of diagnosis, I posted on this board to try and understand the pros and cons of surgery vs. drugs and still haven't seen a clear balance of argument so I'm sure there are points I've missed. Now I'm just trusting the judgement of my local experts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Yes one problem with our data base info. I suggest we require completing our data base soon after registration but don't know how to do this.CE Grim MDI'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 Ofmsmith_1928Hi 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 3, 2011 Report Share Posted March 3, 2011 And see the file I just uploaded.Adrenal bumps can be just lipomas (fat tumors) as I learned in 1969 in my time in Dr. Conn's lab.Hester, with all due respect, your doctor cannot be 97% sure that your visible adenoma is the one causing problems. Bad adenomas can be the size of a grain of sand (per Dr. Grim) and not visible on CT. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Ofhesterfenwick Interestingly I'm at the same stage - doctor called today with a positive diagnosis of primary aldosteronism. Given my age (under 40 - just), general health (great), blood test results (clear cut) and an MRI that revealed a 21mm adenoma on one adrenal gland, she's 97% sure (no idea where that figure came from - will meet in person next week to find out more) that it's an APA. So is recommending skipping the AVS (which would only give a 99% certainty at best) and going straight to the adrenalectomy. I'm tending to agree - and certainly have no wish to be on drugs for life so am naturally leaning towards surgery vs. Spiro (although I'll be going on that for the short term).There have been limited studies here (I'm in Zürich, Switzerland) that surgery in the case of APA tends to be very effective. When I was in the earlier stages of diagnosis, I posted on this board to try and understand the pros and cons of surgery vs. drugs and still haven't seen a clear balance of argument so I'm sure there are points I've missed. Now I'm just trusting the judgement of my local experts.Hester Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 As attachments are added to the archives on the Group site, moderators can delete, move them to specific folders if they wish to be organized more. However, they can stay in one folder and be accessed and copied by users. Yahoo Groups have many other features that I recommend be enabled to maximum so that the Group be utilized to max...the same way Dr. Grim recommends DASH to max! Max. How do I put them in a specific folder? CE Yahoo links to Group photos and files are temporary and transient. Theyexpire in short time and are not useful as permanent links to send toanyone. The only reliable links are to Photo main folder and Files mainfolder and then user should search for a file there.WHY USEFUL FEATURE IS DISABLED? One extremely useful feature is Group'sfolder called ATTACHMENTS + enabling attachments instead of beingdistributed, stay in attachment folder. When distributed, importantdocuments no longer are available for new members or even old members. Whenarchived on site, they are always available for research and reference. Thisfeature is much more useful and user friendly than saving files in Filesfolder.Max. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 They are out-salting their BP meds. This has always been possible since 1904 but folks don't believe it.Let me state this clearly again:Without excess dietary salt intake excess aldo does not cause problems: such as HTN or low K.Do you read me?You do not get HTN if you have hyperaldo unless you also eat too much salt. See the Bravo article in our files.CE Grim MD I do see a fair number of patients, more on the NORD site than on this one, who talk about how they've had to increase their meds to extremely high doses over the years, and how they've given up hope.Dr. Grim, would your opinion be that these are the people who are only taking meds and not DASHing?> > > 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.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Hmm. This does not sound like 97% to me. Always do AVS unless you want to end up with both adrenals out.CE Grim MDMarie, THANK YOU for sharing this. This is exactly what my concern is, and why I am opting for the AVS.Could you tell us what problems you had with the AVS?>> > I had my left adrenal removed in December 2010....I had a CT scan that showed a Mass on my right adrenal but my endo said I need the AVS to make sure that is the right one to remove.........LOW AN ..BEHOLD it was not the right adrenal that was causing my problems it was the left one......Thanks to the AVS which I had problems with but all worked out, I would have had the wrong one removed. and probably would have to take meds for the rest of my life..........Just though you would like something else to think about before you have surgery......which could be the wrong adrenal removed......or maybe the right one.........you just never know........and get someone that has alot of knowledge with AVS and with experience....Just my opinion.........> Marie> Re: up next, AVS> > > > Interestingly I'm at the same stage - doctor called today with a positive diagnosis of primary aldosteronism. Given my age (under 40 - just), general health (great), blood test results (clear cut) and an MRI that revealed a 21mm adenoma on one adrenal gland, she's 97% sure (no idea where that figure came from - will meet in person next week to find out more) that it's an APA. So is recommending skipping the AVS (which would only give a 99% certainty at best) and going straight to the adrenalectomy. I'm tending to agree - and certainly have no wish to be on drugs for life so am naturally leaning towards surgery vs. Spiro (although I'll be going on that for the short term).> > There have been limited studies here (I'm in Z�rich, Switzerland) that surgery in the case of APA tends to be very effective. When I was in the earlier stages of diagnosis, I posted on this board to try and understand the pros and cons of surgery vs. drugs and still haven't seen a clear balance of argument so I'm sure there are points I've missed. Now I'm just trusting the judgement of my local experts.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Good I just uploaded an article on adrenal bumps in New Orleans at least. As attachments are added to the archives on the Group site, moderators can delete, move them to specific folders if they wish to be organized more. However, they can stay in one folder and be accessed and copied by users. Yahoo Groups have many other features that I recommend be enabled to maximum so that the Group be utilized to max...the same way Dr. Grim recommends DASH to max! Max.How do I put them in a specific folder?CEYahoo links to Group photos and files are temporary and transient. Theyexpire in short time and are not useful as permanent links to send toanyone. The only reliable links are to Photo main folder and Files mainfolder and then user should search for a file there.WHY USEFUL FEATURE IS DISABLED? One extremely useful feature is Group'sfolder called ATTACHMENTS + enabling attachments instead of beingdistributed, stay in attachment folder. When distributed, importantdocuments no longer are available for new members or even old members. Whenarchived on site, they are always available for research and reference. Thisfeature is much more useful and user friendly than saving files in Filesfolder.Max. Quote Link to comment Share on other sites More sharing options...
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