Guest guest Posted September 16, 2011 Report Share Posted September 16, 2011 Lucy, Thanks for the name. I am definitely going to check them out. I would like to see an Endo who has seen this disease before. I am assuming that your Endo is familiar with this disease? Thanks again, Mike > >> > >> > >> I have an adrenalectomy scheduled for Monday, September 19 in the > >> afternoon. > >> > >> I met with two surgeons, one who has 10 years specialization with > >> endrocrine surgery at the Penn State Hershey Medical Center; the other, > >> who uses burg Hospital, which is five minutes from my house, has > >> 20 years experience with kidney transplants and adrenalectomys. They > >> both do about 20 adrenalectomies a year, and of those about 3 or4 are > >> on people with PA. Both surgeons seemed really good. I decided to go > >> with the surgeon close by because he is part of the same system as my > >> endo, has more experience, is so close and came highly recommended, even > >> from the surgeon at the med center. I cannot tell you how much the > >> questions and answers, experience and knowledge from this forum has > >> helped me with making the decision to go forward with surgery and to > >> chose a surgeon. It has helped me every step of the way. > >> > >> I seriously considered trying spiro per Dr. Grim's recommendation but > >> all my doctors recommended surgery and my K gets so low and my fatigue > >> is so intense. Surgery is the direction I wanted to go since I was Dxed > >> with PA in early June and I don't do well with medication. Like so many > >> of you, I have been wondering why I felt so bad for years. Since I > >> ended up the emergency room in August 2010, and was told that I had low > >> K which seems to go lower on a daily basis, I was determined to get to > >> the bottom of it. I have wanted to share here the PA story I have been > >> able to patch together so far, but I have not had the time or energy to > >> do so. Maybe after the surgery... I definitely want to share my AVS > >> story (and K crash) because it doesn't sound like all IR's check K > >> before an AVS patient is released. > >> > >> I follow all the posts here on my Droid (when it and gmail work) which I > >> will take to the hospital on Monday so I can continue to follow them and > >> possibly add a post at some point after the surgery. My surgeon said > >> I will be in the hospital one or two nights. He usually keeps > >> adrenalectomy patients two nights. > >> > >> msmith, I hope you get the final interpretation on your AVS & are able > >> to schedule surgery soon. > >> > >> Lucy > >> > >> ~ Lucy Sage > >> > >> 58 yr. old female/5'5 " /135 lb/6.7 mm left adrenal mass/AVS > >> 8-22-11 showed lateralization in left adrenal gland > >> > >> Conditions: PA, Hypokalemia, HTN (BP ranges from 118/73 to165/81), > >> migraine, osteoarthritis, spinal stenosis, rhinitis, PND, chronic > >> gastritis, mild neutropenia, hypogammaglobulimenia, skin cancer (all > >> types) & hemorrhage in right retina. > >> > >> Symptoms: fatigue, nausea, tingling, weakness, nocturia, brain fog > >> anxiety & depression. > >> > >> Medications: 175 MEQ Klor-Con TAB EFF, 5 mg Amlodopine, 20 mg > >> Lisiniprol, 30 mg Cymbalta, 81 mg aspirin, 10 mg loratadine, 20 mg > >> ranitidine, 0.1% protopic, 1.04 g fiber caps, 1200 mg calcium w/ > >> magnesium & D, 800 I.U. vitamin D, multivitamin, 1000 mg vitamin C, 1000 > >> mcg Biotin, 1000 mg fish oil. > >> > >> Diet: no sugar, limited gluten (1 serving/week) due to gluten > >> intolerance, high veggie and fruit, limited carbs (2-4 servings/ day) > >> and protein (8-12 oz/day), low fat (3-6 servings/day) no alcohol, > >> limiting salt & no nicotine. Walk dog 2.5 miles/day. > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2011 Report Share Posted September 16, 2011 An Endo who has never seen PA BEFORE is very strange. I am certain she has "seen". What we want to do is to teach her how recognize them. Where in the world did she do her ENDO training?Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Lucy, Thanks for the name. I am definitely going to check them out. I would like to see an Endo who has seen this disease before. I am assuming that your Endo is familiar with this disease? Thanks again, Mike > >> > >> > >> I have an adrenalectomy scheduled for Monday, September 19 in the > >> afternoon. > >> > >> I met with two surgeons, one who has 10 years specialization with > >> endrocrine surgery at the Penn State Hershey Medical Center; the other, > >> who uses burg Hospital, which is five minutes from my house, has > >> 20 years experience with kidney transplants and adrenalectomys. They > >> both do about 20 adrenalectomies a year, and of those about 3 or4 are > >> on people with PA. Both surgeons seemed really good. I decided to go > >> with the surgeon close by because he is part of the same system as my > >> endo, has more experience, is so close and came highly recommended, even > >> from the surgeon at the med center. I cannot tell you how much the > >> questions and answers, experience and knowledge from this forum has > >> helped me with making the decision to go forward with surgery and to > >> chose a surgeon. It has helped me every step of the way. > >> > >> I seriously considered trying spiro per Dr. Grim's recommendation but > >> all my doctors recommended surgery and my K gets so low and my fatigue > >> is so intense. Surgery is the direction I wanted to go since I was Dxed > >> with PA in early June and I don't do well with medication. Like so many > >> of you, I have been wondering why I felt so bad for years. Since I > >> ended up the emergency room in August 2010, and was told that I had low > >> K which seems to go lower on a daily basis, I was determined to get to > >> the bottom of it. I have wanted to share here the PA story I have been > >> able to patch together so far, but I have not had the time or energy to > >> do so. Maybe after the surgery... I definitely want to share my AVS > >> story (and K crash) because it doesn't sound like all IR's check K > >> before an AVS patient is released. > >> > >> I follow all the posts here on my Droid (when it and gmail work) which I > >> will take to the hospital on Monday so I can continue to follow them and > >> possibly add a post at some point after the surgery. My surgeon said > >> I will be in the hospital one or two nights. He usually keeps > >> adrenalectomy patients two nights. > >> > >> msmith, I hope you get the final interpretation on your AVS & are able > >> to schedule surgery soon. > >> > >> Lucy > >> > >> ~ Lucy Sage > >> > >> 58 yr. old female/5'5"/135 lb/6.7 mm left adrenal mass/AVS > >> 8-22-11 showed lateralization in left adrenal gland > >> > >> Conditions: PA, Hypokalemia, HTN (BP ranges from 118/73 to165/81), > >> migraine, osteoarthritis, spinal stenosis, rhinitis, PND, chronic > >> gastritis, mild neutropenia, hypogammaglobulimenia, skin cancer (all > >> types) & hemorrhage in right retina. > >> > >> Symptoms: fatigue, nausea, tingling, weakness, nocturia, brain fog > >> anxiety & depression. > >> > >> Medications: 175 MEQ Klor-Con TAB EFF, 5 mg Amlodopine, 20 mg > >> Lisiniprol, 30 mg Cymbalta, 81 mg aspirin, 10 mg loratadine, 20 mg > >> ranitidine, 0.1% protopic, 1.04 g fiber caps, 1200 mg calcium w/ > >> magnesium & D, 800 I.U. vitamin D, multivitamin, 1000 mg vitamin C, 1000 > >> mcg Biotin, 1000 mg fish oil. > >> > >> Diet: no sugar, limited gluten (1 serving/week) due to gluten > >> intolerance, high veggie and fruit, limited carbs (2-4 servings/ day) > >> and protein (8-12 oz/day), low fat (3-6 servings/day) no alcohol, > >> limiting salt & no nicotine. Walk dog 2.5 miles/day. > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Since many meds can change both renin and aldosterone tests we need to know all meds you were taking at the time you had tests done. Are you sure you are eating 1500 MG or less a day of sodium and 4700 or more MG of Potassium. .. > > Has anyone had unilateral adrenalectomy with bilateral disease? My aldosterone is very high. (Latest numbers from 23 August 2011—Aldo: 252 ngdl, Renin:2.7ng/mL/h, ARR: 93) I take 200mg Inspra daily, 50mg of Metoprolol daily, and 20 meq of KlorCon daily. Potassium ranges 3.0-4.3 typically but will often go below normal range even with supplements and potassium sparing meds. CT was normal as well as renal ultrasound and renal arteriogram. I have no other health problems except medullary sponge kidney and kidney stones. My kidney function is normal for my age. I dash and workout 4-5 days a week. > Inspra is managing my hypertension very well but I have had to increase the dose every 2-3 months for the last 15 months as my blood pressure rises. AVS showed both adrenal glands overproduce, but the numbers from the left are much higher than in the right: > Site Aldosterone ng/dl Cortisol mcg/dl A/C ratio > IVC before stim 26 22.4 1.2 > Left adrenal after stim 35000 895 39.1 > Right adrenal after stim 960 48.9 19.6 > High IVC after stim 280 38.5 7.3 > Low IVC after stim 160 31.6 5.1 > > The Docs were not real pleased with numbers from the right, as they show dilution, but it was my third AVS so we rolled with it. We have come to the point where we are considering a leap of faith and removing the left adrenal attempting to decrease circulating aldosterone, lower ARR and achieve better BP control. I have no secondary cause for HTN. Everyone is puzzled as to why Aldo is so high and renin is still normal. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Hi Debbie - based on my own AVS experience I'm wondering if your doctors are certain that your disease is bilateral. I've had AVS twice and each time, my right adrenal post-ACTH values have been higher than normal range. The first time, the left wasn't accessed correctly (my tumor is on the left) but one of my doctors misinterpreted the high right values anyway and assumed it was bilateral. I had already been on spiro three weeks (and suffering miserably from side effects) when *another* of my doctors called and explained that the " normal " adrenal's post-ACTH values will be high after ACTH, and that what matters is the ratio between the sides, not just whether the lab value itself is out of normal range. I hope that makes sense I'm terrible with math and with talking about numbers! -msmith1928 Nulliparous female, 46, 5'3 " , 120 lbs, polymenorrhea, hyperinsulinemia, hereditary fructose intolerance, lactose intolerance, probable gluten intolerance. Current meds are K 20 MEQ 4x/day, singulair 10mg, norethindrone ..35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg as needed. Low sodium, fructose- and grain-free diet. Known drug allergies include PCN, sulfa, tetracycline; spiro caused gynecomastia, polymenorrhea, depression, anxiety, and dizziness. 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); AVS determined disease is unilateral, adrenalectomy is scheduled for next month. > > Has anyone had unilateral adrenalectomy with bilateral disease? My aldosterone is very high. (Latest numbers from 23 August 2011—Aldo: 252 ngdl, Renin:2.7ng/mL/h, ARR: 93) I take 200mg Inspra daily, 50mg of Metoprolol daily, and 20 meq of KlorCon daily. Potassium ranges 3.0-4.3 typically but will often go below normal range even with supplements and potassium sparing meds. CT was normal as well as renal ultrasound and renal arteriogram. I have no other health problems except medullary sponge kidney and kidney stones. My kidney function is normal for my age. I dash and workout 4-5 days a week. > Inspra is managing my hypertension very well but I have had to increase the dose every 2-3 months for the last 15 months as my blood pressure rises. AVS showed both adrenal glands overproduce, but the numbers from the left are much higher than in the right: > Site Aldosterone ng/dl Cortisol mcg/dl A/C ratio > IVC before stim 26 22.4 1.2 > Left adrenal after stim 35000 895 39.1 > Right adrenal after stim 960 48.9 19.6 > High IVC after stim 280 38.5 7.3 > Low IVC after stim 160 31.6 5.1 > > The Docs were not real pleased with numbers from the right, as they show dilution, but it was my third AVS so we rolled with it. We have come to the point where we are considering a leap of faith and removing the left adrenal attempting to decrease circulating aldosterone, lower ARR and achieve better BP control. I have no secondary cause for HTN. Everyone is puzzled as to why Aldo is so high and renin is still normal. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 You have Primary Aldo which is mostly due to bilateral lumps and bumps which produce aldo but may not be seen by CT or other imaging tests.You could reqeust a radioactie scan.However here is what I recommend to your team now.1. Do a 24 hr urine for Na, K and creatinine and aldo. These will tell us and them if you are DASHing to the max. If not doing so will likely help all of your problems.The Right adrenal sample appears to not be from an adrenal vein.A 3rd failed AVS now sets our record here I think.I am available to work with you and your team to get you back to health as a consultant. You can email me at lowerbp2@...Just in case you did not get our welcome it is below. Please add thumbnail at end of messages. 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 had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad 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 and potassium 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 a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: 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). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. 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. 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 "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The deadly Duo. 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, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. 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. 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 in only 2-3 days. 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 and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we 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 our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 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 the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx 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. There is a brief discussion of this in my Evolution Article. 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. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day.2. No BP meds in last 4-12 weeks depending on meds and Drs advice.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. Try to get this done about 1-4 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 call this Dr. Grim’s “Quick Pee Test” for PA. Our PA Registry: 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 4/20/11 for me would be Grim110420. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/291869. 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.htm10. 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.11. 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. 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.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. 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@....May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACCBoard Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Has anyone had unilateral adrenalectomy with bilateral disease? My aldosterone is very high. (Latest numbers from 23 August 2011—Aldo: 252 ngdl, Renin:2.7ng/mL/h, ARR: 93) I take 200mg Inspra daily, 50mg of Metoprolol daily, and 20 meq of KlorCon daily. Potassium ranges 3.0-4.3 typically but will often go below normal range even with supplements and potassium sparing meds. CT was normal as well as renal ultrasound and renal arteriogram. I have no other health problems except medullary sponge kidney and kidney stones. My kidney function is normal for my age. I dash and workout 4-5 days a week. Inspra is managing my hypertension very well but I have had to increase the dose every 2-3 months for the last 15 months as my blood pressure rises. AVS showed both adrenal glands overproduce, but the numbers from the left are much higher than in the right: Site Aldosterone ng/dl Cortisol mcg/dl A/C ratio IVC before stim 26 22.4 1.2 Left adrenal after stim 35000 895 39.1 Right adrenal after stim 960 48.9 19.6 High IVC after stim 280 38.5 7.3 Low IVC after stim 160 31.6 5.1 The Docs were not real pleased with numbers from the right, as they show dilution, but it was my third AVS so we rolled with it. We have come to the point where we are considering a leap of faith and removing the left adrenal attempting to decrease circulating aldosterone, lower ARR and achieve better BP control. I have no secondary cause for HTN. Everyone is puzzled as to why Aldo is so high and renin is still normal. Quote Link to comment Share on other sites More sharing options...
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