Re: Newbie To Hyperaldosteronism

[Guest guest]

Give us your complete story including FH, meds, tests, etc. See welcome below in case you did not get it. Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired (well semi-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, and 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. Without excess salt in the diet, aldosterone cannot do most of its damage. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Conn's Stories. 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. I trained with he and his team in Ann Arbor, MI in 1969. 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 own BP and insist that your health care team always measures BP correctly with an recently calibrated device: 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 plasma renin and aldosterone and urine aldosterone without this. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldosterone 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. Be sure the laboratory orders and does aldosterone NOT aldolase. 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. 7. 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 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. Learn as much as you can about how High Blood Pressure should be diagnosed and managed: Go to nih.gov and download and read the latest Joint National Commission (JNC) Report to get an overview on current guidelines. I have always asked all my staff (including secretaries) to read this so they can communicate the importance of high blood pressure to my patients. 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, FACC, FASH.Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. On Apr 12, 2012, at 8:10 AM, bsbjrn wrote: I am a newbie here - incidentally found this group - shocked so many people with same symptoms I'm experiencing. I'm a 50 yof with uncontrolled HTN - (better controlled w 3rd HTN med), fatique, headaches, hypokalemia, edema, mild SOB, sleep disturbances, sweats (not normal & not menopause (surgical menopause 20 years ago), "angiomyelolipoma"(left kidney), chronic hematuria. I've had these symptoms for a few years - increasing over the past two. Initial PMD moved, so with new (literally)PMD - he started 'investigating' why I had these symptoms. I wanted more than a bandaide on the uncontrolled HTN. My initial concern was the uncontrolled HTN was due to q 2 mth epidurals (DDD) - specifically the steroids, may have caused this. My new PMD, ordered a battery of tests (which numbers are all over the place)and consulted with an endocrinologist. Super team! They are both informative, patient, and are actively working to investigate. I am now awaiting another abd/renal CT, and then plan for a bilateral renal blood sampling. I appreciate all the informative posts - very interesting. Regards, BJ

[Guest guest]

Don't be shocked as we suspect we are just the very tip of the iceberg as there are "who- knows- how -many" walking around being put on their 3rd, 4th, 5th BP med that will not do anything for them because they have primary hyperaldosteronism.

Nearly all of us went years and years and years being not diagnosed and misdiagnosed. I wonder how many are in a pine box somewhere because their doc thought he or she could manage HTN and never found their PA and the heart attack or stroke finally got them before someone even thought of PA as a cause. So sounds like you found someone who actually gives a damn about finding the why.

In my case, I can say that many many of my symptoms, went away or got better after the potassium was finally controlled. Even better when I took control and DASHed and got back to exercising. I look at my records and I hadn't had a normal K on a blood test....well.....ever really, because I was healthy before and never got routine blood work. But they go back at least until 2004 with low K.

Fixed it in late 2010 and sleep better (I had a complaint of insomnia FOREVER and every doc kind of goes "Yeah, I sometimes can't sleep either...)" and compared my weeks awake with what they experienced. But it was my personal # 1 complaint. Headaches, chest pains, breathlessness, leg weakness where 3 steps up any incline took all my mental and physical energy, fatigue beyond description, strange tingles, and on and on and on........and I am not an island on here, as read on. Most of us had lives to lead and still somehow, someway, went into work every single day and di what had to be done so people thought there's no way we could be as sick, and as tired, as we claimed.

The experiences of many make us cringe sometimes, and the rudeness they endured, etc....so it is our goals to educate any doc or PA-C or NP about PA, even though it is is as clear as a bell in the HTN guidelines..

What was the 3rd med and what does helped a little mean?

From: bsbjrn <bsbjrn@...>Subject: Newbie To Hyperaldosteronismhyperaldosteronism Date: Thursday, April 12, 2012, 8:10 AM

I am a newbie here - incidentally found this group - shocked so many people with same symptoms I'm experiencing. I'm a 50 yof with uncontrolled HTN - (better controlled w 3rd HTN med), fatique, headaches, hypokalemia, edema, mild SOB, sleep disturbances, sweats (not normal & not menopause (surgical menopause 20 years ago), "angiomyelolipoma"(left kidney), chronic hematuria. I've had these symptoms for a few years - increasing over the past two. Initial PMD moved, so with new (literally)PMD - he started 'investigating' why I had these symptoms. I wanted more than a bandaide on the uncontrolled HTN. My initial concern was the uncontrolled HTN was due to q 2 mth epidurals (DDD) - specifically the steroids, may have caused this. My new PMD, ordered a battery of tests (which numbers are all over the place)and consulted with an endocrinologist. Super team! They are both informative, patient, and are actively working to investigate. I am now awaiting

another abd/renal CT, and then plan for a bilateral renal blood sampling. I appreciate all the informative posts - very interesting. Regards, BJ