Re: Endocrinologist near Philadelphia

[Guest guest]

Hi , can you post the results of your AVS to the group? The reason I ask is

that I recently had the experience of having an AVS done incorrectly and was

first led to believe the same thing as you - that the gland without the tumor is

overproducing.

Turned out that the gland with the tumor was not cannulated correctly in the

first place, making the AVS results invalid. I'm currently waiting for a date to

have AVS re-done.

Worth mentioning: it took my doctors almost two months to figure this out, but

when I posted my results here Dr. Grim and several others quickly pointed out

that something was amiss.

>

> Hi,

>

> I just got the results of my AVS test from the IR and was told that surgery is

not an option because the gland without the growth is also producing high levels

of aldosterone. This was my worst fear! From everything I've learned here,

treating this medically is a very delicate balance. Although I like the original

Endocrinologist I went to,(he specializes in Diabetes) I don't feel that he's

completely knowledgeable about PA. For instance, I told him I was having a very

hard time with anxiety, memory, and numbness in my hand. He brushed them off and

said he never heard of these as a symptoms of PA. I know these things are

connected to my PA, not just because of posts I've read here, but also from

papers and studies I've read written by numerous doctors validating that they

are real symptoms and connected. I made an appointment with him for a follow up

now that it was determined I can't have surgery but, I wanted to see if anyone

in Pennsylvania might have an Endocrinologist you would reccomend in the

Philadelphia area? One that you are comfortable with, and who you feel really

understands PA inside and out. Thanks!

>

[Guest guest]

Thank you! I requested a copy of the results which are being snail mailed to me, so I should have them in a few days. I will post them as soon as I do.

[Guest guest]

Please send us your results using the AVS report form in our files. Ocassionally we find they have not been interpreted correctly. Can't recall who you are as u gave no thumbnail. What did they recommend forRX? did they mention DASH?Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Hi,

I just got the results of my AVS test from the IR and was told that surgery is not an option because the gland without the growth is also producing high levels of aldosterone. This was my worst fear! From everything I've learned here, treating this medically is a very delicate balance. Although I like the original Endocrinologist I went to,(he specializes in Diabetes) I don't feel that he's completely knowledgeable about PA. For instance, I told him I was having a very hard time with anxiety, memory, and numbness in my hand. He brushed them off and said he never heard of these as a symptoms of PA. I know these things are connected to my PA, not just because of posts I've read here, but also from papers and studies I've read written by numerous doctors validating that they are real symptoms and connected. I made an appointment with him for a follow up now that it was determined I can't have surgery but, I wanted to see if anyone in Pennsylvania might have an Endocrinologist you would

reccomend in the Philadelphia area? One that you are comfortable with, and who you feel really understands PA inside and out. Thanks!

[Guest guest]

I would find a Board Certified Hypertension Specialist in Philly. You can find them at the Am Soc of Hypertension web site.Send me the names and I will see who I know.CE Grim MD Thank you! I requested a copy of the results which are being snail mailed to me, so I should have them in a few days. I will post them as soon as I do.

[Guest guest]

Thank you Dr. Grim. I appreciate your help. I’m still trying to collect all of my test results so I can post all my labs up to this point but, I will create a profile and upload it to the file folder. I’ll post the AVS sheet as soon as I get those results in the mail. No one has said anything about medications or DASH yet. I’m still taking my Amlodipine and Metaprol although BP is still too high ( I average 150/98). My Endo did make a comment that I must really watch my sodium intake because I needed to re-do the sodium loading test with 5000mg instead of 3000mg just to get me to the minimum level. I made an appointment with my current Endo for the 17th to follow up from the AVS but would like to talk with someone else as well. I checked out the site you mentioned and found the following names within a 30 Mile radius. I pasted from the site so I hope it comes through on email okay. So you are saying that I shouldn’t be seeing and Endocrinologist, I should be seeing a hypertension specialist. FirpoMDDorrellMDNephrologyHermanMDAdult Medicine, NephrologySorkinHardyMDAdult Medicine, Nephrology, Consultations OnlyHoppLaszloMDPediatrics, NephrologyCarrollceMDNephrologyBottom of FormTop of FormBottom of FormMDNephrologyFriedmanMD, JDAdult Medicine, NephrologySoricelliMDNephrology, Consultations OnlyBenzMDAdult Medicine, NephrologyBrestAlbertMDCardiologyBurkeMDCheungphMD, PhDNephrologyCodarioMD,FACPAdult Medicine, Clinical Lipidology, Vascular MedicineConleyMDPediatrics, NephrologyCuhaciBulentMDAdult Medicine, Sleep Medicine, Age ManagementdeGomaEmilMDCardiology, Vascular Medicine, Clinical Lipidology Medicine, Clinical LipidologyDeloachMDNephrologyDimitriouDOAdult Medicine, NephrologyDissanayakeImaraMDFalknerBonitaMDPediatrics, NephrologyFigueredoMDCardiologyFrancosMDAdult Medicine, NephrologyBottom of FormTop of FormGaughanBottom of FormMDNephrologyGoldmanMDMDAdult Medicine, CardiologyKimKwan EunMDAdult Medicine, NephrologyKrevolinLarryDOAdult Medicine, NephrologyLevisonMDNephrology, Women's HealthNickeyDOOlshanArthurMD, PhDAdult Medicine, Nephrology, Renal TransplantationSchwartzAllanMDAdult Medicine, NephrologyTownsendMDAdult Medicine, Nephrology, Consultations OnlyWardLawrenceMD,MPH,FACPAdult Medicine, Primary CareCressmanDOMatchaMrinaliniMDAdult Medicine, Nephrology

[Guest guest]

I dont see anyone I know there that I can recommend.You need a HTN specialist who has experience with PA or an Endo who has experience with PA.I am available as a consultant to coach your team if you are interested and you think your team can/would work with me.No reason to repeat the sodium loading test that I can see. Just start DASHing now and watch your BP to down. Get the book now. Be prepared to get a new life as you get better at controlling your salt toxicity problem caused by excess aldo.Trust you read our intro and have read the Evol of PA article in our files. Take to all the team who takes care of you. 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. Thank you Dr. Grim. I appreciate your help. I’m still trying to collect all of my test results so I can post all my labs up to this point but, I will create a profile and upload it to the file folder. I’ll post the AVS sheet as soon as I get those results in the mail. No one has said anything about medications or DASH yet. I’m still taking my Amlodipine and Metaprol although BP is still too high ( I average 150/98). My Endo did make a comment that I must really watch my sodium intake because I needed to re-do the sodium loading test with 5000mg instead of 3000mg just to get me to the minimum level. I made an appointment with my current Endo for the 17th to follow up from the AVS but would like to talk with someone else as well. I checked out the site you mentioned and found the following names within a 30 Mile radius. I pasted from the site so I hope it comes through on email okay. So you are saying that I shouldn’t be seeing and Endocrinologist, I should be seeing a hypertension specialist. FirpoMDDorrellMDNephrologyHermanMDAdult Medicine, NephrologySorkinHardyMDAdult Medicine, Nephrology, Consultations OnlyHoppLaszloMDPediatrics, NephrologyCarrollceMDNephrologyBottom of FormTop of FormBottom of FormMDNephrologyFriedmanMD, JDAdult Medicine, NephrologySoricelliMDNephrology, Consultations OnlyBenzMDAdult Medicine, NephrologyBrestAlbertMDCardiologyBurkeMDCheungphMD, PhDNephrologyCodarioMD,FACPAdult Medicine, Clinical Lipidology, Vascular MedicineConleyMDPediatrics, NephrologyCuhaciBulentMDAdult Medicine, Sleep Medicine, Age ManagementdeGomaEmilMDCardiology, Vascular Medicine, Clinical Lipidology Medicine, Clinical LipidologyDeloachMDNephrologyDimitriouDOAdult Medicine, NephrologyDissanayakeImaraMDFalknerBonitaMDPediatrics, NephrologyFigueredoMDCardiologyFrancosMDAdult Medicine, NephrologyBottom of FormTop of FormGaughanBottom of FormMDNephrologyGoldmanMDMDAdult Medicine, CardiologyKimKwan EunMDAdult Medicine, NephrologyKrevolinLarryDOAdult Medicine, NephrologyLevisonMDNephrology, Women's HealthNickeyDOOlshanArthurMD, PhDAdult Medicine, Nephrology, Renal TransplantationSchwartzAllanMDAdult Medicine, NephrologyTownsendMDAdult Medicine, Nephrology, Consultations OnlyWardLawrenceMD,MPH,FACPAdult Medicine, Primary CareCressmanDOMatchaMrinaliniMDAdult Medicine, Nephrology