Need info on a good doctor

[Guest guest]

Hi all,

It's been a while since I've posted, last time was August I think. I really

need to find a doctor who can help with my hyperaldosteronism, I'm willing to

travel, and I have good insurance (Empire via NYSHIP).

Here's a brief summary of what's happened since November 2009. I had

unexplained HTN and low potassium on several occasions which brought me to the

ER, lowest potassium was 2.9. I was initially diagnosed with primary

hyperaldosteronism by my doctor at Stony Brook in NY, started on spiro, which I

did not tolerate well at all. I then went to Columbia and have been seeing Dr.

Salila Kurra, who presented my case at Grand Rounds, and initially suspected

secondary, but now does not know what to think, since I do not have renal artery

stenosis. I have had about every medical test out there, CT scans, MRI's,

bloodwork, etc. The Columbia docs dont think its primary because my adrenal

glands do not show any growths via MRI and abdominal CT w contrast, and are not

enlarged, and also because although my aldosterone tests consistently high, the

renin is not low.

I was hospitalized twice in February, the first time bc I almost blacked out,

had an EP study and was found to have supraventricular tachycardia (I've known

about this since age 16), which was ablated. However, they also found that I

had a few episodes of non sustained ventricular tachycardia as well, so put me

on a beta blocker, which is making me tired and queasy every day (I suspect

hypoglycemia from this). My hunch is that perhaps the ventricular tach is a

result of the adrenal imbalance, but hey, I'm no doctor.

So, back to my original question....does anyone know of an expert in the area of

hyperaldosteronism who I can see for a consult and hopefully get some answers?

Your help is greatly appreciated.

Kathy in NY

[Guest guest]

I am available for one to one consulting with you and your home town Dr team to get you on the right road. How could you not tolerate spiro. Did it lower BP and raise K.Trust you are DASHing.The Columbia Drs need to read my article. Did not show up on MRI or CT. Never heard of that being relevant for about 50 years. PA is a biochemical Dx not an anatomical. Can you send us your renin and aldo numbers and what your urine Na, K and aldo was on the same day.This form of testing originated at Columbia. Shame on them. 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 all,It's been a while since I've posted, last time was August I think. I really need to find a doctor who can help with my hyperaldosteronism, I'm willing to travel, and I have good insurance (Empire via NYSHIP).Here's a brief summary of what's happened since November 2009. I had unexplained HTN and low potassium on several occasions which brought me to the ER, lowest potassium was 2.9. I was initially diagnosed with primary hyperaldosteronism by my doctor at Stony Brook in NY, started on spiro, which I did not tolerate well at all. I then went to Columbia and have been seeing Dr. Salila Kurra, who presented my case at Grand Rounds, and initially suspected secondary, but now does not know what to think, since I do not have renal artery stenosis. I have had about every medical test out there, CT scans, MRI's, bloodwork, etc. The Columbia docs dont think its primary because my adrenal glands do not show any growths via MRI and abdominal CT w contrast, and are not enlarged, and also because although my aldosterone tests consistently high, the renin is not low. I was hospitalized twice in February, the first time bc I almost blacked out, had an EP study and was found to have supraventricular tachycardia (I've known about this since age 16), which was ablated. However, they also found that I had a few episodes of non sustained ventricular tachycardia as well, so put me on a beta blocker, which is making me tired and queasy every day (I suspect hypoglycemia from this). My hunch is that perhaps the ventricular tach is a result of the adrenal imbalance, but hey, I'm no doctor.So, back to my original question....does anyone know of an expert in the area of hyperaldosteronism who I can see for a consult and hopefully get some answers? Your help is greatly appreciated.Kathy in NY

[Guest guest]

Dr. Grim,

The last labs were done in November 2010, I'm waiting for those to arrive in the

mail, and will post them as soon as I get them. I spoke with Dr. Kurra at

Columbia today, who said that she consulted with a number of colleagues since we

last spoke about my case, and they believe that it is definitely not primary,

because the plasma renin levels were not suppressed when aldo was high. They

believe that it is most likely secondary, but they dont know they cause and have

tested me for everything. I also had a dexa suppression test which came back

normal. Their thinking is that it is malignant hypertension.

On 7/12/10, my blood work results were:

1. plasma renin activity: 1.19

2. aldo 33.6

3. urine NA 133

4. urine K 27.4

On 6/29/10:

1. Plasma renin activity 5.36

2. Aldo 103.1

3. urine NA 23

4. urine K 57

I don't think that the spiro made much of an impact on my BP, but I was put on

Norvasc before the spiro and I think that helped. Its been in the normal range

since the Norvasc, which I started in the summer of 2010. The spiro made me

feel dehydrated constantly and I urinated all the time.

I am not DASHing yet, though I am not adding salt to my food, and trying to

avoid salty things as much as I can.

Thanks for your guidance....

Kathy

>

> > Hi all,

> >

> > It's been a while since I've posted, last time was August I think. I

> > really need to find a doctor who can help with my

> > hyperaldosteronism, I'm willing to travel, and I have good insurance

> > (Empire via NYSHIP).

> >

> > Here's a brief summary of what's happened since November 2009. I had

> > unexplained HTN and low potassium on several occasions which brought

> > me to the ER, lowest potassium was 2.9. I was initially diagnosed

> > with primary hyperaldosteronism by my doctor at Stony Brook in NY,

> > started on spiro, which I did not tolerate well at all. I then went

> > to Columbia and have been seeing Dr. Salila Kurra, who presented my

> > case at Grand Rounds, and initially suspected secondary, but now

> > does not know what to think, since I do not have renal artery

> > stenosis. I have had about every medical test out there, CT scans,

> > MRI's, bloodwork, etc. The Columbia docs dont think its primary

> > because my adrenal glands do not show any growths via MRI and

> > abdominal CT w contrast, and are not enlarged, and also because

> > although my aldosterone tests consistently high, the renin is not low.

> >

> > I was hospitalized twice in February, the first time bc I almost

> > blacked out, had an EP study and was found to have supraventricular

> > tachycardia (I've known about this since age 16), which was ablated.

> > However, they also found that I had a few episodes of non sustained

> > ventricular tachycardia as well, so put me on a beta blocker, which

> > is making me tired and queasy every day (I suspect hypoglycemia from

> > this). My hunch is that perhaps the ventricular tach is a result of

> > the adrenal imbalance, but hey, I'm no doctor.

> >

> > So, back to my original question....does anyone know of an expert in

> > the area of hyperaldosteronism who I can see for a consult and

> > hopefully get some answers? Your help is greatly appreciated.

> >

> > Kathy in NY

> >

> >

> >

>

[Guest guest]

Always give nomral values for the lab. you will not the the second test with the "high" renin is at at a time when your 24 hr urine Na was very low. you are sure the urine data if per 24 hours?CE Grim MDDr. Grim,The last labs were done in November 2010, I'm waiting for those to arrive in the mail, and will post them as soon as I get them. I spoke with Dr. Kurra at Columbia today, who said that she consulted with a number of colleagues since we last spoke about my case, and they believe that it is definitely not primary, because the plasma renin levels were not suppressed when aldo was high. They believe that it is most likely secondary, but they dont know they cause and have tested me for everything. I also had a dexa suppression test which came back normal. Their thinking is that it is malignant hypertension. On 7/12/10, my blood work results were:1. plasma renin activity: 1.192. aldo 33.63. urine NA 1334. urine K 27.4On 6/29/10:1. Plasma renin activity 5.362. Aldo 103.13. urine NA 234. urine K 57I don't think that the spiro made much of an impact on my BP, but I was put on Norvasc before the spiro and I think that helped. Its been in the normal range since the Norvasc, which I started in the summer of 2010. The spiro made me feel dehydrated constantly and I urinated all the time. I am not DASHing yet, though I am not adding salt to my food, and trying to avoid salty things as much as I can. Thanks for your guidance....Kathy> > > Hi all,> >> > It's been a while since I've posted, last time was August I think. I > > really need to find a doctor who can help with my > > hyperaldosteronism, I'm willing to travel, and I have good insurance > > (Empire via NYSHIP).> >> > Here's a brief summary of what's happened since November 2009. I had > > unexplained HTN and low potassium on several occasions which brought > > me to the ER, lowest potassium was 2.9. I was initially diagnosed > > with primary hyperaldosteronism by my doctor at Stony Brook in NY, > > started on spiro, which I did not tolerate well at all. I then went > > to Columbia and have been seeing Dr. Salila Kurra, who presented my > > case at Grand Rounds, and initially suspected secondary, but now > > does not know what to think, since I do not have renal artery > > stenosis. I have had about every medical test out there, CT scans, > > MRI's, bloodwork, etc. The Columbia docs dont think its primary > > because my adrenal glands do not show any growths via MRI and > > abdominal CT w contrast, and are not enlarged, and also because > > although my aldosterone tests consistently high, the renin is not low.> >> > I was hospitalized twice in February, the first time bc I almost > > blacked out, had an EP study and was found to have supraventricular > > tachycardia (I've known about this since age 16), which was ablated. > > However, they also found that I had a few episodes of non sustained > > ventricular tachycardia as well, so put me on a beta blocker, which > > is making me tired and queasy every day (I suspect hypoglycemia from > > this). My hunch is that perhaps the ventricular tach is a result of > > the adrenal imbalance, but hey, I'm no doctor.> >> > So, back to my original question....does anyone know of an expert in > > the area of hyperaldosteronism who I can see for a consult and > > hopefully get some answers? Your help is greatly appreciated.> >> > Kathy in NY> >> >> >>

[Guest guest]

Hi Dr. Grim,

Thanks for responding, I'm not sure what you mean about the second test?

> > >

> > > > Hi all,

> > > >

> > > > It's been a while since I've posted, last time was August I

> > think. I

> > > > really need to find a doctor who can help with my

> > > > hyperaldosteronism, I'm willing to travel, and I have good

> > insurance

> > > > (Empire via NYSHIP).

> > > >

> > > > Here's a brief summary of what's happened since November 2009. I

> > had

> > > > unexplained HTN and low potassium on several occasions which

> > brought

> > > > me to the ER, lowest potassium was 2.9. I was initially diagnosed

> > > > with primary hyperaldosteronism by my doctor at Stony Brook in NY,

> > > > started on spiro, which I did not tolerate well at all. I then

> > went

> > > > to Columbia and have been seeing Dr. Salila Kurra, who presented

> > my

> > > > case at Grand Rounds, and initially suspected secondary, but now

> > > > does not know what to think, since I do not have renal artery

> > > > stenosis. I have had about every medical test out there, CT scans,

> > > > MRI's, bloodwork, etc. The Columbia docs dont think its primary

> > > > because my adrenal glands do not show any growths via MRI and

> > > > abdominal CT w contrast, and are not enlarged, and also because

> > > > although my aldosterone tests consistently high, the renin is

> > not low.

> > > >

> > > > I was hospitalized twice in February, the first time bc I almost

> > > > blacked out, had an EP study and was found to have

> > supraventricular

> > > > tachycardia (I've known about this since age 16), which was

> > ablated.

> > > > However, they also found that I had a few episodes of non

> > sustained

> > > > ventricular tachycardia as well, so put me on a beta blocker,

> > which

> > > > is making me tired and queasy every day (I suspect hypoglycemia

> > from

> > > > this). My hunch is that perhaps the ventricular tach is a result

> > of

> > > > the adrenal imbalance, but hey, I'm no doctor.

> > > >

> > > > So, back to my original question....does anyone know of an

> > expert in

> > > > the area of hyperaldosteronism who I can see for a consult and

> > > > hopefully get some answers? Your help is greatly appreciated.

> > > >

> > > > Kathy in NY

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

You will need the second testing if the high renin was at a time when your urine Na was very low.You cannot interpret renin and aldo without a simultaneous 24 hr urine for Na,K and creatinine. Well some do but they don't understand the physiology such as Dr. Young. CE Grim MDHi Dr. Grim,Thanks for responding, I'm not sure what you mean about the second test?> > >> > > > Hi all,> > > >> > > > It's been a while since I've posted, last time was August I > > think. I> > > > really need to find a doctor who can help with my> > > > hyperaldosteronism, I'm willing to travel, and I have good > > insurance> > > > (Empire via NYSHIP).> > > >> > > > Here's a brief summary of what's happened since November 2009. I > > had> > > > unexplained HTN and low potassium on several occasions which > > brought> > > > me to the ER, lowest potassium was 2.9. I was initially diagnosed> > > > with primary hyperaldosteronism by my doctor at Stony Brook in NY,> > > > started on spiro, which I did not tolerate well at all. I then > > went> > > > to Columbia and have been seeing Dr. Salila Kurra, who presented > > my> > > > case at Grand Rounds, and initially suspected secondary, but now> > > > does not know what to think, since I do not have renal artery> > > > stenosis. I have had about every medical test out there, CT scans,> > > > MRI's, bloodwork, etc. The Columbia docs dont think its primary> > > > because my adrenal glands do not show any growths via MRI and> > > > abdominal CT w contrast, and are not enlarged, and also because> > > > although my aldosterone tests consistently high, the renin is > > not low.> > > >> > > > I was hospitalized twice in February, the first time bc I almost> > > > blacked out, had an EP study and was found to have > > supraventricular> > > > tachycardia (I've known about this since age 16), which was > > ablated.> > > > However, they also found that I had a few episodes of non > > sustained> > > > ventricular tachycardia as well, so put me on a beta blocker, > > which> > > > is making me tired and queasy every day (I suspect hypoglycemia > > from> > > > this). My hunch is that perhaps the ventricular tach is a result > > of> > > > the adrenal imbalance, but hey, I'm no doctor.> > > >> > > > So, back to my original question....does anyone know of an > > expert in> > > > the area of hyperaldosteronism who I can see for a consult and> > > > hopefully get some answers? Your help is greatly appreciated.> > > >> > > > Kathy in NY> > > >> > > >> > > >> > >> >> >> >>