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Re: Re: 42 yo woman runner who has had aldo 52 and renin 3.3 normal bp

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What you ususally want to do it is to follow data from good trials rather than what makes sense as making sense often leads to bad science. Such as using Premain to protect women or men from heart disease.hi Val,I do have renin ranges on my labs but there are two: ambulatory and non ambulatory. Wasn't sure which range I should be looking at.I know what you mean about questioning rt3 being a valid concept. I did do a lot of research and there was enough evidence out there for me to decide it was worth a shot at "correcting". I have also met some people who have had the same issues, fixed the rt3, and changed their lives completely.So how did your test turn out? I would like to see those results. Yes, my free t3 was low and my free t4 was high so it made sense with my hypo symptoms to treat with t3 only. I also had low ferritin which is really common when not converting properly.Suzanne

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Read my article. It is the total picture not just the ratio.CE Grim MD Val you wrote" Anything over 20 is suggestive of PA." IS IT 20 or 25? My labs say 25 Thanks for your help,Suzanne

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I wanted to buy a book about Dashing. I found The Dash Diet For Hypertension and The Dash Diet Action Plan. Can anyone make a recommendation on which one I should read or perhaps there is another one someone can suggest. thanks

Suzanne

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hey read my lips or emails. You want the one by T. which is my recomendation. Get it and read it and you will understand. Or you can do both. There is also a DASH for life you might want to look at. or do both.CE Grim MD I wanted to buy a book about Dashing. I found The Dash Diet For Hypertension and The Dash Diet Action Plan. Can anyone make a recommendation on which one I should read or perhaps there is another one someone can suggest. thanks Suzanne

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From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Suzanne Kann

Sent: Thursday, December 09, 2010 10:12 AM

To: hyperaldosteronism

Subject: Re: Re: 42 yo woman runner who has had

aldo 52 and renin 3.3 normal bp

I wanted to buy a book about Dashing. I found The Dash Diet For Hypertension

and The Dash Diet Action Plan. Can anyone make a recommendation on which one I

should read or perhaps there is another one someone can suggest. thanks

Suzanne

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Hmm did you not read our intro?????Have you been too busy running?See item 3 below.We have given considerable thought and work into this introduction. How or why did you not see this? How can we better suggest that you really should read the stuff we have on this introduction. 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. Conn in Endocrinology and Metabolism 1969-70 and 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. 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). 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.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 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 the 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: 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. 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 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. 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. 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.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. 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.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@....May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FAHABoard Certified in Internal Medicine, Geriatrics, and High Blood Pressure Retired Faculty/Professor of Medicine (U of MO, Indiana, UCLA/DREW, Medical College of Wisconsin and Cardiology, Endocrinology, Nephrology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Suzanne KannSent: Thursday, December 09, 2010 10:12 AMTo: hyperaldosteronism Subject: Re: Re: 42 yo woman runner who has had aldo 52 and renin 3.3 normal bp I wanted to buy a book about Dashing. I found The Dash Diet For Hypertension and The Dash Diet Action Plan. Can anyone make a recommendation on which one I should read or perhaps there is another one someone can suggest. thanks Suzanne

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Suzanne, it depends on the

lab. ARR > 20 is suggestive in

some labs. I have seen research

suggest that as low as 14 could be suggestive but that's not a popular opinion.

Val

From:

hyperaldosteronism [mailto:hyperaldosteronism ] On

Behalf Of Clarence Grim

On

Dec 8, 2010, at 10:04 PM, Suzanne Kann wrote:

Val you wrote

" Anything over 20 is suggestive

of PA. "

IS IT 20 or 25? My labs say 25

Thanks for your help,Suzanne

_,_._,___

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If you walked into the lab, you were ambulatory.

My FT3 was low so I added T3 to my T4 and now it is good.

Val

On

Dec 8, 2010, at 10:00 PM, Suzanne Kann wrote:

hi Val,

I do have renin ranges on my labs but there are

two: ambulatory and non a mbulatory. Wasn't sure which range I should be

looking at.

I know what you mean about questioning rt3 being

a valid concept. I did do a lot of research and there was enough evidence out

there for me to decide it was worth a shot at " correcting " . I have

also met some people who have had the same issues, fixed the rt3, and changed

their lives completely.

So how did your test turn out? I would like to

see those results. Yes, my free t3 was low and my free t4 was high so it made

sense with my hypo symptoms to treat with t3 only. I also had low ferritin

which is really common when not converting properly.

Suzanne

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It is a personal thing as you will note in my article. Unfortunately we don't have renins and aldos say 20 times before most folks get PA so we can tell what is abnormal for them. CE Grim MDSuzanne, it depends on the lab. ARR > 20 is suggestive in some labs. I have seen research suggest that as low as 14 could be suggestive but that's not a popular opinion. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence GrimVal you wrote" Anything over 20 is suggestive of PA." IS IT 20 or 25? My labs say 25 Thanks for your help,Suzanne _,_._,___

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If you sit for 1 hr and do aldo and then stand for 10 minutes it will double in some folks. So you can see the need to control these thinks as carefully as we can.Most don't pay any attention.Ideally in the old days we kept people in the hosp overnight then have them get up at 8 am and stand or walk for 2 hours. Then you have control and much tighter numbers.Dug up the details of the Grim-Weinberger Protocol DAY ONE Purpose:

Admission to the Habor-UCLA Hospital - CRC, orientation of subject to

the Protocol. 1. Admit

to: Clinical Study Center, Floor 5, Harbor UCLA Hospital. 2. Recumbent blood pressure in duplicate, pulse and

Temperature at every 4 hours period unless otherwise ordered. Blood pressure should be measured after

5 minutes of recumbant. Please

record arm circumference and initials of who took it. 3. Diet: Regular-today. 4. Activity: Ad lib - unless otherwise ordered. Bed

rest after midnight. 5. Weight: 6 a.m. daily and record (Always weigh

after voiding). 6. Measure

and record Height, Total body water, Lean body mass and Fat weight at 8 am

daily. 7. Medications

: None. 8. If

the patient started a 24 hr. urine

at 8 a.m. today (day-1), this is

to be continued until 12 mid night., sent for Sodium, Potassium and Creatinine Clearance in the

morning, tomorrow (day-2). Subject

is to have only water after 8 p.m. day-1 and remain recumbent and NPO from 12 midnight till 6 a.m.day-2. 9. Urine

collection each day: Day

- 2, at 12 midnight, 4 am, 6 am, 8 am, 12 noon, 4 pm and 8 pm. Day

- 3, at 12 midnight, 4 am, 6 am, 8 am, 12 noon, 4 pm and 8 pm. Day

- 4, at 12 midnight, 4 am, 6 am and 8 am.

Aliquot

urine samples and send them to the Central laboratory and to the Hypertension

laboratory. 10. Attach

(Delmar) 24 Hour blood pressure monitoring device to the subject and have

ambulatory blood pressure recording at 30 minutes interval, after

orientation. This is to be

continued through out the study period.

(Change 9V batteries for the Delmar P-IV device at every 24 hour

period). DAY TWO: “SALINE DAY” PURPOSE: 1)

to evaluate salt sensitivity by salt loading and ambulatory blood pressure

measurement. 2) to evaluate the

ability of renin, aldosterone and other hormones to suppress normally with a

standardized saline infusion and

3) to evaluate the renal response to saline infusion by quantitating the

amount of sodium excreted during and after a 4 hour saline infusion. 1. Diet: NPO until 12 noon or end of saline infusion. Return to previous diet after noon

infusion. 2. Vital

Signs: BP,Pulse and respiratory

rate at 6 a.m. (before rising) 8 a.m., 10 a.m. and 12 noon. Then resume previously ordered vital

signs. 3. Activity: Bed rest until 6 a.m., remain upright

(standing or walking) from 6 a.m. until after 8 a.m. Bed rest (bed flat!) for

duration of IV infusion. Ad lib after infusion. Go to bed at 10 p.m.

tonight(day-1) until 6 a.m. Have

at bedside by 7 a.m. today a) 2 #19 Butterfly thin walled needles,

B) 2-liters of Normal Saline, c) IV set up, d) needles and syringes and e)

blood tubes for blood works. 4. Bloodwork

before and at the end of the

saline infusion: At 8am, Obtain

sample for 1. Routine tests: CBC, SMA - 20 and Hb electrophoresis,

2. Special studies: a) Plasma renin activity and Plasma

aldosterone levels B) Catecholamine studies, c) Insulin, d) ANP, e) Red cell

ions transport studies, f) Cellular calcium studies and g) Genotyping. At

noon: Obtain a sample for PRA and PA and other studies. Mark requisition “After Saline Infusion

-recumbent”. 5. IV

Saline: Normal Saline to run from

8 a.m. to 12 Noon. Volume is calculated as 40 ml of Normal

saline/Kg of lean body mass/hour, for 4 hours. Volume

(L) = 40 * lean body mass(Kg) / Hour (ml) 1000 DAY

THREE : “LASIX DAY” PURPOSE : To

induce salt and water depletion

with a combination of Lasix, low salt diet and limited fluid intake. 1. Diet: NPO after midnight until upright blood tests drawn at 8

a.m. Then the diet is to be 10 mEq sodium, 70 mEq potassium, or “Hypertension

Protocol Diet”. The only fluid the patient may have besides that provided to the diet tray is limited to distilled water. The

amount of distilled water to be allowed is calculated by multiplying the

patient’s weight in kilograms by 25 cc and subtracting 700 cc (The amount on

the diet tray) from that amount. [Patient’s

weight (Kg) x 25 ] - 700 (700cc

is provided on the diet tray) This

subject is to receive _________ cc of distilled water today 2. Activity:

Bed rest until 6 am and draw blood at 6 am for PRAs and PA etc. Remain upright (standing or walking)

from 6 a.m. to 8 a.m. or when bloods drawn Ad lib after that. 3. Vital

signs: BP, Pulse and respiratory rate at 8 a.m. 4. Medication: Lasix 1mg/Kg lean body mass PO at 9

a.m., 1 p.m. and 5 p.m. 5. Lab:

8 AM. Draw blood for PRAs, PA etc.

Discuss with the

subject of the importance of adhering to the diet and fluid restrictions for

this day . Emphasize that they should eat or drink only what is on their tray

or the distilled water and there should be no salt whatsoever. Caution the

subject that if they receive salt on the tray today, it is an error and they

should not eat it but to notify the nurse immediately. They should be reminded to eat and

drink everything on their tray.

Remind them also that the distilled water is to last all day but that it

should be gone by midnight. Caution subject that they may feel faint in the

morning and that they should sit on the edge of the bed for 2-3 minutes before

standing up at 6 a.m. in the morning.

DAY

FOUR: “POST-LASIX DAY” PURPOSE: To

obtain blood for renin and other hormones in the salt depleted state produced

by yesterday’s regimen. 1. Diet

: NPO from midnight until end of upright blood test at 8 a.m. High salt breakfast after blood samples

were drawn and the other measurements were all done. The subject may stay for high salt lunch if so desired. 2. Activity: Bed rest until 6 a.m. If patient cannot remain upright for entire two hours, allow to return

to bed and immediately draw blood samples. Note time of veni-puncture on requisition.

Ad lib after two hour upright period.

3. Lab

: Blood samples drawn at 6 AM and

8 AM for the same blood tests as above. Saline-Lasix

Protocol/Twins

If you walked into the lab, you were ambulatory. My FT3 was low so I added T3 to my T4 and now it is good. Val hi Val, I do have renin ranges on my labs but there are two: ambulatory and non a mbulatory. Wasn't sure which range I should be looking at. I know what you mean about questioning rt3 being a valid concept. I did do a lot of research and there was enough evidence out there for me to decide it was worth a shot at "correcting". I have also met some people who have had the same issues, fixed the rt3, and changed their lives completely.So how did your test turn out? I would like to see those results. Yes, my free t3 was low and my free t4 was high so it made sense with my hypo symptoms to treat with t3 only. I also had low ferritin which is really common when not converting properly.Suzanne

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Hmmm I know the Chief of Hypertension at Case Western and have taught him about PA. Did you not see Dr. there? or Janice who has done some outstanding research in Endo and Aldo????CE Grim MDOn Dec 24, 2010, at 11:58 AM, Francis Bill SUSPECTED PA wrote:Meredith since I live close to Dartmouth I would like to know if you found any one there that had any knowledge of PA?I believe I caused Larry to leave this group. He didn't like my questions. >> > > I am adding my two cents as well! I am so sorry for what you have been thru. Your story especially touched me because I was a 42 y/o runner when I became ill as well. I also happen to be a podiatric surgeon and have great health insurance. However, I have still spent upwards of $6000.00 out of pocket in the past 2 years searching for answers.> > Furthermore, I might add that I have full access to all kinds of doctors all day long!! I went to the NIH, Dartmouth, the Beth Israel, Maine Medical Center, Mercy Hospital, Cleveland Clinic, and most recently, Case Western Reserve University (from which I graduated). What I have learned has mostly been self taught. This is a very complicated and "uncommon" disease. I had lots of great caring doctors who simply didn't have the experience to help me. What has helped, is letting go of the frustration (as much as possible) and following Dr. Grim's advice on DASHing and lab tests. Also, you must never ever ever give up.> > I absolutely agree with paying him to get more information! The only reason I haven't retained his services is because, now that he has led me to the correct diagnosis, I can get help up here in the Northeast. I also had help from a member named Larry who referred me to a specialist at the Brigham and Womens.> > So KEEP THE FAITH!! Yes, you DO have to advocate for yourself! And, I am a firm believer, you do get what you pay for and the universe reflects back onto us what we are putting out there. So let's all put this in the positive - it's the greatest thing that ever happened! > > God Bless and good luck - keep going until you find the right doctor for you.>

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