Re: Phil - Questions

[Guest guest]

I will answer number 1! I was out of work for over a year before diagnosis.

Had many if not all the symptoms you describe. I am typing this from my desk at

work and now manage 4 employees after a promotion in January. Most all of my

symptoms became so much easier to deal with once on Spiro and DASHing/low

sodium. If I eat too much salt, the symptoms come back until I get my diet

under control. This is because you can out salt the medication. Personally I

am ok up to about 3000mg of sodium per day. When I get up in the 4000s or

higher I have some problems. My doctor recommends to go no higher than 2000mg

per day and 1500mg is ideal.

NOTE: It took a while for Spiro to work. After eating right and taking Spiro I

would estimate that it took 3-4 months to " feel " right. However, blood pressure

came down pretty quickly (almost overnight).

Good luck!

>

> Hello anyone,

> I've been recently diagnosed (July 11th) with Conn's syndrome, and have some

questions.

> First, I'm very impressed with the interaction in the group. I've been able to

pick out valuable bits of information that has helped me understand and relate

to my new diagnosis - one which I never heard of before July 11th.

>

> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1 " , 230 lbs.

I was first diagnosed with hypertension 3 years ago when I ended up in the

hospital with my bp = 199/130. I have suffered through several mis-diagnoses and

countless medications related to these diagnoses. I have suffered through high

levels of anxiety and I haven't slept through the night in over 3 years (I fall

asleep fine, just wake up every 1-1/2 hours to pee). Some nights I have

difficulty falling back asleep and suffer from complete exhaustion all day. The

general anxiety has subsided from 3 years ago but I still have extreme

sensitivity to stress. I've had to leave work two years ago as I could no longer

function properly. Over the past 3 years I have also been diagnosed with sleep

apnea and metal toxicity (mercury & lead). Both I'm being treated for. Conn's is

new, and may put a final piece in my puzzle of suffering. For the 3 years I've

been working through my erratic BP issues, I have been taking amlodipine. Since

diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

>

> What I want to try and find out is:

> 1) Has anybody had similar issues, or other issues (other than hypertension)

that have now been resolved by using Inspra?...Once the adolsterone is under

control, what other symptoms (such as fatigue, night time peeing, anxiety etc.)

may be relieved?

> 2) How good is the surgery option?...I may not require it, I just want to have

this thing removed!

> 3) I have currently been taking Inspra for 13 days with no results. I hear a

lot about Spiro, I was cautioned that I might grow breasts...this not my

favourite option! So what about Inspra? How is that working for anyone?

>

> I am in constant contact with my prescribing doctor and will follow their

advice, but I want to hear from anyone out there that might be in similar shoes

that can give me some advice or their own narrative they wish to share.

>

> Thanks

>

[Guest guest]

And I will answer #2. For me, " how good is the surgery option " has turned out to

be very, very good indeed. I had my tumor and left adrenal removed in October,

and have felt great ever since I woke up in the recovery room. BP normal,

potassium normal, and a ton of annoying things caused by the hormonal

abnormalities are now gone: headaches, dizziness, incredibly painful muscle

spasms, brain fog, and metabolic disturbances that included weight gain, insulin

resistance, and hypoglycemia. I've been given my life back!

-msmith1928

Left laparoscopic adrenalectomy 10/13/11

> >

> > Hello anyone,

> > I've been recently diagnosed (July 11th) with Conn's syndrome, and have some

questions.

> > First, I'm very impressed with the interaction in the group. I've been able

to pick out valuable bits of information that has helped me understand and

relate to my new diagnosis - one which I never heard of before July 11th.

> >

> > I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1 " , 230

lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the

hospital with my bp = 199/130. I have suffered through several mis-diagnoses and

countless medications related to these diagnoses. I have suffered through high

levels of anxiety and I haven't slept through the night in over 3 years (I fall

asleep fine, just wake up every 1-1/2 hours to pee). Some nights I have

difficulty falling back asleep and suffer from complete exhaustion all day. The

general anxiety has subsided from 3 years ago but I still have extreme

sensitivity to stress. I've had to leave work two years ago as I could no longer

function properly. Over the past 3 years I have also been diagnosed with sleep

apnea and metal toxicity (mercury & lead). Both I'm being treated for. Conn's is

new, and may put a final piece in my puzzle of suffering. For the 3 years I've

been working through my erratic BP issues, I have been taking amlodipine. Since

diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >

> > What I want to try and find out is:

> > 1) Has anybody had similar issues, or other issues (other than hypertension)

that have now been resolved by using Inspra?...Once the adolsterone is under

control, what other symptoms (such as fatigue, night time peeing, anxiety etc.)

may be relieved?

> > 2) How good is the surgery option?...I may not require it, I just want to

have this thing removed!

> > 3) I have currently been taking Inspra for 13 days with no results. I hear a

lot about Spiro, I was cautioned that I might grow breasts...this not my

favourite option! So what about Inspra? How is that working for anyone?

> >

> > I am in constant contact with my prescribing doctor and will follow their

advice, but I want to hear from anyone out there that might be in similar shoes

that can give me some advice or their own narrative they wish to share.

> >

> > Thanks

> >

>

[Guest guest]

My comments are at the end in your message. Did you get the welcome below when you were first approved?CE Grim MD

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 him and his team in Ann Arbor, MI in 1969-70. 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. In oder for aldosterone to cause its damage one must also eat excess salt in the diet. Thus much of the damage can be controlled/reversed by lowering salt (sodium) intake and increasing potassium intake. This is the essence of the low sodium DASH eating plan. 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. Most devices will read at least 25 mm Hg too high or too low is some people. The only way to know if you are one is to have your and any other automatic devices checked for accuracy in you. Instructions for doing this are in our files. 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 with the testing for Pheochromocytoma and Cushing's thrown in. 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 accurate 24 hr urine for Na, K and creatinine, aldosterone, urinary free cortisol and catecholamines. See which ones your lab can do all in the same sample. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone and cortisol without this information. 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 5/1/12 for me would be Grim120521. 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 medical care team contract me directly at lowerbp2@.... My consulting fee is $500 for one year access to my expertise e-mail or by iChat or Skype or snail mail. 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 Jul 24, 2012, at 12:32 PM, philvsphil wrote:

Hello anyone,

I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses. Hey I thought Canadian Medicine was better than down here. Looks like they make the same mistakes.I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee).Classic for PA and a good Dr. would have asked about this when u first had HTN. Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for. How was Dx of these heavy metal posioning made and by what type of Dr. Where did the exposure come from. Lead toxicity increased BP and lowers renin.Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I have

been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

What I want to try and find out is:

1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?Read all the stories in our files.

2) How good is the surgery option?...I may not require it, I just want to have this thing removed! REad the papers on this in our files and then our ADX stories.

3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?Never tell us you are taking X without a dose and frequency. We are not mind readers.I assume they also told you to DASH to prevent you from outsalting the Inspra?o

I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.We have 700 here and you can read every email going back for 10 years. If we had a really good data base u could query it but we don's as everyone does not fill in the information as requested. Did you yet? See our welcome item on this below.

Thanks

[Guest guest]

No Dr. Grim…but I have now…thanks!Thanks so much for putting up this amazing site!No, the Canadian medical system is not any "better", but generally - financially - covered. Metal toxicity was done & detected through two separate tests, 6 months apart, one by a naturopath, one by a MD. No idea on exposure…just a bunch of theories Ex: I was an electrician = fluorescent tubes = mercury = I smashed thousands of these as an apprentice in my early twenties.I've been taking 50mg of Inspra everyday & 8mg of Coversyl. Nobody has mentioned DASH yet. Fortunately I have avoided sodium (especially in meat - I buy fresh) for a while now. I've eaten a pulled-pork sandwich in the past, and basically needed to go to the hospital that night. I have grown to fear sodium, and I monitor sodium intake to anything new I put in my body. I will read everything you suggested and then come up with some questions (if I have any), but it's still good to hear from people….it gives me hope! It's been a long time since I've felt good.Thanks so much for responding,Phil On 2012-07-24, at 4:01 PM, Clarence Grim wrote:

My comments are at the end in your message. Did you get the welcome below when you were first approved?CE Grim MD

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 him and his team in Ann Arbor, MI in 1969-70. 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. In oder for aldosterone to cause its damage one must also eat excess salt in the diet. Thus much of the damage can be controlled/reversed by lowering salt (sodium) intake and increasing potassium intake. This is the essence of the low sodium DASH eating plan. 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. Most devices will read at least 25 mm Hg too high or too low is some people. The only way to know if you are one is to have your and any other automatic devices checked for accuracy in you. Instructions for doing this are in our files. 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 with the testing for Pheochromocytoma and Cushing's thrown in. 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 accurate 24 hr urine for Na, K and creatinine, aldosterone, urinary free cortisol and catecholamines. See which ones your lab can do all in the same sample. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone and cortisol without this information. 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 5/1/12 for me would be Grim120521. 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 medical care team contract me directly at lowerbp2@.... My consulting fee is $500 for one year access to my expertise e-mail or by iChat or Skype or snail mail. 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 Jul 24, 2012, at 12:32 PM, philvsphil wrote:

Hello anyone,

I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses. Hey I thought Canadian Medicine was better than down here. Looks like they make the same mistakes.I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee).Classic for PA and a good Dr. would have asked about this when u first had HTN. Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for. How was Dx of these heavy metal posioning made and by what type of Dr. Where did the exposure come from. Lead toxicity increased BP and lowers renin.Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I have

been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

What I want to try and find out is:

1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?Read all the stories in our files.

2) How good is the surgery option?...I may not require it, I just want to have this thing removed! REad the papers on this in our files and then our ADX stories.

3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?Never tell us you are taking X without a dose and frequency. We are not mind readers.I assume they also told you to DASH to prevent you from outsalting the Inspra?o

I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.We have 700 here and you can read every email going back for 10 years. If we had a really good data base u could query it but we don's as everyone does not fill in the information as requested. Did you yet? See our welcome item on this below.

Thanks

[Guest guest]

My guess is that getting better at DASHing played a role as well. The faster you DASH the faster BP falls and K rises and you feel better Some of Conn's early studies showed that dropping sodium intake to 250 mg a day lowered BP in 1-2 days even in advanced cases.CE Grim MDOn Jul 24, 2012, at 2:39 PM, crzylnebkr wrote:

I will answer number 1! I was out of work for over a year before diagnosis. Had many if not all the symptoms you describe. I am typing this from my desk at work and now manage 4 employees after a promotion in January. Most all of my symptoms became so much easier to deal with once on Spiro and DASHing/low sodium. If I eat too much salt, the symptoms come back until I get my diet under control. This is because you can out salt the medication. Personally I am ok up to about 3000mg of sodium per day. When I get up in the 4000s or higher I have some problems. My doctor recommends to go no higher than 2000mg per day and 1500mg is ideal.

NOTE: It took a while for Spiro to work. After eating right and taking Spiro I would estimate that it took 3-4 months to "feel" right. However, blood pressure came down pretty quickly (almost overnight).

Good luck!

>

> Hello anyone,

> I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

> First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

>

> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses. I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee). Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for. Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I

have been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

>

> What I want to try and find out is:

> 1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?

> 2) How good is the surgery option?...I may not require it, I just want to have this thing removed!

> 3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?

>

> I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.

>

> Thanks

>

[Guest guest]

As many others have had the same result. When it works it works very well.CE Grim MDOn Jul 24, 2012, at 2:54 PM, msmith_1928 wrote:

And I will answer #2. For me, "how good is the surgery option" has turned out to be very, very good indeed. I had my tumor and left adrenal removed in October, and have felt great ever since I woke up in the recovery room. BP normal, potassium normal, and a ton of annoying things caused by the hormonal abnormalities are now gone: headaches, dizziness, incredibly painful muscle spasms, brain fog, and metabolic disturbances that included weight gain, insulin resistance, and hypoglycemia. I've been given my life back!

-msmith1928

Left laparoscopic adrenalectomy 10/13/11

> >

> > Hello anyone,

> > I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

> > First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

> >

> > I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses. I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee). Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for. Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues,

I have been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >

> > What I want to try and find out is:

> > 1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?

> > 2) How good is the surgery option?...I may not require it, I just want to have this thing removed!

> > 3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?

> >

> > I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.

> >

> > Thanks

> >

>

[Guest guest]

Did they do 24 hour urine to find the metal toxicity?

> >

> >>

> >> Hello anyone,

> >> I've been recently diagnosed (July 11th) with Conn's syndrome, and have

some questions.

> >> First, I'm very impressed with the interaction in the group. I've been able

to pick out valuable bits of information that has helped me understand and

relate to my new diagnosis - one which I never heard of before July 11th.

> >>

> >> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1 " , 230

lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the

hospital with my bp = 199/130. I have suffered through several mis-diagnoses and

countless medications related to these diagnoses.

> >>

> >

> >

> > Hey I thought Canadian Medicine was better than down here. Looks like they

make the same mistakes.

> >

> >> I have suffered through high levels of anxiety and I haven't slept through

the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to

pee).

> >>

> >

> > Classic for PA and a good Dr. would have asked about this when u first had

HTN.

> >

> >> Some nights I have difficulty falling back asleep and suffer from complete

exhaustion all day. The general anxiety has subsided from 3 years ago but I

still have extreme sensitivity to stress. I've had to leave work two years ago

as I could no longer function properly. Over the past 3 years I have also been

diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being

treated for.

> >>

> >

> > How was Dx of these heavy metal posioning made and by what type of Dr. Where

did the exposure come from. Lead toxicity increased BP and lowers renin.

> >

> >> Conn's is new, and may put a final piece in my puzzle of suffering. For the

3 years I've been working through my erratic BP issues, I have been taking

amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >>

> >> What I want to try and find out is:

> >> 1) Has anybody had similar issues, or other issues (other than

hypertension) that have now been resolved by using Inspra?...Once the

adolsterone is under control, what other symptoms (such as fatigue, night time

peeing, anxiety etc.) may be relieved?

> >>

> >

> > Read all the stories in our files.

> >> 2) How good is the surgery option?...I may not require it, I just want to

have this thing removed!

> >>

> >

> > REad the papers on this in our files and then our ADX stories.

> >

> >

> >> 3) I have currently been taking Inspra for 13 days with no results. I hear

a lot about Spiro, I was cautioned that I might grow breasts...this not my

favourite option! So what about Inspra? How is that working for anyone?

> >>

> > Never tell us you are taking X without a dose and frequency. We are not mind

readers.

> > I assume they also told you to DASH to prevent you from outsalting the

Inspra?

> > o

> >>

> >> I am in constant contact with my prescribing doctor and will follow their

advice, but I want to hear from anyone out there that might be in similar shoes

that can give me some advice or their own narrative they wish to share.

> >>

> >

> > We have 700 here and you can read every email going back for 10 years. If

we had a really good data base u could query it but we don's as everyone does

not fill in the information as requested. Did you yet?

> >

> > See our welcome item on this below.

> >

> >>

> >> Thanks

> >>

> >

> >

> >

>

[Guest guest]

Nervous about natruopath testing. Would recommend retesting from time to time in a reliable lab. There must be a govt environmental testing lab that can be used. It is not easy to measure these things accurately.In general coversyl will have little BP effect in PA.Did you read my Evolution article. No one who has been treating your hypertension has mentioned DASH?I just tired to read the Canadian HTN Guidelines-I know at least 12 of the folks on the writing team but the Journal wants to charge 31.50. In the US Guidelines are free. Curious. Indeed any article published that was supported by our tax dollars is free after 6 months. But did find them at http://www.hypertension.caand this is table 2 from these. So either these recommendations for Canada just came out with DASH or more likely your team has not read any of the guidelines for HTN. So your system educational update seems no better than here. Too bad they had not read section on Endocrine HTN as well.But Hey! Once you graduate you know everything! Even in Canuck land!Table 2: Dietary Approaches to Stop Hypertension (DASH) dietFood GroupDaily ServingExamples and NotesGrains6-8Whole wheat breads, cereal, oatmeal, rice, pasta, quinoa, barley, low fat, low sodium crackersVegetables4-5Dark green and orange fresh or frozen vegetables, tomatoes, leafy greens, carrots, peas, squash, spinach, peppers, broccoli, sweet potatoesFruits4-5Have fruit more often than juice: Apples, apricots, bananas, grapes, oranges, grapefruit, melons, peaches, berries, mangoLow-fat or fat-free dairy foods, foods or alternatives2-3Skim, 1% milk, fortified soy beverage or yogurt, 6-18% MF, cheeseMeats, poultry, fish≤ 6Select only lean meats. Choose fish like char, herring, mackerel, salmon, sardines and trout. Trim away fats. Broil, roast or boil. No frying. Remove skin from poultry. Low sodium, low fat deli meatsNuts, seeds, dry beans4-5/ weekAlmonds, peanuts, walnuts, sunflower seeds, soybeans, lentils, chick peas, dried peas and beans, tofuFats and oils2-3 tspSoft margarines, mayonnaise, vegetable oil (olive, corn, canola, or safflower), salad dressingSweets≤5 tbsp/ weekSugar, jelly, jam, hard candy, syrups, sorbet, chocolateDASH eating plan available at:http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdfOn Jul 24, 2012, at 3:45 PM, Phil Hobbs wrote:

No Dr. Grim…but I have now…thanks!Thanks so much for putting up this amazing site!No, the Canadian medical system is not any "better", but generally - financially - covered. Metal toxicity was done & detected through two separate tests, 6 months apart, one by a naturopath, one by a MD. No idea on exposure…just a bunch of theories Ex: I was an electrician = fluorescent tubes = mercury = I smashed thousands of these as an apprentice in my early twenties.I've been taking 50mg of Inspra everyday & 8mg of Coversyl. Nobody has mentioned DASH yet. Fortunately I have avoided sodium (especially in meat - I buy fresh) for a while now. I've eaten a pulled-pork sandwich in the past, and basically needed to go to the hospital that night. I have grown to fear sodium, and I monitor sodium intake to anything new I put in my body. I will read everything you suggested and then come up with some questions (if I have any), but it's still good to hear from people….it gives me hope! It's been a long time since I've felt good.Thanks so much for responding,Phil On 2012-07-24, at 4:01 PM, Clarence Grim wrote:

My comments are at the end in your message. Did you get the welcome below when you were first approved?CE Grim MD

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 him and his team in Ann Arbor, MI in 1969-70. 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. In oder for aldosterone to cause its damage one must also eat excess salt in the diet. Thus much of the damage can be controlled/reversed by lowering salt (sodium) intake and increasing potassium intake. This is the essence of the low sodium DASH eating plan. 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. Most devices will read at least 25 mm Hg too high or too low is some people. The only way to know if you are one is to have your and any other automatic devices checked for accuracy in you. Instructions for doing this are in our files. 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 with the testing for Pheochromocytoma and Cushing's thrown in. 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 accurate 24 hr urine for Na, K and creatinine, aldosterone, urinary free cortisol and catecholamines. See which ones your lab can do all in the same sample. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone and cortisol without this information. 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 5/1/12 for me would be Grim120521. 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 medical care team contract me directly at lowerbp2@.... My consulting fee is $500 for one year access to my expertise e-mail or by iChat or Skype or snail mail. 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 Jul 24, 2012, at 12:32 PM, philvsphil wrote:

Hello anyone,

I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses. Hey I thought Canadian Medicine was better than down here. Looks like they make the same mistakes.I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee).Classic for PA and a good Dr. would have asked about this when u first had HTN. Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for. How was Dx of these heavy metal posioning made and by what type of Dr. Where did the exposure come from. Lead toxicity increased BP and lowers renin.Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I have

been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

What I want to try and find out is:

1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?Read all the stories in our files.

2) How good is the surgery option?...I may not require it, I just want to have this thing removed! REad the papers on this in our files and then our ADX stories.

3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?Never tell us you are taking X without a dose and frequency. We are not mind readers.I assume they also told you to DASH to prevent you from outsalting the Inspra?o

I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.We have 700 here and you can read every email going back for 10 years. If we had a really good data base u could query it but we don's as everyone does not fill in the information as requested. Did you yet? See our welcome item on this below.

Thanks

[Guest guest]

Curious why Phil did not get welcome when you first signed on. Supposed to go to everyone?CE Grim MDOn Jul 24, 2012, at 4:19 PM, Francis Bill SUSPECTED PA wrote:

Did they do 24 hour urine to find the metal toxicity?

> >

> >>

> >> Hello anyone,

> >> I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

> >> First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

> >>

> >> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses.

> >>

> >

> >

> > Hey I thought Canadian Medicine was better than down here. Looks like they make the same mistakes.

> >

> >> I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee).

> >>

> >

> > Classic for PA and a good Dr. would have asked about this when u first had HTN.

> >

> >> Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for.

> >>

> >

> > How was Dx of these heavy metal posioning made and by what type of Dr. Where did the exposure come from. Lead toxicity increased BP and lowers renin.

> >

> >> Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I have been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >>

> >> What I want to try and find out is:

> >> 1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?

> >>

> >

> > Read all the stories in our files.

> >> 2) How good is the surgery option?...I may not require it, I just want to have this thing removed!

> >>

> >

> > REad the papers on this in our files and then our ADX stories.

> >

> >

> >> 3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?

> >>

> > Never tell us you are taking X without a dose and frequency. We are not mind readers.

> > I assume they also told you to DASH to prevent you from outsalting the Inspra?

> > o

> >>

> >> I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.

> >>

> >

> > We have 700 here and you can read every email going back for 10 years. If we had a really good data base u could query it but we don's as everyone does not fill in the information as requested. Did you yet?

> >

> > See our welcome item on this below.

> >

> >>

> >> Thanks

> >>

> >

> >

> >

>

[Guest guest]

Dr Grim

The naturopath used a " pre " & " post " urine sample after taking oral DSMA. The

sample was assessed at Rocky Mountain Analytical in Calgary Alberta.

The MD used a urine sample after administering an IV of DMPS. The sample was

sent to the USA, to: Doctor's Data Inc. in Illinois.

I will definitely read the evolution article.

No one has mentioned DASH...no MD I have seen, including all trips to various

hospitals, ever even heard of Conn's Syndrome...it's a complete mystery around

here! (about one hour north of Toronto).

As a bit of a bonus: I'm currently in University (@46 years old) and have access

to all data bases for articles...this may prove to be quite handy...and I get

them for free.

Phil

> >>

> >>>

> >>> Hello anyone,

> >>> I've been recently diagnosed (July 11th) with Conn's syndrome, and have

some questions.

> >>> First, I'm very impressed with the interaction in the group. I've been

able to pick out valuable bits of information that has helped me understand and

relate to my new diagnosis - one which I never heard of before July 11th.

> >>>

> >>> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1 " , 230

lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the

hospital with my bp = 199/130. I have suffered through several mis-diagnoses and

countless medications related to these diagnoses.

> >>>

> >>

> >>

> >> Hey I thought Canadian Medicine was better than down here. Looks like they

make the same mistakes.

> >>

> >>> I have suffered through high levels of anxiety and I haven't slept through

the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to

pee).

> >>>

> >>

> >> Classic for PA and a good Dr. would have asked about this when u first had

HTN.

> >>

> >>> Some nights I have difficulty falling back asleep and suffer from complete

exhaustion all day. The general anxiety has subsided from 3 years ago but I

still have extreme sensitivity to stress. I've had to leave work two years ago

as I could no longer function properly. Over the past 3 years I have also been

diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being

treated for.

> >>>

> >>

> >> How was Dx of these heavy metal posioning made and by what type of Dr.

Where did the exposure come from. Lead toxicity increased BP and lowers renin.

> >>

> >>> Conn's is new, and may put a final piece in my puzzle of suffering. For

the 3 years I've been working through my erratic BP issues, I have been taking

amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >>>

> >>> What I want to try and find out is:

> >>> 1) Has anybody had similar issues, or other issues (other than

hypertension) that have now been resolved by using Inspra?...Once the

adolsterone is under control, what other symptoms (such as fatigue, night time

peeing, anxiety etc.) may be relieved?

> >>>

> >>

> >> Read all the stories in our files.

> >>> 2) How good is the surgery option?...I may not require it, I just want to

have this thing removed!

> >>>

> >>

> >> REad the papers on this in our files and then our ADX stories.

> >>

> >>

> >>> 3) I have currently been taking Inspra for 13 days with no results. I hear

a lot about Spiro, I was cautioned that I might grow breasts...this not my

favourite option! So what about Inspra? How is that working for anyone?

> >>>

> >> Never tell us you are taking X without a dose and frequency. We are not

mind readers.

> >> I assume they also told you to DASH to prevent you from outsalting the

Inspra?

> >> o

> >>>

> >>> I am in constant contact with my prescribing doctor and will follow their

advice, but I want to hear from anyone out there that might be in similar shoes

that can give me some advice or their own narrative they wish to share.

> >>>

> >>

> >> We have 700 here and you can read every email going back for 10 years. If

we had a really good data base u could query it but we don's as everyone does

not fill in the information as requested. Did you yet?

> >>

> >> See our welcome item on this below.

> >>

> >>>

> >>> Thanks

> >>>

> >>

> >>

> >

> >

> >

>

[Guest guest]

Ask for the articles regarding testing before and after DSMA and IV DPMS. I would also pubmed for articles on how to test for these toxicities. Look at http://www.quackwatch.com/14Legal/dd_suit.htmlUrine Elements | Rocky Mountain Analytical Labwww.rmalab.com/index.php?id=188Rocky Mountain Analytical Lab. Do I Need a Test? ... in hair tissue. Oral or intravenous chelation is used to remove toxic elements from storage sites in tissue.Any lab that offers tests for chelation therapy should be highly suspect as chelation therapy is a hoax mostly.CE Grim MDOn Jul 24, 2012, at 9:11 PM, philvsphil wrote:

Dr Grim

The naturopath used a "pre" & "post" urine sample after taking oral DSMA. The sample was assessed at Rocky Mountain Analytical in Calgary Alberta.

The MD used a urine sample after administering an IV of DMPS. The sample was sent to the USA, to: Doctor's Data Inc. in Illinois.

I will definitely read the evolution article.

No one has mentioned DASH...no MD I have seen, including all trips to various hospitals, ever even heard of Conn's Syndrome...it's a complete mystery around here! (about one hour north of Toronto).

As a bit of a bonus: I'm currently in University (@46 years old) and have access to all data bases for articles...this may prove to be quite handy...and I get them for free.

Phil

> >>

> >>>

> >>> Hello anyone,

> >>> I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

> >>> First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

> >>>

> >>> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses.

> >>>

> >>

> >>

> >> Hey I thought Canadian Medicine was better than down here. Looks like they make the same mistakes.

> >>

> >>> I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee).

> >>>

> >>

> >> Classic for PA and a good Dr. would have asked about this when u first had HTN.

> >>

> >>> Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for.

> >>>

> >>

> >> How was Dx of these heavy metal posioning made and by what type of Dr. Where did the exposure come from. Lead toxicity increased BP and lowers renin.

> >>

> >>> Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I have been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >>>

> >>> What I want to try and find out is:

> >>> 1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?

> >>>

> >>

> >> Read all the stories in our files.

> >>> 2) How good is the surgery option?...I may not require it, I just want to have this thing removed!

> >>>

> >>

> >> REad the papers on this in our files and then our ADX stories.

> >>

> >>

> >>> 3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?

> >>>

> >> Never tell us you are taking X without a dose and frequency. We are not mind readers.

> >> I assume they also told you to DASH to prevent you from outsalting the Inspra?

> >> o

> >>>

> >>> I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.

> >>>

> >>

> >> We have 700 here and you can read every email going back for 10 years. If we had a really good data base u could query it but we don's as everyone does not fill in the information as requested. Did you yet?

> >>

> >> See our welcome item on this below.

> >>

> >>>

> >>> Thanks

> >>>

> >>

> >>

> >

> >

> >

>

[Guest guest]

And seeClin Pharmacol Ther. 2010 Sep;88(3):412-5. Epub 2010 Jul 21.Chelation for heavy metals (arsenic, lead, and mercury): protective or perilous?Kosnett MJ.SourceDivision of Clinical Pharmacology & Toxicology, Department of Medicine, University of Colorado Denver, Denver, Colorado, USA. .Kosnett@...AbstractDespite clinical experience that spans more than half a century, chelation for toxic heavy metals represents one of the most controversial and misapplied interventions in clinical toxicology. The prompt use of chelating agents to treat acute, life-threatening intoxication is an indication that is largely supported by experimental animal data and limited clinical research. Although chelating agents administered for chronic intoxication may accelerate the excretion of heavy metals, their therapeutic efficacy in terms of decreased morbidity and mortality is largely unestablished. Recent investigations suggest that their use in such settings might be associated with deleterious effects. Careful attention to risk-benefit issues is warranted, particularly in clinical situations in which the etiological role of heavy metals in the patient's illness is in question.On Jul 24, 2012, at 9:11 PM, philvsphil wrote:

Dr Grim

The naturopath used a "pre" & "post" urine sample after taking oral DSMA. The sample was assessed at Rocky Mountain Analytical in Calgary Alberta.

The MD used a urine sample after administering an IV of DMPS. The sample was sent to the USA, to: Doctor's Data Inc. in Illinois.

I will definitely read the evolution article.

No one has mentioned DASH...no MD I have seen, including all trips to various hospitals, ever even heard of Conn's Syndrome...it's a complete mystery around here! (about one hour north of Toronto).

As a bit of a bonus: I'm currently in University (@46 years old) and have access to all data bases for articles...this may prove to be quite handy...and I get them for free.

Phil

> >>

> >>>

> >>> Hello anyone,

> >>> I've been recently diagnosed (July 11th) with Conn's syndrome, and have some questions.

> >>> First, I'm very impressed with the interaction in the group. I've been able to pick out valuable bits of information that has helped me understand and relate to my new diagnosis - one which I never heard of before July 11th.

> >>>

> >>> I'm a 46 year old male living in Barrie, Ontario, Canada. I'm 6'-1", 230 lbs. I was first diagnosed with hypertension 3 years ago when I ended up in the hospital with my bp = 199/130. I have suffered through several mis-diagnoses and countless medications related to these diagnoses.

> >>>

> >>

> >>

> >> Hey I thought Canadian Medicine was better than down here. Looks like they make the same mistakes.

> >>

> >>> I have suffered through high levels of anxiety and I haven't slept through the night in over 3 years (I fall asleep fine, just wake up every 1-1/2 hours to pee).

> >>>

> >>

> >> Classic for PA and a good Dr. would have asked about this when u first had HTN.

> >>

> >>> Some nights I have difficulty falling back asleep and suffer from complete exhaustion all day. The general anxiety has subsided from 3 years ago but I still have extreme sensitivity to stress. I've had to leave work two years ago as I could no longer function properly. Over the past 3 years I have also been diagnosed with sleep apnea and metal toxicity (mercury & lead). Both I'm being treated for.

> >>>

> >>

> >> How was Dx of these heavy metal posioning made and by what type of Dr. Where did the exposure come from. Lead toxicity increased BP and lowers renin.

> >>

> >>> Conn's is new, and may put a final piece in my puzzle of suffering. For the 3 years I've been working through my erratic BP issues, I have been taking amlodipine. Since diagnosis I have moved to 8mg of Coversyl and 50mg of Inspra.

> >>>

> >>> What I want to try and find out is:

> >>> 1) Has anybody had similar issues, or other issues (other than hypertension) that have now been resolved by using Inspra?...Once the adolsterone is under control, what other symptoms (such as fatigue, night time peeing, anxiety etc.) may be relieved?

> >>>

> >>

> >> Read all the stories in our files.

> >>> 2) How good is the surgery option?...I may not require it, I just want to have this thing removed!

> >>>

> >>

> >> REad the papers on this in our files and then our ADX stories.

> >>

> >>

> >>> 3) I have currently been taking Inspra for 13 days with no results. I hear a lot about Spiro, I was cautioned that I might grow breasts...this not my favourite option! So what about Inspra? How is that working for anyone?

> >>>

> >> Never tell us you are taking X without a dose and frequency. We are not mind readers.

> >> I assume they also told you to DASH to prevent you from outsalting the Inspra?

> >> o

> >>>

> >>> I am in constant contact with my prescribing doctor and will follow their advice, but I want to hear from anyone out there that might be in similar shoes that can give me some advice or their own narrative they wish to share.

> >>>

> >>

> >> We have 700 here and you can read every email going back for 10 years. If we had a really good data base u could query it but we don's as everyone does not fill in the information as requested. Did you yet?

> >>

> >> See our welcome item on this below.

> >>

> >>>

> >>> Thanks

> >>>

> >>

> >>

> >

> >

> >

>