Re: Protocol for Diagnosing Conn's

[Guest guest]

How did your dr. discover the adenoma? Did you do a cat scan? Why did they wait 3 yrs to do the AVS?

I just did my AVS. I was diagnosed 2 months ago, Any ratio of ald to renin of higher than 14-20 should be treated as PA.

Once they find a tumor on the gland, they can not just take the tumor out, they have to remove the gland as the gland itself is so small, they have to remove it.

When you do the AVS make sure that they administer ACTH which is a hormone to ensure accurate results. Mine took 3-1/2 hrs with 4 hrs in the recovery room.

Where are you having your AVS? Who is your surgeon. Would be good to share this information as we are all going thru this.

Here is more info:

http://www.endocrinesurgeon.co.uk/adrenals/adrenals10.html

Farah

annc999 <annc999@...> wrote:

I have had an adrenal "adenoma" since 2002, along with sudden HBP and low potassium problems which started in about 2000. My doctor has suspected Conn's, but after recent aldosterone blood result of 18.9 and aldosterone/renin ratio of 90, he wants me to have adrenal vein sampling.I assume he is going for a diagnosis of Primary Aldosteronism, but I am concerned that there may be more to it. I have appointments with the interventional radiologist AND a surgeon over the next two weeks.My questions are:What is the protocol for diagnosing PA (Conn's)? Should't I have more blood and urine tests BEFORE I have AVS?Anyone with similar experience, please write back. I am especially frightened to have the AVS done, as I understand it is not all too common. I have already done research on

interventional radiologists, and the one I will be seeing is very good with excellent credentials, as well as the surgeon.Will they likely remove only the tumor or the adrenal gland itself?Thanks for any information you can give.

[Guest guest]

an AVS can last from 1 -4 hrs depending on the skill of the radiologist and the anatomy of the pt.

Did they start your ACTH as soon as you got down to the cath lab or did they get samples and then do the ACTH. The first approach is preferred and it takes less time.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

If you have a bump on CT and are not controlled by drugs then it may be time for the AVS. Have you been tried on Spiro or Inspra yet.

Can you give us your complete story-it is rare for PA to appear suddenly. It has usuallybeen there for some time before the DX is made. Get all your BPs and Ks as far back as you can. Any family Hx. ?

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

The data suggests by the way that you do not do the sampling before and after ACTH but just star the infusion when the pt comes down for the study and by the time they are ready the sampling can be done. They need to read the most current lit on using ACTH and adrenal vein sampling.

I need to dig out our protocol and publish it on our site so pts can carry it into their "specialists" office.

39. Weinberger MH, Grim CE, and Higgins JT Jr. The diagnosis, localization and treatment of primary aldosteronism. Comprehensive Therapy 1977;3: 12-17.

50. Weinberger MH, Grim CE, Holifield JW, Kem DC, Ganguly A, Kramer NJ, Yune HY, Wellman H, and Donohue JP. Primary aldosteronism: diagnosis, localization and treatment. Ann Int Med 1979;90: 386-395

76. Ganguly A, Bergstein J, Grim CE, Yum M, and Weinberger MH. Childhood primary aldosteronism due to adrenal adenoma: preoperative localization with adrenal venography. Pediatrics 1980;65:605-609.

77. Grim CE, Weinberger MH. Familial dexamethasone suppressible normokalemic hyperaldosteronism. Pediatrics, 1980;65:597-604.

84. Ganguly A, Pratt JH, Yune HY, Grim CE, and Weinberger MH. Computerized Tomography Scanning and Primary Aldosteronism. NEJM 1979;301:558-560.

120. Ganguly A, Yum MN, Pratt JH, Weinberger MH, Grim CE, Yune HY, and Donohue JP. Unilateral hypersecretion of aldosterone associated with adrenal hyperplasia as a cause of primary aldosteronism. Clin & Exper. Hyper 1983;5:1635-1658.

223. Grim CE. Evolution of diagnostic criteria for primary aldosteronism: why is it more common in "drug-resistant" hypertension today? Curr Hypertens Rep. 2004 Dec;6(6):485-92.

The last one is in our files folder at our site.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Nice description of the procedure. Maybe we should publish a few of these in our files. Any thoughts. I havent looked at the video but will try later this week.

I am in Rio for next 3 days traing folks for accurate BP measurement. I dont know if I will have email there.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Hi Ann:

They started the procedure at about 8:00 am. They gave me a "transitional anestesia" so I was awake but not feeling any pain. Although half way thru the procedure I had some pain under my rib cages. The position of the monitor was in a way that I could only see if I lifted my head and the doctors didn't want me to do that as it would cause some bleeding in the vein. The first sampling took about 2 to 2-1/2 hrs, then they injected the ACTH and we had to wait 20 minutes for it to take affect, then followed by another hour. Basically they cut thru your femoral vein at the groin and they send a catheter to take blood samples of the glands. The right gland apparently is harder to get around and takes longer than the left side.

Recovery was 4 hrs to make sure there is no internal or external bleeding and so you are flat on your back and have to make sure not to move the leg with the cut. After that they told me to rest for 3-4 days and not lift anything, and no showers for 24 hrs. The cut is totally healed now, the incision was very tiny may be about 1/4 inch.

After doing the procedure the doctor told me that there was no infarction or any other problems.

I was fine in the hospital, came home and fell sleep, woke up with a lot of abdominal pain(which I learned was quite unusual) and my bp went up quite high because of the pain. By the next day I was feeling much much better.

If they dont use the ACTH, then the entire test takes 2 hrs. But from all the research that we did and the recommendations of Dr Grim, without the ACTH the tests are not as accurate. We learned that at UCSF, they dont use the ACTH and have never done any studies for its accuracy according to the doctor who did mine, this test is so rare that in the Bay Area its only done there, and even not enough to be a subject for research.(yet) I was originally scheduled to do the test few days earlier, and had to wait a few days for them to order the ACTH. I figured they are doing this tedious and dangerous test, might as well do it right from the beginning. ,

Best of wishes to you Ann and I hope your healing starts very soon and you feel much better. Whatever you decide to do. By the way if interested you can watch the Laprascopic surgery to see how it is perfomed.

scroll down toward the bottom of the page

Click on video and pick the 4th line down(left adrenalectomy in Conn's desease)

http://www.websurg.com/index.php?url=toc/theme.php & s=1 & id=1_2_1_2

you may enter a registration and password (its a free use)

Farahannc999 <annc999@...> wrote:

Farah:Thank you for the information!I don't know why they waited, except that I didn't have the exact symptoms of PA even though I had the "adenoma". It was an incidental finding originally. Once I see these two specialists, I will post their information, if I feel they are good. I have no plans to have anything done yet - they are both consultations at this point. I am learning something new about all this every day.What was the AVS like? Were you awake enough to feel it, or were you zoned out? Did you watch it on the monitor while they did it? Why did it take so long and why was recovery so long? Because of risk of blood clots? Ann> > I have had an adrenal "adenoma" since 2002, along with sudden HBP and > low potassium problems which started in about 2000. My doctor has > suspected Conn's, but after recent aldosterone blood result of 18.9 > and aldosterone/renin ratio of 90, he wants me to have adrenal vein > sampling.> > I assume he is going for a diagnosis of Primary Aldosteronism, but I > am concerned that there may be more to it. I have appointments with > the interventional radiologist AND a surgeon over the next two weeks.> > My questions are:> > What is the protocol for diagnosing PA (Conn's)? Should't I have > more blood and urine tests BEFORE I have AVS?> > Anyone with similar experience, please write back. I am especially > frightened to have the AVS done, as I understand it is not all too > common. I have

already done research on interventional radiologists, > and the one I will be seeing is very good with excellent credentials, > as well as the surgeon.> > Will they likely remove only the tumor or the adrenal gland itself?> > Thanks for any information you can give.> > > > > > --------------------------------->

[Guest guest]

Thanks, and keep the info coming.

I will try to get the courage to watch the video (I'm a bit

squeemish).

Ann

> >

> > I have had an adrenal " adenoma " since 2002, along with sudden

HBP

> and

> > low potassium problems which started in about 2000. My doctor

has

> > suspected Conn's, but after recent aldosterone blood result of

> 18.9

> > and aldosterone/renin ratio of 90, he wants me to have adrenal

> vein

> > sampling.

> >

> > I assume he is going for a diagnosis of Primary Aldosteronism,

but

> I

> > am concerned that there may be more to it. I have appointments

> with

> > the interventional radiologist AND a surgeon over the next two

> weeks.

> >

> > My questions are:

> >

> > What is the protocol for diagnosing PA (Conn's)? Should't I

have

> > more blood and urine tests BEFORE I have AVS?

> >

> > Anyone with similar experience, please write back. I am

> especially

> > frightened to have the AVS done, as I understand it is not all

too

> > common. I have already done research on interventional

> radiologists,

> > and the one I will be seeing is very good with excellent

> credentials,

> > as well as the surgeon.

> >

> > Will they likely remove only the tumor or the adrenal gland

itself?

> >

> > Thanks for any information you can give.

> >

> >

> >

> >

> >

> > ---------------------------------

> >

[Guest guest]

Mine took 11/2 hrs to do it was done like so,

i was taken in to the lab with an iv no acth at this point.

now they went in and took samples of both and then took blood from both at different times with the acth.

i took 2 hrs and I was out the door did not feel a thing did not have any problems.

took 2 weeks to get the results though I was so uptight to get them .

I had hard to control b/p for 5 yrs till it got to high and I ended up in er 8 times before 1 DR said hey this looks like conns lowest k was 2.1 highest b/p was 203/133

and yes I could tell it was high LOL

my pulse was 155 at that time also.

I was on 10 different b\p meds at this point and it was still running in the 170/117.

could not get out of bed cuz i was so weak from the low k im thinking.

Hope this helps u out im feeling for u i was scared of the test also but did it twice cuz the first time the DR messed up and didn't get a base line #s so the test was for nothing.

( bet the insurance company loved that)

lol

OK

its all good u will be fine

Mark

Protocol for Diagnosing Conn's

Farah:Thank you for the information!I don't know why they waited, except that I didn't have the exact symptoms of PA even though I had the "adenoma". It was an incidental finding originally. Once I see these two specialists, I will post their information, if I feel they are good. I have no plans to have anything done yet - they are both consultations at this point. I am learning something new about all this every day.What was the AVS like? Were you awake enough to feel it, or were you zoned out? Did you watch it on the monitor while they did it? Why did it take so long and why was recovery so long? Because of risk of blood clots? Ann> > I have had an adrenal "adenoma" since 2002, along with sudden HBP and > low potassium problems which started in about 2000. My doctor has > suspected Conn's, but after recent aldosterone blood result of 18.9 > and aldosterone/renin ratio of 90, he wants me to have adrenal vein > sampling.> > I assume he is going for a diagnosis of Primary Aldosteronism, but I > am concerned that there may be more to it. I have appointments with > the interventional radiologist AND a surgeon over the next two weeks.> > My questions are:> > What is the protocol for diagnosing PA (Conn's)? Should't I have > more blood and urine tests BEFORE I have AVS?> > Anyone with similar experience, please write back. I am especially > frightened to have the AVS done, as I understand it is not all too > common. I have already done research on interventional radiologists, > and the one I will be seeing is very good with excellent credentials, > as well as the surgeon.> > Will they likely remove only the tumor or the adrenal gland itself?> > Thanks for any information you can give.> > > > > > --------------------------------->

[Guest guest]

Sorry i turned in 3 urin tests all where fine.

started on spero and in 1 week my b/p came down (dont remember the #s Sorry)

i have a 2 cm adenoma on the left gland 2 yrs ago and have an appoitment to have it rechecked in the next 2 to 3 weeks

Thanks

Mark

Protocol for Diagnosing Conn's

I have had an adrenal "adenoma" since 2002, along with sudden HBP and low potassium problems which started in about 2000. My doctor has suspected Conn's, but after recent aldosterone blood result of 18.9 and aldosterone/renin ratio of 90, he wants me to have adrenal vein sampling.I assume he is going for a diagnosis of Primary Aldosteronism, but I am concerned that there may be more to it. I have appointments with the interventional radiologist AND a surgeon over the next two weeks.My questions are:What is the protocol for diagnosing PA (Conn's)? Should't I have more blood and urine tests BEFORE I have AVS?Anyone with similar experience, please write back. I am especially frightened to have the AVS done, as I understand it is not all too common. I have already done research on interventional radiologists, and the one I will be seeing is very good with excellent credentials, as well as the surgeon.Will they likely remove only the tumor or the adrenal gland itself?Thanks for any information you can give.

[Guest guest]

Thanks for the reassuring words. I hope I don't have to have it

done twice. LOL.

Ann

> >

> > I have had an adrenal " adenoma " since 2002, along with sudden

HBP

> and

> > low potassium problems which started in about 2000. My doctor

has

> > suspected Conn's, but after recent aldosterone blood result of

> 18.9

> > and aldosterone/renin ratio of 90, he wants me to have adrenal

> vein

> > sampling.

> >

> > I assume he is going for a diagnosis of Primary Aldosteronism,

but

> I

> > am concerned that there may be more to it. I have

appointments

> with

> > the interventional radiologist AND a surgeon over the next two

> weeks.

> >

> > My questions are:

> >

> > What is the protocol for diagnosing PA (Conn's)? Should't I

have

> > more blood and urine tests BEFORE I have AVS?

> >

> > Anyone with similar experience, please write back. I am

> especially

> > frightened to have the AVS done, as I understand it is not all

too

> > common. I have already done research on interventional

> radiologists,

> > and the one I will be seeing is very good with excellent

> credentials,

> > as well as the surgeon.

> >

> > Will they likely remove only the tumor or the adrenal gland

itself?

> >

> > Thanks for any information you can give.

> >

> >

> >

> >

> >

> > ---------------------------------

> >

[Guest guest]

I think the "protocol" varies with the experience of the Dr. My first nephrologist never considered PA, my second nephrologist recognized it right away, and confirmed high aldo and low K through blood tests, but didn't pursue AVS because he surgery doesn't usually fix it anyway. He gave me a low dose of Spiro, but wanted me to continue taking other drugs. I refered myself to an endocrinologist after doing more research on my own and he did the 24 urine test, CAT scan and AVS (each one scheduled as soon as the previous one's results were received). He got me off of all other BP meds and got me stable on just Spiro and K (I was taking 14 pills daily). Dr. Grim is the first one who showed interest in trying Inspra on me.

Re: Protocol for Diagnosing Conn's

How did your dr. discover the adenoma? Did you do a cat scan? Why did they wait 3 yrs to do the AVS?

I just did my AVS. I was diagnosed 2 months ago, Any ratio of ald to renin of higher than 14-20 should be treated as PA.

Once they find a tumor on the gland, they can not just take the tumor out, they have to remove the gland as the gland itself is so small, they have to remove it.

When you do the AVS make sure that they administer ACTH which is a hormone to ensure accurate results. Mine took 3-1/2 hrs with 4 hrs in the recovery room.

Where are you having your AVS? Who is your surgeon. Would be good to share this information as we are all going thru this.

Here is more info:

http://www.endocrinesurgeon.co.uk/adrenals/adrenals10.html

Farah

annc999 <annc999@...> wrote:

I have had an adrenal "adenoma" since 2002, along with sudden HBP and low potassium problems which started in about 2000. My doctor has suspected Conn's, but after recent aldosterone blood result of 18.9 and aldosterone/renin ratio of 90, he wants me to have adrenal vein sampling.I assume he is going for a diagnosis of Primary Aldosteronism, but I am concerned that there may be more to it. I have appointments with the interventional radiologist AND a surgeon over the next two weeks.My questions are:What is the protocol for diagnosing PA (Conn's)? Should't I have more blood and urine tests BEFORE I have AVS?Anyone with similar experience, please write back. I am especially frightened to have the AVS done, as I understand it is not all too common. I have already done research on interventional radiologists, and the one I will be seeing is very good with excellent credentials, as well as the surgeon.Will they likely remove only the tumor or the adrenal gland itself?Thanks for any information you can give.

[Guest guest]

It took several months to schedule my AVS once the Dr. ordered it due to insurance paperwork. Once there for the procedure, they might've given me something to relax, I don't recall. They did give me a pill that was some type of pain killer but nothing to make you drowsy or "out of it". When the pain killer wore of, they tried to give me another and I refused it because it made me very nauseous and the thought of heaving while this tube was winding through my veins was more scary than the pain! The incision site was numb from a local anesthetic but I could feel everything else. I would call it more uncomfortable than painful. They couldn't "drug" me with anything else because you need to be alert enough to hold your breath when told to for the x-ray. My study took several hours because I have an a-typical vein structure on my right side (which is actually a "typical" problem) and they made several attempts to find the right vein. They had told me up front that recovery would be 3 - 4 hours because the femural artery is so big, they want you laying down until they're sure it's done bleeding.

Best wishes!

Protocol for Diagnosing Conn's

Farah:Thank you for the information!I don't know why they waited, except that I didn't have the exact symptoms of PA even though I had the "adenoma". It was an incidental finding originally. Once I see these two specialists, I will post their information, if I feel they are good. I have no plans to have anything done yet - they are both consultations at this point. I am learning something new about all this every day.What was the AVS like? Were you awake enough to feel it, or were you zoned out? Did you watch it on the monitor while they did it? Why did it take so long and why was recovery so long? Because of risk of blood clots? Ann> > I have had an adrenal "adenoma" since 2002, along with sudden HBP and > low potassium problems which started in about 2000. My doctor has > suspected Conn's, but after recent aldosterone blood result of 18.9 > and aldosterone/renin ratio of 90, he wants me to have adrenal vein > sampling.> > I assume he is going for a diagnosis of Primary Aldosteronism, but I > am concerned that there may be more to it. I have appointments with > the interventional radiologist AND a surgeon over the next two weeks.> > My questions are:> > What is the protocol for diagnosing PA (Conn's)? Should't I have > more blood and urine tests BEFORE I have AVS?> > Anyone with similar experience, please write back. I am especially > frightened to have the AVS done, as I understand it is not all too > common. I have already done research on interventional radiologists, > and the one I will be seeing is very good with excellent credentials, > as well as the surgeon.> > Will they likely remove only the tumor or the adrenal gland itself?> > Thanks for any information you can give.> > > > > > --------------------------------->

[Guest guest]

I'm squeamish, too, but my video was just black and white "x-ray" style images of veins, so it wasn't too bothersome. Kind of like an ultrasound.

Re: Protocol for Diagnosing Conn's

Thanks, and keep the info coming. I will try to get the courage to watch the video (I'm a bit squeemish). Ann> > > > I have had an adrenal "adenoma" since 2002, along with sudden HBP > and > > low potassium problems which started in about 2000. My doctor has > > suspected Conn's, but after recent aldosterone blood result of > 18.9 > > and aldosterone/renin ratio of 90, he wants me to have adrenal > vein > > sampling.> > > > I assume he is going for a diagnosis of Primary Aldosteronism, but > I > > am concerned that there may be more to it. I have appointments > with > > the interventional radiologist AND a surgeon over the next two > weeks.> > > > My questions are:> > > > What is the protocol for diagnosing PA (Conn's)? Should't I have > > more blood and urine tests BEFORE I have AVS?> > > > Anyone with similar experience, please write back. I am > especially > > frightened to have the AVS done, as I understand it is not all too > > common. I have already done research on interventional > radiologists, > > and the one I will be seeing is very good with excellent > credentials, > > as well as the surgeon.> > > > Will they likely remove only the tumor or the adrenal gland itself?> > > > Thanks for any information you can give.> > > > > > > > > > > > ---------------------------------> >

[Guest guest]

In a message dated 4/15/05 2:19:30, leslie@... writes:

femural artery is so big, they want you laying down until they're sure it's done bleeding.

 

femoral vein for vein studies.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Ah, yes.... I've been out of school too long....

Re: Protocol for Diagnosing Conn's

In a message dated 4/15/05 2:19:30, leslie@... writes:

femural artery is so big, they want you laying down until they're sure it's done bleeding. femoral vein for vein studies.May your pressure be low!Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHSClinical Professor of Medicine and EpidemiologyDirector, Hypertension Diagnosis and Treatment CenterBoard Certified in Internal Medicine, Geriatrics and HypertensionPublished over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.Listed in Best Doctors in AmericaSpecializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Thanks, . I don't know why I am more afraid of the AVS than

if I had to have the adrenal surgery. It's all a bit overwhelming.

Ann

> >

> > I have had an adrenal " adenoma " since 2002, along with sudden

HBP

> and

> > low potassium problems which started in about 2000. My doctor

has

> > suspected Conn's, but after recent aldosterone blood result of

> 18.9

> > and aldosterone/renin ratio of 90, he wants me to have adrenal

> vein

> > sampling.

> >

> > I assume he is going for a diagnosis of Primary Aldosteronism,

but

> I

> > am concerned that there may be more to it. I have

appointments

> with

> > the interventional radiologist AND a surgeon over the next two

> weeks.

> >

> > My questions are:

> >

> > What is the protocol for diagnosing PA (Conn's)? Should't I

have

> > more blood and urine tests BEFORE I have AVS?

> >

> > Anyone with similar experience, please write back. I am

> especially

> > frightened to have the AVS done, as I understand it is not all

too

> > common. I have already done research on interventional

> radiologists,

> > and the one I will be seeing is very good with excellent

> credentials,

> > as well as the surgeon.

> >

> > Will they likely remove only the tumor or the adrenal gland

itself?

> >

> > Thanks for any information you can give.

> >

> >

> >

> >

> >

> > ---------------------------------

> >

[Guest guest]

I thought once they start you on spiro, that you should not be taking any potassium pills or foods that are high on potassium. At least according to the labels on my pills thats what it says.

From what I read from you guys's emails, it appears that you all like Inspra more than spiro.

Good info to know. I'll see!

Farah Malotky <leslie@...> wrote:

I think the "protocol" varies with the experience of the Dr. My first nephrologist never considered PA, my second nephrologist recognized it right away, and confirmed high aldo and low K through blood tests, but didn't pursue AVS because he surgery doesn't usually fix it anyway. He gave me a low dose of Spiro, but wanted me to continue taking other drugs. I refered myself to an endocrinologist after doing more research on my own and he did the 24 urine test, CAT scan and AVS (each one scheduled as soon as the previous one's results were received). He got me off of all other BP meds and got me stable on just Spiro and K (I was taking 14 pills daily). Dr. Grim is the first one who showed interest in trying Inspra on me.

Re: Protocol for Diagnosing Conn's

How did your dr. discover the adenoma? Did you do a cat scan? Why did they wait 3 yrs to do the AVS?

I just did my AVS. I was diagnosed 2 months ago, Any ratio of ald to renin of higher than 14-20 should be treated as PA.

Once they find a tumor on the gland, they can not just take the tumor out, they have to remove the gland as the gland itself is so small, they have to remove it.

When you do the AVS make sure that they administer ACTH which is a hormone to ensure accurate results. Mine took 3-1/2 hrs with 4 hrs in the recovery room.

Where are you having your AVS? Who is your surgeon. Would be good to share this information as we are all going thru this.

Here is more info:

http://www.endocrinesurgeon.co.uk/adrenals/adrenals10.html

Farah

annc999 <annc999@...> wrote:

I have had an adrenal "adenoma" since 2002, along with sudden HBP and low potassium problems which started in about 2000. My doctor has suspected Conn's, but after recent aldosterone blood result of 18.9 and aldosterone/renin ratio of 90, he wants me to have adrenal vein sampling.I assume he is going for a diagnosis of Primary Aldosteronism, but I am concerned that there may be more to it. I have appointments with the interventional radiologist AND a surgeon over the next two weeks.My questions are:What is the protocol for diagnosing PA (Conn's)? Should't I have more blood and urine tests BEFORE I have AVS?Anyone with similar experience, please write back. I am especially frightened to have the AVS done, as I understand it is not all too common. I have already done research on

interventional radiologists, and the one I will be seeing is very good with excellent credentials, as well as the surgeon.Will they likely remove only the tumor or the adrenal gland itself?Thanks for any information you can give.

[Guest guest]

On Apr 15, 2005, at 12:48 PM, Farah Rahbar wrote:

> I thought once they start you on spiro, that you should not be taking

> any potassium pills or foods that are high on potassium. At least

> according to the labels on my pills thats what it says.

> From what I read from you guys's emails, it appears that you all like

> Inspra more than spiro.

> Good info to know. I'll see!

> Farah

>

> Malotky <leslie@...> wrote:

> I think the " protocol " varies with the experience of the Dr.  My first

> nephrologist never considered PA, my second nephrologist recognized it

> right away, and confirmed high aldo and low K through blood tests, but

> didn't pursue AVS because he surgery doesn't usually fix it anyway. 

> He gave me a low dose of Spiro, but wanted me to continue taking other

> drugs.  I refered myself to an endocrinologist after doing more

> research on my own and he did the 24 urine test, CAT scan and AVS

> (each one scheduled as soon as the previous one's results were

> received).  He got me off of all other BP meds and got me stable on

> just Spiro and K (I was taking 14 pills daily).  Dr. Grim is the first

> one who showed interest in trying Inspra on me.

>  

>

> Re: Protocol for Diagnosing Conn's

>

> How did your dr. discover the adenoma? Did you do a cat scan? Why did

> they wait 3 yrs to do the AVS?

> I just did my AVS. I was diagnosed 2 months ago, Any ratio of ald to

> renin of higher than 14-20 should be treated as PA.

> Once they find a tumor on the gland, they can not just take the tumor

> out, they have to remove the gland as the gland itself is so small,

> they have to remove it.

> When you do the AVS make sure that they administer ACTH which is a

> hormone to ensure accurate results. Mine took 3-1/2 hrs with 4 hrs in

> the recovery room.

> Where are you having your AVS? Who is your surgeon. Would be good to

> share this information as we are all going thru this.

> Here is more info:

> http://www.endocrinesurgeon.co.uk/adrenals/adrenals10.html

>  

>  

>  

> Farah

>

>

> annc999 <annc999@...> wrote:

>

> I have had an adrenal " adenoma " since 2002, along with sudden HBP and

> low potassium problems which started in about 2000.  My doctor has

> suspected Conn's, but after recent aldosterone blood result of 18.9

> and aldosterone/renin ratio of 90, he wants me to have adrenal vein

> sampling.

>

> I assume he is going for a diagnosis of Primary Aldosteronism, but I

> am concerned that there may be more to it.  I have appointments with

> the interventional radiologist AND a surgeon over the next two weeks.

>

> My questions are:

>

> What is the protocol for diagnosing PA (Conn's)?  Should't I have

> more blood and urine tests BEFORE I have AVS?

>

> Anyone with similar experience, please write back.  I am especially

> frightened to have the AVS done, as I understand it is not all too

> common.  I have already done research on interventional radiologists,

> and the one I will be seeing is very good with excellent credentials,

> as well as the surgeon.

>

> Will they likely remove only the tumor or the adrenal gland itself?

>

> Thanks for any information you can give.

>

>

>

>

>

>

[Guest guest]

Because of my own case, this comment interests me almost most of all I

have seen because this second doctor said the same thing Quan Duh &

Blake Tyrell at UCSF said to me--that their NEW approach (ca. 2004)

includes making surgery a very rare event it is the ONLY option left,

because, to quote Dr. Duh, " most tumors end up being part of a system

of aldo overproduction, and the surgery only cures a small number of

cases. Most pts have bilateral hyperplasia and/or embryonic adrenal

tissue proliferations throughout the body OR OTHER AS YET UNIDENTIFIED

CAUSES which continue to overproduce even after one gland is gone, and

if we take both, more than half our patients end up still having PA and

are also addisonian simultaneously. We don't want to cause a second

more life-threatening disease. "

This from a surgery chief!

I am still vibrating about these visits, in the wake of a useless

$30,000 (all costs) right adrenalectomy done somewhere else where all

the doctors believed a 1 cm tumor on a CT scan (the path report showed

a second larger tumor which didn't show on the scan, but still didn't

account for my PA), with plenty of bloodwork, Hx and 24-hour urines

were enough, but didn't tell me I could have AVS & leave the benign

tumor alone if it wasn't causing the aldo overproduction. Just control

PA with medicine. This approach (including AVS prior to any surgery)

was, it seems, favored until the late 90's, and has come back. They

never said a word about any of this, and I asked.

Dave

On Apr 15, 2005, at 12:48 PM, Farah Rahbar wrote:

> I thought once they start you on spiro, that you should not be taking

> any potassium pills or foods that are high on potassium. At least

> according to the labels on my pills thats what it says.

> From what I read from you guys's emails, it appears that you all like

> Inspra more than spiro.

> Good info to know. I'll see!

> Farah

>

> Malotky <leslie@...> wrote:

> I think the " protocol " varies with the experience of the Dr.  My first

> nephrologist never considered PA, my second nephrologist recognized it

> right away, and confirmed high aldo and low K through blood tests, but

> didn't pursue AVS because he surgery doesn't usually fix it anyway. 

> He gave me a low dose of Spiro, but wanted me to continue taking other

> drugs.  I refered myself to an endocrinologist after doing more

> research on my own and he did the 24 urine test, CAT scan and AVS

> (each one scheduled as soon as the previous one's results were

> received).  He got me off of all other BP meds and got me stable on

> just Spiro and K (I was taking 14 pills daily).  Dr. Grim is the first

> one who showed interest in trying Inspra on me.

>  

>

[Guest guest]

Good description of the problem but cant seem to find any data on embroyonic adrenal tissue.

Also what I have been saying for about 25 years. Still it is very satifying to cure pt by removing the single adenoma. I stll call it the golden chalice for us HTN Drs. The tumors are a bight gold in color.

In a message dated 4/15/05 19:08:01, dave@... writes:

Because of my own case, this comment interests me almost most of all I

have seen because this second doctor said the same thing Quan Duh &

Blake Tyrell at UCSF said to me--that their NEW approach (ca. 2004)

includes making surgery a very rare event it is the ONLY option left,

because, to quote Dr. Duh, "most tumors end up being part of a system

of aldo overproduction, and the surgery only cures a small number of

cases.  Most pts have bilateral hyperplasia and/or embryonic adrenal

tissue proliferations throughout the body OR OTHER AS YET UNIDENTIFIED

CAUSES which continue to overproduce even after one gland is gone, and

if we take both, more than half our patients end up still having PA and

are also addisonian simultaneously.  We don't want to cause a second

more life-threatening disease."

This from a surgery chief!

I am still vibrating about these visits, in the wake of a useless

$30,000 (all costs) right adrenalectomy done somewhere else where all

the doctors believed a 1 cm tumor on a CT scan (the path report showed

a second larger tumor which didn't show on the scan, but still didn't

account for my PA), with plenty of bloodwork, Hx and 24-hour urines

were enough, but didn't tell me I could have AVS & leave the benign

tumor alone if it wasn't causing the aldo overproduction.  Just control

PA with medicine.  This approach (including AVS prior to any surgery)

was, it seems, favored until the late 90's, and has come back.  They

never said a word about any of this, and I asked.

Dave

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Yes, it certainly can be. It helps to have so many people to talk to in this group setting who have been through it. Best wishes to you.

Re: Protocol for Diagnosing Conn's

Thanks, . I don't know why I am more afraid of the AVS than if I had to have the adrenal surgery. It's all a bit overwhelming. Ann> > > > I have had an adrenal "adenoma" since 2002, along with sudden HBP > and > > low potassium problems which started in about 2000. My doctor has > > suspected Conn's, but after recent aldosterone blood result of > 18.9 > > and aldosterone/renin ratio of 90, he wants me to have adrenal > vein > > sampling.> > > > I assume he is going for a diagnosis of Primary Aldosteronism, but > I > > am concerned that there may be more to it. I have appointments > with > > the interventional radiologist AND a surgeon over the next two > weeks.> > > > My questions are:> > > > What is the protocol for diagnosing PA (Conn's)? Should't I have > > more blood and urine tests BEFORE I have AVS?> > > > Anyone with similar experience, please write back. I am > especially > > frightened to have the AVS done, as I understand it is not all too > > common. I have already done research on interventional > radiologists, > > and the one I will be seeing is very good with excellent > credentials, > > as well as the surgeon.> > > > Will they likely remove only the tumor or the adrenal gland itself?> > > > Thanks for any information you can give.> > > > > > > > > > > > ---------------------------------> >

[Guest guest]

On Apr 17, 2005, at 10:00 AM, lowerbp2@... wrote:

> Good description of the problem but cant seem to find any data on

> embroyonic adrenal tissue.

>

> Also what I have been saying for about 25 years.  Still it is very

> satifying to cure pt by removing the single adenoma.  I stll call it

> the golden chalice for us HTN Drs.  The tumors are a bight gold in

> color.

Yes, and you'll recall I had that, plus the diffuse one in the

glomurosa, and general hyperplasia--all 3--in the post-op path report.

It didn't cure me and that showed how the CT scans only revealed 1/3 of

the problem in that single gland. Left one remaining - nothing shows

up, but still PA.

Yes, too, I met a couple pts who had their PA entirely ameliorated by

the adrenalectomy long after our surgeries (there were five of us in

one recovery ward), so it is very satisfying. Jay Harness, the

supervising surgeon (whose new book on non-invasive breast tumor

excision is doing very well) loves to write letters with the term

" completely cured. " He is an old friend, and I can't deny him his joy.

I sure wish I was one of them.

Dave

> In a message dated 4/15/05 19:08:01, dave@... writes:

>

>

>

> Because of my own case, this comment interests me almost most of all I

> have seen because this second doctor said the same thing Quan Duh &

> Blake Tyrell at UCSF said to me--that their NEW approach (ca. 2004)

> includes making surgery a very rare event it is the ONLY option left,

> because, to quote Dr. Duh, " most tumors end up being part of a system

> of aldo overproduction, and the surgery only cures a small number of

> cases.  Most pts have bilateral hyperplasia and/or embryonic adrenal

> tissue proliferations throughout the body OR OTHER AS YET UNIDENTIFIED

> CAUSES which continue to overproduce even after one gland is gone, and

> if we take both, more than half our patients end up still having PA

> and

> are also addisonian simultaneously.  We don't want to cause a second

> more life-threatening disease. "

>

> This from a surgery chief!

>

> I am still vibrating about these visits, in the wake of a useless

> $30,000 (all costs) right adrenalectomy done somewhere else where all

> the doctors believed a 1 cm tumor on a CT scan (the path report showed

> a second larger tumor which didn't show on the scan, but still didn't

> account for my PA), with plenty of bloodwork, Hx and 24-hour urines

> were enough, but didn't tell me I could have AVS & leave the benign

> tumor alone if it wasn't causing the aldo overproduction.  Just

> control

> PA with medicine.  This approach (including AVS prior to any surgery)

> was, it seems, favored until the late 90's, and has come back.  They

> never said a word about any of this, and I asked.

>

> Dave

>

[Guest guest]

I can certainly understand your frustration! My problem with my second Dr. was that he made the statement that surgery wouldn't help me after having done nothing more than simple blood work. My endo ordered the 24 hr urine, saw discrete 1 cm tumors on both adrenals and got the results of the AVS before telling me that surgery wouldn't help me. In both your case and the case of my second Dr., it seems that there just wasn't enough evidence to determine that surgery was or was not a good option. I would be shocked by any Dr. recommending the removal of both adrenals without significant evidence that patient's current state was worse than having s (although I believe there are a few in this group where this was the case)... I work with a woman whose son has a version of congenital adrenal hyperplasia (with a specific enzyme deficiency) which results in his adrenals producing no aldo or cortisol. From what I've seen them go through, I can understand why one would want to avoid surgically creating a similar condition unless clearly indicated. I don't envy those who have had to have both removed.

Re: Protocol for Diagnosing Conn's

Because of my own case, this comment interests me almost most of all I have seen because this second doctor said the same thing Quan Duh & Blake Tyrell at UCSF said to me--that their NEW approach (ca. 2004) includes making surgery a very rare event it is the ONLY option left, because, to quote Dr. Duh, "most tumors end up being part of a system of aldo overproduction, and the surgery only cures a small number of cases. Most pts have bilateral hyperplasia and/or embryonic adrenal tissue proliferations throughout the body OR OTHER AS YET UNIDENTIFIED CAUSES which continue to overproduce even after one gland is gone, and if we take both, more than half our patients end up still having PA and are also addisonian simultaneously. We don't want to cause a second more life-threatening disease."This from a surgery chief!I am still vibrating about these visits, in the wake of a useless $30,000 (all costs) right adrenalectomy done somewhere else where all the doctors believed a 1 cm tumor on a CT scan (the path report showed a second larger tumor which didn't show on the scan, but still didn't account for my PA), with plenty of bloodwork, Hx and 24-hour urines were enough, but didn't tell me I could have AVS & leave the benign tumor alone if it wasn't causing the aldo overproduction. Just control PA with medicine. This approach (including AVS prior to any surgery) was, it seems, favored until the late 90's, and has come back. They never said a word about any of this, and I asked.DaveOn Apr 15, 2005, at 12:48 PM, Farah Rahbar wrote:

I thought once they start you on spiro, that you should not be taking any potassium pills or foods that are high on potassium. At least according to the labels on my pills thats what it says.From what I read from you guys's emails, it appears that you all like Inspra more than spiro.Good info to know. I'll see!Farah Malotky <leslie@...> wrote:I think the "protocol" varies with the experience of the Dr. My first nephrologist never considered PA, my second nephrologist recognized it right away, and confirmed high aldo and low K through blood tests, but didn't pursue AVS because he surgery doesn't usually fix it anyway. He gave me a low dose of Spiro, but wanted me to continue taking other drugs. I refered myself to an endocrinologist after doing more research on my own and he did the 24 urine test, CAT scan and AVS (each one scheduled as soon as the previous one's results were received). He got me off of all other BP meds and got me stable on just Spiro and K (I was taking 14 pills daily). Dr. Grim is the first one who showed interest in trying Inspra on me.

[Guest guest]

In a message dated 4/17/05 16:28:13, leslie@... writes:

I thought once they start you on spiro, that you should not be taking any potassium pills or foods that are high on potassium. At least according to the labels on my pills thats what it says.

From what I read from you guys's emails, it appears that you all like Inspra more than spiro.

Good info to know. I'll see!

depends on how much aldo you are making and how much sprio is blocking. Need to measaure K.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Dr. Grim, I found several articles on ectopic adrenal tissue, would this be the same thing?

Re: Protocol for Diagnosing Conn's

Good description of the problem but cant seem to find any data on embroyonic adrenal tissue. Also what I have been saying for about 25 years. Still it is very satifying to cure pt by removing the single adenoma. I stll call it the golden chalice for us HTN Drs. The tumors are a bight gold in color. In a message dated 4/15/05 19:08:01, dave@... writes:

Because of my own case, this comment interests me almost most of all Ihave seen because this second doctor said the same thing Quan Duh & Blake Tyrell at UCSF said to me--that their NEW approach (ca. 2004)includes making surgery a very rare event it is the ONLY option left,because, to quote Dr. Duh, "most tumors end up being part of a systemof aldo overproduction, and the surgery only cures a small number ofcases. Most pts have bilateral hyperplasia and/or embryonic adrenaltissue proliferations throughout the body OR OTHER AS YET UNIDENTIFIEDCAUSES which continue to overproduce even after one gland is gone, andif we take both, more than half our patients end up still having PA andare also addisonian simultaneously. We don't want to cause a secondmore life-threatening disease."This from a surgery chief!I am still vibrating about these visits, in the wake of a useless$30,000 (all costs) right adrenalectomy done somewhere else where allthe doctors believed a 1 cm tumor on a CT scan (the path report showeda second larger tumor which didn't show on the scan, but still didn'taccount for my PA), with plenty of bloodwork, Hx and 24-hour urineswere enough, but didn't tell me I could have AVS & leave the benigntumor alone if it wasn't causing the aldo overproduction. Just controlPA with medicine. This approach (including AVS prior to any surgery)was, it seems, favored until the late 90's, and has come back. Theynever said a word about any of this, and I asked.DaveMay your pressure be low!Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHSClinical Professor of Medicine and EpidemiologyDirector, Hypertension Diagnosis and Treatment CenterBoard Certified in Internal Medicine, Geriatrics and HypertensionPublished over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.Listed in Best Doctors in AmericaSpecializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora