My Story

[Guest guest]

Hi Grandma K,

I came across your story and website a few months back and you did say you were being investigated for Conn's. You mean you still haven't had a diagnosis confirmed yet?

Since I last corresponded with you, I've had an adrenalectomy. The scan revealed a tumor in my right adrenal and my response to spironolactone enabled us to proceed with surgery. Unfortunately, after my op I was still feeling no improvement and test results showed that my aldosterone level was still almost as high as pre-op and I was still low on potassium. Turns outit's mt LEFT adrenal that's hyperplasic and the tumor was incidental! I'd read that this happens though rarely and unfortunately, it happened to me. I regret now that I did not have that intravenous scan (or whatever it's called) to determine if my right adrenal was the culprit before removing it, The do explained it to me but the risks for me since I am a CVA case made me decide against it.

I'm surprised, Grandma K, that after all this time and the tests you've gone through that yout docs haven't settled on one illnes yet. Let us know if you do, indeed, have Conn's.

Elaine

grandmak_ca wrote:

Hi,My name is GrandmaK but I also am known as Widebertha. I was diagnosed with Graves Disease in 1998 after 8 years of horrendous symptoms. I was naive and dumb at that time and submitted myself to a dose of Radio Active Iodine - the worst mistake I have ever made. I was told by the endocrinologist that after RAI I would take a little pill every day for the rest of my life and I would regain my health! Instead my health has been declining. My story is in diary form at http://www.notovertillthefatladysings.comAt the moment I am being investigated for s and Conn's. Quite frankly the doctors I am seeing here in Canada do not have a clue what they are doing. I correspond by email with Dr. Ted Friedman in California. He suspects I have s and Hashimotos.I am seeing a homeopathic doctor next week. He does extensive testing and sends all his labs to the US to be processed. Maybe I will get some answers from him.Take CareWidebertha (GrandmaK)

[Guest guest]

Hello, Rae. I'm new to this group too, and I live in Medford Oregon. Who is this doctor you speak

of moving to Portland? I had a longitudinal myotomy in 1985. It "only" lasted

5 years before old symptoms started creeping back.

[Guest guest]

Hi ,

He will be in the Portland area is January--Dr. Mirhej. PLEASE look him up--he CAN help you!

Rae

Re: Re: My Story

Hello, Rae. I'm new to this group too, and I live in Medford Oregon. Who is this doctor you speak of moving to Portland? I had a longitudinal myotomy in 1985. It "only" lasted 5 years before old symptoms started creeping back.

[Guest guest]

Hi Jen 2,

Wow....that was quite a story. Where do you live? I sure would inquire when

you make an appointment with a new Rheumatologist if he/she has other

patients with Stills or is acquainted with it in any way. We have brochures

here that describe and explain Stills perfectly and it would be nice for you

to bring one with you to your next appointment. I just went and checked to

see if I brought any with me to California and I do have a few extra so if

you would like to give me your address, I'll get a couple out to you in

today's mail. I like to keep some with me just in case I need to do some

explaining about Stills. Jen 2, I am sixty-one years of age so you can see

that Stills attacks people of all ages. When I am in my " flares " I lose

weight also. I can't eat anything and have to force myself to chew on an

apple or some graham crackers. That's pretty much my diet when I am having

an attack. A chocolate soda every night is great. It seems like warm or hot

food repels me. Maybe it's the fevers.

I sure would start some medication soon, though. No one knew what was wrong

with me for about five years and I went to MANY doctors just like you are

doing. Mayo Clinic was my savior!!!!!!!! I don't know your where abouts but

you might want to look into Mayo if you are not satisfied with your

Rheumatologist. I flew from California to Mayo as I was just not getting any

help from my doctors. At least Mayo can start you on some medications until

you find the right Rheumatologist.

Let me know if I can be of any help.

xxoo

Ca. Carmen

[Guest guest]

Dear K.

Hi, my name is Lorie and I am from Seattle. I read your story and felt like

I was looking into a mirror of my life with Stills. I got sick on August 1st

of 2002 and I am still recouping, or as much as a stills patient can. My

Infectious Disease doc feels that what I have is stills and sticks by that

diagnosis, but my rheum doc is not convinced yet, she wanted to observe me

for a month before she starts any medicines. I did take prednisone for 2

months and felt great, but unfortuantly it really made my diabetes bad so I

am now just doing pain control with darvocet, which I have to take 2-3 at a

time to get any relief. Hang in there, this is a disease that can only be

diagnosed by a process of elimination and it can take forever. We are here

for you to vent to, we are a big shoulder you can cry on, and we are just one

big happy family that continues to grow everyday. Feel free to e-mail me

personally.

Take extra good care of yourself, when your body tells you it has had enough,

don't push it. Hope you get feeling better soon.

Lorie in Seattle

[Guest guest]

I was " lucky " in having only one adrenal gland affected by a tumour. The

worst part is not knowing - once you have a diagnosis you have something to

fight.

Which part of the world are you living in? My guess is you are in the USA

or Canada as you saw an endocrinologist in his office. In Europe you would

always be seen in a large specialist hospital for this type of problem. I'm

asking as treatment varies from country to country and members of the group

may live near enough to you to offer local advice.

The main thing is to stay very positive. If one side is affected then

surgery is very effective. If both sides are affected you do have more to

cope with but members of this list can give you lots of advice as to

coping. Spironolactone does have some drastic side effects in some people -

but you may not be badly affected. Inspra is on the horizon and we all hope

there is a solution with fewer side effects just waiting for the drug

company to release it.

Anyway let us know who you get on and use the list for support and advice...

Helen in Scotland when it is grey and overcast but not as cold as yesterday.

Original Message:

-----------------

From: Royden Forsythe rjf_at_fts@...

Date: Tue, 25 Nov 2003 20:29:53 -0000

hyperaldosteronism

Subject: My story

Hello friends! I am new to the group and thought I would tell my

story so far. I am a 44 year old male and was diagnosed with high

blood pressure two years ago, and put on a beta blocker (atenolol)

due to also having mitral valve prolapse, discovered at the same

time. In February of this year, I was diagnosed with low serum

potassium. After several more blood and urine tests with increasing

potassium supplementation and no response, I was sent to a

specialist, who suspected hyperaldosteronism. He partially

confirmed that with more urine tests. A CAT scan a few weeks ago

showed enlargement of both adrenal glands (bilateral hyperplasia).

After an office visit with an endocrinologist and a salt-loaded diet

followed by a 24-hr urine test, I was confirmed with primary

hyperaldosteronism, and we took the next step. I went into the

hospital on Friday morning for an invasive test (blood sampling at

the glands via catheters) that will hopefully determine which

adrenal gland is the culprit. My hope is that they discover the

problem in just one side, which would lead to surgery at a later

time, and removal of the problem. The alternative, if they find the

problem in both glands, as many of you know would mean

spironolactone and its nasty side affects. The test was longer than

expected, I was at the hospital from 6 to 2:30. They had trouble

finding a vein into the gland on the right side. They had to start

another catheter in my neck and were still not totally successful -

they got a blood sample but not exactly from where they wanted. The

results are currently at the lab, we should know in a few days. If

it turns out I have to manage with drugs, I am hoping that this new

Inspra will be a blessing. I'll report when I hear about my lab

work. Anyone have similar stories or advice for a newbie all of

this?

Jim

[Guest guest]

In a message dated 11/25/03 4:11:44 PM, rjf_at_fts@... writes:

Hello friends!  I am new to the group and thought I would tell my

story so far.  I am a 44 year old male and was diagnosed with high

blood pressure two years ago, and put on a beta blocker (atenolol)

due to also having mitral valve prolapse, discovered at the same

time.  In February of this year, I was diagnosed with low serum

potassium.  After several more blood and urine tests with increasing

potassium supplementation and no response, I was sent to a

specialist, who suspected hyperaldosteronism.  He partially

confirmed that with more urine tests.  A CAT scan a few weeks ago

showed enlargement of both adrenal glands (bilateral hyperplasia). 

After an office visit with an endocrinologist and a salt-loaded diet

followed by a 24-hr urine test, I was confirmed with primary

hyperaldosteronism, and we took the next step. I went into the

hospital on Friday morning for an invasive test (blood sampling at

the glands via catheters) that will hopefully determine which

adrenal gland is the culprit.  My hope is that they discover the

problem in just one side, which would lead to surgery at a later

time, and removal of the problem.  The alternative, if they find the

problem in both glands, as many of you know would mean

spironolactone and its nasty side affects. The test was longer than

expected, I was at the hospital from 6 to 2:30.  They had trouble

finding a vein into the gland on the right side.  They had to start

another catheter in my neck and were still not totally successful -

they got a blood sample but not exactly from where they wanted.  The

results are currently at the lab, we should know in a few days.  If

it turns out I have to manage with drugs, I am hoping that this new

Inspra will be a blessing.  I'll report when I hear about my lab

work.  Anyone have similar stories or advice for a newbie all of

this?

Jim

congrats on having the diagnosis made relatively quickly.

It is not unusual in most places to not be able to get blood from the right adrenal. This is very skill and experience dependent and unless your raidologist has done a lot of these they will almost always have a problem.

I hope the study was done with ACTH stimulation and corisol and aldo were both measured.

If you BP can be controlled with meds this is the best approah and in most cases this is possible exp with spironolactone. I would also get the DASH diet and work on that to minimize the need for meds.

Trust you are also taking your home BP and working on lwering the salt intake a la DASH.

Is there any family history of this problem? Esp low K or early stroke?

You should be tested for GRA as well-this is a genetic test to see if you have one of the genetic forms of this problem. This does not help treatment but if it is familial then all of your first degree relatives should be tested as well as about 50% will also have the problem.

Keep us posted

you may also want to visit our group on BP in general

bloodpressureline

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

Hi Helen,

Thanks for the advice and encouragement. I am in Cincinnati, Ohio.

I'd love to visit Scotland someday, my distant ancestors are from

there (my grandma added the E to Forsyth for " good luck " , so far I'd

say I'd prefer it without!).

Best regards,

Jim

>

> I was " lucky " in having only one adrenal gland affected by a

tumour. The

> worst part is not knowing - once you have a diagnosis you have

something to

> fight.

>

> Which part of the world are you living in? My guess is you are in

the USA

> or Canada as you saw an endocrinologist in his office. In Europe

you would

> always be seen in a large specialist hospital for this type of

problem. I'm

> asking as treatment varies from country to country and members of

the group

> may live near enough to you to offer local advice.

>

> The main thing is to stay very positive. If one side is affected

then

> surgery is very effective. If both sides are affected you do have

more to

> cope with but members of this list can give you lots of advice as

to

> coping. Spironolactone does have some drastic side effects in some

people -

> but you may not be badly affected. Inspra is on the horizon and we

all hope

> there is a solution with fewer side effects just waiting for the

drug

> company to release it.

>

> Anyway let us know who you get on and use the list for support and

advice...

>

> Helen in Scotland when it is grey and overcast but not as cold as

yesterday.

>

>

>

> Original Message:

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

> From: Royden Forsythe rjf_at_fts@y...

> Date: Tue, 25 Nov 2003 20:29:53 -0000

> hyperaldosteronism

> Subject: My story

>

>

> Hello friends! I am new to the group and thought I would tell my

> story so far. I am a 44 year old male and was diagnosed with high

> blood pressure two years ago, and put on a beta blocker (atenolol)

> due to also having mitral valve prolapse, discovered at the same

> time. In February of this year, I was diagnosed with low serum

> potassium. After several more blood and urine tests with

increasing

> potassium supplementation and no response, I was sent to a

> specialist, who suspected hyperaldosteronism. He partially

> confirmed that with more urine tests. A CAT scan a few weeks ago

> showed enlargement of both adrenal glands (bilateral

hyperplasia).

> After an office visit with an endocrinologist and a salt-loaded

diet

> followed by a 24-hr urine test, I was confirmed with primary

> hyperaldosteronism, and we took the next step. I went into the

> hospital on Friday morning for an invasive test (blood sampling at

> the glands via catheters) that will hopefully determine which

> adrenal gland is the culprit. My hope is that they discover the

> problem in just one side, which would lead to surgery at a later

> time, and removal of the problem. The alternative, if they find

the

> problem in both glands, as many of you know would mean

> spironolactone and its nasty side affects. The test was longer

than

> expected, I was at the hospital from 6 to 2:30. They had trouble

> finding a vein into the gland on the right side. They had to

start

> another catheter in my neck and were still not totally successful -

> they got a blood sample but not exactly from where they wanted.

The

> results are currently at the lab, we should know in a few days.

If

> it turns out I have to manage with drugs, I am hoping that this

new

> Inspra will be a blessing. I'll report when I hear about my lab

> work. Anyone have similar stories or advice for a newbie all of

> this?

>

> Jim

>

>

>

>

[Guest guest]

> [snip]

>

> congrats on having the diagnosis made relatively quickly.

>

Thanks!

> It is not unusual in most places to not be able to get blood from

the right

> adrenal. This is very skill and experience dependent and unless

your

> raidologist has done a lot of these they will almost always have

a problem.

>

Yes, I see that now, after reading this newsgroup. Will this

significantly affect the accuracy?

> I hope the study was done with ACTH stimulation and corisol and

aldo were

> both measured.

>

I do not know about the ACTH, but I do recall hearing that cortisol

and aldosterone were both to be measured and ratio done.

> If you BP can be controlled with meds this is the best approah and

in most

> cases this is possible exp with spironolactone. I would also get

the DASH diet

> and work on that to minimize the need for meds.

>

BP is currently in the 130s over 70s, via atenolol 100 mg and

norvasc 5 mg, and I am not on spiro. Where can I get more info on

DASH diet? I have been on low salt diet (< 2000 mg daily) since BP

rose two years ago.

> Trust you are also taking your home BP and working on lwering the

salt intake

> a la DASH.

>

Yes, I regularly check BP at home.

> Is there any family history of this problem? Esp low K or early

stroke?

>

Low K, yes. Stroke, not sure, I'll ask. My mom did just have a TIA

earlier this year - she is 83 years old.

> You should be tested for GRA as well-this is a genetic test to see

if you

> have one of the genetic forms of this problem. This does not

help treatment but

> if it is familial then all of your first degree relatives should

be tested as

> well as about 50% will also have the problem.

>

OK, thanks for that, I'll ask the doc about this.

> Keep us posted

>

> you may also want to visit our group on BP in general

>

> bloodpressureline

>

>

Thanks for the help!

Regards,

Jim

[Guest guest]

If they do both aldo and cortisol results should be OK, but would be happy to review them with you when they get back.

The advantage of ACTH is that it controls the level during the cath as ACTH and cortisol can vary markedly during the cath esp if it takes a long time to get each side as it did in your case. By kicking up the cortisol level you can be certain if the sample came from a vein draining the adrenal.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

Google DASH diet

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

> Google DASH diet

>

Found it, thanks.

[Guest guest]

Jim,

Hi and welcome. I had hyperaldostronism as a small child and now my

daughter (3) does. I had both my adrenals removed through 2 seperate

surgeries. Make sure the doctors identify the cause of the PA. As Dr

Grim said there is a wonederful genetic testing that can be done for

GRA through Brigham and Womens hospital. Dr Lifton is in charge of

the study. I don't know if you have been able to find out much about

GRA yet, but if your interested I can refer you to many great

resources as my daughter and I were tested for it. By the way it

stands for Gluco-corticoid remedial aldostronism. It can be

supressed in many cases with dexamethesone. There is also one other

genetic cause reffered to as familial hyperaldostronism type II (me

and my daughter have this one). Another thing you should know is

that like the doctor said there may be a history of premature stroke

or heart attack in your family but there may also be a lack of

children who have lived to adulthood on one side of your family. Not

too long ago it was not uncommon for children to die and it really

did not matter what caused the death they just did not survive. You

may also be the first in the genetic mutation. All of this is

important only if it is a genetic mutation of course. If it is it

is autosomal dominate and has the likleyhood of being passed to your

children.

It does sound like there is a good likleyhood that it is on both

sides. Indicating that it may in fact be genetic. Even if one comes

back way higher than the other then it still may not come into

range. You have to decide how much is too much meds. My daughter

came out 7000+ on the left and 84 on the right and the normals for a

3 year old are 3-39. She had the left adrenal removed 3 weeks ago

and the other side is steadily producing more and more aldosterone

and her BP is going higher and higher. We saw her surgon and he is

disappointed that the surgery did was not a sucess. They will

probobly be scheduling another surgery to remove the right adrenal

after the new year. The doctors will rarely take both adrenals in

adults unless there is some cushings involvement. I just wanted to

let you know that there are others like you out there. We are also

in the middle of working out my daughters treatment so I also

understand the stress of illness also. I wish you luck. W.

> Hello friends! I am new to the group and thought I would tell my

> story so far. I am a 44 year old male and was diagnosed with high

> blood pressure two years ago, and put on a beta blocker (atenolol)

> due to also having mitral valve prolapse, discovered at the same

> time. In February of this year, I was diagnosed with low serum

> potassium. After several more blood and urine tests with

increasing

> potassium supplementation and no response, I was sent to a

> specialist, who suspected hyperaldosteronism. He partially

> confirmed that with more urine tests. A CAT scan a few weeks ago

> showed enlargement of both adrenal glands (bilateral hyperplasia).

> After an office visit with an endocrinologist and a salt-loaded

diet

> followed by a 24-hr urine test, I was confirmed with primary

> hyperaldosteronism, and we took the next step. I went into the

> hospital on Friday morning for an invasive test (blood sampling at

> the glands via catheters) that will hopefully determine which

> adrenal gland is the culprit. My hope is that they discover the

> problem in just one side, which would lead to surgery at a later

> time, and removal of the problem. The alternative, if they find

the

> problem in both glands, as many of you know would mean

> spironolactone and its nasty side affects. The test was longer than

> expected, I was at the hospital from 6 to 2:30. They had trouble

> finding a vein into the gland on the right side. They had to start

> another catheter in my neck and were still not totally successful -

> they got a blood sample but not exactly from where they wanted.

The

> results are currently at the lab, we should know in a few days. If

> it turns out I have to manage with drugs, I am hoping that this new

> Inspra will be a blessing. I'll report when I hear about my lab

> work. Anyone have similar stories or advice for a newbie all of

> this?

>

> Jim

[Guest guest]

In a message dated 12/10/03 10:02:25 AM, rjf_at_fts@... writes:

> If they do both aldo and cortisol results should be OK,

> but would be happy to

> review them with you when they get back.  

>

> The advantage of ACTH is that it controls the level during the

> cath as ACTH

> and cortisol can vary markedly during the cath esp if it takes a

> long time to

> get each side as it did in your case.   By kicking up the cortisol

> level you

> can be certain if the sample came from a vein draining the

> adrenal.  

>

My blood sampling test is done, and numbers are back. (Just a

reminder, I have bilateral hyperplasia, and we are trying to

determine if the excess aldo is coming from just one side.) 

Unfortunately, the radiologist was unable to get to the right

adrenal.  IVC measurements were cortisol 21, aldo 45; left adrenal

cortisol 77, aldo 62; right adrenal cortisol 10, aldo 59.  This was

done without ACTH stimulation, and the sample for the right adrenal

was taken after I was on the table for over 2 hours and trying both

from the groin and from the jugular.

Here is the way I like to list them

Site Time Cortisol Aldo Aldo./Cortisol Ratio

IVC 21 45 2.1

Left 77 62 .8

Right 10 59 5.9

 

The right adrenal is not likely an adrenal sample as the corticsol is so low. Most likely a small liver vein as the corisol is low. As you can see the cortisol form teh left is higher than the IVC which tells you that sample was from blood draining the left adrenal.

As so much time had elapsed between the IVC samples (I assume it was done first) and the right sample I would have requested another IVC sample at the end as stress can increase the cortisol.

In general I expect to see an adrenal sample of aldo many times higher than the IVC often by a factor of 100.

What other drugs were you on at the time of the sampling. Again the reason we always recommend sampling be done with ACTH infusion is that this controls the stimulation of the adrenal at a high level so you can be certain the blood was coming from the adrenal.

I would interpret this as not being good enough evidence to operate on either side.

How is your BP doing on what meds?

Have you been tested for GRA? an inherited form of PA that responds to very specific treatment but i the long term I usually use Dyazide and or Maxzide + what ever else is needed-with Spiro as long as it can be tolerated.

The endocrinologist says this

right adrenal was not a good sample and cannot recommend surgery

based on it.  He says the ratio (aldo to cortisol) has to be >4 for

a surgery rec.

I agree

My questions to the group are:

1. It appears to me the ratio on the left side is normal, so if that

is the case, can't we deduce that the right side is the problem?  Is

it more complex than that?

2. If these results are inconclusive, is it worth it to find a

radiologist who could get directly to the adrenal?  Or should I just

give up on that route?  The radiologist who did this work is

apparently one of the best in my area, but I do not know if he has

done many of these.  I heard its hard to get this right adrenal

sample, even before doing this test.  I guess I would like to know

just how hard (only a handful of experts can do it?), and is it

worth it to keep pushing to find someone who could do it.  I hate

going through the difficulties of another cath, so I want to know

what my chances are of getting better results if I try again.

If your BP and K can be controlled with drugs I would recommend that route.

3. Any recommendations for a radiologist near me that might do a

better job?  I am in southern Ohio (Cincinnati).

I dont know any but your endo should know the best one and this is not an easy procedure to do every time.

Here is what I would ask.

How many have you done?

Over how long?

How many times did you get both sides?>

How many patients have been cured or markedly improved based on your sampling?

Do you use ACTH stimulation before and during the procedure? If not why not?

Thanks,

Jim

[Guest guest]

> If they do both aldo and cortisol results should be OK,

> but would be happy to

> review them with you when they get back.

>

> The advantage of ACTH is that it controls the level during the

> cath as ACTH

> and cortisol can vary markedly during the cath esp if it takes a

> long time to

> get each side as it did in your case. By kicking up the cortisol

> level you

> can be certain if the sample came from a vein draining the

> adrenal.

>

My blood sampling test is done, and numbers are back. (Just a

reminder, I have bilateral hyperplasia, and we are trying to

determine if the excess aldo is coming from just one side.)

Unfortunately, the radiologist was unable to get to the right

adrenal. IVC measurements were cortisol 21, aldo 45; left adrenal

cortisol 77, aldo 62; right adrenal cortisol 10, aldo 59. This was

done without ACTH stimulation, and the sample for the right adrenal

was taken after I was on the table for over 2 hours and trying both

from the groin and from the jugular. The endocrinologist says this

right adrenal was not a good sample and cannot recommend surgery

based on it. He says the ratio (aldo to cortisol) has to be >4 for

a surgery rec.

My questions to the group are:

1. It appears to me the ratio on the left side is normal, so if that

is the case, can't we deduce that the right side is the problem? Is

it more complex than that?

2. If these results are inconclusive, is it worth it to find a

radiologist who could get directly to the adrenal? Or should I just

give up on that route? The radiologist who did this work is

apparently one of the best in my area, but I do not know if he has

done many of these. I heard its hard to get this right adrenal

sample, even before doing this test. I guess I would like to know

just how hard (only a handful of experts can do it?), and is it

worth it to keep pushing to find someone who could do it. I hate

going through the difficulties of another cath, so I want to know

what my chances are of getting better results if I try again.

3. Any recommendations for a radiologist near me that might do a

better job? I am in southern Ohio (Cincinnati).

Thanks,

Jim

[Guest guest]

>

> What other drugs were you on at the time of the sampling.

I was on atenolol 100 mg daily and norvasc 5 mg daily

> How is your BP doing on what meds?

BP is staying in the 130s over 70s

>

> Have you been tested for GRA? an inherited form of PA that

responds to very

> specific treatment but i the long term I usually use Dyazide and

or Maxzide +

> what ever else is needed-with Spiro as long as it can be

tolerated.

No, I have not, but I have asked my doc about testing for that. We

will discuss it when I see him next week.

> I dont know any but your endo should know the best one and this is

not an

> easy procedure to do every time.

>

> Here is what I would ask.

>

> How many have you done?

> Over how long?

> How many times did you get both sides?>

> How many patients have been cured or markedly improved based on

your

> sampling?

> Do you use ACTH stimulation before and during the procedure? If

not why

> not?

>

Thanks for the questions to ask. I'll bring these to the endo doc

when I see him next week.

Jim

[Guest guest]

>

> What other drugs were you on at the time of the sampling.

I was on atenolol 100 mg daily and norvasc 5 mg daily

> How is your BP doing on what meds?

BP is staying in the 130s over 70s

>

> Have you been tested for GRA? an inherited form of PA that

responds to very

> specific treatment but i the long term I usually use Dyazide and

or Maxzide +

> what ever else is needed-with Spiro as long as it can be

tolerated.

No, I have not, but I have asked my doc about testing for that. We

will discuss it when I see him next week.

> I dont know any but your endo should know the best one and this is

not an

> easy procedure to do every time.

>

> Here is what I would ask.

>

> How many have you done?

> Over how long?

> How many times did you get both sides?>

> How many patients have been cured or markedly improved based on

your

> sampling?

> Do you use ACTH stimulation before and during the procedure? If

not why

> not?

>

Thanks for the questions to ask. I'll bring these to the endo doc

when I see him next week.

Jim

[Guest guest]

In a message dated 12/16/03 15:21:50, tn_weldys@... writes:

(Spironolactone shows up as aldosterone)

Spironolactone does not show up as aldo in most modern assays. The most common problem is that It can increase aldo as it blocks the effect of aldo so sodium is lost. This turns on renin, AI and AII which stimulates the adrenal to make more aldo.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

In a message dated 12/16/03 15:21:50, tn_weldys@... writes:

(Spironolactone shows up as aldosterone)

Spironolactone does not show up as aldo in most modern assays. The most common problem is that It can increase aldo as it blocks the effect of aldo so sodium is lost. This turns on renin, AI and AII which stimulates the adrenal to make more aldo.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

Jim,

We are near Memphis TN and I don't know if you would consider that

too far to go or not but my daughters doc was really good. He is an

interventional radiologist with the University of TN. I believe that

if he was good enough to get it in a three year old he could get it

from you. His name is Dr Chimsuddin if your interested. He is an

adult doctor by the way not a peds doc. I would not trust the

results of that test you took. You look like it is not high at all

by that. If they are sure that they are not mistaken about the

hyperaldostronism then I would do it again. Also where did they do

the labs. According to my daughters endo there are only two labs in

the US qualified to do that test and only one can determinte the

difference between spironolactone and aldostrone in the results.

(Spironolactone shows up as aldostrone) I have the name of the lab

if you need it. W.

> > If they do both aldo and cortisol results should be OK,

> > but would be happy to

> > review them with you when they get back.

> >

> > The advantage of ACTH is that it controls the level during the

> > cath as ACTH

> > and cortisol can vary markedly during the cath esp if it takes a

> > long time to

> > get each side as it did in your case. By kicking up the cortisol

> > level you

> > can be certain if the sample came from a vein draining the

> > adrenal.

> >

>

>

> My blood sampling test is done, and numbers are back. (Just a

> reminder, I have bilateral hyperplasia, and we are trying to

> determine if the excess aldo is coming from just one side.)

> Unfortunately, the radiologist was unable to get to the right

> adrenal. IVC measurements were cortisol 21, aldo 45; left adrenal

> cortisol 77, aldo 62; right adrenal cortisol 10, aldo 59. This was

> done without ACTH stimulation, and the sample for the right adrenal

> was taken after I was on the table for over 2 hours and trying both

> from the groin and from the jugular. The endocrinologist says this

> right adrenal was not a good sample and cannot recommend surgery

> based on it. He says the ratio (aldo to cortisol) has to be >4 for

> a surgery rec.

>

> My questions to the group are:

>

> 1. It appears to me the ratio on the left side is normal, so if

that

> is the case, can't we deduce that the right side is the problem?

Is

> it more complex than that?

>

> 2. If these results are inconclusive, is it worth it to find a

> radiologist who could get directly to the adrenal? Or should I

just

> give up on that route? The radiologist who did this work is

> apparently one of the best in my area, but I do not know if he has

> done many of these. I heard its hard to get this right adrenal

> sample, even before doing this test. I guess I would like to know

> just how hard (only a handful of experts can do it?), and is it

> worth it to keep pushing to find someone who could do it. I hate

> going through the difficulties of another cath, so I want to know

> what my chances are of getting better results if I try again.

>

> 3. Any recommendations for a radiologist near me that might do a

> better job? I am in southern Ohio (Cincinnati).

>

> Thanks,

> Jim

[Guest guest]

Jim,

We are near Memphis TN and I don't know if you would consider that

too far to go or not but my daughters doc was really good. He is an

interventional radiologist with the University of TN. I believe that

if he was good enough to get it in a three year old he could get it

from you. His name is Dr Chimsuddin if your interested. He is an

adult doctor by the way not a peds doc. I would not trust the

results of that test you took. You look like it is not high at all

by that. If they are sure that they are not mistaken about the

hyperaldostronism then I would do it again. Also where did they do

the labs. According to my daughters endo there are only two labs in

the US qualified to do that test and only one can determinte the

difference between spironolactone and aldostrone in the results.

(Spironolactone shows up as aldostrone) I have the name of the lab

if you need it. W.

> > If they do both aldo and cortisol results should be OK,

> > but would be happy to

> > review them with you when they get back.

> >

> > The advantage of ACTH is that it controls the level during the

> > cath as ACTH

> > and cortisol can vary markedly during the cath esp if it takes a

> > long time to

> > get each side as it did in your case. By kicking up the cortisol

> > level you

> > can be certain if the sample came from a vein draining the

> > adrenal.

> >

>

>

> My blood sampling test is done, and numbers are back. (Just a

> reminder, I have bilateral hyperplasia, and we are trying to

> determine if the excess aldo is coming from just one side.)

> Unfortunately, the radiologist was unable to get to the right

> adrenal. IVC measurements were cortisol 21, aldo 45; left adrenal

> cortisol 77, aldo 62; right adrenal cortisol 10, aldo 59. This was

> done without ACTH stimulation, and the sample for the right adrenal

> was taken after I was on the table for over 2 hours and trying both

> from the groin and from the jugular. The endocrinologist says this

> right adrenal was not a good sample and cannot recommend surgery

> based on it. He says the ratio (aldo to cortisol) has to be >4 for

> a surgery rec.

>

> My questions to the group are:

>

> 1. It appears to me the ratio on the left side is normal, so if

that

> is the case, can't we deduce that the right side is the problem?

Is

> it more complex than that?

>

> 2. If these results are inconclusive, is it worth it to find a

> radiologist who could get directly to the adrenal? Or should I

just

> give up on that route? The radiologist who did this work is

> apparently one of the best in my area, but I do not know if he has

> done many of these. I heard its hard to get this right adrenal

> sample, even before doing this test. I guess I would like to know

> just how hard (only a handful of experts can do it?), and is it

> worth it to keep pushing to find someone who could do it. I hate

> going through the difficulties of another cath, so I want to know

> what my chances are of getting better results if I try again.

>

> 3. Any recommendations for a radiologist near me that might do a

> better job? I am in southern Ohio (Cincinnati).

>

> Thanks,

> Jim

[Guest guest]

Matbe im stupid but could u plz clarify this for me.

i was on spero when i had my adrenal sampeling at the u of m and wouldnt this have gave a wrong reading i still have the #s.

i guess im confused about your coment here

Thank Mark

Re: Re: My story

In a message dated 12/16/03 15:21:50, tn_weldys@... writes:

(Spironolactone shows up as aldosterone)Spironolactone does not show up as aldo in most modern assays. The most common problem is that It can increase aldo as it blocks the effect of aldo so sodium is lost. This turns on renin, AI and AII which stimulates the adrenal to make more aldo. May your pressure be low!CE Grim, BS (Chem/Math), MS (Biochem), MD.Professor of Medicine and EpidemiologyBoard Certified in Internal Medicine, Geriatrics and HypertensionPublished over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

Matbe im stupid but could u plz clarify this for me.

i was on spero when i had my adrenal sampeling at the u of m and wouldnt this have gave a wrong reading i still have the #s.

i guess im confused about your coment here

Thank Mark

Re: Re: My story

In a message dated 12/16/03 15:21:50, tn_weldys@... writes:

(Spironolactone shows up as aldosterone)Spironolactone does not show up as aldo in most modern assays. The most common problem is that It can increase aldo as it blocks the effect of aldo so sodium is lost. This turns on renin, AI and AII which stimulates the adrenal to make more aldo. May your pressure be low!CE Grim, BS (Chem/Math), MS (Biochem), MD.Professor of Medicine and EpidemiologyBoard Certified in Internal Medicine, Geriatrics and HypertensionPublished over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

In a message dated 12/17/03 0:37:42, anxioushouse@... writes:

Matbe im stupid but could u plz clarify this for me.

i was on spero when i had my adrenal sampeling at the u of m and wouldnt this have gave a wrong reading i still have the #s.

i guess im confused about your coment here

Thank Mark

It may have given a higher value from both sides but would not likely change the ratio of aldo/cortisol.

This is the reason I like to do the adrenal vein test before sspiro as it may take sevearl months for aldo to return back to normal once you are on it on the other hand if Inspra controls the BP or it can be controlled with other drugs one may not want to do adrenal vein sampling.

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

The results were sent to Mayo clinic for analysis, I believe, but

I'll ask about that.

They are definite on the hyperaldosteronism per blood and urine

testing that has been done. My blood pressure is high, my renin is

low, my aldosterone is high, my potassium is low - all the basic

symptoms are there. The left adrenal looks normal. If we can get a

good sample from the right, my endo thinks we will find the problem

there. But he just cannot recommend surgery without that positive

sample.

Jim in Cincinnati

> > > If they do both aldo and cortisol results should be OK,

> > > but would be happy to

> > > review them with you when they get back.

> > >

> > > The advantage of ACTH is that it controls the level during the

> > > cath as ACTH

> > > and cortisol can vary markedly during the cath esp if it takes

a

> > > long time to

> > > get each side as it did in your case. By kicking up the

cortisol

> > > level you

> > > can be certain if the sample came from a vein draining the

> > > adrenal.

> > >

> >

> >

> > My blood sampling test is done, and numbers are back. (Just a

> > reminder, I have bilateral hyperplasia, and we are trying to

> > determine if the excess aldo is coming from just one side.)

> > Unfortunately, the radiologist was unable to get to the right

> > adrenal. IVC measurements were cortisol 21, aldo 45; left

adrenal

> > cortisol 77, aldo 62; right adrenal cortisol 10, aldo 59. This

was

> > done without ACTH stimulation, and the sample for the right

adrenal

> > was taken after I was on the table for over 2 hours and trying

both

> > from the groin and from the jugular. The endocrinologist says

this

> > right adrenal was not a good sample and cannot recommend surgery

> > based on it. He says the ratio (aldo to cortisol) has to be >4

for

> > a surgery rec.

> >

> > My questions to the group are:

> >

> > 1. It appears to me the ratio on the left side is normal, so if

> that

> > is the case, can't we deduce that the right side is the

problem?

> Is

> > it more complex than that?

> >

> > 2. If these results are inconclusive, is it worth it to find a

> > radiologist who could get directly to the adrenal? Or should I

> just

> > give up on that route? The radiologist who did this work is

> > apparently one of the best in my area, but I do not know if he

has

> > done many of these. I heard its hard to get this right adrenal

> > sample, even before doing this test. I guess I would like to

know

> > just how hard (only a handful of experts can do it?), and is it

> > worth it to keep pushing to find someone who could do it. I

hate

> > going through the difficulties of another cath, so I want to

know

> > what my chances are of getting better results if I try again.

> >

> > 3. Any recommendations for a radiologist near me that might do a

> > better job? I am in southern Ohio (Cincinnati).

> >

> > Thanks,

> > Jim