Re: JC at NIC - Is it A/CPA?

[Guest guest]

Will look at it later this weekend.Genes are always involved in health and disease.CE Grim MDOn Apr 21, 2012, at 11:32 AM, wrote: Well, well, Well - Look what I just found: http://eje-online.org/content/164/4/447.full.pdf"Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype of primary aldosteronism."I thought I was wierd and now I find there at least 35 others out there in the world! (Pretty soon they will be telling me I'm "Normal" )Dr. Grim, any info/experience with it? I've got to read it a couple times and see if there any muted genes mentioned. Barbara Tatro, where are you when I need you?

[Guest guest]

You may need to up that number to 36 - I've had several " barely " high cortisol

readings - the endo did not think much of these results or of the non-supression

on the dex test (never repeated) indicating a non-pituitary source for cortisol

stimulation - Just because you don't blow the roof off with your numbers doesn't

mean you don't have an adrenal adenoma secreting cortisol - Periodic or episodic

" mild " cushings syndrome is becoming better documented - I hope she reads her

journals - somehow I doubt she does.

Like minor surgery - mild excess of a hormone is all in the perspective

>

>

> Well, well, Well - Look what I just found:

> http://eje-online.org/content/164/4/447.full.pdf

> <http://eje-online.org/content/164/4/447.full.pdf>

>

> " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> of primary aldosteronism. "

>

> I thought I was wierd and now I find there at least 35 others out there

> in the world! [] (Pretty soon they will be telling me I'm

> " Normal " [] )

>

> Dr. Grim, any info/experience with it? I've got to read it a couple

> times and see if there any muted genes mentioned. Barbara Tatro, where

> are you when I need you?

>

[Guest guest]

37 if you add me...

> >

> >

> > Well, well, Well - Look what I just found:

> > http://eje-online.org/content/164/4/447.full.pdf

> > <http://eje-online.org/content/164/4/447.full.pdf>

> >

> > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > of primary aldosteronism. "

> >

> > I thought I was wierd and now I find there at least 35 others out there

> > in the world! [] (Pretty soon they will be telling me I'm

> > " Normal " [] )

> >

> > Dr. Grim, any info/experience with it? I've got to read it a couple

> > times and see if there any muted genes mentioned. Barbara Tatro, where

> > are you when I need you?

> >

>

[Guest guest]

Whoa, Whoa - get in line! MaggieKat gets #36, she started this! I get #37, I

gave my gallon of blood! Looks like you may get #38! Here's to good testing and

proper resolution!

> >

> >

> > Well, well, Well - Look what I just found:

> > http://eje-online.org/content/164/4/447.full.pdf

> > <http://eje-online.org/content/164/4/447.full.pdf>

> >

> > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > of primary aldosteronism. "

> >

> > I thought I was wierd and now I find there at least 35 others out there

> > in the world! [] (Pretty soon they will be telling me I'm

> > " Normal " [] )

> >

> > Dr. Grim, any info/experience with it? I've got to read it a couple

> > times and see if there any muted genes mentioned. Barbara Tatro, where

> > are you when I need you?

> >

>

[Guest guest]

Whoa, Whoa - get in line! MaggieKat gets #36, she started this! I get #37, I

gave my gallon of blood! Looks like you may get #38! Here's to good testing and

proper resolution!

> >

> >

> > Well, well, Well - Look what I just found:

> > http://eje-online.org/content/164/4/447.full.pdf

> > <http://eje-online.org/content/164/4/447.full.pdf>

> >

> > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > of primary aldosteronism. "

> >

> > I thought I was wierd and now I find there at least 35 others out there

> > in the world! [] (Pretty soon they will be telling me I'm

> > " Normal " [] )

> >

> > Dr. Grim, any info/experience with it? I've got to read it a couple

> > times and see if there any muted genes mentioned. Barbara Tatro, where

> > are you when I need you?

> >

>

[Guest guest]

36 or 136 - Don't care - Just fix it

> > >

> > >

> > > Well, well, Well - Look what I just found:

> > > http://eje-online.org/content/164/4/447.full.pdf

> > > <http://eje-online.org/content/164/4/447.full.pdf>

> > >

> > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > > of primary aldosteronism. "

> > >

> > > I thought I was wierd and now I find there at least 35 others out there

> > > in the world! [] (Pretty soon they will be telling me I'm

> > > " Normal " [] )

> > >

> > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > times and see if there any muted genes mentioned. Barbara Tatro, where

> > > are you when I need you?

> > >

> >

>

[Guest guest]

36 or 136 - Don't care - Just fix it

> > >

> > >

> > > Well, well, Well - Look what I just found:

> > > http://eje-online.org/content/164/4/447.full.pdf

> > > <http://eje-online.org/content/164/4/447.full.pdf>

> > >

> > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > > of primary aldosteronism. "

> > >

> > > I thought I was wierd and now I find there at least 35 others out there

> > > in the world! [] (Pretty soon they will be telling me I'm

> > > " Normal " [] )

> > >

> > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > times and see if there any muted genes mentioned. Barbara Tatro, where

> > > are you when I need you?

> > >

> >

>

[Guest guest]

I hope you realize I was kidding with the number! I haven't gotten to the " fix

it " portion but would presume there should be some testing to make sure you are

headed in the right direction or hopefully there.

> > > >

> > > >

> > > > Well, well, Well - Look what I just found:

> > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > >

> > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > > > of primary aldosteronism. "

> > > >

> > > > I thought I was wierd and now I find there at least 35 others out there

> > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > " Normal " [] )

> > > >

> > > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > > times and see if there any muted genes mentioned. Barbara Tatro, where

> > > > are you when I need you?

> > > >

> > >

> >

>

[Guest guest]

I hope you realize I was kidding with the number! I haven't gotten to the " fix

it " portion but would presume there should be some testing to make sure you are

headed in the right direction or hopefully there.

> > > >

> > > >

> > > > Well, well, Well - Look what I just found:

> > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > >

> > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > > > of primary aldosteronism. "

> > > >

> > > > I thought I was wierd and now I find there at least 35 others out there

> > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > " Normal " [] )

> > > >

> > > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > > times and see if there any muted genes mentioned. Barbara Tatro, where

> > > > are you when I need you?

> > > >

> > >

> >

>

[Guest guest]

You could also have pseudo-Cushing's.Also it appears that Rx is the same with or without early Cush unless you have one side doing the cortisol and the other the aldo. That would be a bummer.'s So first issue is to document Conn's which is more straight forward and then if Rx of that does not improve problems consider added Cushing's but now one is really looking for zebras IMHO.Except under strict research conditions like at NIH.CE Grim MD On Apr 21, 2012, at 12:44 PM, lk.barns wrote: You may need to up that number to 36 - I've had several "barely" high cortisol readings - the endo did not think much of these results or of the non-supression on the dex test (never repeated) indicating a non-pituitary source for cortisol stimulation - Just because you don't blow the roof off with your numbers doesn't mean you don't have an adrenal adenoma secreting cortisol - Periodic or episodic "mild" cushings syndrome is becoming better documented - I hope she reads her journals - somehow I doubt she does. Like minor surgery - mild excess of a hormone is all in the perspective > > > Well, well, Well - Look what I just found: > http://eje-online.org/content/164/4/447.full.pdf > <http://eje-online.org/content/164/4/447.full.pdf> > > "Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype > of primary aldosteronism." > > I thought I was wierd and now I find there at least 35 others out there > in the world! [] (Pretty soon they will be telling me I'm > "Normal" [] ) > > Dr. Grim, any info/experience with it? I've got to read it a couple > times and see if there any muted genes mentioned. Barbara Tatro, where > are you when I need you? >

[Guest guest]

You could also have pseudo-Cushing's.Also it appears that Rx is the same with or without early Cush unless you have one side doing the cortisol and the other the aldo. That would be a bummer.'s So first issue is to document Conn's which is more straight forward and then if Rx of that does not improve problems consider added Cushing's but now one is really looking for zebras IMHO.Except under strict research conditions like at NIH.CE Grim MD On Apr 21, 2012, at 12:44 PM, lk.barns wrote: You may need to up that number to 36 - I've had several "barely" high cortisol readings - the endo did not think much of these results or of the non-supression on the dex test (never repeated) indicating a non-pituitary source for cortisol stimulation - Just because you don't blow the roof off with your numbers doesn't mean you don't have an adrenal adenoma secreting cortisol - Periodic or episodic "mild" cushings syndrome is becoming better documented - I hope she reads her journals - somehow I doubt she does. Like minor surgery - mild excess of a hormone is all in the perspective > > > Well, well, Well - Look what I just found: > http://eje-online.org/content/164/4/447.full.pdf > <http://eje-online.org/content/164/4/447.full.pdf> > > "Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype > of primary aldosteronism." > > I thought I was wierd and now I find there at least 35 others out there > in the world! [] (Pretty soon they will be telling me I'm > "Normal" [] ) > > Dr. Grim, any info/experience with it? I've got to read it a couple > times and see if there any muted genes mentioned. Barbara Tatro, where > are you when I need you? >

[Guest guest]

I would only rely on NIH testing in this area I think at this time.CE Grim MDOn Apr 21, 2012, at 5:48 PM, wrote: Whoa, Whoa - get in line! MaggieKat gets #36, she started this! I get #37, I gave my gallon of blood! Looks like you may get #38! Here's to good testing and proper resolution! > > > > > > Well, well, Well - Look what I just found: > > http://eje-online.org/content/164/4/447.full.pdf > > <http://eje-online.org/content/164/4/447.full.pdf> > > > > "Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype > > of primary aldosteronism." > > > > I thought I was wierd and now I find there at least 35 others out there > > in the world! [] (Pretty soon they will be telling me I'm > > "Normal" [] ) > > > > Dr. Grim, any info/experience with it? I've got to read it a couple > > times and see if there any muted genes mentioned. Barbara Tatro, where > > are you when I need you? > > >

[Guest guest]

Well it looks like I dodged " the bummer " at least, I heard late last night the

AVS confirmed right side. (E-mail from Attending Physician at 11:22 pm and he

is out of the office until Apr. 30!)

They look at the whole picture to determine the correct RX. My understanding

that the treatment for excess cortisol is very limited so you might want to

leave the adrenal with the adenoma and take care of the excess aldo with meds!

> > >

> > >

> > > Well, well, Well - Look what I just found:

> > > http://eje-online.org/content/164/4/447.full.pdf

> > > <http://eje-online.org/content/164/4/447.full.pdf>

> > >

> > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost

> > subtype

> > > of primary aldosteronism. "

> > >

> > > I thought I was wierd and now I find there at least 35 others out

> > there

> > > in the world! [] (Pretty soon they will be telling me I'm

> > > " Normal " [] )

> > >

> > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > times and see if there any muted genes mentioned. Barbara Tatro,

> > where

> > > are you when I need you?

> > >

> >

> >

>

[Guest guest]

Well it looks like I dodged " the bummer " at least, I heard late last night the

AVS confirmed right side. (E-mail from Attending Physician at 11:22 pm and he

is out of the office until Apr. 30!)

They look at the whole picture to determine the correct RX. My understanding

that the treatment for excess cortisol is very limited so you might want to

leave the adrenal with the adenoma and take care of the excess aldo with meds!

> > >

> > >

> > > Well, well, Well - Look what I just found:

> > > http://eje-online.org/content/164/4/447.full.pdf

> > > <http://eje-online.org/content/164/4/447.full.pdf>

> > >

> > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost

> > subtype

> > > of primary aldosteronism. "

> > >

> > > I thought I was wierd and now I find there at least 35 others out

> > there

> > > in the world! [] (Pretty soon they will be telling me I'm

> > > " Normal " [] )

> > >

> > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > times and see if there any muted genes mentioned. Barbara Tatro,

> > where

> > > are you when I need you?

> > >

> >

> >

>

[Guest guest]

Well it looks like I dodged " the bummer " at least, I heard late last night the

AVS confirmed right side. (E-mail from Attending Physician at 11:22 pm and he

is out of the office until Apr. 30!)

They look at the whole picture to determine the correct RX. My understanding

that the treatment for excess cortisol is very limited so you might want to

leave the adrenal with the adenoma and take care of the excess aldo with meds!

> > >

> > >

> > > Well, well, Well - Look what I just found:

> > > http://eje-online.org/content/164/4/447.full.pdf

> > > <http://eje-online.org/content/164/4/447.full.pdf>

> > >

> > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost

> > subtype

> > > of primary aldosteronism. "

> > >

> > > I thought I was wierd and now I find there at least 35 others out

> > there

> > > in the world! [] (Pretty soon they will be telling me I'm

> > > " Normal " [] )

> > >

> > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > times and see if there any muted genes mentioned. Barbara Tatro,

> > where

> > > are you when I need you?

> > >

> >

> >

>

[Guest guest]

Yep.On Apr 22, 2012, at 4:14 AM, wrote: Well it looks like I dodged "the bummer" at least, I heard late last night the AVS confirmed right side. (E-mail from Attending Physician at 11:22 pm and he is out of the office until Apr. 30!) They look at the whole picture to determine the correct RX. My understanding that the treatment for excess cortisol is very limited so you might want to leave the adrenal with the adenoma and take care of the excess aldo with meds! > > > > > > > > > Well, well, Well - Look what I just found: > > > http://eje-online.org/content/164/4/447.full.pdf > > > <http://eje-online.org/content/164/4/447.full.pdf> > > > > > > "Aldosterone- and cortisol-co-secreting adrenal tumors: the lost > > subtype > > > of primary aldosteronism." > > > > > > I thought I was wierd and now I find there at least 35 others out > > there > > > in the world! [] (Pretty soon they will be telling me I'm > > > "Normal" [] ) > > > > > > Dr. Grim, any info/experience with it? I've got to read it a couple > > > times and see if there any muted genes mentioned. Barbara Tatro, > > where > > > are you when I need you? > > > > > > > >

[Guest guest]

The cortisol readings were early in my testing -many years ago - the AVS showed

significantly higher cortisol readings on the left along with the " through the

roof " Aldosterone levels. After the adrenalectomy hopefully I have a fix.

> > > > >

> > > > >

> > > > > Well, well, Well - Look what I just found:

> > > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > > >

> > > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost

subtype

> > > > > of primary aldosteronism. "

> > > > >

> > > > > I thought I was wierd and now I find there at least 35 others out

there

> > > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > > " Normal " [] )

> > > > >

> > > > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > > > times and see if there any muted genes mentioned. Barbara Tatro,

where

> > > > > are you when I need you?

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I agree with you and it sounds like everything lateralized to one side which

should mean you are all set. (AVS shows mine is all on the right.) Just

something to keep in mind if everything doesn't resolve but it sounds like you

are well on the road to recovery!

> > > > > >

> > > > > >

> > > > > > Well, well, Well - Look what I just found:

> > > > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > > > >

> > > > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost

subtype

> > > > > > of primary aldosteronism. "

> > > > > >

> > > > > > I thought I was wierd and now I find there at least 35 others out

there

> > > > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > > > " Normal " [] )

> > > > > >

> > > > > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > > > > times and see if there any muted genes mentioned. Barbara Tatro,

where

> > > > > > are you when I need you?

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hoorah for a one sided diagnosis - And your numbers coming from NIH give me

confidence that you are well on your way to real help that will restore your

quality of life.

> > > > > > >

> > > > > > >

> > > > > > > Well, well, Well - Look what I just found:

> > > > > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > > > > >

> > > > > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the lost

subtype

> > > > > > > of primary aldosteronism. "

> > > > > > >

> > > > > > > I thought I was wierd and now I find there at least 35 others out

there

> > > > > > > in the world! [] (Pretty soon they will be telling me

I'm

> > > > > > > " Normal " [] )

> > > > > > >

> > > > > > > Dr. Grim, any info/experience with it? I've got to read it a

couple

> > > > > > > times and see if there any muted genes mentioned. Barbara Tatro,

where

> > > > > > > are you when I need you?

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I am curious about how they determine cortisol lateralizes to one side?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 22, 2012, at 14:23, "lk.barns" <lk.barns@...> wrote:

Hoorah for a one sided diagnosis - And your numbers coming from NIH give me confidence that you are well on your way to real help that will restore your quality of life.

> > > > > > >

> > > > > > >

> > > > > > > Well, well, Well - Look what I just found:

> > > > > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > > > > >

> > > > > > > "Aldosterone- and cortisol-co-secreting adrenal tumors: the lost subtype

> > > > > > > of primary aldosteronism."

> > > > > > >

> > > > > > > I thought I was wierd and now I find there at least 35 others out there

> > > > > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > > > > "Normal" [] )

> > > > > > >

> > > > > > > Dr. Grim, any info/experience with it? I've got to read it a couple

> > > > > > > times and see if there any muted genes mentioned. Barbara Tatro, where

> > > > > > > are you when I need you?

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

The results from both AVS samples showed significantly higher cortisol levels on

my right side - higher than would be the normal high cortisol level resulting

from poking the adrenal gland with a catheter or the levels indicative of having

the catheter in the adrenal vein. The 1st AVS demonstrated that the aldosterone

levels were inconsistent with the cortisol readings - it appears that the left

and right side samples for aldosterone were mixed up in the lab.

On the 2nd AVS the cortisol were consistent with the 1st levels and the

aldosterone levels were consistent with both sets of cortisol levels.

Since the Cortical tissues of an adrenal gland produces cortisol, aldosterone

and androgens - could not a tumor growing in the corticol tissue of an adrenal

gland secrete multiple hormones in excess amounts?

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > Well, well, Well - Look what I just found:

> > > > > > > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > > > > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > > > > > > >

> > > > > > > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the

lost subtype

> > > > > > > > > of primary aldosteronism. "

> > > > > > > > >

> > > > > > > > > I thought I was wierd and now I find there at least 35 others

out there

> > > > > > > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > > > > > > " Normal " [] )

> > > > > > > > >

> > > > > > > > > Dr. Grim, any info/experience with it? I've got to read it a

couple

> > > > > > > > > times and see if there any muted genes mentioned. Barbara

Tatro, where

> > > > > > > > > are you when I need you?

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

I really bored quickly when he got to that. I know he was pointing out some

stuff that he saw on the ct-scan w/contrast but I moved him long since I figured

I needed to rely on his expertise on that one, we still had a week of testing to

do at that time. Is there any info from the AVS? (I haven't seen those results

yet but he apparently has.)

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > Well, well, Well - Look what I just found:

> > > > > > > > > http://eje-online.org/content/164/4/447.full.pdf

> > > > > > > > > <http://eje-online.org/content/164/4/447.full.pdf>

> > > > > > > > >

> > > > > > > > > " Aldosterone- and cortisol-co-secreting adrenal tumors: the

lost subtype

> > > > > > > > > of primary aldosteronism. "

> > > > > > > > >

> > > > > > > > > I thought I was wierd and now I find there at least 35 others

out there

> > > > > > > > > in the world! [] (Pretty soon they will be telling me I'm

> > > > > > > > > " Normal " [] )

> > > > > > > > >

> > > > > > > > > Dr. Grim, any info/experience with it? I've got to read it a

couple

> > > > > > > > > times and see if there any muted genes mentioned. Barbara

Tatro, where

> > > > > > > > > are you when I need you?

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

, did NIH do any saliva testing?http://jcem.endojournals.org/content/89/7/3345.full.pdf+html Val > > > > > Well, well, Well - Look what I just found: > > http://eje-online.org/content/164/4/447.full.pdf.

[Guest guest]

No, but they did no less than 6 cortisol & ACTH tests including two at 11:30 pm

& midnight (one of these two was added so they may have been confirming

something seen the night before.) They also did 24hr urine tests 9 days

straight!

> > >

> > > Well, well, Well - Look what I just found:

> > > http://eje-online.org/content/164/4/447.full.pdf

>

>

>

>

> .

>

>

> <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId

> =42539/stime=1335072741/nc1=5191946/nc2=3848642/nc3=5191951>

>

[Guest guest]

Were looking at changes in Ucort, aldo etc with dex is my guess.CE Grim MDOn Apr 23, 2012, at 5:44 AM, wrote: No, but they did no less than 6 cortisol & ACTH tests including two at 11:30 pm & midnight (one of these two was added so they may have been confirming something seen the night before.) They also did 24hr urine tests 9 days straight! > > > > > > Well, well, Well - Look what I just found: > > > http://eje-online.org/content/164/4/447.full.pdf > > > > > . > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > =42539/stime=1335072741/nc1=5191946/nc2=3848642/nc3=5191951> >