Fwd: Unable to deliver your message

January 19, 2008

Messed up on this one. think this one will go.

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: <notify >

> Date: January 19, 2008 11:50:15 AM CST

> lowerbp2@...

> Subject: Unable to deliver your message

>

> We are unable to deliver the message from <lowerbp2@...>

> to <hyperaldosteronism >.

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> From: Grim Clarence <lowerbp2@...>

> Date: January 19, 2008 11:50:10 AM CST

> hyperaldosteronism

> Subject: Re: post left adrenalectomy

>

> Good reason to read the label of everything you put into your mouth.

>

> This would be very rare and would respond quickly to prednisone.

> Rarely pts are allergic to prednisone.

>

> Was AVS done before ADX? I dont recall. Rarely one or both

> adrenals will be killed by the manipulation done for AVS. This is

> almost always associated with a lot of pain over kidneys after AVS.

> Indeed in the old days there were rare reports of pts with PA

> having the tumor containing adrenal die and the PA go away for awhile.

>

> Your Endo seems to know nothing about medicine except endo. Good

> reason to have a good GP.

>

> On Jan 18, 2008, at 12:58 PM, shotzie wrote:

>

>> Dr Grim

>>

>> Is there any chance at all of adrenal insufficiency 1 year after a

>> successful left adrenalectomy for Conn's?

>>

>> I wrote before how I am struggling with a viral illness since Dec 9th

>> Went into an allergic reaction on Jan 3rd from taking Sudafed which

>> had yellow dye I wasn't aware of.

>>

>> Was seen in ER, given Prednisone 50 mg to take 5 days, after 4 I felt

>> so ill with nausea and leg fatigue that I stopped it, felt better for

>> one day then had extreme excitablility, almost manic, unable to eat

>> or sleep, shaking chills without any fever at all which lasted for so

>> many hours I ended up in the ER at the hospital my Endo goes to, 50

>> miles away.

>>

>> Endocrinology totally denies it can be anything to do with the

>> remaining adrenal and refused to see me in the ER or offer any

>> suggestions. They say the prednisone wouldn't have caused those

>> problems.

>> Says it has to be allergic or viral and my primary has to handle it.

>> She refused to handle it so now I am forced to find another primary.

>>

>> My allergies, which were under control, are now not and I feel like I

>> am coming down with another URI. Energy was good yesterday, bad today

>> I lost 7n lbs in one week.

>>

>> Any suggestions for the new primary doc?

>>

>> I felt so good prior to this after feeling so poorly for so many

>> years before the Conn's diagnosis. I want to feel good again

>>

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> =

January 19, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: <notify >

> Date: January 19, 2008 11:50:15 AM CST

> lowerbp2@...

> Subject: Unable to deliver your message

>

> We are unable to deliver the message from <lowerbp2@...>

> to <hyperaldosteronism >.

>

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> only send messages to this group using the email address(es) you have

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>

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>

> From: Grim Clarence <lowerbp2@...>

> Date: January 19, 2008 11:50:10 AM CST

> hyperaldosteronism

> Subject: Re: post left adrenalectomy

>

> Good reason to read the label of everything you put into your mouth.

>

> This would be very rare and would respond quickly to prednisone.

> Rarely pts are allergic to prednisone.

>

> Was AVS done before ADX? I dont recall. Rarely one or both

> adrenals will be killed by the manipulation done for AVS. This is

> almost always associated with a lot of pain over kidneys after AVS.

> Indeed in the old days there were rare reports of pts with PA

> having the tumor containing adrenal die and the PA go away for awhile.

>

> Your Endo seems to know nothing about medicine except endo. Good

> reason to have a good GP.

>

> On Jan 18, 2008, at 12:58 PM, shotzie wrote:

>

>> Dr Grim

>>

>> Is there any chance at all of adrenal insufficiency 1 year after a

>> successful left adrenalectomy for Conn's?

>>

>> I wrote before how I am struggling with a viral illness since Dec 9th

>> Went into an allergic reaction on Jan 3rd from taking Sudafed which

>> had yellow dye I wasn't aware of.

>>

>> Was seen in ER, given Prednisone 50 mg to take 5 days, after 4 I felt

>> so ill with nausea and leg fatigue that I stopped it, felt better for

>> one day then had extreme excitablility, almost manic, unable to eat

>> or sleep, shaking chills without any fever at all which lasted for so

>> many hours I ended up in the ER at the hospital my Endo goes to, 50

>> miles away.

>>

>> Endocrinology totally denies it can be anything to do with the

>> remaining adrenal and refused to see me in the ER or offer any

>> suggestions. They say the prednisone wouldn't have caused those

>> problems.

>> Says it has to be allergic or viral and my primary has to handle it.

>> She refused to handle it so now I am forced to find another primary.

>>

>> My allergies, which were under control, are now not and I feel like I

>> am coming down with another URI. Energy was good yesterday, bad today

>> I lost 7n lbs in one week.

>>

>> Any suggestions for the new primary doc?

>>

>> I felt so good prior to this after feeling so poorly for so many

>> years before the Conn's diagnosis. I want to feel good again

>>

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> =

January 19, 2008

think I have it fixed now. email that is

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: <notify >

> Date: January 19, 2008 9:38:36 PM CST

> LOWERBP2@...

> Subject: Unable to deliver your message

>

> We are unable to deliver the message from <LOWERBP2@...>

> to <hyperaldosteronism >.

>

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>

> From: Clarence Grim <lowerbp2@...>

> Date: January 19, 2008 9:38:22 PM CST

> hyperaldosteronism

> Subject: Re: Re: High Altitude - Sleep Apnea

> (new CPAP)

>

> Others have noted a high freq of OSA in PA. If we had our data

> base working we would have a good series here.

>

> On Jan 19, 2008, at 9:17 PM, Randy wrote:

>

>> HI Jeff

>>

>> I do believe that the new CPAP has a humidifier and that probably

>> doubles the size. I will look up your model # and check it out.

>> All of my talk of battery operating and every thing is without the

>> humidifier. That takes a lot of " juice " to operate, no battery is

>> going handle that.

>>

>> I am not sure this is off topic.... my observation is that a lot

>> if not a majority of PAs have sleep apnea.

>>

>> Thanx,

>> Randy

>

> =

January 19, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: Grim Clarence <lowerbp2@...>

> Date: January 19, 2008 9:35:54 PM CST

> hyperaldosteronism

> Subject: Fwd: Unable to deliver your message

> Reply-hyperaldosteronism

>

> Messed up on this one. think this one will go.

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> Begin forwarded message:

>

> > From: <notify >

> > Date: January 19, 2008 11:50:15 AM CST

> > lowerbp2@...

> > Subject: Unable to deliver your message

> >

> > We are unable to deliver the message from <lowerbp2@...>

> > to <hyperaldosteronism >.

> >

> > The email address used to send your message is not subscribed to

> this

> > group. If you are a member of this group, please be aware that

> you may

> > only send messages to this group using the email address(es) you

> have

> > registered with .

> >

> > If you would like to subscribe to this group:

> > 1. visit

> > hyperaldosteronism/join

> > -OR-

> > 2. send email to hyperaldosteronism-subscribe

> >

> > For further assistance, please visit http://help./l/us/

> > /groups/original/members/web/index.html

> >

> > From: Grim Clarence <lowerbp2@...>

> > Date: January 19, 2008 11:50:10 AM CST

> > hyperaldosteronism

> > Subject: Re: post left adrenalectomy

> >

> > Good reason to read the label of everything you put into your mouth.

> >

> > This would be very rare and would respond quickly to prednisone.

> > Rarely pts are allergic to prednisone.

> >

> > Was AVS done before ADX? I dont recall. Rarely one or both

> > adrenals will be killed by the manipulation done for AVS. This is

> > almost always associated with a lot of pain over kidneys after AVS.

> > Indeed in the old days there were rare reports of pts with PA

> > having the tumor containing adrenal die and the PA go away for

> awhile.

> >

> > Your Endo seems to know nothing about medicine except endo. Good

> > reason to have a good GP.

> >

> > On Jan 18, 2008, at 12:58 PM, shotzie wrote:

> >

> >> Dr Grim

> >>

> >> Is there any chance at all of adrenal insufficiency 1 year after a

> >> successful left adrenalectomy for Conn's?

> >>

> >> I wrote before how I am struggling with a viral illness since

> Dec 9th

> >> Went into an allergic reaction on Jan 3rd from taking Sudafed which

> >> had yellow dye I wasn't aware of.

> >>

> >> Was seen in ER, given Prednisone 50 mg to take 5 days, after 4 I

> felt

> >> so ill with nausea and leg fatigue that I stopped it, felt

> better for

> >> one day then had extreme excitablility, almost manic, unable to eat

> >> or sleep, shaking chills without any fever at all which lasted

> for so

> >> many hours I ended up in the ER at the hospital my Endo goes to, 50

> >> miles away.

> >>

> >> Endocrinology totally denies it can be anything to do with the

> >> remaining adrenal and refused to see me in the ER or offer any

> >> suggestions. They say the prednisone wouldn't have caused those

> >> problems.

> >> Says it has to be allergic or viral and my primary has to handle

> it.

> >> She refused to handle it so now I am forced to find another

> primary.

> >>

> >> My allergies, which were under control, are now not and I feel

> like I

> >> am coming down with another URI. Energy was good yesterday, bad

> today

> >> I lost 7n lbs in one week.

> >>

> >> Any suggestions for the new primary doc?

> >>

> >> I felt so good prior to this after feeling so poorly for so many

> >> years before the Conn's diagnosis. I want to feel good again

> >>

> >

> > CE Grim MS, MD

> > High Blood Pressure Consulting

> >

> > Clnical Professor of Medicine Medical Colege of Wisconsin

> >

> > Board certified in Internal Med, Geritrics and Hypertension.

> >

> > Interests: The effect of recent evolutionary forces on high blood

> > pressure in human populations.

> >

> > =

>

January 19, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: <notify >

> Date: January 19, 2008 10:59:37 PM CST

> LOWERBP2@...

> Subject: Unable to deliver your message

>

> We are unable to deliver the message from <LOWERBP2@...>

> to <hyperaldosteronism >.

>

> The email address used to send your message is not subscribed to this

> group. If you are a member of this group, please be aware that you may

> only send messages to this group using the email address(es) you have

> registered with .

>

> If you would like to subscribe to this group:

> 1. visit

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> -OR-

> 2. send email to hyperaldosteronism-subscribe

>

> For further assistance, please visit http://help./l/us/

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>

> From: Clarence Grim <lowerbp2@...>

> Date: January 19, 2008 10:59:29 PM CST

> hyperaldosteronism

> Subject: Re: Quick Poll: OSA Frequency

>

> On Jan 19, 2008, at 10:41 PM, Jeff Feinsmith wrote:

>

>> We don't have a database, but perhaps a somewhat unscientific poll

>> may

>> be useful. I'lll send out the compiled results.

>

> Should add:

>

> I have Primary Aldosteronism yes/ no/ not sure

>

> I have had surgery for PA Yes/ No

>

> then

>>

>> Do you have Obstructive Sleep Apnea:

>>

>> _ Yes

>> _ No

>> _ I snore really bad, but never have been evaluated for OSA

>> _ I have OSA but PA not yet confirmed

> -I use CPAP every night yes no

> using CPAP improved my daytime sleepyness yes no

> -I go to sleep during the day when I do not want to.

>

> You can also do this on survey monkey for free.

>>

>> Thanks,

>> Jeff

>

> =

January 19, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: <notify >

> Date: January 19, 2008 10:55:17 PM CST

> LOWERBP2@...

> Subject: Unable to deliver your message

>

> We are unable to deliver the message from <LOWERBP2@...>

> to <hyperaldosteronism >.

>

> The email address used to send your message is not subscribed to this

> group. If you are a member of this group, please be aware that you may

> only send messages to this group using the email address(es) you have

> registered with .

>

> If you would like to subscribe to this group:

> 1. visit

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> 2. send email to hyperaldosteronism-subscribe

>

> For further assistance, please visit http://help./l/us/

> /groups/original/members/web/index.html

>

> From: Clarence Grim <lowerbp2@...>

> Date: January 19, 2008 10:55:11 PM CST

> hyperaldosteronism

> Subject: Re: Quick Poll: OSA Frequency

>

> Please add: I go to sleep during the day when I dont want to?

>

> On Jan 19, 2008, at 10:41 PM, Jeff Feinsmith wrote:

>

>> Folks,

>>

>> We don't have a database, but perhaps a somewhat unscientific poll

>> may

>> be useful. I'lll send out the compiled results.

>>

>> Do you have Obstructive Sleep Apnea and PA:

>>

>> _ Yes

>> _ No

>> _ I snore really bad, but never have been evaluated for OSA

>> _ I have OSA but PA not yet confirmed

>>

>> Thanks,

>> Jeff

>>

>

> =

January 20, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: Grim Clarence <lowerbp2@...>

> Date: January 19, 2008 11:01:52 PM CST

> hyperaldosteronism

> Subject: Fwd: Unable to deliver your message

> Reply-hyperaldosteronism

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> Begin forwarded message:

>

> > From: <notify >

> > Date: January 19, 2008 10:55:17 PM CST

> > LOWERBP2@...

> > Subject: Unable to deliver your message

> >

> > We are unable to deliver the message from <LOWERBP2@...>

> > to <hyperaldosteronism >.

> >

> > The email address used to send your message is not subscribed to

> this

> > group. If you are a member of this group, please be aware that

> you may

> > only send messages to this group using the email address(es) you

> have

> > registered with .

> >

> > If you would like to subscribe to this group:

> > 1. visit

> > hyperaldosteronism/join

> > -OR-

> > 2. send email to hyperaldosteronism-subscribe

> >

> > For further assistance, please visit http://help./l/us/

> > /groups/original/members/web/index.html

> >

> > From: Clarence Grim <lowerbp2@...>

> > Date: January 19, 2008 10:55:11 PM CST

> > hyperaldosteronism

> > Subject: Re: Quick Poll: OSA Frequency

> >

> > Please add: I go to sleep during the day when I dont want to?

> >

> > On Jan 19, 2008, at 10:41 PM, Jeff Feinsmith wrote:

> >

> >> Folks,

> >>

> >> We don't have a database, but perhaps a somewhat unscientific poll

> >> may

> >> be useful. I'lll send out the compiled results.

> >>

> >> Do you have Obstructive Sleep Apnea and PA:

> >>

> >> _ Yes

> >> _ No

> >> _ I snore really bad, but never have been evaluated for OSA

> >> _ I have OSA but PA not yet confirmed

> >>

> >> Thanks,

> >> Jeff

> >>

> >

> > =

>

January 20, 2008

> Good reason to read the label of everything you put

into your mouth.

I usually do, got sloppy and paid for it!

> This would be very rare and would respond quickly to

prednisone.

> Rarely pts are allergic to prednisone.

Don't think I am allergic to prednisone BUT do think

the dose was too high. The SX I had were withdrawl,

especially the excitability part. I never want to do

that again. I took Prednisone in a lower and tapering

dose in 1995 for an episode of laryngeal edema and had

no problems.

I tend to need 1/2 of an adult dose of any med. Slow

metabolizer or whatever. It is a real thing that has

been proven time and time again over the past 2o

years.

> Was AVS done before ADX? I dont recall. Rarely one

or both

> adrenals will be killed by the manipulation done for

AVS. This is

> almost always associated with a lot of pain over

kidneys after AVS.

> Indeed in the old days there were rare reports of

pts with PA

> having the tumor containing adrenal die and the PA

go away for awhile.

I did have a successful and painless AVS procedure. I

am the one they also did the renal balloon angioplasty

on for FMD, which you wouldn't have done.

> Your Endo seems to know nothing about medicine

except endo. Good

> reason to have a good GP.

Finding a good GP is a problem around here. I had a

good one who left town suddenly while I was waiting

for surgery. If it weren't for him I wouldn't have

been referred so quickly. Everyone else wanted to

keep playing with medications even though they didn't

work for me or I got deathly ill on them. No one would

try Inspra, but I was so far into the PA by the time

it was diagonsed and the AVS clearly showed the excess

aldo from the left that I went for the surgery and it

has been successful so far.

I will be seeing a new GP Feb 1, graduated this past

year,a female, so MAYBE I can teach her. I certainly

hope so. My last GP wouldn't read or consider

anything I brought to her. She was upset that she

couldn't prescribe any meds for me. I don't need meds

now and if the PA returns I will go somewhere where

they know what they are talking about.

>

I am feeling better now, getting rid of my second URI

since Dec 9. I do work in a Pediatric office and am

constantly exposed to everything out there. I am

building up my resistance with rest and a good home

cooked clean diet. And RELIGIOUSLY reading labels!

I am ASA sensitive, yellow dye sensitivity goes along

with that. I am also allergic to NSAIDs, caused

angioedema in 1988, my first episode.

Thank you for your help

> On Jan 18, 2008, at 12:58 PM, shotzie wrote:

>

>> Dr Grim

>>

>> Is there any chance at all of adrenal insufficiency

1 year after a

>> successful left adrenalectomy for Conn's?

>>

>> I wrote before how I am struggling with a viral

illness since Dec 9th

>> Went into an allergic reaction on Jan 3rd from

taking Sudafed which

>> had yellow dye I wasn't aware of.

>>

>> Was seen in ER, given Prednisone 50 mg to take 5

days, after 4 I felt

>> so ill with nausea and leg fatigue that I stopped

it, felt better for

>> one day then had extreme excitablility, almost

manic, unable to eat

>> or sleep, shaking chills without any fever at all

which lasted for so

>> many hours I ended up in the ER at the hospital my

Endo goes to, 50

>> miles away.

>>

>> Endocrinology totally denies it can be anything to

do with the

>> remaining adrenal and refused to see me in the ER

or offer any

>> suggestions. They say the prednisone wouldn't have

caused those

>> problems.

>> Says it has to be allergic or viral and my primary

has to handle it.

>> She refused to handle it so now I am forced to find

another primary.

>>

>> My allergies, which were under control, are now not

and I feel like I

>> am coming down with another URI. Energy was good

yesterday, bad today

>> I lost 7n lbs in one week.

>>

>> Any suggestions for the new primary doc?

>>

>> I felt so good prior to this after feeling so

poorly for so many

>> years before the Conn's diagnosis. I want to feel

good again

>>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

January 20, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: <notify >

> Date: January 20, 2008 2:44:57 PM CST

> lowerbp2mac@...

> Subject: Unable to deliver your message

>

> We are unable to deliver the message from <lowerbp2mac@...>

> to <hyperaldosteronism >.

>

> The email address used to send your message is not subscribed to this

> group. If you are a member of this group, please be aware that you may

> only send messages to this group using the email address(es) you have

> registered with .

>

> If you would like to subscribe to this group:

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>

> For further assistance, please visit http://help./l/us/

> /groups/original/members/web/index.html

>

> From: lowerbp2mac <lowerbp2mac@...>

> Date: January 20, 2008 2:44:49 PM CST

> hyperaldosteronism

> Subject: Re: Re: New to Group

>

> Be sure to print out my article on the Evolution of PA and read it

> and take to your own Endo. Remind him I worked with Dr. Conn for a

> year.

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> On Jan 20, 2008, at 12:17 PM, carcinoidnews@... wrote:

>

>> Hi!

>>

>> Yes - the pheo was tested for extensively several years ago - the

>> NIH even did some testing for my docs - it was (then ) a new test

>> - if I remember right it was for metanephrines and

>> normetanephrines... all tests conclusively negative. Nobody could

>> figure out the source of the sinus tachycardia and the labile

>> hypertension (which pre-pregnancy was mild).

>>

>> Fairly extensive testing for orthostatic type problems as well -

>> on Tilt table my HR went up but my BP went up as well too - they

>> were looking for a drop in BP.

>>

>> I definitely don't present a classical picture of Conn's - which

>> is why my left adrenal tumor has been sitting there without

>> looking into it. My hypertension has been only labile - BUT I have

>> been on boatloads of drugs for the sinus tach - which would also

>> help lower BP - PLUS I have an ultra low sodium diet - I probably

>> average around 1000mg a day.

>>

>> Anyway, my mom had hypertension ever since I was little (as did

>> her mom- early onset of hypertension in 30's despite not being

>> overweight, not being sedentary, not smoking, etc) so I grew up

>> with my mom cooking without salt etc - I don't really like the

>> taste of salt - I rarely eat any processed food. We figured out a

>> connection between processed food and my extreme post-prandial

>> fatigue symptoms a few years ago and cutting out processed foods

>> and rarely eating restaurant food really helped improve my

>> symptoms as well....

>>

>> I also have this weird symptom of fluid weight gain without edema

>> - docs were quite stumped when this first started happening in

>> pregnancy - I would put on 5-10 pounds a day in fluid - no

>> clinical edema - then it would diurese away. They actually put me

>> in the hospital to verify this because one of the docs in the

>> group thought I was just a nervous first-time mom. I still have

>> the fluid weight gain without edema thing going on - but it always

>> goes away when I lie down for awhile - I pee it all off. And it's

>> not nearly as bad as the fluid weight gains in pregnancy.

>>

>> I have also been tested for some rare kind of inheritied swelling

>> problem (angioedema I think) - my mom who has severe difficult to

>> control hypertension and now has diabetes and coronary artery

>> disease (and just had 2 heart attacks at age 65) - she swells like

>> that too. Fluid weight gain without edema.

>>

>> So my onco is doing a complete preliminary workup for the Conn's -

>> if this turns out negative then I would definitely be interested

>> in seeing your endo in Lexington-much closer than my carcinoid

>> experts in N.Y. and La. !!

>>

>> Yes, you are also right that carcinoid is VERY RARELY ever treated

>> with sando without a confirmed histopath dx - but that's mainly

>> because it usually isn't diagnosed until its metastatic and

>> incurable - it's rare to find the tumors prior to metastasis - and

>> also rare to have syndrome without mets. I won't bore the group

>> with the whys of that. My urine 5-HIAA tests have consistent mild

>> elevations (which decrease to low normal on sando) and when I

>> first started the octreoscans- I had such an improvement in

>> symptoms that my doc conferred with the carcinoid experts and

>> decided it was worth a trial response to sando... - very positive

>> repsonse but still struggle with fatigue issues and am limited in

>> regards to exertion, stamina, etc - but sando took me from bed-

>> ridden to having a life and even being able to return to work part-

>> time so all docs concurred that it was worth staying on the sando

>> while we tried to figure things out. I have been simply took sick

>> tolive without it - fa! tgie s! o bad that if you put a gun to my

>> head I couldn';t get up. Fall asleep in broad daylight when I

>> don't want to, but cannot help it. (not a sudden narcolepsy thing,

>> just overwhelming sleepiness and fatigue).

>>

>> So the final consensus was that I probably have a small benign

>> carcinoid that isn't big enough (needs to be 1cm or greater) to

>> show up on o-scan and that the sando may keep it from growing any

>> larger so we may never find it. And I couldn't deal with the

>> continual diagnostic process anymore. I got to the point where if

>> the meds controlled it, I didn't care what it was. I had a young

>> special needs daughter (issues from being born 12 weeks early), I

>> was worried that if I didn't return to practice soon, I would

>> reach a point where I had been out so long I wouldn't be able to

>> go back (I am a vet), and I just wanted a life again. I was tired

>> of imitating a lab rat, REALLY tired of having specialists take on

>> my case only to say " you are a really interesting case... but I

>> have no idea what is wrong with you " . I was so sick without the

>> sando and so much better with it that my docs agreed to take a

>> break from the diagnostics with the exception of yearly follow-up

>> testing to ! look f! or the tumor (and monthly checkups with my

>> sando treatments).

>>

>> But in the seven years on sando, I haven't been back on calcium

>> channel blockers until a couple months ago - I went off all drugs

>> during pregnancy, then after went on beta-blockers becuase it was

>> safer for nursing - we never really thought there might be a

>> connection with the calcium channel blockers.

>>

>> And now that I am off the sando completely, I am drinking and

>> peeing like a racehorse!! - I was PU/PD before sando but not this

>> bad - I am now up 1-2 times in the middle of the night and also

>> very thirsty in the middle of the night...

>>

>> Anyway, thank you all so much for the responses - am waiting on

>> the blood results which were just drawn Friday, and I have a urine

>> jug to fill up tomorrow and take in on Tuesday, so within a couple

>> weeks I should at least have some pre-lim answers.

>>

>> And, Dr. Grimm, thanks so much - I will definitely be asking you

>> for the Endo contact in Lexington if this doesn't pan out.

>>

>> Also, my thanks to the group for listening and answering - I am

>> putting the cart before the horse here, but I was reluctant to

>> " open pandora's box " with respect to going on another round of

>> diagnostics, and potentially more wild goose chases. I will

>> definitely keep you guys posted on the test results- And if

>> negative I apologize in advance for wasting your time! And I won't

>> write such long emails anymore!!

>>

>> Sincerely,

>>

>> Joyce in Cinci

>>

>> ---- Clarence Grim <lowerbp2@...> wrote:

>> > Assume you have been tested for pheochromocytoma as well?

>> >

>> > Classically PA gets better during pregnancy.

>> >

>> > I have never heard of treating an undiagnosed carcinoid with

>> > sandostatin. I would call this bad judgement.

>> >

>> > Sounds like you may have an orthostatic hypotension problem.

>> Have you

>> > been tested for this. There is a good autonomic insufficiency site

>> > in our links as I recall.

>> >

>> > You need to have a blood renin and aldosterone checked. I know an

>> > excellent Endo in Lexington who could likely get you figured out.

>> > Can you drive down there?

>> >

>>

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> =

January 20, 2008

Tell they you have been suffering from PA before she went to medical

School. Take her my article. If she wont take it tell her you need

to look further for a GP who can be educated on how to take care of HTN.

Chances are she was never trained to take BP correctly and you can

update her on that with our consumer's guide. Use the guide to grade

the BP taking procedure in her office and give her the information.

I she questions you ask her is anyone ever listened to her with a

double stethoscope to document that she can hear Korotokoff sounds.

Most Drs have never done this unless the were trained at UCLA or Med

Coll of WI by me.

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

On Jan 20, 2008, at 2:51 PM, shotzie wrote:

> I will be seeing a new GP Feb 1, graduated this past

> year,a female, so MAYBE I can teach her. I certainly

> hope so. My last GP wouldn't read or consider

> anything I brought to her. She was upset that she

> couldn't prescribe any meds for me. I don't need meds

> now and if the PA returns I will go somewhere where

> they know what they are talking about.

January 20, 2008

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

Begin forwarded message:

> From: Grim Clarence <lowerbp2@...>

> Date: January 20, 2008 3:22:08 PM CST

> hyperaldosteronism

> Subject: Fwd: Unable to deliver your message

> Reply-hyperaldosteronism

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

> Begin forwarded message:

>

> > From: <notify >

> > Date: January 20, 2008 2:44:57 PM CST

> > lowerbp2mac@...

> > Subject: Unable to deliver your message

> >

> > We are unable to deliver the message from <lowerbp2mac@...>

> > to <hyperaldosteronism >.

> >

> > The email address used to send your message is not subscribed to

> this

> > group. If you are a member of this group, please be aware that

> you may

> > only send messages to this group using the email address(es) you

> have

> > registered with .

> >

> > If you would like to subscribe to this group:

> > 1. visit

> > hyperaldosteronism/join

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> > 2. send email to hyperaldosteronism-subscribe

> >

> > For further assistance, please visit http://help./l/us/

> > /groups/original/members/web/index.html

> >

> > From: lowerbp2mac <lowerbp2mac@...>

> > Date: January 20, 2008 2:44:49 PM CST

> > hyperaldosteronism

> > Subject: Re: Re: New to Group

> >

> > Be sure to print out my article on the Evolution of PA and read it

> > and take to your own Endo. Remind him I worked with Dr. Conn for a

> > year.

> >

> > CE Grim MS, MD

> > High Blood Pressure Consulting

> >

> > Clnical Professor of Medicine Medical Colege of Wisconsin

> >

> > Board certified in Internal Med, Geritrics and Hypertension.

> >

> > Interests: The effect of recent evolutionary forces on high blood

> > pressure in human populations.

> >

> > On Jan 20, 2008, at 12:17 PM, carcinoidnews@... wrote:

> >

> >> Hi!

> >>

> >> Yes - the pheo was tested for extensively several years ago - the

> >> NIH even did some testing for my docs - it was (then ) a new test

> >> - if I remember right it was for metanephrines and

> >> normetanephrines... all tests conclusively negative. Nobody could

> >> figure out the source of the sinus tachycardia and the labile

> >> hypertension (which pre-pregnancy was mild).

> >>

> >> Fairly extensive testing for orthostatic type problems as well -

> >> on Tilt table my HR went up but my BP went up as well too - they

> >> were looking for a drop in BP.

> >>

> >> I definitely don't present a classical picture of Conn's - which

> >> is why my left adrenal tumor has been sitting there without

> >> looking into it. My hypertension has been only labile - BUT I have

> >> been on boatloads of drugs for the sinus tach - which would also

> >> help lower BP - PLUS I have an ultra low sodium diet - I probably

> >> average around 1000mg a day.

> >>

> >> Anyway, my mom had hypertension ever since I was little (as did

> >> her mom- early onset of hypertension in 30's despite not being

> >> overweight, not being sedentary, not smoking, etc) so I grew up

> >> with my mom cooking without salt etc - I don't really like the

> >> taste of salt - I rarely eat any processed food. We figured out a

> >> connection between processed food and my extreme post-prandial

> >> fatigue symptoms a few years ago and cutting out processed foods

> >> and rarely eating restaurant food really helped improve my

> >> symptoms as well....

> >>

> >> I also have this weird symptom of fluid weight gain without edema

> >> - docs were quite stumped when this first started happening in

> >> pregnancy - I would put on 5-10 pounds a day in fluid - no

> >> clinical edema - then it would diurese away. They actually put me

> >> in the hospital to verify this because one of the docs in the

> >> group thought I was just a nervous first-time mom. I still have

> >> the fluid weight gain without edema thing going on - but it always

> >> goes away when I lie down for awhile - I pee it all off. And it's

> >> not nearly as bad as the fluid weight gains in pregnancy.

> >>

> >> I have also been tested for some rare kind of inheritied swelling

> >> problem (angioedema I think) - my mom who has severe difficult to

> >> control hypertension and now has diabetes and coronary artery

> >> disease (and just had 2 heart attacks at age 65) - she swells like

> >> that too. Fluid weight gain without edema.

> >>

> >> So my onco is doing a complete preliminary workup for the Conn's -

> >> if this turns out negative then I would definitely be interested

> >> in seeing your endo in Lexington-much closer than my carcinoid

> >> experts in N.Y. and La. !!

> >>

> >> Yes, you are also right that carcinoid is VERY RARELY ever treated

> >> with sando without a confirmed histopath dx - but that's mainly

> >> because it usually isn't diagnosed until its metastatic and

> >> incurable - it's rare to find the tumors prior to metastasis - and

> >> also rare to have syndrome without mets. I won't bore the group

> >> with the whys of that. My urine 5-HIAA tests have consistent mild

> >> elevations (which decrease to low normal on sando) and when I

> >> first started the octreoscans- I had such an improvement in

> >> symptoms that my doc conferred with the carcinoid experts and

> >> decided it was worth a trial response to sando... - very positive

> >> repsonse but still struggle with fatigue issues and am limited in

> >> regards to exertion, stamina, etc - but sando took me from bed-

> >> ridden to having a life and even being able to return to work part-

> >> time so all docs concurred that it was worth staying on the sando

> >> while we tried to figure things out. I have been simply took sick

> >> tolive without it - fa! tgie s! o bad that if you put a gun to my

> >> head I couldn';t get up. Fall asleep in broad daylight when I

> >> don't want to, but cannot help it. (not a sudden narcolepsy thing,

> >> just overwhelming sleepiness and fatigue).

> >>

> >> So the final consensus was that I probably have a small benign

> >> carcinoid that isn't big enough (needs to be 1cm or greater) to

> >> show up on o-scan and that the sando may keep it from growing any

> >> larger so we may never find it. And I couldn't deal with the

> >> continual diagnostic process anymore. I got to the point where if

> >> the meds controlled it, I didn't care what it was. I had a young

> >> special needs daughter (issues from being born 12 weeks early), I

> >> was worried that if I didn't return to practice soon, I would

> >> reach a point where I had been out so long I wouldn't be able to

> >> go back (I am a vet), and I just wanted a life again. I was tired

> >> of imitating a lab rat, REALLY tired of having specialists take on

> >> my case only to say " you are a really interesting case... but I

> >> have no idea what is wrong with you " . I was so sick without the

> >> sando and so much better with it that my docs agreed to take a

> >> break from the diagnostics with the exception of yearly follow-up

> >> testing to ! look f! or the tumor (and monthly checkups with my

> >> sando treatments).

> >>

> >> But in the seven years on sando, I haven't been back on calcium

> >> channel blockers until a couple months ago - I went off all drugs

> >> during pregnancy, then after went on beta-blockers becuase it was

> >> safer for nursing - we never really thought there might be a

> >> connection with the calcium channel blockers.

> >>

> >> And now that I am off the sando completely, I am drinking and

> >> peeing like a racehorse!! - I was PU/PD before sando but not this

> >> bad - I am now up 1-2 times in the middle of the night and also

> >> very thirsty in the middle of the night...

> >>

> >> Anyway, thank you all so much for the responses - am waiting on

> >> the blood results which were just drawn Friday, and I have a urine

> >> jug to fill up tomorrow and take in on Tuesday, so within a couple

> >> weeks I should at least have some pre-lim answers.

> >>

> >> And, Dr. Grimm, thanks so much - I will definitely be asking you

> >> for the Endo contact in Lexington if this doesn't pan out.

> >>

> >> Also, my thanks to the group for listening and answering - I am

> >> putting the cart before the horse here, but I was reluctant to

> >> " open pandora's box " with respect to going on another round of

> >> diagnostics, and potentially more wild goose chases. I will

> >> definitely keep you guys posted on the test results- And if

> >> negative I apologize in advance for wasting your time! And I won't

> >> write such long emails anymore!!

> >>

> >> Sincerely,

> >>

> >> Joyce in Cinci

> >>

> >> ---- Clarence Grim <lowerbp2@...> wrote:

> >> > Assume you have been tested for pheochromocytoma as well?

> >> >

> >> > Classically PA gets better during pregnancy.

> >> >

> >> > I have never heard of treating an undiagnosed carcinoid with

> >> > sandostatin. I would call this bad judgement.

> >> >

> >> > Sounds like you may have an orthostatic hypotension problem.

> >> Have you

> >> > been tested for this. There is a good autonomic insufficiency

> site

> >> > in our links as I recall.

> >> >

> >> > You need to have a blood renin and aldosterone checked. I know an

> >> > excellent Endo in Lexington who could likely get you figured out.

> >> > Can you drive down there?

> >> >

> >>

> >

> > CE Grim MS, MD

> > High Blood Pressure Consulting

> >

> > Clnical Professor of Medicine Medical Colege of Wisconsin

> >

> > Board certified in Internal Med, Geritrics and Hypertension.

> >

> > Interests: The effect of recent evolutionary forces on high blood

> > pressure in human populations.

> >

> > =

>

January 20, 2008