please help

[Guest guest]

not clear about prognosis yet. i live in a small town and the drs

did not prep me for the test correctly according to my research. My

alderterone is normal renin is low and cortisol is high but am tolk

by dr in small town that is perfectly normal? Go figure. I am

definately confused. I really need to find a good endochronologist

and lots of new friends of my group here. I have no doubt you will

all be lots of help and inspiration Thank you I am going in for a k

check with my print out to make sure it is done right today. I bet

that makes a difference. Ct scan in san francisco went to emergency

room (5hr drive from home) shows both adrenal glands enlarged no

specifics yet other than that trying to get records and a

specialist.

> How clear is the Dx fo Conn's? Need more details. Many will

need a lot

> more Sprio to get to goal. Have you been on more?

>

>

> Be sure blood was drawn correctly to make sure they did not miss

low K. See

> our files on this.

>

> >

> >

> >

>

>

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

> > **************************************

> See what's new at http://www.aol.com

>

>

>

[Guest guest]

Have you been tested for Cushing's yet? If your cortisol was high that would be

a clue. I had normal aldosterone, low renin and high cortisol (at times).

Cyclical cushings and most likely conns too. I found a good endocrinologist in

LA. Pathology report said I had micronodular adrenal hyperplasia. It was causing

my high blood pressure and a multitude of problems. Violet

lisaconns <lisaconns@...> wrote: not clear about prognosis yet. i

live in a small town and the drs

did not prep me for the test correctly according to my research. My

alderterone is normal renin is low and cortisol is high but am tolk

by dr in small town that is perfectly normal? Go figure. I am

definately confused. I really need to find a good endochronologist

and lots of new friends of my group here. I have no doubt you will

all be lots of help and inspiration Thank you I am going in for a k

check with my print out to make sure it is done right today. I bet

that makes a difference. Ct scan in san francisco went to emergency

room (5hr drive from home) shows both adrenal glands enlarged no

specifics yet other than that trying to get records and a

specialist.

> How clear is the Dx fo Conn's? Need more details. Many will

need a lot

> more Sprio to get to goal. Have you been on more?

>

>

> Be sure blood was drawn correctly to make sure they did not miss

low K. See

> our files on this.

>

> >

> >

> >

>

>

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

> > **************************************

> See what's new at http://www.aol.com

>

>

>

[Guest guest]

>

> I am very new at this so please bear with me. I need an excellent

> endochronologist in the San Francisco or Sacramento area as I am

> having a hard time getting an appt. I am currently on 4 different

> meds for bp and high amounts of k as my kidneys keep secreting

it.

> I am stable now with k and my bp but am having extreme fatigue and

> sleeping sometimes 18 hrs a day. severe headaches and extreme

> cramping even writing this i cramp. I feel like such a baby i

have

> never been ill and this is really throwing me off. please any

> advice or info would be so greatly appreciated. i have my own

> cleaning service and am not able to work. 2 beautiful kids and a

> wonderful husband. life is on hold and we are all scared. meds are

> catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day,

> K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at

> night, spironolactone 25mg at night all my symptoms came on very

> sudden, paralysis, blurred vision, weakness, extreme fatigue,

> migranes,very irritable(actually irritable tingling in hands and

> feet blurred vision and headaches started it all and lasted about

2

> weeks before i was admitted to the critical care unit for 5 days.)

> thank you all in advance i may not be able to reply due to

cramping.

> k is 4.4 now dont understand the cramping? again thank you all.

Dear ,

I can really empathize with you. Your doctors seem to be leaving

you out there without the help you need. Did your symptoms get

worse after starting on spironolactone? I have tried it twice as it

is the best drug for treating postassium and bp. Both times it

increased nausea, virtigo, vision disturbances, weakness and other

symptoms. I have now discontinued it and waiting for potassium

report to see if I have to try another drug. Spironolactone will

raise your potassium if the problem is aldosterone. It can also

raise it too high in combination with other drugs(I just did that).

It can also lower your sodium which is good if it doesn't lower it

too much. You should check this regularly along with potassium.

When I was going through this, my husband and I called it the merry-

go-round. If you need to stop the spiro, you can take potassium

supplements.

I have been seeing a neurologist for about 3 years for headaches.

Before I knew that I had PA, my headaches kept getting worse until I

was having daily headaches. My neuroligist reduced the headaches to

almost none, in a very short time with a low dose of elavil. Also,

by increasing the dose to 70mg(this is still a low dose) I am having

less pain in feet, legs, arms, and hands.

You need immediate help from qualified doctors. Oceanside is too

far for you in your condition but I know there are at least 2 others

on this message board from the San Francisco area. One is Sapna_52

and the other is Farah Rahbar. You can look for their posts and

send a request directly to them. Also, there is a Mayo Clinic in

Arizona and you should consider going there if you can manage it.

Should you need surgery, I highly recommend my surgeon, Dr. Fierer,

as it is a short hospital stay and you could easily fly in for a

couple of days. If your advanced workup is done well by competent

doctors, you should only need one appointment prior to surgery.

Please call on me at any time if you have questions. My private

email is jarrigo@...

Jan

>

[Guest guest]

Thanks Jan. Do we have a Jan's Conn's story yet?

In a message dated 9/27/07 2:32:36 PM, jarrigo@... writes:

>

>

> >

> > I am very new at this so please bear with me. I need an excellent

> > endochronologist in the San Francisco or Sacramento area as I am

> > having a hard time getting an appt. I am currently on 4 different

> > meds for bp and high amounts of k as my kidneys keep secreting

> it.

> > I am stable now with k and my bp but am having extreme fatigue and

> > sleeping sometimes 18 hrs a day. severe headaches and extreme

> > cramping even writing this i cramp. I feel like such a baby i

> have

> > never been ill and this is really throwing me off. please any

> > advice or info would be so greatly appreciated. i have my own

> > cleaning service and am not able to work. 2 beautiful kids and a

> > wonderful husband. life is on hold and we are all scared. meds are

> > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day,

> > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at

> > night, spironolactone 25mg at night all my symptoms came on very

> > sudden, paralysis, blurred vision, weakness, extreme fatigue,

> > migranes,very irritable(actually irritable tingling in hands and

> > feet blurred vision and headaches started it all and lasted about

> 2

> > weeks before i was admitted to the critical care unit for 5 days.)

> > thank you all in advance i may not be able to reply due to

> cramping.

> > k is 4.4 now dont understand the cramping? again thank you all.

>

> Dear ,

>

> I can really empathize with you. Your doctors seem to be leaving

> you out there without the help you need. Did your symptoms get

> worse after starting on spironolactone? I have tried it twice as it

> is the best drug for treating postassium and bp. Both times it

> increased nausea, virtigo, vision disturbances, weakness and other

> symptoms. I have now discontinued it and waiting for potassium

> report to see if I have to try another drug. Spironolactone will

> raise your potassium if the problem is aldosterone. It can also

> raise it too high in combination with other drugs(I just did that).

> It can also lower your sodium which is good if it doesn't lower it

> too much. You should check this regularly along with potassium.

> When I was going through this, my husband and I called it the merry-

> go-round. If you need to stop the spiro, you can take potassium

> supplements.

>

> I have been seeing a neurologist for about 3 years for headaches.

> Before I knew that I had PA, my headaches kept getting worse until I

> was having daily headaches. My neuroligist reduced the headaches to

> almost none, in a very short time with a low dose of elavil. Also,

> by increasing the dose to 70mg(this is still a low dose) I am having

> less pain in feet, legs, arms, and hands.

>

> You need immediate help from qualified doctors. Oceanside is too

> far for you in your condition but I know there are at least 2 others

> on this message board from the San Francisco area. One is Sapna_52

> and the other is Farah Rahbar. You can look for their posts and

> send a request directly to them. Also, there is a Mayo Clinic in

> Arizona and you should consider going there if you can manage it.

> Should you need surgery, I highly recommend my surgeon, Dr. Fierer,

> as it is a short hospital stay and you could easily fly in for a

> couple of days. If your advanced workup is done well by competent

> doctors, you should only need one appointment prior to surgery.

>

> Please call on me at any time if you have questions. My private

> email is jarrigo@...

>

> Jan

> >

>

>

>

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

I would call Dr. Willa Hseuh's office (UCLA) or Dr Vito Campese (USC) and

tell them Dr. Grim referred you. If you cant see them (very busy) they should

know someone who knows what they are doing there.

In a message dated 9/27/07 12:43:01 PM, viumber@... writes:

>

> Have you been tested for Cushing's yet? If your cortisol was high that would

> be a clue. I had normal aldosterone, low renin and high cortisol (at times).

> Cyclical cushings and most likely conns too. I found a good endocrinologist

> in LA. Pathology report said I had micronodular adrenal hyperplasia. It was

> causing my high blood pressure and a multitude of problems. Violet

>

> lisaconns <lisaconns@...> wrote: not clear about prognosis yet. i live

> in a small town and the drs

> did not prep me for the test correctly according to my research. My

> alderterone is normal renin is low and cortisol is high but am tolk

> by dr in small town that is perfectly normal? Go figure. I am

> definately confused. I really need to find a good endochronologist

> and lots of new friends of my group here. I have no doubt you will

> all be lots of help and inspiration Thank you I am going in for a k

> check with my print out to make sure it is done right today. I bet

> that makes a difference. Ct scan in san francisco went to emergency

> room (5hr drive from home) shows both adrenal glands enlarged no

> specifics yet other than that trying to get records and a

> specialist.

>

> > How clear is the Dx fo Conn's? Need more details. Many will

> need a lot

> > more Sprio to get to goal. Have you been on more?

> >

> >

> > Be sure blood was drawn correctly to make sure they did not miss

> low K. See

> > our files on this.

> >

>

> > >

> > >

> > >

> >

> >

> >

> >

> >

> > May your pressure be low!

> >

> > Clarence E. Grim, BS, MS, MD

> > Senior Consultant to Shared Care Research and Consulting, Inc.

> > (sharedcareinc. (sh

> > Clinical Professor of Internal Medicine and Epidemiology Med. Col.

> WI

> > Clinical Professor of Nursing, Univ. of WI, Milwaukee

> >

> > Specializing in Difficult to Control High Blood Pressure

> > and the Physiology and History of Survival During

> > Hard Times and Heart Disease today.

> >

> > > ************ ******** ******** *******

> > See what's new at http://www.aol.htt

> >

> >

> >

[Guest guest]

In a message dated 9/27/07 11:30:44 AM, lisaconns@... writes:

> alderterone is normal renin is low

>

As you can see in my article on the evolution of PA you likely have early PA.

If renin is low aldo should also be low. Can you get exact numbers and the

normals for that lab for us to look at.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

>

>

> In a message dated 9/27/07 11:30:44 AM, lisaconns@... writes:

>

>

> > alderterone is normal renin is low

> >

>

> As you can see in my article on the evolution of PA you likely

have early PA.

> If renin is low aldo should also be low. Can you get exact

numbers and the

> normals for that lab for us to look at.

> Thank you all so much for the help. You are my lifeline right now

and I promise to check out all the advice. I am sorry you are all

going through thisas well. My renin was 0.1 sitting up but I was

laying down most of the day (the same with all these tests i will

share) I would like to add that i take estratest 1.25/2.5 for a

hysterectomy. cortisol free 61.5 cortisone urine 41.2

cortisol/cortisone ratio 1.49. I started taking the spiro while i

was admitted to the hospital and can not remember if i was taking it

while they were doing these tests. they did nothing to prep me.

when admitted potassium was 1.9. now 4.4. I asked yesterday to

follow the potassium test as per paper and they regused saying it

did not make a difference. I don't believe that could i please get

more specific info because i do want to follow through. my body is

cramping so bad. i am typing with my right hand only as the left

cramped minutes ago and is so weak i can't lift it. when i went to

san francisco they did a ct and stated that i have hyperplasia in

both adrenal glands. that is all i know about that and have been

trying to get med records but no luck yet. ast=94 alt=232 bun=6

sodium=146 potatissum=3.3 co2=36 this was the morning after being

admitted. everything is now normal as of yesterday. any info i can

give i would be happy to give. If you need anything faxed or sent i

am more than willing. I don't know if there are rules or not as to

giving real info please let me know. I have never belonged to a

chat group before. thanks again everyone.

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

>

>

> **************************************

> See what's new at http://www.aol.com

>

>

>

[Guest guest]

>

>

> In a message dated 9/27/07 11:30:44 AM, lisaconns@... writes:

>

>

> > alderterone is normal renin is low

> >

>

> As you can see in my article on the evolution of PA you likely

have early PA.

> If renin is low aldo should also be low. Can you get exact

numbers and the

> normals for that lab for us to look at.

> normals are:

renin 0.1

supine 0.2-1.6

upright 0.5-4.0

aldo 1.6

upright 4.0-31.0

supine 16.0 or less

unspecified 31 or less

normal sodium intake

aldo urine not sure how to read

24 hr urine

total volume 5200

creatinine urine 29

unit mg/dl

creatinine,urine/day 1508

reference range 700 to 1600

unit: mg/d

the urine aldo concertration is less that 160 ng/dl which is the

sensivity limit of this assay. Based on the total volume of this

sample the urine aldo is less than 8.3 ug/d

i was on a normal sodium intake in the hospital that range is

normal (100-200 meq) 6-25 ug/24 hrs

cortisol, urine free 61.5 H (<45.0)

cortisone, urine 41.2

cortisol/cortisone ratio 1.49 H (0.15-0.50)

sorry i forgot to write in the ranges.

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

>

>

> **************************************

> See what's new at http://www.aol.com

>

>

>

[Guest guest]

Sounds like you have PA for sure and may need to be on more Spiro and DASHing

like your life depended on it.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

>

>

> In a message dated 9/27/07 10:25:23 AM, lisaconns@... writes:

>

> I was on 50 mg of spiro twice daily but ucsf changed it on 9/13/07

when they were able to get my bp under control. thank you for all

your help. Do you happen to have a number for willa Hseuh's or vito

CAMPESE. I can just google it too. Thank you again DR Grim for

helping. Is there a way I can come fly and see you?

> >

> > I am very new at this so please bear with me. I need an excellent

> > endochronologist in the San Francisco or Sacramento area as I am

> > having a hard time getting an appt. I am currently on 4 different

> > meds for bp and high amounts of k as my kidneys keep secreting

it.

> > I am stable now with k and my bp but am having extreme fatigue

and

> > sleeping sometimes 18 hrs a day. severe headaches and extreme

> > cramping even writing this i cramp. I feel like such a baby i

have

> > never been ill and this is really throwing me off. please any

> > advice or info would be so greatly appreciated. i have my own

> > cleaning service and am not able to work. 2 beautiful kids and a

> > wonderful husband. life is on hold and we are all scared. meds

are

> > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day,

> > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at

> > night, spironolactone 25mg at night

> >

> How clear is the Dx fo Conn's? Need more details. Many will

need a lot

> more Sprio to get to goal. Have you been on more?

>

>

> > all my symptoms came on very

> > sudden, paralysis, blurred vision, weakness, extreme fatigue,

> > migranes,very irritable(actually irritable tingling in hands and

> > feet blurred vision and headaches started it all and lasted

about 2

> > weeks before i was admitted to the critical care unit for 5

days.)

> > thank you all in advance i may not be able to reply due to

cramping.

> > k is 4.4 now dont understand the cramping? again thank you all.

> >

> Be sure blood was drawn correctly to make sure they did not miss

low K. See

> our files on this.

> >

> >

> >

>

>

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

>

>

> **************************************

> See what's new at http://www.aol.com

>

>

>

[Guest guest]

> >

> > I am very new at this so please bear with me. I need an

excellent

> > endochronologist in the San Francisco or Sacramento area as I am

> > having a hard time getting an appt. I am currently on 4

different

> > meds for bp and high amounts of k as my kidneys keep secreting

> it.

> > I am stable now with k and my bp but am having extreme fatigue

and

> > sleeping sometimes 18 hrs a day. severe headaches and extreme

> > cramping even writing this i cramp. I feel like such a baby i

> have

> > never been ill and this is really throwing me off. please any

> > advice or info would be so greatly appreciated. i have my own

> > cleaning service and am not able to work. 2 beautiful kids and

a

> > wonderful husband. life is on hold and we are all scared. meds

are

> > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day,

> > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg

at

> > night, spironolactone 25mg at night all my symptoms came on very

> > sudden, paralysis, blurred vision, weakness, extreme fatigue,

> > migranes,very irritable(actually irritable tingling in hands and

> > feet blurred vision and headaches started it all and lasted

about

> 2

> > weeks before i was admitted to the critical care unit for 5

days.)

> > thank you all in advance i may not be able to reply due to

> cramping.

> > k is 4.4 now dont understand the cramping? again thank you all.

>

> Dear ,

>

> I can really empathize with you. Your doctors seem to be leaving

> you out there without the help you need. Did your symptoms get

> worse after starting on spironolactone? I have tried it twice as

it

> is the best drug for treating postassium and bp. Both times it

> increased nausea, virtigo, vision disturbances, weakness and other

> symptoms. I have now discontinued it and waiting for potassium

> report to see if I have to try another drug. Spironolactone will

> raise your potassium if the problem is aldosterone. It can also

> raise it too high in combination with other drugs(I just did

that).

> It can also lower your sodium which is good if it doesn't lower it

> too much. You should check this regularly along with potassium.

> When I was going through this, my husband and I called it the

merry-

> go-round. If you need to stop the spiro, you can take potassium

> supplements.

>

> I have been seeing a neurologist for about 3 years for headaches.

> Before I knew that I had PA, my headaches kept getting worse until

I

> was having daily headaches. My neuroligist reduced the headaches

to

> almost none, in a very short time with a low dose of elavil. Also,

> by increasing the dose to 70mg(this is still a low dose) I am

having

> less pain in feet, legs, arms, and hands.

>

> You need immediate help from qualified doctors. Oceanside is too

> far for you in your condition but I know there are at least 2

others

> on this message board from the San Francisco area. One is Sapna_52

> and the other is Farah Rahbar. You can look for their posts and

> send a request directly to them. Also, there is a Mayo Clinic in

> Arizona and you should consider going there if you can manage it.

> Should you need surgery, I highly recommend my surgeon, Dr. Fierer,

> as it is a short hospital stay and you could easily fly in for a

> couple of days. If your advanced workup is done well by competent

> doctors, you should only need one appointment prior to surgery.

>

> Please call on me at any time if you have questions. My private

> email is jarrigo@...

>

> Jan

> >Your info is wonderful will definately be talking to dr about

these massive headaches. I have had more helpful advice on this site

than i have since i started. How blessed i am to have you all.

Please any and all info would be great. Everyone that knows me says

they I am the strongest woman they have ever met and that they could

write a book about my life. let me tell ya i have never had any

medical problems to speak of (hysterectomy twice cleft lip repairs

and pregnancy problems) other than that perfect. I am not so strong

now.. For the most part just leave me alone and let me sleep. I am

an extremely high energy person EVERYONE around me is worried. I

know I will get through this I judt don't know when. Thank you too

Violet for your help. Someday when I can learn about this and get

through this I vow to be a help and inspiration to someone else in

my shoes now. Thanks everyone

>

[Guest guest]

You do not have primary aldo with the very low PRA and low aldo.

You may have another rare condition.

Do you eat licoric every day?

Tell us what else you are taking-everything.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Not now but I am retiring to S Lake Tahoe and will have a consulting service

there if I can make it cost effective enough to cover malpractice insurance.

I dont have their numbers-should be in phone book. Call Dept of Medicine to

get names.

Just met a colleagure from NY and we are thinking about forming a MD Society

for Primary Aldosteronism. More on that later.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Also talked to Dr. Ted Kurtz at UCSF and he told me there is a group there

but did not get the name. You can call his office to get the name.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

These two symptoms scream " hypothyroidism. "

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lisaconns

will definately be talking to dr about these massive headaches.

For the most part just leave me alone and let me sleep.

[Guest guest]

> > >

> > > I am very new at this so please bear with me. I need an

> excellent

> > > endochronologist in the San Francisco or Sacramento area as I

am

> > > having a hard time getting an appt. I am currently on 4

> different

> > > meds for bp and high amounts of k as my kidneys keep secreting

> > it.

> > > I am stable now with k and my bp but am having extreme fatigue

> and

> > > sleeping sometimes 18 hrs a day. severe headaches and extreme

> > > cramping even writing this i cramp. I feel like such a baby i

> > have

> > > never been ill and this is really throwing me off. please any

> > > advice or info would be so greatly appreciated. i have my own

> > > cleaning service and am not able to work. 2 beautiful kids and

> a

> > > wonderful husband. life is on hold and we are all scared. meds

> are

> > > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day,

> > > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg

> at

> > > night, spironolactone 25mg at night all my symptoms came on

very

> > > sudden, paralysis, blurred vision, weakness, extreme fatigue,

> > > migranes,very irritable(actually irritable tingling in hands

and

> > > feet blurred vision and headaches started it all and lasted

> about

> > 2

> > > weeks before i was admitted to the critical care unit for 5

> days.)

> > > thank you all in advance i may not be able to reply due to

> > cramping.

> > > k is 4.4 now dont understand the cramping? again thank you all.

> >

> > Dear ,

> >

> > I can really empathize with you. Your doctors seem to be leaving

> > you out there without the help you need. Did your symptoms get

> > worse after starting on spironolactone? I have tried it twice as

> it

> > is the best drug for treating postassium and bp. Both times it

> > increased nausea, virtigo, vision disturbances, weakness and

other

> > symptoms. I have now discontinued it and waiting for potassium

> > report to see if I have to try another drug. Spironolactone will

> > raise your potassium if the problem is aldosterone. It can also

> > raise it too high in combination with other drugs(I just did

> that).

> > It can also lower your sodium which is good if it doesn't lower

it

> > too much. You should check this regularly along with potassium.

> > When I was going through this, my husband and I called it the

> merry-

> > go-round. If you need to stop the spiro, you can take potassium

> > supplements.

> >

> > I have been seeing a neurologist for about 3 years for

headaches.

> > Before I knew that I had PA, my headaches kept getting worse

until

> I

> > was having daily headaches. My neuroligist reduced the headaches

> to

> > almost none, in a very short time with a low dose of elavil.

Also,

> > by increasing the dose to 70mg(this is still a low dose) I am

> having

> > less pain in feet, legs, arms, and hands.

> >

> > You need immediate help from qualified doctors. Oceanside is too

> > far for you in your condition but I know there are at least 2

> others

> > on this message board from the San Francisco area. One is

Sapna_52

> > and the other is Farah Rahbar. You can look for their posts and

> > send a request directly to them. Also, there is a Mayo Clinic in

> > Arizona and you should consider going there if you can manage

it.

> > Should you need surgery, I highly recommend my surgeon, Dr.

Fierer,

> > as it is a short hospital stay and you could easily fly in for a

> > couple of days. If your advanced workup is done well by

competent

> > doctors, you should only need one appointment prior to surgery.

> >

> > Please call on me at any time if you have questions. My private

> > email is jarrigo@

> >

> > Jan

> > >Your info is wonderful will definately be talking to dr about

> these massive headaches. I have had more helpful advice on this

site

> than i have since i started. How blessed i am to have you all.

> Please any and all info would be great. Everyone that knows me

says

> they I am the strongest woman they have ever met and that they

could

> write a book about my life. let me tell ya i have never had any

> medical problems to speak of (hysterectomy twice cleft lip repairs

> and pregnancy problems) other than that perfect. I am not so

strong

> now.. For the most part just leave me alone and let me sleep. I

am

> an extremely high energy person EVERYONE around me is worried. I

> know I will get through this I judt don't know when. Thank you too

> Violet for your help. Someday when I can learn about this and get

> through this I vow to be a help and inspiration to someone else in

> my shoes now. Thanks everyone

Dear ,

I forgot to mention migraine headaches. I have suffered from

migraines since I was about 12 - about 1 or 2 a year. Approx. 6

years before I was diagnosed, the migraines got worse. I made several

trips to the hospital for shots. I stumpled into a treatment to

reduce the severity of the headaches through all of the trips to the

hospital. They treated me with demerol and phenergan. So I asked my

doctor for lorcet and phenergan. 1/2 locet and 1/2 phenergan(25mg)

at first sign of a migraine reduced the symptoms and I was okay in a

couple of hours.I finally saw a neurologist as the headaches were

almost daily and I couldn't take drugs all day long. The typical

meds for migraines were also out of the questions due to the side

effects. On my second visit to the neurologist, he prescribed 20mg

of elavil and a short regimen of prednisone. This has cured the

daily headaches and I only have an occasional headache which I can

treat with 1/2 lorcet and 1/2 lorcet.

Another treatment I discovered accidentally, was that elavil at

higher doses treats most of the pain in my hands, arms, feet, legs

and shoulders. I had to play with the dosage a bit but I am now

almost pain free and am able to do things I haven't been able to do

in about 5 years. It's truly a miracle! I don't think I've cured the

root cause which probably is connected to PA. For anyone reading

this, if the pain is a burning pain (I also had bright red feet at

night), you should talk to your doctor about elavil(amytriptyline).

We are hearing from a lot of friends that they are being treated by

elavil for pain. You will feel tired with any of these meds at first

but it wears off pretty quickly.

I know this is a bit wordy but I really want to get the word out

about these drugs as they are very effective with little side

effects. Good luck and keep in touch.

Jan

> >

>

[Guest guest]

Jan are you talking about these problems as due to your PA or something else.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Call the office of Dr. Lawrence Krakoff or Atlas in NYC tell them Dr.

Grim sent you.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Low K and high aldo almost never go away. What did they think was causing

your low K when first picked up.

What we need are all the details about your BP, its RX and the Hx of the low

K and its Rx.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Most of your Sx may be related to low K. Only by being properly tested for

PA and they treated if you have it can the relationship of all your other

problems to PA be determined.

Headache is a very common problem in PA.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Dr. Lawrence Krakoff or Atlas in NYC.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

>

> Jan are you talking about these problems as due to your PA or

something else.

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

Good Doctor Grim,

I am only now beginning to connect the dots. I had been treating all

my symptoms for about 20 years and doctors were never sure of the

cause. I even took allergy shots for 5 years and the headaches got

worse. When I finally went to a neurologist, about 3 years ago, I

was having headaches daily with no apparent reason. He is a highly

respected neurologist but could not give me a clear diagnosis. This

is not uncommon with headache sufferers. He also tested me for

neuropathy as I had no apparent reason for neuropathy pain. All of

the pain was completely gone after my adrenalectomy(feet and legs

about 2 weeks and shoulders and arms about 2 months) Over the last

20 years, I have gone to the emergency room for severe headaches or

severe chest pain at least 10 times. I have had MRI's of brain,

sinus and neck, complete heart work ups twice and neck ultrasound

The only thing they ever found was low potassium (2.8 the last

time). I would take potassium for a month and go about my life

until the next time (too bad they didn't do a chest MRI!) None of my

current doctors have ignored any of these symptoms. They just

weren't sure of the cause.

Now, low potassium and high aldosterone is back. Blood pressure is

under control but a little higher than it was. I just increased

elavil to 80 mg as pain in my feet and legs is back after about 10

months pain free. I was unable to do anything involving walking or

standing more than 30 minutes for years prior to elavil and I want

others to know that there's hope.

I don't know if all the symptoms are connected to PA or not but I'm

trying to learn as much as I can and stay out of trouble. It's at

least curious that many patients on this message board are

experiencing similar pains and headaches. Any advice is much

appreciated.

Jan

>

>

>

> **************************************

> See what's new at http://www.aol.com

>

>

>

[Guest guest]

>Just met a colleague from NY and we are thinking

>about forming a MD Society

>for Primary Aldosteronism. More on that later.

Dr. Grim

Who and where in NY?

I am interested in knowing because I would like

someone in my state to help me with continued care

post surgery. The local doctors are very difficult to

deal with and have little comprehension of PA except

for the statement that " you are an oddity, it is

extremely rare " even after I show them the literature.

They are all medication oriented and do not promote

DASH, again, even when shown supporting literature.

Appointments are rushed, they do not listen and I am

preached to about " current guidelines " for my age

group and past history of hypertension.

My endocrinologists do help a little, but none of the

doctors communicate directly with my PCP, I have to

stand up for myself repeatedly.

Even after showing them your e-mail with the statement

my current diagnosis should be " Secondary HTN due to

Primary Aldosteronism corrected by a left

adrenalectomy " I am classified as HTN period!

I am not hypertensive now but that doesn't seem to

matter to them since they get 160/90 in the office

with totally improper technique and I get consistent

good numbers at home at all times. They act like I am

fudging the numbers even though I show them a log

calendar.

It is similar to the way I was treated for 13 years

before someone finally took me seriously and did

proper testing to find the adrenal adenoma and Conn's

diagnosis. I am very sensitive to the disbelief and

rather avoid going to the Dr. than have to continually

prove myself.

I need a physician in my corner.

________________________________________________________________________________\

____

Take the Internet to Go: Go puts the Internet in your pocket: mail, news,

photos & more.

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[Guest guest]

>Just met a colleague from NY and we are thinking

>about forming a MD Society

>for Primary Aldosteronism. More on that later.

Dr. Grim

Who and where in NY?

I am interested in knowing because I would like

someone in my state to help me with continued care

post surgery. The local doctors are very difficult to

deal with and have little comprehension of PA except

for the statement that " you are an oddity, it is

extremely rare " even after I show them the literature.

They are all medication oriented and do not promote

DASH, again, even when shown supporting literature.

Appointments are rushed, they do not listen and I am

preached to about " current guidelines " for my age

group and past history of hypertension.

My endocrinologists do help a little, but none of the

doctors communicate directly with my PCP, I have to

stand up for myself repeatedly.

Even after showing them your e-mail with the statement

my current diagnosis should be " Secondary HTN due to

Primary Aldosteronism corrected by a left

adrenalectomy " I am classified as HTN period!

I am not hypertensive now but that doesn't seem to

matter to them since they get 160/90 in the office

with totally improper technique and I get consistent

good numbers at home at all times. They act like I am

fudging the numbers even though I show them a log

calendar.

It is similar to the way I was treated for 13 years

before someone finally took me seriously and did

proper testing to find the adrenal adenoma and Conn's

diagnosis. I am very sensitive to the disbelief and

rather avoid going to the Dr. than have to continually

prove myself.

I need a physician in my corner.

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing./

[Guest guest]

>

> You do not have primary aldo with the very low PRA and low aldo.

>

> You may have another rare condition.

>

> Do you eat licoric every day?

>

> Tell us what else you are taking-everything.

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

> What other condition do you think it may be and what is PRA and

how does it affect a person. I don't eat licorice everyday although

i have been known to binge once in a great while.. Explained in the

other post. Do you believe the aldo test could be wrong because of

the estragen or other meds or not being prepped for the test? They

did nothing but a blood draw. No salt loading etc... Don't

understand it yet just trying to learn

>

> **************************************

> See what's new at http://www.aol.com

>

>

>