Removal of adrenal gland

October 1, 2009

Most Univ Hospitals are better at Conn's. But dont know Tulsa.You want to know how many they have treated and followed up for how long and what their cure rate is.Also how many AVSs have they done. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Difficult High Blood Pressure and the interactions of recent evolutionary forces and environmental factors on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 1, 2009, at 4:41 PM, Lori wrote: Do you mean OU Medical Center ? I hate that place ! I was a nurse in Trauma there. It is very difficult to get in due to long wait, it is a teaching hospital, they are notorious for their crappy tx of patients . My MD knows the endo in Tulsa really well and St. Francis in Tulsa is a sister hospital to the one I work for now. We do not have endo any longer at my hospital. Plus no OKC docs are in network w/ my insurance. I am praying they will pay for some of this From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .

October 1, 2009

I am pretty sure they did not "invent the procedure". I think Dr. Conn's place was one of the first. U of Mich Ann Arbor. Ask them for the ref. Would be a good historical fact to know. Who did the first adrenal vein blood sampling for aldo? I know that JO was doing it experimentally in dogs and indeed that was how it was discovered that renin was the long sought aldosterone stimulating hormone. Until that time we did not know what was controlling aldo. Some thought ACTH, some the brain, some the pineal. If you want to read some classical examples of experimental medicine please search for JO at NIH. Excellently written. He always said it just takes one good experiment to find the answer. They rest were to get the statistics so it could be published. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 1, 2009, at 6:52 PM, Bindner wrote: NIH is doing my AVS for free. Have your endo send them your results and films and maybe they will take you on. NIH invented the procedure and the person who did mine was trained by the originator. Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .

October 1, 2009

But ask your Dr. first as he/she knows you better. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 1, 2009, at 6:59 PM, Lori wrote: Thank you, I will sure try that and see if it helps w/ symptoms. Thanks again ! You can check these sites. http://www.inspire. com/groups/ rare-disease/ discussion/ conns-syndrome- hyperaldosteroni sm/ http://www.kidneyat las.org/book3/ adk3-04.QXD. pdf#search= %22Glucocorticoi d%20Remedial% 20Aldosteronism% 22 > > > From: Valarie <val@>> > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > > > Please tell us your test values, pre spiro for:> > aldosterone> > renin> > potassium> > > > > > Val> > > > > > >> > > > .>

October 2, 2009

The info is on the wall at NIH in the wing where they do it, which is dedicated to the pioneer of the procedure. Next time I am having one, I will have my wife write down the name.

Bindner

Web Directory (links to my sites and blogs):

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From: Valarie <val@...>

Lori, where are you having the AVS, i.e. what hospital and where?

Val

..

October 2, 2009

Val- Thanks for the input. I really do appreciate it. I was treated like it was a phantom illness for yrs until my new PCP decided to do US. IT showed an almost 4 cm x 4 cm ( that's right,centimeter not millimeter) adenoma. I finally felt like I had the answer to my yrs of hypokalemia and fatigue. I had actually been able to keep my blood pressure in the 130/90 range pre meds by doing low salt. But if I miss more than a few days of Spiro or K+ it gets 160/120. I feel that there are alot more people who suffer from this but docs are so quick to dismiss their symptoms. If I had a nickel for every time I heard perimenopause or depression I could pay fo the AVS out of pocket !! Maybe I will get more answers on my endo appt. Thanks again, Lori -- On Thu, 10/1/09, Valarie <val@...> wrote:

From: Valarie <val@...>Subject: RE: Re: Removal of adrenal glandhyperaldosteronism Date: Thursday, October 1, 2009, 9:18 PM

Lori, I understand. My experience at U of Colorado was awful. The endo had erroneous information about PA and wrote it in my record. She concluded, because an adenoma could not be seen on a 5 mm CT, that PA was not possible. Once she ruled out Cushing's, she lost interest. I'm sure there are brilliant individuals at those institutions but, unfortunately, we haven't seen them.

It still depends on the experience of radiologist. That's why his/her experience should be ascertained. AVS is not a benign procedure.

Val

From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori

Do you mean OU Medical Center ? I hate that place ! I was a nurse in Trauma there. It is very difficult to get in due to long wait, it is a teaching hospital, they are notorious for their crappy tx of patients . My MD knows the endo in Tulsa really well and St. Francis in Tulsa is a sister hospital to the one I work for now. We do not have endo any longer at my hospital. Plus no OKC docs are in network w/ my insurance. I am praying they will pay for some of this

,_._,___

October 4, 2009

a I am sure you meant to say MCBs AND DASHing. ;-)I was also thinking it was you who got billed this from UM but may be wrong.By all means you want to know how much it may cost if May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Difficult High Blood Pressure and the interactions of recent evolutionary forces and environmental factors on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 1, 2009, at 6:13 PM, a Hall wrote: Lori, Barring complications, the AVS is an outpatient procedure so your main concern should be the Interventional Radiologist who will be performing it. Ask him how many AVS he has performed. Then ask him how many AVS he has SUCCESSFULLY done, meaning canulated and gotten a good sample from both left and right adrenal veins. It's not a procedure that just any Radiologist is capable of or should be performing. If you're not sure that your insurance is going to cover it I'd ask in advance how much the charge will be since they seem to vary wildly. If I remember correctly one person in this group got a bill for $36,000, or some such ridiculous amount. Dr. Grim will have to address this further but I don't believe it's possible to have Conn's if Spiro or Inspra does nothing for you, MC's are the only thing that works for us. Or like he said, maybe you just need a higher dose. a From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .

October 4, 2009

I should have included DASH, I was only thinking of medications. My bill at U-M was about $14,000 of which my insurance paid less than half and they accepted it as full payment.

a

From: Valarie <val@...>

Lori, where are you having the AVS, i.e. what hospital and where?

Val

..

October 4, 2009

I'm fortunate that I'm able to be off work for the time being. I was working

part-time in the past (2 years off-mat leave/mom lung cA) and was just starting

to get back into the work force. Then, all my symptoms started... I have 3 kids

and I can see how you must be finding it extremely difficult to cope. Your

plate is full and PA debilitating symptoms on top of all that! Wow, you must be

finding it rough.

I've read that some patients (on other sites) have had an adrenal removed and

have symptoms reoccur. Do you have an AVS booked yet?

Take care

Chantal

>

> From: Valarie <val@...>

> Subject: RE: Removal of adrenal gland

> hyperaldosteronism

> Date: Monday, September 28, 2009, 3:10 PM

>

> Lori, there is no reason to have surgery if the adenoma is not over-producing

aldosterone. You need to have adrenal vein sampling before you let any knives

near you. Your 100 mg of spironolactone may still be much too little.

>

> Please tell us your test values, pre spiro for:

> aldosterone

> renin

> potassium

>

> Val

>

> From: hyperaldosteronism [mailto:hyperaldost

eronism@gro ups.com] On Behalf Of Lori

>

> Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level

at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg

plus 60 meq potassium daily. I feel absolutely no difference in my symptoms.

This is month number 4 on increased dose. I have extreme fatigue and " brain

fog " ,edema, BP still elevated.I am literally so tired that I can barely put one

foot in front of the other. I am seeing an endo who is supposed to consult with

a surgeon about removal of tumor and gland.This has given me some hope that this

will get better. Has anyone else here had an adrenalectomy ? If so, what it open

or laparoscopic ? How soon before you noticed a difference in your symptoms ?

How soon were you able to return to work ? Any input regarding this is very much

appreciated ! Thanks in advance ! Lori

>

October 4, 2009

Hi, Chantal ! I was supposed to have AVS done but my insurance won't cover it. I have good days and bad days. Bad outweighs the good right now. Without the AVS I dont know what can be done. I am starting to feel pretty hopeless about this. I feel like I walk around in cement shoes most of the time.My husband is tired of it, my kids miss out on having a "normal" mom because I am so tired and fuzzy most of the time, I have zero patience. Sorry to be such a downer, I am just really upset at my insurance company and tired of feeling like poo all the time .

From: Chantal <chantalrobichaud29@...>Subject: Re: Removal of adrenal glandhyperaldosteronism Date: Sunday, October 4, 2009, 8:24 PM

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism> Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33

on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 4, 2009

a I am sure you meant to say MCBs AND DASHing. ;-)I was also thinking it was you who got billed this from UM but may be wrong.By all means you want to know how much it may cost if May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Difficult High Blood Pressure and the interactions of recent evolutionary forces and environmental factors on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 1, 2009, at 6:13 PM, a Hall wrote: Lori, Barring complications, the AVS is an outpatient procedure so your main concern should be the Interventional Radiologist who will be performing it. Ask him how many AVS he has performed. Then ask him how many AVS he has SUCCESSFULLY done, meaning canulated and gotten a good sample from both left and right adrenal veins. It's not a procedure that just any Radiologist is capable of or should be performing. If you're not sure that your insurance is going to cover it I'd ask in advance how much the charge will be since they seem to vary wildly. If I remember correctly one person in this group got a bill for $36,000, or some such ridiculous amount. Dr. Grim will have to address this further but I don't believe it's possible to have Conn's if Spiro or Inspra does nothing for you, MC's are the only thing that works for us. Or like he said, maybe you just need a higher dose. a From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .

October 5, 2009

Trust you will be tried on MCRBs as soon as AVS done if not before. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 4, 2009, at 8:37 PM, Lori wrote: Hi, Chantal ! I was supposed to have AVS done but my insurance won't cover it. I have good days and bad days. Bad outweighs the good right now. Without the AVS I dont know what can be done. I am starting to feel pretty hopeless about this. I feel like I walk around in cement shoes most of the time.My husband is tired of it, my kids miss out on having a "normal" mom because I am so tired and fuzzy most of the time, I have zero patience. Sorry to be such a downer, I am just really upset at my insurance company and tired of feeling like poo all the time . From: Chantal <chantalrobichaud29 (DOT) ca>Subject: Re: Removal of adrenal glandhyperaldosteronism Date: Sunday, October 4, 2009, 8:24 PM I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism> Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

a is also a nurse as I recall. Doing fairly well on spiro.What in the world is YAZ did not know it had spiro in it. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 4, 2009, at 8:24 PM, Chantal wrote: I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take care Chantal > > > From: Valarie <val@...> > Subject: RE: Removal of adrenal gland > hyperaldosteronism > Date: Monday, September 28, 2009, 3:10 PM > > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > Please tell us your test values, pre spiro for: > aldosterone > renin > potassium > > > Val > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori > >

October 5, 2009

Thanks. I consider DASH a medication May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 4, 2009, at 4:50 PM, a Hall wrote: I should have included DASH, I was only thinking of medications. My bill at U-M was about $14,000 of which my insurance paid less than half and they accepted it as full payment. a From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .

October 5, 2009

call your state insurance commissioner. If you have had a saline suppression test that shows PA, the AVS is indicated by Endocrinology guidelines.

Bindner

Web Directory (links to my sites and blogs):

http://www.geocities.com/mikeybdc/index.html

http://mikeybdc.blogspot.com

From: Chantal <chantalrobichaud29@ .ca>Subject: [hyperaldosteronism ] Re: Removal of adrenal glandhyperaldosteronismDate: Sunday, October 4, 2009, 8:24 PM

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism>

Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference

in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

All insurances have the right to deny payment or decline to cover certain tests. There is nothing abnormal about that. I have worked as a nurse for 16 yrs and have seen sheisty insurance companies refuse to cover chemo for a patient. Just because you pay the premium does not guarantee all services. It's pretty much a crap shoot. As soon as my enrollment period comes up, I am dropping it. Hopefully I can get a carrier that won't consider pre existing conditions excluded.

From: Chantal <chantalrobichaud29@ .ca>Subject: [hyperaldosteronism ] Re: Removal of adrenal glandhyperaldosteronismDate: Sunday, October 4, 2009, 8:24 PM

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism>

Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference

in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

Yaz is a BCP, a form of Yasmin. It has 25 mg spiro in it. Had to stop it due to BP issues. From: Clarence Grim <lowerbp2@...>Subject: Re: Re: Removal of adrenal glandhyperaldosteronism Date: Monday, October 5, 2009, 1:11 AM

a is also a nurse as I recall. Doing fairly well on spiro.

What in the world is YAZ did not know it had spiro in it.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Specializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure".

Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.

Listed in Best Doctors of America 2009.

On Oct 4, 2009, at 8:24 PM, Chantal wrote:

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism> Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > >

> > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori>

>

October 5, 2009

Ok, what is an MCRB ????

From: Chantal <chantalrobichaud29@ .ca>Subject: [hyperaldosteronism ] Re: Removal of adrenal glandhyperaldosteronismDate: Sunday, October 4, 2009, 8:24 PM

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism>

Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last

check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

you at least have group insurance, so it is more likely you will be covered. I have no such luck - however, at least call the company and threaten to contact the insurance commissioner - they may respond to that.

Bindner

Web Directory (links to my sites and blogs):

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From: Chantal <chantalrobichaud29@ .ca>Subject: [hyperaldosteronism ] Re: Removal of adrenal glandhyperaldosteronismDate: Sunday, October 4, 2009, 8:24 PM

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism>

Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference

in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

Yaz doesn't have spiro in it. It does contain Drospirenone, which is an analog of spiro and has many of its actions. I looked it up several months ago when my oldest niece, who was on 25 mg of spiro for acne, was told when she started Yaz to stop the spiro because her K might become too high on both.

Just because your insurance company denied you once does not mean they won't approve it in the future. You have to have an excellent paper trail. You will probably need a few ARR's, 24 hour urines and possibly a saline suppression test. Of course a sky-high BP on several meds and low K really help, too. ;-) My insurance did not want to pay for mine either because U-M was out of network for me, regardless of the fact that it was the only place in the state that performed them. My PCP fought and argued with them until they finally agreed to pay.

Good luck,

a

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism>

Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg

Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

A MineraloCorticoid Receptor Blocker

i.e in our situation a drug that interferes with the expression of aldosterone

which tries to retain sodium ( and water) and pushes up our blood pressure and

other nasty long term consequences.

The big two MCRBs are spironolactone and eplerenone (trade mark Inspra)

AS

> >

> > From: Valarie <val@>

> > Subject: RE: [hyperaldosteronism ] Removal of adrenal gland

> > hyperaldosteronism

> > Date: Monday, September 28, 2009, 3:10 PM

> >

> > Lori, there is no reason to have surgery if the adenoma is not

over-producing aldosterone. You need to have adrenal vein sampling before you

let any knives near you. Your 100 mg of spironolactone may still be much too

little.

> >

> > Please tell us your test values, pre spiro for:

> > aldosterone

> > renin

> > potassium

> >

> > Val

> >

> > From: hyperaldosteronism [mailto:hyperaldost

eronism@gro ups.com] On Behalf Of Lori

> >

> > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone

level at last check was 33 on 50 mg Spironolactone. It has been increased to 100

mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms.

This is month number 4 on increased dose. I have extreme fatigue and " brain

fog " ,edema, BP still elevated.I am literally so tired that I can barely put one

foot in front of the other. I am seeing an endo who is supposed to consult with

a surgeon about removal of tumor and gland.This has given me some hope that this

will get better. Has anyone else here had an adrenalectomy ? If so, what it open

or laparoscopic ? How soon before you noticed a difference in your symptoms ?

How soon were you able to return to work ? Any input regarding this is very much

appreciated ! Thanks in advance ! Lori

> >

>

October 5, 2009

Yes, I know that Drospirenone is an analogue of spiro, which means that pharmaceutically it is nearly identical to it. Even if my insurance covers their portion of AVS, I still can't pay the remaining several thousand dollars. I will just see what my endo advises and maybe he knows some route to get it done at a lower cost. I imagine OU will be my next best bet . They have a long wait but that's fine w/ me. I figue I have lived w/ this for as long as I have now that a few more mos is a short amount of time in the grand scheme of things. How much was your AVS ? How much did you pay out of pocket ? The last thing I need is more medical bills. I have enough from my son that I am struggling to pay.-- On Mon, 10/5/09, a Hall <shahall@...> wrote:

From: a Hall <shahall@...>Subject: Re: Re: Removal of adrenal glandhyperaldosteronism Date: Monday, October 5, 2009, 8:45 AM

Yaz doesn't have spiro in it. It does contain Drospirenone, which is an analog of spiro and has many of its actions. I looked it up several months ago when my oldest niece, who was on 25 mg of spiro for acne, was told when she started Yaz to stop the spiro because her K might become too high on both.

Just because your insurance company denied you once does not mean they won't approve it in the future. You have to have an excellent paper trail. You will probably need a few ARR's, 24 hour urines and possibly a saline suppression test. Of course a sky-high BP on several meds and low K really help, too. ;-) My insurance did not want to pay for mine either because U-M was out of network for me, regardless of the fact that it was the only place in the state that performed them. My PCP fought and argued with them until they finally agreed to pay.

Good luck,

a

I'm fortunate that I'm able to be off work for the time being. I was working part-time in the past (2 years off-mat leave/mom lung cA) and was just starting to get back into the work force. Then, all my symptoms started... I have 3 kids and I can see how you must be finding it extremely difficult to cope. Your plate is full and PA debilitating symptoms on top of all that! Wow, you must be finding it rough. I've read that some patients (on other sites) have had an adrenal removed and have symptoms reoccur. Do you have an AVS booked yet? Take careChantal> > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism>

Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg

Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> >

October 5, 2009

Thanks, I feel stupid !!! I appreciate your response. I am already on Spiro, 100 mg. I was advised by my PCP to go up to 200 over a 2 wk period. The spiro helps with my BP and the muscle spasm from low K+,has helped w/ some things at higher dose. I wonder what the highest doseage of Spiro is that anyone on this forum has taken ?

From: <amsc05@...>Subject: Re: Removal of adrenal glandhyperaldosteronism Date: Monday, October 5, 2009, 8:52 AM

A MineraloCorticoid Receptor Blockeri.e in our situation a drug that interferes with the expression of aldosterone which tries to retain sodium ( and water) and pushes up our blood pressure and other nasty long term consequences.The big two MCRBs are spironolactone and eplerenone (trade mark Inspra) AS> > > > > > From: Valarie <val@>> > Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> > hyperaldosteronism> > Date: Monday, September 28, 2009, 3:10 PM> >

> > > > > > > > > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > > > Please tell us your test values, pre spiro for:> > aldosterone> > renin> > potassium> > > > > > Val> > > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has

been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> > > >>

October 5, 2009

I would call the insurance commissioner can't due no harm. I would then call

one of the numbers on this site

http://rarediseases.info.nih.gov/contactus.aspx. Conn's is a rare diseases

covered under the rare diseases act of 2002. I would also contact your

congressman to see if they can help you.

Most hospitals will work with you as to paying them. If you income is low enough

they will not charge you any thing. At least here in NH there is a law that they

have to accept what ever you can afford to pay them. If you can only pay $50 a

month they can't make you pay any more they can not charge interest on your bill

as long as you pay this amount.