Re: Re: talking to the doc...or trying to get in a word

[Guest guest]

Sadly NOTHING gaurantees you will be listened to except an imminent lawsuit, but it can up your chances!

No matter what many will not go over an entire list with you - so just a caution - so prioritize the top 3 things as they will have you discuss what is the most important. You may get "Okay, we can't go over the entire list today, but is most important you want to talk about?" IF they say it that nice!

It would be great, but time is not endless for all the questions we have, especially in an internet era where we keep finding more and more questions to ask (plus they are typically busy typing today not writing so good luck getting them to even raise their head up) - it would be ideal and most wonderful, but there is a waiting room behind you full of people who do not want to wait to see the doc, just like you didn't like waiting.

No one knows who Dr Conn is, or even Conn's Syndrome, and while some may act like it, they often barely know what hyperaldosteronism is (they will nod in the affirmative because they recognize the term "aldosterone" in it, but I am telling you from experience 9/10 have to look it up).

Wrong, I know, but bringing it in and up needs to be done, but be prepared for their mood to change when you talk about someone else's work, or something you got off the internet by another doctor.

We often go in thinking about sweet red wine and smelling roses .....and then when trying to get answers we end up forgetting those things can also be thorns and poison - so be prepared to stand your ground or understand it may not be as smooth, regardless of the steps you take.

Recent research has shown that exploring the internet is more and more common, but the patient's eyes and mind are naturally drawn to the most dangerous and often rarest things - when common things are much more common so you must be open minded at least when it doesn't show or they won't check you for ragged red fiber disease......you can look it up......wait...better not.

Just words of caution. Until we find a way to fix it for good......

Ok this is a response from my Endo, when I emailed her regarding my BP and concerns that it remains high almost one month post op. I had asked about AVS and why I was not tested. I have my appointment tomorrow and looking for feedback and wondering how accurate her response is. I'm dealing with Kaiser here, and my experiences with them thus far have been negative to say the least. This was her response below. Any feedback would be much appreciated.Thanks!Ms. Abdallah,The main purpose of your appointment with me later this week is, in fact, to go over several of the issues/questions you raised in your email. We always repeat the aldosterone and renin levels after surgery to assess for surgical cure. As you've read, hypertension is improved after surgery for all patients with unilateral disease and is cured (meaning blood pressure medications are no longer required) in about 30-60% of patients. So, very often we are able to reduce

the medications but not stop them all together. I think the significant improvement in your potassium levels is telling in and of itself that you've benefited from the surgery.The adrenal vein sampling tends to be used more in academic and tertiary care level medical centers. Even in these settings, the general guidelines developed by the experts in the field (a consensus report with guidelines was published just a few years ago) indicates that for a patient under the age of 40 with a well defined unilateral adrenal mass the vein sampling could be deferred. If the CT was unclear( meaning the adrenal gland(S) had a nodular or "lumpy" appearance or just appeared generous in size) or did not show a definite mass, then we would have had to pursue the vein sampling. It is a difficult procedure and it is recommended that it only be done by Radiologists with specific training for it (since it can lead to serious complications), so if we had had more

indicators that it was needed, then we would have referred you to get it done at one of the other Kaiser facilities (Hayward does not have a designated Radiologist for this test). So, many patients in your situation do not undergo the AS.My plan was to order the aldosterone and renin test for you when you come in this week (it needs to be done in the morning, before AM). Since your appointment is only 2 days away, I don't think I'd have the results AT the appointment if you do them tomorrow, but I've placed the order for your anyway. You can wait and do them after I see if that's easier. I can try to answer any other questions you have at your appointment.> > > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril

20 mg, and Atenolol 50 mg.> > Thanks guys> >>

[Guest guest]

It seems many on our site here basically made the Dx themselves. Don't know how many made a false Dx and did not get here.CE Grim MDOn Mar 1, 2012, at 1:09 PM, Bingham wrote: Sadly NOTHING gaurantees you will be listened to except an imminent lawsuit, but it can up your chances! No matter what many will not go over an entire list with you - so just a caution - so prioritize the top 3 things as they will have you discuss what is the most important. You may get "Okay, we can't go over the entire list today, but is most important you want to talk about?" IF they say it that nice! It would be great, but time is not endless for all the questions we have, especially in an internet era where we keep finding more and more questions to ask (plus they are typically busy typing today not writing so good luck getting them to even raise their head up) - it would be ideal and most wonderful, but there is a waiting room behind you full of people who do not want to wait to see the doc, just like you didn't like waiting. No one knows who Dr Conn is, or even Conn's Syndrome, and while some may act like it, they often barely know what hyperaldosteronism is (they will nod in the affirmative because they recognize the term "aldosterone" in it, but I am telling you from experience 9/10 have to look it up). Wrong, I know, but bringing it in and up needs to be done, but be prepared for their mood to change when you talk about someone else's work, or something you got off the internet by another doctor. We often go in thinking about sweet red wine and smelling roses .....and then when trying to get answers we end up forgetting those things can also be thorns and poison - so be prepared to stand your ground or understand it may not be as smooth, regardless of the steps you take. Recent research has shown that exploring the internet is more and more common, but the patient's eyes and mind are naturally drawn to the most dangerous and often rarest things - when common things are much more common so you must be open minded at least when it doesn't show or they won't check you for ragged red fiber disease......you can look it up......wait...better not. Just words of caution. Until we find a way to fix it for good...... Ok this is a response from my Endo, when I emailed her regarding my BP and concerns that it remains high almost one month post op. I had asked about AVS and why I was not tested. I have my appointment tomorrow and looking for feedback and wondering how accurate her response is. I'm dealing with Kaiser here, and my experiences with them thus far have been negative to say the least. This was her response below. Any feedback would be much appreciated.Thanks!Ms. Abdallah,The main purpose of your appointment with me later this week is, in fact, to go over several of the issues/questions you raised in your email. We always repeat the aldosterone and renin levels after surgery to assess for surgical cure. As you've read, hypertension is improved after surgery for all patients with unilateral disease and is cured (meaning blood pressure medications are no longer required) in about 30-60% of patients. So, very often we are able to reduce the medications but not stop them all together. I think the significant improvement in your potassium levels is telling in and of itself that you've benefited from the surgery.The adrenal vein sampling tends to be used more in academic and tertiary care level medical centers. Even in these settings, the general guidelines developed by the experts in the field (a consensus report with guidelines was published just a few years ago) indicates that for a patient under the age of 40 with a well defined unilateral adrenal mass the vein sampling could be deferred. If the CT was unclear( meaning the adrenal gland(S) had a nodular or "lumpy" appearance or just appeared generous in size) or did not show a definite mass, then we would have had to pursue the vein sampling. It is a difficult procedure and it is recommended that it only be done by Radiologists with specific training for it (since it can lead to serious complications), so if we had had more indicators that it was needed, then we would have referred you to get it done at one of the other Kaiser facilities (Hayward does not have a designated Radiologist for this test). So, many patients in your situation do not undergo the AS.My plan was to order the aldosterone and renin test for you when you come in this week (it needs to be done in the morning, before AM). Since your appointment is only 2 days away, I don't think I'd have the results AT the appointment if you do them tomorrow, but I've placed the order for your anyway. You can wait and do them after I see if that's easier. I can try to answer any other questions you have at your appointment.> > > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.> > Thanks guys> >>

[Guest guest]

Thanks to you all for the great advice as usual.Its just sad that I'm 34 now, and 7 years ago I was hoping to try for a 3rd Child and was referred to see a perinatologist. He was to asses my risk for For prematurity after two previous pregnancies 28 and 29 weeker. I told him that I don't believe pre eclampsia is the culprit.He looked me straight in the eyes and said. Most likely your BP is just hereditary, but Im going to test you for lupus, and something like antiphospolipids . He assured me if that's not positive, there's nothing else we can do. No underlying cause, he was so sure, I don't get it was info so limited that recently that so many miss this?. And send us on our way with meds. , and more frustration , and confusion. There should be some accountabilityTill that happens nothing will change, and more and more will end up here. I consider a lawsuit all the time. On Mar 1, 2012, at 5:55 PM, "StaceyF" <ssminnow@...> wrote:

I had an appointment with a Dr. today that I was referred to for Hypogammaglobulinemia. He said that he worked with Dr. Conn at U of M. His name is Dr. Penner. He is a Hematologist and internal medicine. I did mention that I had been talking with a doc on this site but did not get to mention Dr. Grim's name. He was great to talk with, spent over an hour with me and agreed that my case is a bit difficult. He thinks that something systemic is causing my immune system to go crazy. He also thinks that the sores that keep coming in my mouth my be herpes that has come from the immune system depression. He is gonna do more tests and see if he can pinpoint the problem. I am so happy that he is taking this further. My PCP put me on Aldactone and I am just waiting to get back into the endo.

Maybe this doctor will be able to help me with all of the symptoms.

Stacey

--- n hyperaldosteronism , Clarence Grim <lowerbp2@...> wrote:

>

> It seems many on our site here basically made the Dx themselves.

> Don't know how many made a false Dx and did not get here.

>

> CE Grim MD

> On Mar 1, 2012, at 1:09 PM, Bingham wrote:

>

> > Sadly NOTHING gaurantees you will be listened to except an imminent

> > lawsuit, but it can up your chances!

> >

> > No matter what many will not go over an entire list with you - so

> > just a caution - so prioritize the top 3 things as they will have

> > you discuss what is the most important. You may get "Okay, we can't

> > go over the entire list today, but is most important you want to

> > talk about?" IF they say it that nice!

> >

> > It would be great, but time is not endless for all the questions we

> > have, especially in an internet era where we keep finding more and

> > more questions to ask (plus they are typically busy typing today not

> > writing so good luck getting them to even raise their head up) - it

> > would be ideal and most wonderful, but there is a waiting room

> > behind you full of people who do not want to wait to see the doc,

> > just like you didn't like waiting.

> >

> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some

> > may act like it, they often barely know what hyperaldosteronism is

> > (they will nod in the affirmative because they recognize the term

> > "aldosterone" in it, but I am telling you from experience 9/10 have

> > to look it up).

> >

> > Wrong, I know, but bringing it in and up needs to be done, but be

> > prepared for their mood to change when you talk about someone else's

> > work, or something you got off the internet by another doctor.

> >

> > We often go in thinking about sweet red wine and smelling

> > roses .....and then when trying to get answers we end up forgetting

> > those things can also be thorns and poison - so be prepared to stand

> > your ground or understand it may not be as smooth, regardless of the

> > steps you take.

> >

> > Recent research has shown that exploring the internet is more and

> > more common, but the patient's eyes and mind are naturally drawn to

> > the most dangerous and often rarest things - when common things are

> > much more common so you must be open minded at least when it doesn't

> > show or they won't check you for ragged red fiber disease......you

> > can look it up......wait...better not.

> >

> > Just words of caution. Until we find a way to fix it for good......

> >

> >

> >

> >

> >>

> >> Ok this is a response from my Endo, when I emailed her regarding my

> >> BP and concerns that it remains high almost one month post op. I

> >> had asked about AVS and why I was not tested. I have my appointment

> >> tomorrow and looking for feedback and wondering how accurate her

> >> response is. I'm dealing with Kaiser here, and my experiences with

> >> them thus far have been negative to say the least.

> >> This was her response below. Any feedback would be much appreciated.

> >> Thanks!

> >>

> >> Ms. Abdallah,

> >> The main purpose of your appointment with me later this week is, in

> >> fact, to go over several of the issues/questions you raised in your

> >> email. We always repeat the aldosterone and renin levels after

> >> surgery to assess for surgical cure. As you've read, hypertension

> >> is improved after surgery for all patients with unilateral disease

> >> and is cured (meaning blood pressure medications are no longer

> >> required) in about 30-60% of patients. So, very often we are able

> >> to reduce the medications but not stop them all together. I think

> >> the significant improvement in your potassium levels is telling in

> >> and of itself that you've benefited from the surgery.

> >> The adrenal vein sampling tends to be used more in academic and

> >> tertiary care level medical centers. Even in these settings, the

> >> general guidelines developed by the experts in the field (a

> >> consensus report with guidelines was published just a few years

> >> ago) indicates that for a patient under the age of 40 with a well

> >> defined unilateral adrenal mass the vein sampling could be

> >> deferred. If the CT was unclear( meaning the adrenal gland(S) had a

> >> nodular or "lumpy" appearance or just appeared generous in size) or

> >> did not show a definite mass, then we would have had to pursue the

> >> vein sampling. It is a difficult procedure and it is recommended

> >> that it only be done by Radiologists with specific training for it

> >> (since it can lead to serious complications), so if we had had more

> >> indicators that it was needed, then we would have referred you to

> >> get it done at one of the other Kaiser facilities (Hayward does not

> >> have a designated Radiologist for this test). So, many patients in

> >> your situation do not undergo the AS.

> >> My plan was to order the aldosterone and renin test for you when

> >> you come in this week (it needs to be done in the morning, before

> >> AM). Since your appointment is only 2 days away, I don't think I'd

> >> have the results AT the appointment if you do them tomorrow, but

> >> I've placed the order for your anyway. You can wait and do them

> >> after I see if that's easier. I can try to answer any other

> >> questions you have at your appointment.

> >>

> >>

> >> >

> >> > > Question regarding avs testing. I had an adenoma on my left

> >> gland removed Feb 2nd. Potassium has since returned to normal range

> >> 5.0 actually. BP remains on the high side, around 160/105. I never

> >> was offered AVS test. Having severe bouts with anxiety,

> >> irritability, like PMS times 10, most of the time! My family is fed

> >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> >> production? I have endo appt. March 1st. I've requested aldo renin

> >> tests again. Anything else I should ask the Endo? Still taking hctz

> >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> >> Atenolol 50 mg.

> >> > > Thanks guys

> >> > >

> >> >

> >>

> >

> >

> >

> >

>

=

[Guest guest]

There's always exceptions to every rule. Good for you. Read through the history of posts on this list- if every experience was like yours the people on this list wouldn't spend years and years not only trying to get diagnosed but just treated.

Ill say it again, "there's always someone somewhere who knows someone who was told if they had been wearing their seatbelt they would have been killed!"

........I for one always wear mine. But there's exceptions to everything. Your experince doesn't make it the norm. We have to change what is the norm though. > >> >>> >> Ok this is a response from my Endo, when I emailed her

regarding my > >> BP and concerns that it remains high almost one month post op. I > >> had asked about AVS and why I was not tested. I have my appointment > >> tomorrow and looking for feedback and wondering how accurate her > >> response is. I'm dealing with Kaiser here, and my experiences with > >> them thus far have been negative to say the least.> >> This was her response below. Any feedback would be much appreciated.> >> Thanks!> >>> >> Ms. Abdallah,> >> The main purpose of your appointment with me later this week is, in > >> fact, to go over several of the issues/questions you raised in your > >> email. We always repeat the aldosterone and renin levels after > >> surgery to assess for surgical cure. As you've read, hypertension > >> is improved after surgery for all

patients with unilateral disease > >> and is cured (meaning blood pressure medications are no longer > >> required) in about 30-60% of patients. So, very often we are able > >> to reduce the medications but not stop them all together. I think > >> the significant improvement in your potassium levels is telling in > >> and of itself that you've benefited from the surgery.> >> The adrenal vein sampling tends to be used more in academic and > >> tertiary care level medical centers. Even in these settings, the > >> general guidelines developed by the experts in the field (a > >> consensus report with guidelines was published just a few years > >> ago) indicates that for a patient under the age of 40 with a well > >> defined unilateral adrenal mass the vein sampling could be > >> deferred. If the CT was

unclear( meaning the adrenal gland(S) had a > >> nodular or "lumpy" appearance or just appeared generous in size) or > >> did not show a definite mass, then we would have had to pursue the > >> vein sampling. It is a difficult procedure and it is recommended > >> that it only be done by Radiologists with specific training for it > >> (since it can lead to serious complications), so if we had had more > >> indicators that it was needed, then we would have referred you to > >> get it done at one of the other Kaiser facilities (Hayward does not > >> have a designated Radiologist for this test). So, many patients in > >> your situation do not undergo the AS.> >> My plan was to order the aldosterone and renin test for you when > >> you come in this week (it needs to be done in the morning, before > >>

AM). Since your appointment is only 2 days away, I don't think I'd > >> have the results AT the appointment if you do them tomorrow, but > >> I've placed the order for your anyway. You can wait and do them > >> after I see if that's easier. I can try to answer any other > >> questions you have at your appointment.> >>> >> > >> >> >> > > Question regarding avs testing. I had an adenoma on my left > >> gland removed Feb 2nd. Potassium has since returned to normal range > >> 5.0 actually. BP remains on the high side, around 160/105. I never > >> was offered AVS test. Having severe bouts with anxiety, > >> irritability, like PMS times 10, most of the time! My family is fed

> >> up, I'm frustrated! Is it posible I had bilateral aldosterone over > >> production? I have endo appt. March 1st. I've requested aldo renin > >> tests again. Anything else I should ask the Endo? Still taking hctz > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and > >> Atenolol 50 mg.> >> > > Thanks guys> >> > >> >> >> >>> >> >> >> >>

[Guest guest]

What was your BP and K before during and after each pregnancy? Some with PA will note their Bp gets better with preg. Others not. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 1:52, Katt Abdallah <kattabdallah77@...> wrote:

Thanks to you all for the great advice as usual.Its just sad that I'm 34 now, and 7 years ago I was hoping to try for a 3rd Child and was referred to see a perinatologist. He was to asses my risk for For prematurity after two previous pregnancies 28 and 29 weeker. I told him that I don't believe pre eclampsia is the culprit.He looked me straight in the eyes and said. Most likely your BP is just hereditary, but Im going to test you for lupus, and something like antiphospolipids . He assured me if that's not positive, there's nothing else we can do. No underlying cause, he was so sure, I don't get it was info so limited that recently that so many miss this?. And send us on our way with meds. , and more frustration , and confusion. There should be some accountabilityTill that happens nothing will change, and more and more will end up here. I consider a lawsuit all the time. On Mar 1, 2012, at 5:55

PM, "StaceyF" <ssminnow@...> wrote:

I had an appointment with a Dr. today that I was referred to for Hypogammaglobulinemia. He said that he worked with Dr. Conn at U of M. His name is Dr. Penner. He is a Hematologist and internal medicine. I did mention that I had been talking with a doc on this site but did not get to mention Dr. Grim's name. He was great to talk with, spent over an hour with me and agreed that my case is a bit difficult. He thinks that something systemic is causing my immune system to go crazy. He also thinks that the sores that keep coming in my mouth my be herpes that has come from the immune system depression. He is gonna do more tests and see if he can pinpoint the problem. I am so happy that he is taking this further. My PCP put me on Aldactone and I am just waiting to get back into the endo.

Maybe this doctor will be able to help me with all of the symptoms.

Stacey

--- n hyperaldosteronism , Clarence Grim <lowerbp2@...> wrote:

>

> It seems many on our site here basically made the Dx themselves.

> Don't know how many made a false Dx and did not get here.

>

> CE Grim MD

> On Mar 1, 2012, at 1:09 PM, Bingham wrote:

>

> > Sadly NOTHING gaurantees you will be listened to except an imminent

> > lawsuit, but it can up your chances!

> >

> > No matter what many will not go over an entire list with you - so

> > just a caution - so prioritize the top 3 things as they will have

> > you discuss what is the most important. You may get "Okay, we can't

> > go over the entire list today, but is most important you want to

> > talk about?" IF they say it that nice!

> >

> > It would be great, but time is not endless for all the questions we

> > have, especially in an internet era where we keep finding more and

> > more questions to ask (plus they are typically busy typing today not

> > writing so good luck getting them to even raise their head up) - it

> > would be ideal and most wonderful, but there is a waiting room

> > behind you full of people who do not want to wait to see the doc,

> > just like you didn't like waiting.

> >

> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some

> > may act like it, they often barely know what hyperaldosteronism is

> > (they will nod in the affirmative because they recognize the term

> > "aldosterone" in it, but I am telling you from experience 9/10 have

> > to look it up).

> >

> > Wrong, I know, but bringing it in and up needs to be done, but be

> > prepared for their mood to change when you talk about someone else's

> > work, or something you got off the internet by another doctor.

> >

> > We often go in thinking about sweet red wine and smelling

> > roses .....and then when trying to get answers we end up forgetting

> > those things can also be thorns and poison - so be prepared to stand

> > your ground or understand it may not be as smooth, regardless of the

> > steps you take.

> >

> > Recent research has shown that exploring the internet is more and

> > more common, but the patient's eyes and mind are naturally drawn to

> > the most dangerous and often rarest things - when common things are

> > much more common so you must be open minded at least when it doesn't

> > show or they won't check you for ragged red fiber disease......you

> > can look it up......wait...better not.

> >

> > Just words of caution. Until we find a way to fix it for good......

> >

> >

> >

> >

> >>

> >> Ok this is a response from my Endo, when I emailed her regarding my

> >> BP and concerns that it remains high almost one month post op. I

> >> had asked about AVS and why I was not tested. I have my appointment

> >> tomorrow and looking for feedback and wondering how accurate her

> >> response is. I'm dealing with Kaiser here, and my experiences with

> >> them thus far have been negative to say the least.

> >> This was her response below. Any feedback would be much appreciated.

> >> Thanks!

> >>

> >> Ms. Abdallah,

> >> The main purpose of your appointment with me later this week is, in

> >> fact, to go over several of the issues/questions you raised in your

> >> email. We always repeat the aldosterone and renin levels after

> >> surgery to assess for surgical cure. As you've read, hypertension

> >> is improved after surgery for all patients with unilateral disease

> >> and is cured (meaning blood pressure medications are no longer

> >> required) in about 30-60% of patients. So, very often we are able

> >> to reduce the medications but not stop them all together. I think

> >> the significant improvement in your potassium levels is telling in

> >> and of itself that you've benefited from the surgery.

> >> The adrenal vein sampling tends to be used more in academic and

> >> tertiary care level medical centers. Even in these settings, the

> >> general guidelines developed by the experts in the field (a

> >> consensus report with guidelines was published just a few years

> >> ago) indicates that for a patient under the age of 40 with a well

> >> defined unilateral adrenal mass the vein sampling could be

> >> deferred. If the CT was unclear( meaning the adrenal gland(S) had a

> >> nodular or "lumpy" appearance or just appeared generous in size) or

> >> did not show a definite mass, then we would have had to pursue the

> >> vein sampling. It is a difficult procedure and it is recommended

> >> that it only be done by Radiologists with specific training for it

> >> (since it can lead to serious complications), so if we had had more

> >> indicators that it was needed, then we would have referred you to

> >> get it done at one of the other Kaiser facilities (Hayward does not

> >> have a designated Radiologist for this test). So, many patients in

> >> your situation do not undergo the AS.

> >> My plan was to order the aldosterone and renin test for you when

> >> you come in this week (it needs to be done in the morning, before

> >> AM). Since your appointment is only 2 days away, I don't think I'd

> >> have the results AT the appointment if you do them tomorrow, but

> >> I've placed the order for your anyway. You can wait and do them

> >> after I see if that's easier. I can try to answer any other

> >> questions you have at your appointment.

> >>

> >>

> >> >

> >> > > Question regarding avs testing. I had an adenoma on my left

> >> gland removed Feb 2nd. Potassium has since returned to normal range

> >> 5.0 actually. BP remains on the high side, around 160/105. I never

> >> was offered AVS test. Having severe bouts with anxiety,

> >> irritability, like PMS times 10, most of the time! My family is fed

> >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> >> production? I have endo appt. March 1st. I've requested aldo renin

> >> tests again. Anything else I should ask the Endo? Still taking hctz

> >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> >> Atenolol 50 mg.

> >> > > Thanks guys

> >> > >

> >> >

> >>

> >

> >

> >

> >

>

=

[Guest guest]

How are u doing on aldactone?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 7:48, Bingham <jlkbbk2003@...> wrote:

There's always exceptions to every rule. Good for you. Read through the history of posts on this list- if every experience was like yours the people on this list wouldn't spend years and years not only trying to get diagnosed but just treated.

Ill say it again, "there's always someone somewhere who knows someone who was told if they had been wearing their seatbelt they would have been killed!"

........I for one always wear mine. But there's exceptions to everything. Your experince doesn't make it the norm. We have to change what is the norm though. > >> >>> >> Ok this is a response from my Endo, when I emailed her

regarding my > >> BP and concerns that it remains high almost one month post op. I > >> had asked about AVS and why I was not tested. I have my appointment > >> tomorrow and looking for feedback and wondering how accurate her > >> response is. I'm dealing with Kaiser here, and my experiences with > >> them thus far have been negative to say the least.> >> This was her response below. Any feedback would be much appreciated.> >> Thanks!> >>> >> Ms. Abdallah,> >> The main purpose of your appointment with me later this week is, in > >> fact, to go over several of the issues/questions you raised in your > >> email. We always repeat the aldosterone and renin levels after > >> surgery to assess for surgical cure. As you've read, hypertension > >> is improved after surgery for all

patients with unilateral disease > >> and is cured (meaning blood pressure medications are no longer > >> required) in about 30-60% of patients. So, very often we are able > >> to reduce the medications but not stop them all together. I think > >> the significant improvement in your potassium levels is telling in > >> and of itself that you've benefited from the surgery.> >> The adrenal vein sampling tends to be used more in academic and > >> tertiary care level medical centers. Even in these settings, the > >> general guidelines developed by the experts in the field (a > >> consensus report with guidelines was published just a few years > >> ago) indicates that for a patient under the age of 40 with a well > >> defined unilateral adrenal mass the vein sampling could be > >> deferred. If the CT was

unclear( meaning the adrenal gland(S) had a > >> nodular or "lumpy" appearance or just appeared generous in size) or > >> did not show a definite mass, then we would have had to pursue the > >> vein sampling. It is a difficult procedure and it is recommended > >> that it only be done by Radiologists with specific training for it > >> (since it can lead to serious complications), so if we had had more > >> indicators that it was needed, then we would have referred you to > >> get it done at one of the other Kaiser facilities (Hayward does not > >> have a designated Radiologist for this test). So, many patients in > >> your situation do not undergo the AS.> >> My plan was to order the aldosterone and renin test for you when > >> you come in this week (it needs to be done in the morning, before > >>

AM). Since your appointment is only 2 days away, I don't think I'd > >> have the results AT the appointment if you do them tomorrow, but > >> I've placed the order for your anyway. You can wait and do them > >> after I see if that's easier. I can try to answer any other > >> questions you have at your appointment.> >>> >> > >> >> >> > > Question regarding avs testing. I had an adenoma on my left > >> gland removed Feb 2nd. Potassium has since returned to normal range > >> 5.0 actually. BP remains on the high side, around 160/105. I never > >> was offered AVS test. Having severe bouts with anxiety, > >> irritability, like PMS times 10, most of the time! My family is fed

> >> up, I'm frustrated! Is it posible I had bilateral aldosterone over > >> production? I have endo appt. March 1st. I've requested aldo renin > >> tests again. Anything else I should ask the Endo? Still taking hctz > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and > >> Atenolol 50 mg.> >> > > Thanks guys> >> > >> >> >> >>> >> >> >> >>

[Guest guest]

My worries stem mostly from the fact that bp has not dropped at all. I just feel like I should have at least had the option for AVS. I was not as informed at the time and thought the sodium suppression test was the AVS. I wasn't even contacted by my endo till 3 weeks post op because the surgeon contacted her. My Aldo /renin have not been checked since. I get up 3 times to per at night and am having muscle pain in my legs again. My meds were not changed after surgery. I took myself off of atenolol lisinopril, and amlodipine. Still taking hctz 50 mg. bp before preg was on the high side 140/95 kept getting higher during pregnancy and stayed high ever since. As far as K I don't have labs for that till about 2009 after seizure it was 2.2 I believe. And never improved bp was never controlled under any meds.On Mar 2, 2012, at 4:30 PM, " " <jclark24p@...> wrote:

I say great and yes! Although a two day sample is rather short it is a positive sign! Your doctor is treating you correctly by monitoring your K as s/he adjusts your Aldactone. My doctor puts me on a 2-week recall for labs when she monkeys with anything that affects K. (I've been off Spiro for 2 1/2 months and it was down to 4.2 last Tue - it had been running 4.6-4.8 on Spiro. Note I never had a real problem with low K)

Do you monitor BP at home? I take mine every morning and graph it when I want to see how it is trending. (Also lets you see why you shouldn't have had that extra piece of Pizza the night before!)

Keep it up, you are on roll! ;>)

> > > > >> >

> > > > >> > > Question regarding avs testing. I had an adenoma on my left

> > > > >> gland removed Feb 2nd. Potassium has since returned to normal range

> > > > >> 5.0 actually. BP remains on the high side, around 160/105. I never

> > > > >> was offered AVS test. Having severe bouts with anxiety,

> > > > >> irritability, like PMS times 10, most of the time! My family is fed

> > > > >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> > > > >> production? I have endo appt. March 1st. I've requested aldo renin

> > > > >> tests again. Anything else I should ask the Endo? Still taking hctz

> > > > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> > > > >> Atenolol 50 mg.

> > > > >> > > Thanks guys

> > > > >> > >

> > > > >> >

> > > > >>

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> >

>

=

[Guest guest]

Forgot to mention my appt was rescheduled till tuesday.On Mar 2, 2012, at 4:30 PM, " " <jclark24p@...> wrote:

I say great and yes! Although a two day sample is rather short it is a positive sign! Your doctor is treating you correctly by monitoring your K as s/he adjusts your Aldactone. My doctor puts me on a 2-week recall for labs when she monkeys with anything that affects K. (I've been off Spiro for 2 1/2 months and it was down to 4.2 last Tue - it had been running 4.6-4.8 on Spiro. Note I never had a real problem with low K)

Do you monitor BP at home? I take mine every morning and graph it when I want to see how it is trending. (Also lets you see why you shouldn't have had that extra piece of Pizza the night before!)

Keep it up, you are on roll! ;>)

> > > > >> >

> > > > >> > > Question regarding avs testing. I had an adenoma on my left

> > > > >> gland removed Feb 2nd. Potassium has since returned to normal range

> > > > >> 5.0 actually. BP remains on the high side, around 160/105. I never

> > > > >> was offered AVS test. Having severe bouts with anxiety,

> > > > >> irritability, like PMS times 10, most of the time! My family is fed

> > > > >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> > > > >> production? I have endo appt. March 1st. I've requested aldo renin

> > > > >> tests again. Anything else I should ask the Endo? Still taking hctz

> > > > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> > > > >> Atenolol 50 mg.

> > > > >> > > Thanks guys

> > > > >> > >

> > > > >> >

> > > > >>

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> >

>

=

[Guest guest]

I was going to mention to the group that I haven't had any spiro in almost 2 weeks. The clinic kept telling me to have the pharmacy fax a refill request - which they kept doing - but the office wasn't sending it back in so I went without it a few days and noticed my pressure was doing good. I cut out the Pepsi's, keep DASHing, and exercise every day - even if it's a tiny bit

BUT.....my anemia has worsened even though I am on iron and it.s down to 33 (hct). I do feel winded, but not too bad overall. I had the flu 2 weeks ago, confirmed at the lab, but it was short-lived. Before when PA was undx'd I'd get the flu and still be sick 6 months later (I don;t know how long really but it was months) and it would throw the thyroid into a spin. My thyroid when I got my labs last week was .64 and the lab cutoff is .40 so I pray it's not. The T3 was just inside normal again.

I wonder if my BP is good off the spiro because of the anemia. It may be even a bit lower because I do go to Flagstaff 3 times a week right now and it's at 7400 ft (I live at 4000ft). I am having heart rate trouble still and do have to take 25mg of metoprolol most days as it gets up to 140 without it.

The thing is I do feel pretty good really. And even with the heart rate getting/staying out of control a little I don;t feel like I have in the past with the thyroid overall so I am not feeling to me anyway hyperethyroid. It may be the anemia keeping it fast.

But I am staying off the spiro as long as I can. I am taking the metoprolol as needed - every day lately

Colonoscopy was fine and am going to have upper GI in a few. I am going in tomorrow AM for new labs - IRON STUDIES -and I did get a new doc a couple weeks back. She seems on the ball so far - listens, relatively speaking, and we "discuss" things and she hears my side of it. So far so good. I am also going to a Rheum in a couple weeks as my raynauds - among my many gripes - has clearly worsened (I noticed it about a yea ago or so - never had it before that I know of), but it has gotten more frequent and bothersome. Can't even tie my shoes or play guitar when it acts up and though it's only a couple fingers and toes at a time they are the whitest fingers on a live person I have ever seen even for a white guy like me!

> >> >>> >> Ok this is a response from my Endo, when I emailed her regarding my > >> BP and concerns that it remains high almost one month post op. I > >> had asked

about AVS and why I was not tested. I have my appointment > >> tomorrow and looking for feedback and wondering how accurate her > >> response is. I'm dealing with Kaiser here, and my experiences with > >> them thus far have been negative to say the least.> >> This was her response below. Any feedback would be much appreciated.> >> Thanks!> >>> >> Ms. Abdallah,> >> The main purpose of your appointment with me later this week is, in > >> fact, to go over several of the issues/questions you raised in your > >> email. We always repeat the aldosterone and renin levels after > >> surgery to assess for surgical cure. As you've read, hypertension > >> is improved after surgery for all patients with unilateral disease > >> and is cured (meaning blood pressure medications are no longer >

>> required) in about 30-60% of patients. So, very often we are able > >> to reduce the medications but not stop them all together. I think > >> the significant improvement in your potassium levels is telling in > >> and of itself that you've benefited from the surgery.> >> The adrenal vein sampling tends to be used more in academic and > >> tertiary care level medical centers. Even in these settings, the > >> general guidelines developed by the experts in the field (a > >> consensus report with guidelines was published just a few years > >> ago) indicates that for a patient under the age of 40 with a well > >> defined unilateral adrenal mass the vein sampling could be > >> deferred. If the CT was unclear( meaning the adrenal gland(S) had a > >> nodular or "lumpy" appearance or just appeared generous in

size) or > >> did not show a definite mass, then we would have had to pursue the > >> vein sampling. It is a difficult procedure and it is recommended > >> that it only be done by Radiologists with specific training for it > >> (since it can lead to serious complications), so if we had had more > >> indicators that it was needed, then we would have referred you to > >> get it done at one of the other Kaiser facilities (Hayward does not > >> have a designated Radiologist for this test). So, many patients in > >> your situation do not undergo the AS.> >> My plan was to order the aldosterone and renin test for you when > >> you come in this week (it needs to be done in the morning, before > >> AM). Since your appointment is only 2 days away, I don't think I'd > >> have the results AT the appointment if

you do them tomorrow, but > >> I've placed the order for your anyway. You can wait and do them > >> after I see if that's easier. I can try to answer any other > >> questions you have at your appointment.> >>> >> > >> >> >> > > Question regarding avs testing. I had an adenoma on my left > >> gland removed Feb 2nd. Potassium has since returned to normal range > >> 5.0 actually. BP remains on the high side, around 160/105. I never > >> was offered AVS test. Having severe bouts with anxiety, > >> irritability, like PMS times 10, most of the time! My family is fed > >> up, I'm frustrated! Is it posible I had bilateral aldosterone over > >> production? I have endo appt. March 1st. I've requested aldo renin >

>> tests again. Anything else I should ask the Endo? Still taking hctz > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and > >> Atenolol 50 mg.> >> > > Thanks guys> >> > >> >> >> >>> >> >> >> >>

[Guest guest]

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly

being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your way. From: <jclark24p@...> hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PM Subject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!

> > > > > > >> >

> > > > > > >> > > Question regarding avs testing. I had an adenoma on my left

> > > > > > >> gland removed Feb 2nd. Potassium has since returned to normal range

> > > > > > >> 5.0 actually. BP remains on the high side, around 160/105. I never

> > > > > > >> was offered AVS test. Having severe bouts with anxiety,

> > > > > > >> irritability, like PMS times 10, most of the time! My family is fed

> > > > > > >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> > > > > > >> production? I have endo appt. March 1st. I've requested aldo renin

> > > > > > >> tests again. Anything else I should ask the Endo? Still taking hctz

> > > > > > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> > > > > > >> Atenolol 50 mg.

> > > > > > >> > > Thanks guys

> > > > > > >> > >

> > > > > > >> >

> > > > > > >>

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> > TODAY(Beta) • Powered by

> > Avril Lavigne debuts sultry new look

> > The singer known for her edgy, skater-girl style surprises fans in a racy new music video.

> > Privacy Policy

>

[Guest guest]

Did u get the path report yet?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 20:34, <jclark24p@...> wrote:

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!

> > > > > > >

> > > > > > > From: Dianne strong <dianstrong@>

> > > > > > > Subject: Re: Re: adrenal vein testing

> > > > > > > hyperaldosteronism

> > > > > > > Date: Thursday, March 1, 2012, 1:03 PM

> > > > > > >

> > > > > > >

> > > > > > > I have a great deal of experience in dealing with the Kaiser health

> > > > > > > care system, also in the SF Bay Area, and am writing to give you

> > > > > > > some of my painfully learned advice.

> > > > > > >

> > > > > > > 1. Never go to your doctor without a list of notes and specific

> > > > > > > questions to ask him/her. Then jot down the answers.

> > > > > > > 2. Bring a list/chart of your BP history for the last month with you

> > > > > > > to your appointment.

> > > > > > > 3. If at all possible take someone with you to your appointment. It

> > > > > > > is sad, but true, that the doctor will pay closer attention to you

> > > > > > > within the presence of a witness who appears to be paying close

> > > > > > > attention. This witness can be the one jotting down the doctors

> > > > > > > answers to your questions.

> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of

> > > > > > > his CV. Presumably you have already given a copy of his E of PA to

> > > > > > > your relevant doctors, but the CV clues them in to the fact that you

> > > > > > > are not just getting your ideas from an Internet quack.

> > > > > > > 5. Mention the fact that Dr. Grim trained with Dr. Conn, as in

> > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears

> > > > > > > will open up. This way if you reference Dr. Grim you will be

> > > > > > > listened to.

> > > > > > >

> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing

> > > > > > > to be a cut and dry patient too. Personally I love a gentle, caring

> > > > > > > and kind doctor, but above everything I want good medicine and

> > > > > > > personality is less important. Do the above and you can deal with

> > > > > > > your cut-and-dry doctor because you will be speaking to him on his

> > > > > > > level.

> > > > > > >

> > > > > > > With Kaiser you can actually do a fair amount of pushing to get what

> > > > > > > you want. Don't be meekly compliant even if that's your nature, as

> > > > > > > it used to me mine. Bring hard questions and your research to back

> > > > > > > it up. It is your life and your health. No one is going to care as

> > > > > > > much as you and your family do, but you can push to get the quality

> > > > > > > of care you need and deserve.

> > > > > > >

> > > > > > > It is not strange to ask for your pathology report. It is your

> > > > > > > right, and shows that you are taking your condition seriously. Tell

> > > > > > > your doctor that you want it for your files. If he/she gives you any

> > > > > > > static at all ask him/her how you can go about getting it?

> > > > > > >

> > > > > > > Believe me when I say that if I can now flex my muscles with Kaiser,

> > > > > > > you will be able to eventually do it too. If you need a pep-talk

> > > > > > > and/or more information about how I have dealt with Kaiser, you can

> > > > > > > call me: 510-527-6912. I live mid-way between the Oakland and

> > > > > > > Richmond Kaiser Hospitals.

> > > > > > >

> > > > > > > Dianne

> > > > > > > F-69, bi-lateral adenomas, CKD from CT scan dye, 75mg Spiro, 37.5mg

> > > > > > > Atenolol.

> > > > > > >

> > > > > > >

> > > > > > > --- On Thu, 3/1/12, Kalthoum Abdallah <kattabdallah77@>

[Guest guest]

Raynauds is a common side effect of BB BUT SUSPECT u know this. Be sure to mention this to rheum. How does your Hx of BB and Raymaud's coincide? Ever been on apresoline?I recommend putting together a timeline as far back as u can go for meds, problems, etc to take with u to rheum. Do you have any more info on the type of anemia micro or macro cytic. Relation to meds in the time line relation to renal function in the time line WBC and platelets normal?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 22:06, Bingham <jlkbbk2003@...> wrote:

I was going to mention to the group that I haven't had any spiro in almost 2 weeks. The clinic kept telling me to have the pharmacy fax a refill request - which they kept doing - but the office wasn't sending it back in so I went without it a few days and noticed my pressure was doing good. I cut out the Pepsi's, keep DASHing, and exercise every day - even if it's a tiny bit

BUT.....my anemia has worsened even though I am on iron and it.s down to 33 (hct). I do feel winded, but not too bad overall. I had the flu 2 weeks ago, confirmed at the lab, but it was short-lived. Before when PA was undx'd I'd get the flu and still be sick 6 months later (I don;t know how long really but it was months) and it would throw the thyroid into a spin. My thyroid when I got my labs last week was .64 and the lab cutoff is .40 so I pray it's not. The T3 was just inside normal again.

I wonder if my BP is good off the spiro because of the anemia. It may be even a bit lower because I do go to Flagstaff 3 times a week right now and it's at 7400 ft (I live at 4000ft). I am having heart rate trouble still and do have to take 25mg of metoprolol most days as it gets up to 140 without it.

The thing is I do feel pretty good really. And even with the heart rate getting/staying out of control a little I don;t feel like I have in the past with the thyroid overall so I am not feeling to me anyway hyperethyroid. It may be the anemia keeping it fast.

But I am staying off the spiro as long as I can. I am taking the metoprolol as needed - every day lately

Colonoscopy was fine and am going to have upper GI in a few. I am going in tomorrow AM for new labs - IRON STUDIES -and I did get a new doc a couple weeks back. She seems on the ball so far - listens, relatively speaking, and we "discuss" things and she hears my side of it. So far so good. I am also going to a Rheum in a couple weeks as my raynauds - among my many gripes - has clearly worsened (I noticed it about a yea ago or so - never had it before that I know of), but it has gotten more frequent and bothersome. Can't even tie my shoes or play guitar when it acts up and though it's only a couple fingers and toes at a time they are the whitest fingers on a live person I have ever seen even for a white guy like me!

> >> >>> >> Ok this is a response from my Endo, when I emailed her regarding my > >> BP and concerns that it remains high almost one month post op. I

[Guest guest]

Raynauds is a common side effect of BB BUT SUSPECT u know this. Be sure to mention this to rheum. How does your Hx of BB and Raymaud's coincide? Ever been on apresoline?I recommend putting together a timeline as far back as u can go for meds, problems, etc to take with u to rheum. Do you have any more info on the type of anemia micro or macro cytic. Relation to meds in the time line relation to renal function in the time line WBC and platelets normal?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 22:06, Bingham <jlkbbk2003@...> wrote:

I was going to mention to the group that I haven't had any spiro in almost 2 weeks. The clinic kept telling me to have the pharmacy fax a refill request - which they kept doing - but the office wasn't sending it back in so I went without it a few days and noticed my pressure was doing good. I cut out the Pepsi's, keep DASHing, and exercise every day - even if it's a tiny bit

BUT.....my anemia has worsened even though I am on iron and it.s down to 33 (hct). I do feel winded, but not too bad overall. I had the flu 2 weeks ago, confirmed at the lab, but it was short-lived. Before when PA was undx'd I'd get the flu and still be sick 6 months later (I don;t know how long really but it was months) and it would throw the thyroid into a spin. My thyroid when I got my labs last week was .64 and the lab cutoff is .40 so I pray it's not. The T3 was just inside normal again.

I wonder if my BP is good off the spiro because of the anemia. It may be even a bit lower because I do go to Flagstaff 3 times a week right now and it's at 7400 ft (I live at 4000ft). I am having heart rate trouble still and do have to take 25mg of metoprolol most days as it gets up to 140 without it.

The thing is I do feel pretty good really. And even with the heart rate getting/staying out of control a little I don;t feel like I have in the past with the thyroid overall so I am not feeling to me anyway hyperethyroid. It may be the anemia keeping it fast.

But I am staying off the spiro as long as I can. I am taking the metoprolol as needed - every day lately

Colonoscopy was fine and am going to have upper GI in a few. I am going in tomorrow AM for new labs - IRON STUDIES -and I did get a new doc a couple weeks back. She seems on the ball so far - listens, relatively speaking, and we "discuss" things and she hears my side of it. So far so good. I am also going to a Rheum in a couple weeks as my raynauds - among my many gripes - has clearly worsened (I noticed it about a yea ago or so - never had it before that I know of), but it has gotten more frequent and bothersome. Can't even tie my shoes or play guitar when it acts up and though it's only a couple fingers and toes at a time they are the whitest fingers on a live person I have ever seen even for a white guy like me!

> >> >>> >> Ok this is a response from my Endo, when I emailed her regarding my > >> BP and concerns that it remains high almost one month post op. I

[Guest guest]

Ask how many PAs he has followed and for how long. I have consulted individually on 2 Kaisers and got them on track quickly. Saved them a lot of time and money a I recall. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 23:55, Kalthoum Abdallah <kattabdallah77@...> wrote:

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly

being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your way. From: <jclark24p@...> hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PM Subject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!

> > > > > > >

> > > > > > > From: Dianne strong <dianstrong@>

> > > > > > > Subject: Re: Re: adrenal vein testing

> > > > > > > hyperaldosteronism

> > > > > > > Date: Thursday, March 1, 2012, 1:03 PM

> > > > > > >

> > > > > > >

> > > > > > > I have a great deal of experience in dealing with the Kaiser health

> > > > > > > care system, also in the SF Bay Area, and am writing to give you

> > > > > > > some of my painfully learned advice.

> > > > > > >

> > > > > > > 1. Never go to your doctor without a list of notes and specific

> > > > > > > questions to ask him/her. Then jot down the answers.

> > > > > > > 2. Bring a list/chart of your BP history for the last month with you

> > > > > > > to your appointment.

> > > > > > > 3. If at all possible take someone with you to your appointment. It

> > > > > > > is sad, but true, that the doctor will pay closer attention to you

> > > > > > > within the presence of a witness who appears to be paying close

> > > > > > > attention. This witness can be the one jotting down the doctors

> > > > > > > answers to your questions.

> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of

> > > > > > > his CV. Presumably you have already given a copy of his E of PA to

> > > > > > > your relevant doctors, but the CV clues them in to the fact that you

> > > > > > > are not just getting your ideas from an Internet quack.

> > > > > > > 5. Mention the fact that Dr. Grim trained with Dr. Conn, as in

> > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears

> > > > > > > will open up. This way if you reference Dr. Grim you will be

> > > > > > > listened to.

> > > > > > >

> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing

> > > > > > > to be a cut and dry patient too. Personally I love a gen

[Guest guest]

My BB history is a little quirky because I tried them off and on over the years (maybe all the way back to a 10 yr range - whenever first signs if HTN showed up so about 10 yrs) but never on for long because, especially back then when I was playing basketball in leagues 3 x a week, my hr was naturally low. As the HTN worsened and the hr was a little faster I would try them as an add on med, but always always ended up dropping my hr too low even when we would drop the dose. AND they made feel so blah - almost depression like - I kind of stopped all together until 4/2010 when the hyperthyroid was dx'd.

THEN with the hyperthyroid the ER doc put me back on them right there in the ER and those boogers (the BB 's) gave me such instant relief from many of the thyroid symptoms - like the booming heartbeat - that I took them (metop.) for 2- 3 months maybe and the thyroid normalized on it's own and S/S were gone so I went off of them.

They did put me on them in 9/2010 when I was hospitalized for a week but that's the time my hr hit 36 with me vomiting and incredible headache and I always joke how they wrote in chart I "refused my blood pressure medication" when I told the nurse I wasn't taking my 3rd dose of 100mg metoprolol in 16 hours with a heart rate of 36! I have joked on here that I didn't really refuse the med, I refused to die!

That's one of my famous stays where they still didn't check for or find Conn's and even though I was 5 HTN meds, never considered or even wandered near spiro or anything like it. I went in with serious HTN and left nearly a week later at 160ish / 110.

Then I had a fast hr issue when I first started spiro (11/2010) and used them occasionally, but it seemed, like you predicted when I had asked, that it was my system getting used to the normal pressure and it did. So the raynauds really started long off of the BB's (I don't know if it began or if I just started noticing it) and I only started taking the BB's the last couple months again because of the hr. My fast hr does seem to coincide with the anemia and while it gets to 140ish, my pressure is good and I don't seem to really feel palpatations or anything.

As for the anemia. Initially it was normocytic - 5-6 months ago and I have been on iron (the ferrous sulfate OTC). Did have gauiac + stool then, but not now (had some hemorrhoids and rough stools and bright blood a few times, but I don't "see" any blood or tarry stools).

This time - just last week - it was a bit microcytic and platelets have always been normal. WBC's were low as they were last time. RFT's LFT's normal. I don't have my RBC indice numbers exact except the hct from memory as she herself her showed me the labs (their printer wasn't working so she couldn't copy at that moment but will give to them to me next visit next week and ordered the iron studies I will do tomorrow).

So far this is where I stand. She's sending me to the rheum so we can make sure nothing else is going on since I still seem to have some wierd things going on. I think the DASHing especially and exercising has been very good to the PA though. For that I can say I am eternally grateful I found this site back then because I may have put DASH in the file with other diets out there.

There is no exagerrating or playing down the immediate effect of spiro in 11/2010 as the absolute only med to help my severe HTN. But once I started DASHING I was able to lower the dose, then lower it, and so far for almost 2 weeks, not take any. I did finally get a script for a refill again, but I will only restart if I find it going up again. I am still taking K though it was normal and the young lady who took the blood listened very nicely to me when I explaind Conn's and asked her to do it the right way. She did it perfect that time (I have good veins though making it alot easier for them )

> >> >>> >> Ok this is a response from my Endo, when I emailed her regarding my > >> BP and concerns that it remains high almost one month post op.

I

[Guest guest]

My BB history is a little quirky because I tried them off and on over the years (maybe all the way back to a 10 yr range - whenever first signs if HTN showed up so about 10 yrs) but never on for long because, especially back then when I was playing basketball in leagues 3 x a week, my hr was naturally low. As the HTN worsened and the hr was a little faster I would try them as an add on med, but always always ended up dropping my hr too low even when we would drop the dose. AND they made feel so blah - almost depression like - I kind of stopped all together until 4/2010 when the hyperthyroid was dx'd.

THEN with the hyperthyroid the ER doc put me back on them right there in the ER and those boogers (the BB 's) gave me such instant relief from many of the thyroid symptoms - like the booming heartbeat - that I took them (metop.) for 2- 3 months maybe and the thyroid normalized on it's own and S/S were gone so I went off of them.

They did put me on them in 9/2010 when I was hospitalized for a week but that's the time my hr hit 36 with me vomiting and incredible headache and I always joke how they wrote in chart I "refused my blood pressure medication" when I told the nurse I wasn't taking my 3rd dose of 100mg metoprolol in 16 hours with a heart rate of 36! I have joked on here that I didn't really refuse the med, I refused to die!

That's one of my famous stays where they still didn't check for or find Conn's and even though I was 5 HTN meds, never considered or even wandered near spiro or anything like it. I went in with serious HTN and left nearly a week later at 160ish / 110.

Then I had a fast hr issue when I first started spiro (11/2010) and used them occasionally, but it seemed, like you predicted when I had asked, that it was my system getting used to the normal pressure and it did. So the raynauds really started long off of the BB's (I don't know if it began or if I just started noticing it) and I only started taking the BB's the last couple months again because of the hr. My fast hr does seem to coincide with the anemia and while it gets to 140ish, my pressure is good and I don't seem to really feel palpatations or anything.

As for the anemia. Initially it was normocytic - 5-6 months ago and I have been on iron (the ferrous sulfate OTC). Did have gauiac + stool then, but not now (had some hemorrhoids and rough stools and bright blood a few times, but I don't "see" any blood or tarry stools).

This time - just last week - it was a bit microcytic and platelets have always been normal. WBC's were low as they were last time. RFT's LFT's normal. I don't have my RBC indice numbers exact except the hct from memory as she herself her showed me the labs (their printer wasn't working so she couldn't copy at that moment but will give to them to me next visit next week and ordered the iron studies I will do tomorrow).

So far this is where I stand. She's sending me to the rheum so we can make sure nothing else is going on since I still seem to have some wierd things going on. I think the DASHing especially and exercising has been very good to the PA though. For that I can say I am eternally grateful I found this site back then because I may have put DASH in the file with other diets out there.

There is no exagerrating or playing down the immediate effect of spiro in 11/2010 as the absolute only med to help my severe HTN. But once I started DASHING I was able to lower the dose, then lower it, and so far for almost 2 weeks, not take any. I did finally get a script for a refill again, but I will only restart if I find it going up again. I am still taking K though it was normal and the young lady who took the blood listened very nicely to me when I explaind Conn's and asked her to do it the right way. She did it perfect that time (I have good veins though making it alot easier for them )

> >> >>> >> Ok this is a response from my Endo, when I emailed her regarding my > >> BP and concerns that it remains high almost one month post op.

I

[Guest guest]

Excellent history. How much are you on computer key board. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 3, 2012, at 2:48, Bingham <jlkbbk2003@...> wrote:

My BB history is a little quirky because I tried them off and on over the years (maybe all the way back to a 10 yr range - whenever first signs if HTN showed up so about 10 yrs) but never on for long because, especially back then when I was playing basketball in leagues 3 x a week, my hr was naturally low. As the HTN worsened and the hr was a little faster I would try them as an add on med, but always always ended up dropping my hr too low even when we would drop the dose. AND they made feel so blah - almost depression like - I kind of stopped all together until 4/2010 when the hyperthyroid was dx'd.

THEN with the hyperthyroid the ER doc put me back on them right there in the ER and those boogers (the BB 's) gave me such instant relief from many of the thyroid symptoms - like the booming heartbeat - that I took them (metop.) for 2- 3 months maybe and the thyroid normalized on it's own and S/S were gone so I went off of them.

They did put me on them in 9/2010 when I was hospitalized for a week but that's the time my hr hit 36 with me vomiting and incredible headache and I always joke how they wrote in chart I "refused my blood pressure medication" when I told the nurse I wasn't taking my 3rd dose of 100mg metoprolol in 16 hours with a heart rate of 36! I have joked on here that I didn't really refuse the med, I refused to die!

That's one of my famous stays where they still didn't check for or find Conn's and even though I was 5 HTN meds, never considered or even wandered near spiro or anything like it. I went in with serious HTN and left nearly a week later at 160ish / 110.

Then I had a fast hr issue when I first started spiro (11/2010) and used them occasionally, but it seemed, like you predicted when I had asked, that it was my system getting used to the normal pressure and it did. So the raynauds really started long off of the BB's (I don't know if it began or if I just started noticing it) and I only started taking the BB's the last couple months again because of the hr. My fast hr does seem to coincide with the anemia and while it gets to 140ish, my pressure is good and I don't seem to really feel palpatations or anything.

As for the anemia. Initially it was normocytic - 5-6 months ago and I have been on iron (the ferrous sulfate OTC). Did have gauiac + stool then, but not now (had some hemorrhoids and rough stools and bright blood a few times, but I don't "see" any blood or tarry stools).

This time - just last week - it was a bit microcytic and platelets have always been normal. WBC's were low as they were last time. RFT's LFT's normal. I don't have my RBC indice numbers exact except the hct from memory as she herself her showed me the labs (their printer wasn't working so she couldn't copy at that moment but will give to them to me next visit next week and ordered the iron studies I will do tomorrow).

So far this is where I stand. She's sending me to the rheum so we can make sure nothing else is going on since I still seem to have some wierd things going on. I think the DASHing especially and exercising has been very good to the PA though. For that I can say I am eternally grateful I found this site back then because I may have put DASH in the file with other diets out there.

There is no exagerrating or playing down the immediate effect of spiro in 11/2010 as the absolute only med to help my severe HTN. But once I started DASHING I was able to lower the dose, then lower it, and so far for almost 2 weeks, not take any. I did finally get a script for a refill again, but I will only restart if I find it going up again. I am still taking K though it was normal and the young lady who took the blood listened very nicely to me when I explaind Conn's and asked her to do it the right way. She did it perfect that time (I have good veins though making it alot easier for them )

> > > Sadly NOTHING gaurantees you will be listened to except an imminent > > lawsuit, but it can up your chances!> >> > No matter what many will not go over an entire list with you - so > > just a caution - so prioritize the top 3 things as they will have > > you discuss what is the most important. You may get "Okay, we can't > > go over the entire list today, but is most important you want to > > talk about?" IF they say it that nice!>

>> > It would be great, but time is not endless for all the questions we > > have, especially in an internet era where we keep finding more and > > more questions to ask (plus they are typically busy typing today not > > writing so good luck getting them to even raise their head up) - it > > would be ideal and most wonderful, but there is a waiting room > > behind you full of people who do not want to wait to see the doc, > > just like you didn't like waiting.> >> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some > > may act like it, they often barely know what hyperaldosteronism is > > (they will nod in the affirmative because they recognize the term > > "aldosterone" in it, but I am telling you from experience 9/10 have > > to look it up).> >> > Wrong, I know, but bringing it in

and up needs to be done, but be > > prepared for their mood to change when you talk about someone else's > > work, or something you got off the internet by another doctor.> >> > We often go in thinking about sweet red wine and smelling > > roses .....and then when trying to get answers we end up forgetting > > those things can also be thorns and poison - so be prepared to stand > > your ground or understand it may not be as smooth, regardless of the > > steps you take.> >> > Recent research has shown that exploring the internet is more and > > more common, but the patient's eyes and mind are naturally drawn to > > the most dangerous and often rarest things - when common things are > > much more common so you must be open minded at least when it doesn't > > show or they won't check you for ragged red fiber

disease......you > > can look it up......wait...better not.> >> > Just words of caution. Until we find a way to fix it for good...

[Guest guest]

Excellent history. How much are you on computer key board. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 3, 2012, at 2:48, Bingham <jlkbbk2003@...> wrote:

My BB history is a little quirky because I tried them off and on over the years (maybe all the way back to a 10 yr range - whenever first signs if HTN showed up so about 10 yrs) but never on for long because, especially back then when I was playing basketball in leagues 3 x a week, my hr was naturally low. As the HTN worsened and the hr was a little faster I would try them as an add on med, but always always ended up dropping my hr too low even when we would drop the dose. AND they made feel so blah - almost depression like - I kind of stopped all together until 4/2010 when the hyperthyroid was dx'd.

THEN with the hyperthyroid the ER doc put me back on them right there in the ER and those boogers (the BB 's) gave me such instant relief from many of the thyroid symptoms - like the booming heartbeat - that I took them (metop.) for 2- 3 months maybe and the thyroid normalized on it's own and S/S were gone so I went off of them.

They did put me on them in 9/2010 when I was hospitalized for a week but that's the time my hr hit 36 with me vomiting and incredible headache and I always joke how they wrote in chart I "refused my blood pressure medication" when I told the nurse I wasn't taking my 3rd dose of 100mg metoprolol in 16 hours with a heart rate of 36! I have joked on here that I didn't really refuse the med, I refused to die!

That's one of my famous stays where they still didn't check for or find Conn's and even though I was 5 HTN meds, never considered or even wandered near spiro or anything like it. I went in with serious HTN and left nearly a week later at 160ish / 110.

Then I had a fast hr issue when I first started spiro (11/2010) and used them occasionally, but it seemed, like you predicted when I had asked, that it was my system getting used to the normal pressure and it did. So the raynauds really started long off of the BB's (I don't know if it began or if I just started noticing it) and I only started taking the BB's the last couple months again because of the hr. My fast hr does seem to coincide with the anemia and while it gets to 140ish, my pressure is good and I don't seem to really feel palpatations or anything.

As for the anemia. Initially it was normocytic - 5-6 months ago and I have been on iron (the ferrous sulfate OTC). Did have gauiac + stool then, but not now (had some hemorrhoids and rough stools and bright blood a few times, but I don't "see" any blood or tarry stools).

This time - just last week - it was a bit microcytic and platelets have always been normal. WBC's were low as they were last time. RFT's LFT's normal. I don't have my RBC indice numbers exact except the hct from memory as she herself her showed me the labs (their printer wasn't working so she couldn't copy at that moment but will give to them to me next visit next week and ordered the iron studies I will do tomorrow).

So far this is where I stand. She's sending me to the rheum so we can make sure nothing else is going on since I still seem to have some wierd things going on. I think the DASHing especially and exercising has been very good to the PA though. For that I can say I am eternally grateful I found this site back then because I may have put DASH in the file with other diets out there.

There is no exagerrating or playing down the immediate effect of spiro in 11/2010 as the absolute only med to help my severe HTN. But once I started DASHING I was able to lower the dose, then lower it, and so far for almost 2 weeks, not take any. I did finally get a script for a refill again, but I will only restart if I find it going up again. I am still taking K though it was normal and the young lady who took the blood listened very nicely to me when I explaind Conn's and asked her to do it the right way. She did it perfect that time (I have good veins though making it alot easier for them )

> > > Sadly NOTHING gaurantees you will be listened to except an imminent > > lawsuit, but it can up your chances!> >> > No matter what many will not go over an entire list with you - so > > just a caution - so prioritize the top 3 things as they will have > > you discuss what is the most important. You may get "Okay, we can't > > go over the entire list today, but is most important you want to > > talk about?" IF they say it that nice!>

>> > It would be great, but time is not endless for all the questions we > > have, especially in an internet era where we keep finding more and > > more questions to ask (plus they are typically busy typing today not > > writing so good luck getting them to even raise their head up) - it > > would be ideal and most wonderful, but there is a waiting room > > behind you full of people who do not want to wait to see the doc, > > just like you didn't like waiting.> >> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some > > may act like it, they often barely know what hyperaldosteronism is > > (they will nod in the affirmative because they recognize the term > > "aldosterone" in it, but I am telling you from experience 9/10 have > > to look it up).> >> > Wrong, I know, but bringing it in

and up needs to be done, but be > > prepared for their mood to change when you talk about someone else's > > work, or something you got off the internet by another doctor.> >> > We often go in thinking about sweet red wine and smelling > > roses .....and then when trying to get answers we end up forgetting > > those things can also be thorns and poison - so be prepared to stand > > your ground or understand it may not be as smooth, regardless of the > > steps you take.> >> > Recent research has shown that exploring the internet is more and > > more common, but the patient's eyes and mind are naturally drawn to > > the most dangerous and often rarest things - when common things are > > much more common so you must be open minded at least when it doesn't > > show or they won't check you for ragged red fiber

disease......you > > can look it up......wait...better not.> >> > Just words of caution. Until we find a way to fix it for good...

[Guest guest]

If u still have PA THE meds that did not work before will still not workMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 23:55, Kalthoum Abdallah <kattabdallah77@...> wrote:

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly

being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your way. From: <jclark24p@...> hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PM Subject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!

> > > > > > >

> > > > > > > From: Dianne strong <dianstrong@>

> > > > > > > Subject: Re: Re: adrenal vein testing

> > > > > > > hyperaldosteronism

> > > > > > > Date: Thursday, March 1, 2012, 1:03 PM

> > > > > > >

> > > > > > >

> > > > > > > I have a great deal of experience in dealing with the Kaiser health

> > > > > > > care system, also in the SF Bay Area, and am writing to give you

> > > > > > > some of my painfully learned advice.

> > > > > > >

> > > > > > > 1. Never go to your doctor without a list of notes and specific

> > > > > > > questions to ask him/her. Then jot down the answers.

> > > > > > > 2. Bring a list/chart of your BP history for the last month with you

> > > > > > > to your appointment.

> > > > > > > 3. If at all possible take someone with you to your appointment. It

> > > > > > > is sad, but true, that the doctor will pay closer attention to you

> > > > > > > within the presence of a witness who appears to be paying close

> > > > > > > attention. This witness can be the one jotting down the doctors

> > > > > > > answers to your questions.

> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of

> > > > > > > his CV. Presumably you have already given a copy of his E of PA to

> > > > > > > your relevant doctors, but the CV clues them in to the fact that you

> > > > > > > are not just getting your ideas from an Internet quack.

> > > > > > > 5. Mention the fact that Dr. Grim trained with Dr. Conn, as in

> > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears

> > > > > > > will open up. This way if you reference Dr. Grim you will be

> > > > > > > listened to.

> > > > > > >

> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing

> > > > > > > to be a cut and dry patient too. Personally I love a gen

[Guest guest]

If u still have PA THE meds that did not work before will still not workMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 2, 2012, at 23:55, Kalthoum Abdallah <kattabdallah77@...> wrote:

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly

being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your way. From: <jclark24p@...> hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PM Subject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!

> > > > > > >

> > > > > > > From: Dianne strong <dianstrong@>

> > > > > > > Subject: Re: Re: adrenal vein testing

> > > > > > > hyperaldosteronism

> > > > > > > Date: Thursday, March 1, 2012, 1:03 PM

> > > > > > >

> > > > > > >

> > > > > > > I have a great deal of experience in dealing with the Kaiser health

> > > > > > > care system, also in the SF Bay Area, and am writing to give you

> > > > > > > some of my painfully learned advice.

> > > > > > >

> > > > > > > 1. Never go to your doctor without a list of notes and specific

> > > > > > > questions to ask him/her. Then jot down the answers.

> > > > > > > 2. Bring a list/chart of your BP history for the last month with you

> > > > > > > to your appointment.

> > > > > > > 3. If at all possible take someone with you to your appointment. It

> > > > > > > is sad, but true, that the doctor will pay closer attention to you

> > > > > > > within the presence of a witness who appears to be paying close

> > > > > > > attention. This witness can be the one jotting down the doctors

> > > > > > > answers to your questions.

> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of

> > > > > > > his CV. Presumably you have already given a copy of his E of PA to

> > > > > > > your relevant doctors, but the CV clues them in to the fact that you

> > > > > > > are not just getting your ideas from an Internet quack.

> > > > > > > 5. Mention the fact that Dr. Grim trained with Dr. Conn, as in

> > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears

> > > > > > > will open up. This way if you reference Dr. Grim you will be

> > > > > > > listened to.

> > > > > > >

> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing

> > > > > > > to be a cut and dry patient too. Personally I love a gen

[Guest guest]

As comes up on here many times HCTZ put me in the ER or hospital every time I "tried" it. I usually didn't know if it was the HCTZ

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your

way.

From: <jclark24p@...>hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PMSubject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!> > > > > > >> > > > > > > From: Dianne strong <dianstrong@>> > > > > > > Subject: Re: Re: adrenal vein testing> > > > > > > hyperaldosteronism > > > > > > > Date: Thursday, March 1, 2012, 1:03 PM> > > > > > >> > > > > > >> > > > > > > I have a great deal of experience in dealing with the Kaiser health > > > > > > > care system, also in the SF Bay Area, and am writing to give you > > > > > > > some of my painfully learned advice.> > > > > >

>> > > > > > > 1. Never go to your doctor without a list of notes and specific > > > > > > > questions to ask him/her. Then jot down the answers.> > > > > > > 2. Bring a list/chart of your BP history for the last month with you > > > > > > > to your appointment.> > > > > > > 3. If at all possible take someone with you to your appointment. It > > > > > > > is sad, but true, that the doctor will pay closer attention to you > > > > > > > within the presence of a witness who appears to be paying close > > > > > > > attention. This witness can be the one jotting down the doctors > > > > > > > answers to your questions.> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of > >

> > > > > his CV. Presumably you have already given a copy of his E of PA to > > > > > > > your relevant doctors, but the CV clues them in to the fact that you > > > > > > > are not just getting your ideas from an Internet quack.> > > > > > > 5. Mention the fact that Dr. Grim trained with Dr. Conn, as in > > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears > > > > > > > will open up. This way if you reference Dr. Grim you will be > > > > > > > listened to.> > > > > > >> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing > > > > > > > to be a cut and dry patient too. Personally I love a

gen

[Guest guest]

As comes up on here many times HCTZ put me in the ER or hospital every time I "tried" it. I usually didn't know if it was the HCTZ

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your

way.

From: <jclark24p@...>hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PMSubject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!> > > > > > >> > > > > > > From: Dianne strong <dianstrong@>> > > > > > > Subject: Re: Re: adrenal vein testing> > > > > > > hyperaldosteronism > > > > > > > Date: Thursday, March 1, 2012, 1:03 PM> > > > > > >> > > > > > >> > > > > > > I have a great deal of experience in dealing with the Kaiser health > > > > > > > care system, also in the SF Bay Area, and am writing to give you > > > > > > > some of my painfully learned advice.> > > > > >

>> > > > > > > 1. Never go to your doctor without a list of notes and specific > > > > > > > questions to ask him/her. Then jot down the answers.> > > > > > > 2. Bring a list/chart of your BP history for the last month with you > > > > > > > to your appointment.> > > > > > > 3. If at all possible take someone with you to your appointment. It > > > > > > > is sad, but true, that the doctor will pay closer attention to you > > > > > > > within the presence of a witness who appears to be paying close > > > > > > > attention. This witness can be the one jotting down the doctors > > > > > > > answers to your questions.> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of > >

> > > > > his CV. Presumably you have already given a copy of his E of PA to > > > > > > > your relevant doctors, but the CV clues them in to the fact that you > > > > > > > are not just getting your ideas from an Internet quack.> > > > > > > 5. Mention the fact that Dr. Grim trained with Dr. Conn, as in > > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears > > > > > > > will open up. This way if you reference Dr. Grim you will be > > > > > > > listened to.> > > > > > >> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing > > > > > > > to be a cut and dry patient too. Personally I love a

gen

[Guest guest]

Not much really, but when it comes to answering a question.......> > > Sadly NOTHING gaurantees you will be listened to except an imminent > > lawsuit, but it can up your chances!> >> > No matter what many will not go over an entire list with you - so > > just a caution - so prioritize the top 3 things as they will have > > you discuss what is the most important. You may get "Okay, we can't > > go over the entire list today, but is most important you want to > > talk about?" IF they say it that nice!>

>> > It would be great, but time is not endless for all the questions we > > have, especially in an internet era where we keep finding more and > > more questions to ask (plus they are typically busy typing today not > > writing so good luck getting them to even raise their head up) - it > > would be ideal and most wonderful, but there is a waiting room > > behind you full of people who do not want to wait to see the doc, > > just like you didn't like waiting.> >> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some > > may act like it, they often barely know what hyperaldosteronism is > > (they will nod in the affirmative because they recognize the term > > "aldosterone" in it, but I am telling you from experience 9/10 have > > to look it up).> >> > Wrong, I know, but bringing it in

and up needs to be done, but be > > prepared for their mood to change when you talk about someone else's > > work, or something you got off the internet by another doctor.> >> > We often go in thinking about sweet red wine and smelling > > roses .....and then when trying to get answers we end up forgetting > > those things can also be thorns and poison - so be prepared to stand > > your ground or understand it may not be as smooth, regardless of the > > steps you take.> >> > Recent research has shown that exploring the internet is more and > > more common, but the patient's eyes and mind are naturally drawn to > > the most dangerous and often rarest things - when common things are > > much more common so you must be open minded at least when it doesn't > > show or they won't check you for ragged red fiber

disease......you > > can look it up......wait...better not.> >> > Just words of caution. Until we find a way to fix it for good...

[Guest guest]

Not much really, but when it comes to answering a question.......> > > Sadly NOTHING gaurantees you will be listened to except an imminent > > lawsuit, but it can up your chances!> >> > No matter what many will not go over an entire list with you - so > > just a caution - so prioritize the top 3 things as they will have > > you discuss what is the most important. You may get "Okay, we can't > > go over the entire list today, but is most important you want to > > talk about?" IF they say it that nice!>

>> > It would be great, but time is not endless for all the questions we > > have, especially in an internet era where we keep finding more and > > more questions to ask (plus they are typically busy typing today not > > writing so good luck getting them to even raise their head up) - it > > would be ideal and most wonderful, but there is a waiting room > > behind you full of people who do not want to wait to see the doc, > > just like you didn't like waiting.> >> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some > > may act like it, they often barely know what hyperaldosteronism is > > (they will nod in the affirmative because they recognize the term > > "aldosterone" in it, but I am telling you from experience 9/10 have > > to look it up).> >> > Wrong, I know, but bringing it in

and up needs to be done, but be > > prepared for their mood to change when you talk about someone else's > > work, or something you got off the internet by another doctor.> >> > We often go in thinking about sweet red wine and smelling > > roses .....and then when trying to get answers we end up forgetting > > those things can also be thorns and poison - so be prepared to stand > > your ground or understand it may not be as smooth, regardless of the > > steps you take.> >> > Recent research has shown that exploring the internet is more and > > more common, but the patient's eyes and mind are naturally drawn to > > the most dangerous and often rarest things - when common things are > > much more common so you must be open minded at least when it doesn't > > show or they won't check you for ragged red fiber

disease......you > > can look it up......wait...better not.> >> > Just words of caution. Until we find a way to fix it for good...

[Guest guest]

Meant to finish that and say I didn't uusally know it was the HCTZ until the last stay in the hospital and then I knew. My instinct knew, but I was always accused of "doctoring myself" and messing with my meds on my own so I tried it to humor them until I knew the HCTZ dropped my K every single time.

Other BP meds did nothing for me as for my BP - and others I notice on here - but no real harm. the BB would lower my heart rate but the HCTZ was the only one causing me harm - dropping my K to really low levels.

, Yes I had surgery on Feb 2nd. The three meds mentioned, along with the hctz were my meds for quite a while. I stopped them all prior to surgery and took verapamil for testing. My BP was the same on this as all 4 of the others. Then started back on the original meds up until surgery. I'm not sure what an MCB is. After surgery, in the hospital i was given all my normal meds, no instructions for managing them at home. I was told that the Endo office would call me shortly after. Which turned out to be three weeks later. my rationale for stopping the meds was my bp was high on them before surgery, plus they made me feel so bad all the time. I've also seen many posts saying that these meds are ineffective in treating this condition. I'm just as confused as you are regarding the lack of follow up by the endo. Honestly being a Kaiser patient you just learn to play doctor on yourself, they just prescribe and send you on your

way.

From: <jclark24p@...>hyperaldosteronism Sent: Friday, March 2, 2012 6:34 PMSubject: Re: talking to the doc...or trying to get in a word

I think I'm getting confused because it looks like we have two cases comingled on this thread. Katt, I think you are the one that had surgery a month ago, right? Were you on a MCB before surgery? I'm not sure why you were on the 3 meds you were on but you changed the playing field by stopping them at the same time unless your doctor told you to. In fact, I'm surprised your Endo is not in charge now that surgery is over but maybe I'm not understnding that!> > > > > > >> > > > > > > From: Dianne strong <dianstrong@>> > > > > > > Subject: Re: Re: adrenal vein testing> > > > > > > hyperaldosteronism > > > > > > > Date: Thursday, March 1, 2012, 1:03 PM> > > > > > >> > > > > > >> > > > > > > I have a great deal of experience in dealing with the Kaiser health > > > > > > > care system, also in the SF Bay Area, and am writing to give you > > > > > > > some of my painfully learned advice.> > > > > > >> > > > > > > 1. Never go to your doctor without a list of notes and specific > > > > > > > questions to ask him/her. Then jot down the answers.> > > > > > > 2. Bring a list/chart of your BP history for the last month with you > > > > > >

> to your appointment.> > > > > > > 3. If at all possible take someone with you to your appointment. It > > > > > > > is sad, but true, that the doctor will pay closer attention to you > > > > > > > within the presence of a witness who appears to be paying close > > > > > > > attention. This witness can be the one jotting down the doctors > > > > > > > answers to your questions.> > > > > > > 4. Bring a copy of Dr. Grim's Evolution of PA paper and a copy of > > > > > > > his CV. Presumably you have already given a copy of his E of PA to > > > > > > > your relevant doctors, but the CV clues them in to the fact that you > > > > > > > are not just getting your ideas from an Internet quack.> > > > > > > 5.

Mention the fact that Dr. Grim trained with Dr. Conn, as in > > > > > > > Conn's Syndrome. Your doctor's eyebrows will rise and his/her ears > > > > > > > will open up. This way if you reference Dr. Grim you will be > > > > > > > listened to.> > > > > > >> > > > > > > Having a "cut and dry" doctor can be a good thing if you are willing > > > > > > > to be a cut and dry patient too. Personally I love a gen