Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Carol Having an AVS doesn't mean having an adrenolectomy. I have both my adrenal glands, bloated and ineffective as they are, and I've had AVS.  I say go for it if your Dr recommends the test. Having a diagnosis to know what's wrong is important - it's the starting point for healing and treatment. :-) You can then get the help you need, like I did in this forum - I'm finally starting to feel right, since beginning the DASH diet. Good luck Sue ________________________________ From: Carol Christie <carolch@...> hyperaldosteronism Sent: Monday, 12 January, 2009 2:06:59 AM Subject: AVS dilemma I would really appreciate some advice/opinion on this. I had an AVS done in 2004 - results inconclusive. Since then I have been taking various medications, but mainly and currently spiro(50mg) and isoptin(240mg) . BP averages about 145/85. I am more often than not feeling weak, tired, brain fogged, and generally unwell. I do maintain a minimal salt diet. In deciding about whether to go with another AVS, things swirl around in my mind - * memory of people saying that after adrenolectomy, the other adrenal eventually overproduced aldosterone * reading that aldo is often produced from non-adrenal sites I'd welcome your comments. Carol Get the world & #39;s best email - http://nz.mail./ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 I have never seen a of with aldo being produced from non adreal site but they are reported AVS does not help with this I would recommend more spiro or Inspra Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 11, 2009, at 10:10 AM, marysue hopper <marysuehopper@...> wrote: > Carol > > Having an AVS doesn't mean having an adrenolectomy. I have both my > adrenal glands, bloated and ineffective as they are, and I've had AVS. > > I say go for it if your Dr recommends the test. Having a diagnosis > to know what's wrong is important - it's the starting point for > healing and treatment. :-) > > You can then get the help you need, like I did in this forum - I'm > finally starting to feel right, since beginning the DASH diet. > > Good luck > Sue > > ________________________________ > From: Carol Christie <carolch@...> > hyperaldosteronism > Sent: Monday, 12 January, 2009 2:06:59 AM > Subject: AVS dilemma > > I would really appreciate some advice/opinion on this. > I had an AVS done in 2004 - results inconclusive. Since then I have > been > taking various medications, but mainly and currently spiro(50mg) and > isoptin(240mg) . BP averages about 145/85. I am more often than not > feeling weak, tired, brain fogged, and generally unwell. I do > maintain a > minimal salt diet. > In deciding about whether to go with another AVS, things swirl > around in > my mind - > > * memory of people saying that after adrenolectomy, the other > adrenal eventually overproduced aldosterone > * reading that aldo is often produced from non-adrenal sites > > I'd welcome your comments. > Carol > > > Get the world & #39;s best email - http://nz.mail./ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi Sue Thanks for your response. I know that the results of AVS will determine whether or not the condition is bilateral/unilateral and therefore operable or not. I guess I'm asking others how they decided to proceed given that there seem to be no clear cut solutions. Carol marysue hopper wrote: > > Carol > > Having an AVS doesn't mean having an adrenolectomy. I have both my > adrenal glands, bloated and ineffective as they are, and I've had AVS. > > I say go for it if your Dr recommends the test. Having a diagnosis to > know what's wrong is important - it's the starting point for healing > and treatment. :-) > > You can then get the help you need, like I did in this forum - I'm > finally starting to feel right, since beginning the DASH diet. > > Good luck > Sue > > ________________________________ > From: Carol Christie <carolch@... <mailto:carolch%40gil.com.au>> > hyperaldosteronism > <mailto:hyperaldosteronism%40> > Sent: Monday, 12 January, 2009 2:06:59 AM > Subject: AVS dilemma > > I would really appreciate some advice/opinion on this. > I had an AVS done in 2004 - results inconclusive. Since then I have been > taking various medications, but mainly and currently spiro(50mg) and > isoptin(240mg) . BP averages about 145/85. I am more often than not > feeling weak, tired, brain fogged, and generally unwell. I do maintain a > minimal salt diet. > In deciding about whether to go with another AVS, things swirl around in > my mind - > > * memory of people saying that after adrenolectomy, the other > adrenal eventually overproduced aldosterone > * reading that aldo is often produced from non-adrenal sites > > I'd welcome your comments. > Carol > > > Get the world & #39;s best email - http://nz.mail./ > <http://nz.mail./> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi Dr Grim, are you recommending more spiro rather than AVS/possible adrenolectomy? I am 62yo and had inconclusive AVS in 2004. Thanks, Carol Clarence Grim wrote: > > I have never seen a of with aldo being produced from non adreal site > but they are reported > AVS does not help with this > I would recommend more spiro or Inspra > > Sent from my iPhone > > CE Grim MD > Specializing in Difficult > Hypertension > > On Jan 11, 2009, at 10:10 AM, marysue hopper > <marysuehopper@... <mailto:marysuehopper%40.co.nz>> wrote: > > > Carol > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > adrenal glands, bloated and ineffective as they are, and I've had AVS. > > > > I say go for it if your Dr recommends the test. Having a diagnosis > > to know what's wrong is important - it's the starting point for > > healing and treatment. :-) > > > > You can then get the help you need, like I did in this forum - I'm > > finally starting to feel right, since beginning the DASH diet. > > > > Good luck > > Sue > > > > ________________________________ > > From: Carol Christie <carolch@... <mailto:carolch%40gil.com.au>> > > hyperaldosteronism > <mailto:hyperaldosteronism%40> > > Sent: Monday, 12 January, 2009 2:06:59 AM > > Subject: AVS dilemma > > > > I would really appreciate some advice/opinion on this. > > I had an AVS done in 2004 - results inconclusive. Since then I have > > been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol > > > > > > Get the world & #39;s best email - http://nz.mail./ > <http://nz.mail./> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Carol, I would have AVS in a minute. If I could cure my weakness, fatigue, brain fog and general feeling of unwellness, I would go for the chance. If the other adrenal develops an adenoma, I could take meds. I am about your age and would risk a lot to feel good again. Remember, this is just my opinion. You need to do what is right for you. Val > From: Carol Christie <carolch@... <mailto:carolch%40gil.com.au> <mailto:carolch%40gil.com.au>> > I would really appreciate some advice/opinion on this. I had an AVS done in 2004 - results inconclusive. Since then I have > > been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Carol, In my opinion, I would say have another AVS. I had one in 2006 by an interventional radiologist. He was able to collect samples from both adrenal glands. Both showed higher levels than what is taken from your arm but the right one was extremely high. This one also had the adenoma 1.2 cm. My adrenalectomy was successful and my severe HT problem along with low K was cured. I immediately came off all BP meds and K. I still have other health issues but I would do it all over in a heartbeat. Not having to deal with the severe ups and downs of my BP and several bouts of malignant HT, is enough for me to say YEAH! The key is getting a good AVS sampling of which I was fortunate. Debi **************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Spiro in my view works really well - just that it is for women much more than men - unless of course you want to grow breasts ________________________________ From: Carol Christie <carolch@...> hyperaldosteronism Sent: Monday, 12 January, 2009 3:47:16 PM Subject: Re: AVS dilemma Hi Dr Grim, are you recommending more spiro rather than AVS/possible adrenolectomy? I am 62yo and had inconclusive AVS in 2004. Thanks, Carol Clarence Grim wrote: > > I have never seen a of with aldo being produced from non adreal site > but they are reported > AVS does not help with this > I would recommend more spiro or Inspra > > Sent from my iPhone > > CE Grim MD > Specializing in Difficult > Hypertension > > On Jan 11, 2009, at 10:10 AM, marysue hopper > <marysuehopper@ .co. nz <mailto:marysuehopp er%40. co.nz>> wrote: > > > Carol > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > adrenal glands, bloated and ineffective as they are, and I've had AVS. > > > > I say go for it if your Dr recommends the test. Having a diagnosis > > to know what's wrong is important - it's the starting point for > > healing and treatment. :-) > > > > You can then get the help you need, like I did in this forum - I'm > > finally starting to feel right, since beginning the DASH diet. > > > > Good luck > > Sue > > > > ____________ _________ _________ __ > > From: Carol Christie <carolchgil (DOT) com.au <mailto:carolch% 40gil.com. au>> > > hyperaldosteronism > <mailto:hyperaldost eronism%40g roups.com> > > Sent: Monday, 12 January, 2009 2:06:59 AM > > Subject: [hyperaldosteronism ] AVS dilemma > > > > I would really appreciate some advice/opinion on this. > > I had an AVS done in 2004 - results inconclusive. Since then I have > > been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol > > > > > > Get the world & #39;s best email - http://nz.mail. / > <http://nz.mail. /> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Val, good to hear from you again. Thanks for your opinion. Carol Valarie wrote: > > Carol, I would have AVS in a minute. If I could cure my weakness, fatigue, > brain fog and general feeling of unwellness, I would go for the chance. If > the other adrenal develops an adenoma, I could take meds. I am about your > age and would risk a lot to feel good again. Remember, this is just my > opinion. You need to do what is right for you. > > Val > > From: Carol Christie <carolch@... > <mailto:carolch%40gil.com.au> <mailto:carolch%40gil.com.au> > <mailto:carolch%40gil.com.au>> > > > I would really appreciate some advice/opinion on this. > I had an AVS done in 2004 - results inconclusive. Since then I have > > > been > > > taking various medications, but mainly and currently spiro(50mg) and > > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > > feeling weak, tired, brain fogged, and generally unwell. I do > > > maintain a > > > minimal salt diet. > > > In deciding about whether to go with another AVS, things swirl > > > around in > > > my mind - > > > > > > * memory of people saying that after adrenolectomy, the other > > > adrenal eventually overproduced aldosterone > > > * reading that aldo is often produced from non-adrenal sites > > > > > > I'd welcome your comments. > > > Carol > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Val, I had mine done here in Knoxville, TN at a hospital. He kept me semi-awake but sedated during the process. It was done outpatient. Within a week, I was having my surgery. Good luck to you! Debi **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Debi, where/with whom did you get your AVS? I'm still thinking strongly about getting it. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moonium@... Carol, In my opinion, I would say have another AVS. I had one in 2006 by an interventional radiologist. He was able to collect samples from both adrenal glands. Both showed higher levels than what is taken from your arm but the right one was extremely high. This one also had the adenoma 1.2 cm. My adrenalectomy was successful and my severe HT problem along with low K was cured. I immediately came off all BP meds and K. I still have other health issues but I would do it all over in a heartbeat. Not having to deal with the severe ups and downs of my BP and several bouts of malignant HT, is enough for me to say YEAH! The key is getting a good AVS sampling of which I was fortunate. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Carol I agree with Val's comments below. What I too would give to cure my weakness, fatigue, brain fog and general feeling of unwellness! I had to have two AVS procedures (the first one didn't work) only to be told I have very strong overproduction of aldosterone from both adrenal glands, resulting in the condition being inoperable. That was July 08, and since then I feel I have lost who I was. Prior to Christmas and being in a highly emotional state I asked my Doctor if I could try to lower the dose of Spiro to see if I improved. We dropped my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. Clearly the Spiro (even my seemingly low dose) has a tremendous effect on the adrenal glands, however during that 3-day period of low dose Spiro I felt my energetic old self. Clearly my choice is to take the Spiro and live in the continuously fatigued and foggy state (causing me to become quite anxious), or don't take it and wait for the stroke or something else life threatening. Great choices hey, but clearly I am taking the Spiro option and praying something else comes along. My Doctor has told me that here in Australia they are trialling a new drug for heart failure patients and apparently it acts on the adrenal glands in the same way as Spiro (I don't know the name yet) and my Doctor has said that if things don't improve for me she is going to write to the pharmaceutical company to ask them on compassionate grounds for me to participate in the trial so we can see if things will improve on that drug. I am 42 years of age and feel very anxious about my future and I keep fighting the feeling of depression that creeps into my surrounds as I battle each day, so I think anything that could be done to improve this condition should be tried! Best of luck to all. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Valarie Sent: Monday, 12 January 2009 4:07 PM hyperaldosteronism Subject: RE: AVS dilemma Carol, I would have AVS in a minute. If I could cure my weakness, fatigue, brain fog and general feeling of unwellness, I would go for the chance. If the other adrenal develops an adenoma, I could take meds. I am about your age and would risk a lot to feel good again. Remember, this is just my opinion. You need to do what is right for you. Val > From: Carol Christie <carolch@... <mailto:carolch%40gil.com.au> <mailto:carolch%40gil.com.au> <mailto:carolch%40gil.com.au>> > I would really appreciate some advice/opinion on this. I had an AVS done in 2004 - results inconclusive. Since then I have > > been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Thanks for the update Do you have the parholoy report for you and your families files? Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 11:29 AM, Valarie <val@...> wrote: > Debi, where/with whom did you get your AVS? I'm still thinking > strongly > about getting it. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of moonium@... > > Carol, > > In my opinion, I would say have another AVS. I had one in 2006 by an > interventional radiologist. He was able to collect samples from both > adrenal > glands. > Both showed higher levels than what is taken from your arm but the > right one > > was extremely high. This one also had the adenoma 1.2 cm. My > adrenalectomy > was successful and my severe HT problem along with low K was cured. I > immediately came off all BP meds and K. I still have other health > issues but > I would > do it all over in a heartbeat. Not having to deal with the severe > ups and > downs of my BP and several bouts of malignant HT, is enough for me > to say > YEAH! > > The key is getting a good AVS sampling of which I was fortunate. > > Debi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 , there is a drug called Inspra that is used for PA. Have you checked that out? One of our list members in Australia is going to be starting on it. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of megra0409 Carol I agree with Val's comments below. What I too would give to cure my weakness, fatigue, brain fog and general feeling of unwellness! I had to have two AVS procedures (the first one didn't work) only to be told I have very strong overproduction of aldosterone from both adrenal glands, resulting in the condition being inoperable. That was July 08, and since then I feel I have lost who I was. Prior to Christmas and being in a highly emotional state I asked my Doctor if I could try to lower the dose of Spiro to see if I improved. We dropped my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. Clearly the Spiro (even my seemingly low dose) has a tremendous effect on the adrenal glands, however during that 3-day period of low dose Spiro I felt my energetic old self. Clearly my choice is to take the Spiro and live in the continuously fatigued and foggy state (causing me to become quite anxious), or don't take it and wait for the stroke or something else life threatening. Great choices hey, but clearly I am taking the Spiro option and praying something else comes along. My Doctor has told me that here in Australia they are trialling a new drug for heart failure patients and apparently it acts on the adrenal glands in the same way as Spiro (I don't know the name yet) and my Doctor has said that if things don't improve for me she is going to write to the pharmaceutical company to ask them on compassionate grounds for me to participate in the trial so we can see if things will improve on that drug. I am 42 years of age and feel very anxious about my future and I keep fighting the feeling of depression that creeps into my surrounds as I battle each day, so I think anything that could be done to improve this condition should be tried! Best of luck to all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 No I haven't tried that one. I am meeting my specialist at the renal unit shortly so I will mention this to her and see what she thinks. I wonder if this is the same drug as she was referring to as being trialled for heart failure patients? I will let you know. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Valarie Sent: Tuesday, 13 January 2009 9:47 AM hyperaldosteronism Subject: RE: AVS dilemma , there is a drug called Inspra that is used for PA. Have you checked that out? One of our list members in Australia is going to be starting on it. Val From: hyperaldosteronism <mailto:hyperaldosteronism%40> [mailto:hyperaldosteronism <mailto:hyperaldosteronism%40> ] On Behalf Of megra0409 Carol I agree with Val's comments below. What I too would give to cure my weakness, fatigue, brain fog and general feeling of unwellness! I had to have two AVS procedures (the first one didn't work) only to be told I have very strong overproduction of aldosterone from both adrenal glands, resulting in the condition being inoperable. That was July 08, and since then I feel I have lost who I was. Prior to Christmas and being in a highly emotional state I asked my Doctor if I could try to lower the dose of Spiro to see if I improved. We dropped my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. Clearly the Spiro (even my seemingly low dose) has a tremendous effect on the adrenal glands, however during that 3-day period of low dose Spiro I felt my energetic old self. Clearly my choice is to take the Spiro and live in the continuously fatigued and foggy state (causing me to become quite anxious), or don't take it and wait for the stroke or something else life threatening. Great choices hey, but clearly I am taking the Spiro option and praying something else comes along. My Doctor has told me that here in Australia they are trialling a new drug for heart failure patients and apparently it acts on the adrenal glands in the same way as Spiro (I don't know the name yet) and my Doctor has said that if things don't improve for me she is going to write to the pharmaceutical company to ask them on compassionate grounds for me to participate in the trial so we can see if things will improve on that drug. I am 42 years of age and feel very anxious about my future and I keep fighting the feeling of depression that creeps into my surrounds as I battle each day, so I think anything that could be done to improve this condition should be tried! Best of luck to all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Make that pathology report Joys of the iPhone! Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 2:17 PM, Clarence Grim <lowerbp2@...> wrote: > Thanks for the update > > Do you have the parholoy report for you and your families files? > > Sent from my iPhone > > CE Grim MD > Specializing in Difficult > Hypertension > > On Jan 12, 2009, at 11:29 AM, Valarie <val@...> wrote: > > > Debi, where/with whom did you get your AVS? I'm still thinking > > strongly > > about getting it. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of moonium@... > > > > Carol, > > > > In my opinion, I would say have another AVS. I had one in 2006 by an > > interventional radiologist. He was able to collect samples from both > > adrenal > > glands. > > Both showed higher levels than what is taken from your arm but the > > right one > > > > was extremely high. This one also had the adenoma 1.2 cm. My > > adrenalectomy > > was successful and my severe HT problem along with low K was > cured. I > > immediately came off all BP meds and K. I still have other health > > issues but > > I would > > do it all over in a heartbeat. Not having to deal with the severe > > ups and > > downs of my BP and several bouts of malignant HT, is enough for me > > to say > > YEAH! > > > > The key is getting a good AVS sampling of which I was fortunate. > > > > Debi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Make that pathology report Joys of the iPhone! Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 2:17 PM, Clarence Grim <lowerbp2@...> wrote: > Thanks for the update > > Do you have the parholoy report for you and your families files? > > Sent from my iPhone > > CE Grim MD > Specializing in Difficult > Hypertension > > On Jan 12, 2009, at 11:29 AM, Valarie <val@...> wrote: > > > Debi, where/with whom did you get your AVS? I'm still thinking > > strongly > > about getting it. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of moonium@... > > > > Carol, > > > > In my opinion, I would say have another AVS. I had one in 2006 by an > > interventional radiologist. He was able to collect samples from both > > adrenal > > glands. > > Both showed higher levels than what is taken from your arm but the > > right one > > > > was extremely high. This one also had the adenoma 1.2 cm. My > > adrenalectomy > > was successful and my severe HT problem along with low K was > cured. I > > immediately came off all BP meds and K. I still have other health > > issues but > > I would > > do it all over in a heartbeat. Not having to deal with the severe > > ups and > > downs of my BP and several bouts of malignant HT, is enough for me > > to say > > YEAH! > > > > The key is getting a good AVS sampling of which I was fortunate. > > > > Debi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 In the US it is approved for CHF or HTN Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 3:22 PM, megra0409 <megra0409@...> wrote: > No I haven't tried that one. I am meeting my specialist at the renal > unit > shortly so I will mention this to her and see what she thinks. I > wonder if > this is the same drug as she was referring to as being trialled for > heart > failure patients? I will let you know. > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Valarie > > Sent: Tuesday, 13 January 2009 9:47 AM > hyperaldosteronism > Subject: RE: AVS dilemma > > , there is a drug called Inspra that is used for PA. Have you > checked > that out? One of our list members in Australia is going to be > starting on > it. > > Val > > From: hyperaldosteronism > <mailto:hyperaldosteronism%40> > [mailto:hyperaldosteronism > <mailto:hyperaldosteronism%40> ] On Behalf Of megra0409 > > Carol I agree with Val's comments below. What I too would give to > cure my > weakness, fatigue, brain fog and general feeling of unwellness! I > had to > have two AVS procedures (the first one didn't work) only to be told > I have > very strong overproduction of aldosterone from both adrenal glands, > resulting in the condition being inoperable. That was July 08, and > since > then I feel I have lost who I was. > > Prior to Christmas and being in a highly emotional state I asked my > Doctor > if I could try to lower the dose of Spiro to see if I improved. We > dropped > my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. > Clearly the Spiro (even my seemingly low dose) has a tremendous > effect on > the adrenal glands, however during that 3-day period of low dose > Spiro I > felt my energetic old self. Clearly my choice is to take the Spiro and > live in the continuously fatigued and foggy state (causing me to > become > quite anxious), or don't take it and wait for the stroke or > something else > life threatening. Great choices hey, but clearly I am taking the Spiro > option and praying something else comes along. > > My Doctor has told me that here in Australia they are trialling a > new drug > for heart failure patients and apparently it acts on the adrenal > glands in > the same way as Spiro (I don't know the name yet) and my Doctor has > said > that if things don't improve for me she is going to write to the > pharmaceutical company to ask them on compassionate grounds for me to > participate in the trial so we can see if things will improve on > that drug. > I am 42 years of age and feel very anxious about my future and I keep > fighting the feeling of depression that creeps into my surrounds as > I battle > each day, so I think anything that could be done to improve this > condition > should be tried! > > Best of luck to all. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Tell your renal guy I worked with Judy Whitworth for a year in Melbourne 1983 Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 3:22 PM, megra0409 <megra0409@...> wrote: > No I haven't tried that one. I am meeting my specialist at the renal > unit > shortly so I will mention this to her and see what she thinks. I > wonder if > this is the same drug as she was referring to as being trialled for > heart > failure patients? I will let you know. > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Valarie > > Sent: Tuesday, 13 January 2009 9:47 AM > hyperaldosteronism > Subject: RE: AVS dilemma > > , there is a drug called Inspra that is used for PA. Have you > checked > that out? One of our list members in Australia is going to be > starting on > it. > > Val > > From: hyperaldosteronism > <mailto:hyperaldosteronism%40> > [mailto:hyperaldosteronism > <mailto:hyperaldosteronism%40> ] On Behalf Of megra0409 > > Carol I agree with Val's comments below. What I too would give to > cure my > weakness, fatigue, brain fog and general feeling of unwellness! I > had to > have two AVS procedures (the first one didn't work) only to be told > I have > very strong overproduction of aldosterone from both adrenal glands, > resulting in the condition being inoperable. That was July 08, and > since > then I feel I have lost who I was. > > Prior to Christmas and being in a highly emotional state I asked my > Doctor > if I could try to lower the dose of Spiro to see if I improved. We > dropped > my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. > Clearly the Spiro (even my seemingly low dose) has a tremendous > effect on > the adrenal glands, however during that 3-day period of low dose > Spiro I > felt my energetic old self. Clearly my choice is to take the Spiro and > live in the continuously fatigued and foggy state (causing me to > become > quite anxious), or don't take it and wait for the stroke or > something else > life threatening. Great choices hey, but clearly I am taking the Spiro > option and praying something else comes along. > > My Doctor has told me that here in Australia they are trialling a > new drug > for heart failure patients and apparently it acts on the adrenal > glands in > the same way as Spiro (I don't know the name yet) and my Doctor has > said > that if things don't improve for me she is going to write to the > pharmaceutical company to ask them on compassionate grounds for me to > participate in the trial so we can see if things will improve on > that drug. > I am 42 years of age and feel very anxious about my future and I keep > fighting the feeling of depression that creeps into my surrounds as > I battle > each day, so I think anything that could be done to improve this > condition > should be tried! > > Best of luck to all. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Tell your renal guy I worked with Judy Whitworth for a year in Melbourne 1983 Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 3:22 PM, megra0409 <megra0409@...> wrote: > No I haven't tried that one. I am meeting my specialist at the renal > unit > shortly so I will mention this to her and see what she thinks. I > wonder if > this is the same drug as she was referring to as being trialled for > heart > failure patients? I will let you know. > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Valarie > > Sent: Tuesday, 13 January 2009 9:47 AM > hyperaldosteronism > Subject: RE: AVS dilemma > > , there is a drug called Inspra that is used for PA. Have you > checked > that out? One of our list members in Australia is going to be > starting on > it. > > Val > > From: hyperaldosteronism > <mailto:hyperaldosteronism%40> > [mailto:hyperaldosteronism > <mailto:hyperaldosteronism%40> ] On Behalf Of megra0409 > > Carol I agree with Val's comments below. What I too would give to > cure my > weakness, fatigue, brain fog and general feeling of unwellness! I > had to > have two AVS procedures (the first one didn't work) only to be told > I have > very strong overproduction of aldosterone from both adrenal glands, > resulting in the condition being inoperable. That was July 08, and > since > then I feel I have lost who I was. > > Prior to Christmas and being in a highly emotional state I asked my > Doctor > if I could try to lower the dose of Spiro to see if I improved. We > dropped > my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. > Clearly the Spiro (even my seemingly low dose) has a tremendous > effect on > the adrenal glands, however during that 3-day period of low dose > Spiro I > felt my energetic old self. Clearly my choice is to take the Spiro and > live in the continuously fatigued and foggy state (causing me to > become > quite anxious), or don't take it and wait for the stroke or > something else > life threatening. Great choices hey, but clearly I am taking the Spiro > option and praying something else comes along. > > My Doctor has told me that here in Australia they are trialling a > new drug > for heart failure patients and apparently it acts on the adrenal > glands in > the same way as Spiro (I don't know the name yet) and my Doctor has > said > that if things don't improve for me she is going to write to the > pharmaceutical company to ask them on compassionate grounds for me to > participate in the trial so we can see if things will improve on > that drug. > I am 42 years of age and feel very anxious about my future and I keep > fighting the feeling of depression that creeps into my surrounds as > I battle > each day, so I think anything that could be done to improve this > condition > should be tried! > > Best of luck to all. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Other name is eplerenone Usually takes 2 x as much As spirio Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 2:46 PM, Valarie <val@...> wrote: > , there is a drug called Inspra that is used for PA. Have you > checked > that out? One of our list members in Australia is going to be > starting on > it. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of megra0409 > > Carol I agree with Val's comments below. What I too would give to > cure my > weakness, fatigue, brain fog and general feeling of unwellness! I > had to > have two AVS procedures (the first one didn't work) only to be told > I have > very strong overproduction of aldosterone from both adrenal glands, > resulting in the condition being inoperable. That was July 08, and > since > then I feel I have lost who I was. > > Prior to Christmas and being in a highly emotional state I asked my > Doctor > if I could try to lower the dose of Spiro to see if I improved. We > dropped > my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. > Clearly the Spiro (even my seemingly low dose) has a tremendous > effect on > the adrenal glands, however during that 3-day period of low dose > Spiro I > felt my energetic old self. Clearly my choice is to take the Spiro and > live in the continuously fatigued and foggy state (causing me to > become > quite anxious), or don't take it and wait for the stroke or > something else > life threatening. Great choices hey, but clearly I am taking the Spiro > option and praying something else comes along. > > My Doctor has told me that here in Australia they are trialling a > new drug > for heart failure patients and apparently it acts on the adrenal > glands in > the same way as Spiro (I don't know the name yet) and my Doctor has > said > that if things don't improve for me she is going to write to the > pharmaceutical company to ask them on compassionate grounds for me to > participate in the trial so we can see if things will improve on > that drug. > I am 42 years of age and feel very anxious about my future and I keep > fighting the feeling of depression that creeps into my surrounds as > I battle > each day, so I think anything that could be done to improve this > condition > should be tried! > > Best of luck to all. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Also tell him I know Funder Very well he is first author on Endo guidelines for PA Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 12, 2009, at 1:45 PM, megra0409 <megra0409@...> wrote: > Carol I agree with Val's comments below. What I too would give to > cure my > weakness, fatigue, brain fog and general feeling of unwellness! I > had to > have two AVS procedures (the first one didn't work) only to be told > I have > very strong overproduction of aldosterone from both adrenal glands, > resulting in the condition being inoperable. That was July 08, and > since > then I feel I have lost who I was. > > Prior to Christmas and being in a highly emotional state I asked my > Doctor > if I could try to lower the dose of Spiro to see if I improved. We > dropped > my dosage from 37.5mg to 12.5mg and my BP went from 130/70 to 215/115. > Clearly the Spiro (even my seemingly low dose) has a tremendous > effect on > the adrenal glands, however during that 3-day period of low dose > Spiro I > felt my energetic old self. Clearly my choice is to take the Spiro and > live in the continuously fatigued and foggy state (causing me to > become > quite anxious), or don't take it and wait for the stroke or > something else > life threatening. Great choices hey, but clearly I am taking the Spiro > option and praying something else comes along. > > My Doctor has told me that here in Australia they are trialling a > new drug > for heart failure patients and apparently it acts on the adrenal > glands in > the same way as Spiro (I don't know the name yet) and my Doctor has > said > that if things don't improve for me she is going to write to the > pharmaceutical company to ask them on compassionate grounds for me to > participate in the trial so we can see if things will improve on > that drug. > I am 42 years of age and feel very anxious about my future and I keep > fighting the feeling of depression that creeps into my surrounds as > I battle > each day, so I think anything that could be done to improve this > condition > should be tried! > > Best of luck to all. > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Valarie > > Sent: Monday, 12 January 2009 4:07 PM > hyperaldosteronism > Subject: RE: AVS dilemma > > Carol, I would have AVS in a minute. If I could cure my weakness, > fatigue, > brain fog and general feeling of unwellness, I would go for the > chance. If > the other adrenal develops an adenoma, I could take meds. I am about > your > age and would risk a lot to feel good again. Remember, this is just my > opinion. You need to do what is right for you. > > Val > > From: Carol Christie <carolch@... <mailto:carolch > %40gil.com.au> > <mailto:carolch%40gil.com.au> > <mailto:carolch%40gil.com.au>> > > > I would really appreciate some advice/opinion on this. > I had an AVS done in 2004 - results inconclusive. Since then I have > > > been > > > taking various medications, but mainly and currently spiro(50mg) > and > > > isoptin(240mg) . BP averages about 145/85. I am more often than > not > > > feeling weak, tired, brain fogged, and generally unwell. I do > > > maintain a > > > minimal salt diet. > > > In deciding about whether to go with another AVS, things swirl > > > around in > > > my mind - > > > > > > * memory of people saying that after adrenolectomy, the other > > > adrenal eventually overproduced aldosterone > > > * reading that aldo is often produced from non-adrenal sites > > > > > > I'd welcome your comments. > > > Carol > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Dr Grim, do you mean more spiro rather than an AVS at this stage? Carol Clarence Grim wrote: > > I have never seen a of with aldo being produced from non adreal site > but they are reported > AVS does not help with this > I would recommend more spiro or Inspra > > Sent from my iPhone > > CE Grim MD > Specializing in Difficult > Hypertension > > On Jan 11, 2009, at 10:10 AM, marysue hopper > <marysuehopper@... <mailto:marysuehopper%40.co.nz>> wrote: > > > Carol > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > adrenal glands, bloated and ineffective as they are, and I've had AVS. > > > > I say go for it if your Dr recommends the test. Having a diagnosis > > to know what's wrong is important - it's the starting point for > > healing and treatment. :-) > > > > You can then get the help you need, like I did in this forum - I'm > > finally starting to feel right, since beginning the DASH diet. > > > > Good luck > > Sue > > > > ________________________________ > > From: Carol Christie <carolch@... <mailto:carolch%40gil.com.au>> > > hyperaldosteronism > <mailto:hyperaldosteronism%40> > > Sent: Monday, 12 January, 2009 2:06:59 AM > > Subject: AVS dilemma > > > > I would really appreciate some advice/opinion on this. > > I had an AVS done in 2004 - results inconclusive. Since then I have > > been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol > > > > > > Get the world & #39;s best email - http://nz.mail./ > <http://nz.mail./> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Dr Grim, do you mean more spiro rather than an AVS at this stage? Carol Clarence Grim wrote: > > I have never seen a of with aldo being produced from non adreal site > but they are reported > AVS does not help with this > I would recommend more spiro or Inspra > > Sent from my iPhone > > CE Grim MD > Specializing in Difficult > Hypertension > > On Jan 11, 2009, at 10:10 AM, marysue hopper > <marysuehopper@... <mailto:marysuehopper%40.co.nz>> wrote: > > > Carol > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > adrenal glands, bloated and ineffective as they are, and I've had AVS. > > > > I say go for it if your Dr recommends the test. Having a diagnosis > > to know what's wrong is important - it's the starting point for > > healing and treatment. :-) > > > > You can then get the help you need, like I did in this forum - I'm > > finally starting to feel right, since beginning the DASH diet. > > > > Good luck > > Sue > > > > ________________________________ > > From: Carol Christie <carolch@... <mailto:carolch%40gil.com.au>> > > hyperaldosteronism > <mailto:hyperaldosteronism%40> > > Sent: Monday, 12 January, 2009 2:06:59 AM > > Subject: AVS dilemma > > > > I would really appreciate some advice/opinion on this. > > I had an AVS done in 2004 - results inconclusive. Since then I have > > been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol > > > > > > Get the world & #39;s best email - http://nz.mail./ > <http://nz.mail./> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Was it done with ACTH? We should add his name to successful AVS Drs?? We should start one. I can assure you that not every intervential radiologists can do this well. May your pressure be low!  CE Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting Inc.(sharedcareinc.com) Clinical Professor of Internal Medicine Medical and Cardiology Medical College of Wisconsin Board certified in Internal Med, Geriatrics and Hypertension. Interests: 1. Difficult to control high blood pressure. 2. The effect of recent evolutionary forces on high blood pressure in human populations. 3. Improving blood pressure measurement in the office and out. On Jan 12, 2009, at 12:31 PM, moonium@... wrote: > Val, > > I had mine done here in Knoxville, TN at a hospital. He kept me > semi-awake > but sedated during the process. It was done outpatient. Within a > week, I was > having my surgery. > > Good luck to you! > Debi > **************A Good Credit Score is 700 or Above. See yours in > just 2 easy > steps! > (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol? > redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072% > 26hmpgID=62%26bcd=De > cemailfooterNO62) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Was it done with ACTH? We should add his name to successful AVS Drs?? We should start one. I can assure you that not every intervential radiologists can do this well. May your pressure be low!  CE Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting Inc.(sharedcareinc.com) Clinical Professor of Internal Medicine Medical and Cardiology Medical College of Wisconsin Board certified in Internal Med, Geriatrics and Hypertension. Interests: 1. Difficult to control high blood pressure. 2. The effect of recent evolutionary forces on high blood pressure in human populations. 3. Improving blood pressure measurement in the office and out. On Jan 12, 2009, at 12:31 PM, moonium@... wrote: > Val, > > I had mine done here in Knoxville, TN at a hospital. He kept me > semi-awake > but sedated during the process. It was done outpatient. Within a > week, I was > having my surgery. > > Good luck to you! > Debi > **************A Good Credit Score is 700 or Above. See yours in > just 2 easy > steps! > (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol? > redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072% > 26hmpgID=62%26bcd=De > cemailfooterNO62) > > Quote Link to comment Share on other sites More sharing options...
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