Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Another reason we need a good dAtabase. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Sep 26, 2009, at 10:25 AM, Francis Bill <georgewbill@...> wrote: It is my doctor that needs to read your evolution Article. I will try to get him to read it. Not sure how open he will be to reading it. Again My list while it my not be 100% right seems to be things others with Conn's have. So are they Conn's related? There is a good list of SX on here that many Doctors say have nothing to do with Conn's But most with Conn's have many of them. Would like to see how many have tests that show what is in this list. Maybe they can add others. Here is list of things that I think should be looked at as beings Conn's related. B/P readings that change from high to low. K that 3.8 or below. Meds that are given to increse K but only have little effect. Glucose that is 92 or higher with it being over the high of the range at times. Urine with low SP.GR. Fluid retention. At least one adnormal EKG. A CT that shows the adrenal adenoma. This is after you have ruled out CHF and ECG and stress test have ruled out heart related problems. > >> > > >> > Yes renin is low but aldo is not. > >> > > >> > If renin is very low and the system is working aldo will be low. If > >> > it is not then aldo is driving the renin down. Well Aldo/salt. > >> > > >> > > >> > >> > > > > > > > > > > > Messages in this topic (92) Reply (via web post) | Start a new topic Recent Activity 1 New Links Visit Your Group Give Back for Good Get inspired by a good cause. Y! Toolbar Get it Free! easy 1-click access to your groups. Start a group in 3 easy steps. Connect with others. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 This may work but you do have to pay for it http://www.trackvia.com/index.htm It is my doctor that needs to read your evolution Article. I will try to get him to read it. Not sure how open he will be to reading it. Again My list while it my not be 100% right seems to be things others with Conn's have. So are they Conn's related? There is a good list of SX on here that many Doctors say have nothing to do with Conn's But most with Conn's have many of them. Would like to see how many have tests that show what is in this list. Maybe they can add others. Here is list of things that I think should be looked at as beings Conn's related. B/P readings that change from high to low. K that 3.8 or below. Meds that are given to increse K but only have little effect. Glucose that is 92 or higher with it being over the high of the range at times. Urine with low SP.GR. Fluid retention. At least one adnormal EKG. A CT that shows the adrenal adenoma. This is after you have ruled out CHF and ECG and stress test have ruled out heart related problems. > >> > > >> > Yes renin is low but aldo is not. > >> > > >> > If renin is very low and the system is working aldo will be low. If > >> > it is not then aldo is driving the renin down. Well Aldo/salt. > >> > > >> > > >> > >> > > > > > > > > > > > Messages in this topic (92) Reply (via web post) | Start a new topic Recent Activity 1 New Links Visit Your Group Give Back for Good Get inspired by a good cause. Y! Toolbar Get it Free! easy 1-click access to your groups. Start a group in 3 easy steps. Connect with others. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 This may be something that works better for you and as A data base I think it is free. http://www.disc.wisc.edu/ > > > >> > > > > >> > Yes renin is low but aldo is not. > > > >> > > > > >> > If renin is very low and the system is working aldo will be low. If > > > >> > it is not then aldo is driving the renin down. Well Aldo/salt. > > > >> > > > > >> > > > > >> > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Messages in this topic (92) > > > > Reply (via web post) > | > > Start a new topic > > > > > > > > > > > > > > > > > > > > > > > > > Recent Activity > > > > > > 1 > New Links > > > > > > > Visit Your Group > > > > > > Give Back > for Good > Get inspired > by a good cause. > > > Y! Toolbar > Get it Free! > easy 1-click access > to your groups. > > > > Start a group > in 3 easy steps. > Connect with others. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 At what point should a tumorous adrenal be removed, even with bilateral hyperplasia? Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com Is your name Francis Bill or Bill Francis? Time of day does matter with aldo. It follows a diurnal patter - highest in the morning and falling throughout the day. Val From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Francis Bill With me both aldo and renin are with range. This is because I believe the meds I take changed the test results. This sees to happen to a lot of Conn's people. It is probably the biggest reason Conn's goes undiagnosed for so long if at all. Time of day of blood draw change results. When the lab wants the draw to be done before 10:00AM and it is done at 3:00PM does this matter? Here is list of things that I think should be looked at as beings Conn's related. B/P readings that change from high to low. K that 3.8 or below. Meds that are given to increse K but only have little effect. Glucose that is 92 or higher with it being over the high of the range at times. Urine with low SP.GR. Fluid retention. At least one adnormal EKG. A CT that shows the adrenal adenoma. This is after you have ruled out CHF and ECG and stress test have ruled out heart related problems. >> Yes renin is low but aldo is not.> > If renin is very low and the system is working aldo will be low. If > it is not then aldo is driving the renin down. Well Aldo/salt.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 To bad they didn't have someone like you teaching at Dartmouth. They sure need to change what they teach about Conn's. Since they are one of the top ten med schools in the US they should have someone that knows all about Conn's teaching there. Since they teach doctors all over the world they should do it right. By not having someone there like you they do a disservice to both those they teach and to anyone that goes to the doctors they teach that have Conn's. Since they have failed that my low renin mid range aldo could be due to Conn's and you seem to think it does. Someone is wrong and I don't think it is you. So Dartmouth must be wrong. A doctor that goes to Dartmouth will be paid more just because he can say he went there. With this higher pay he should have higher knowledge no lower. > >> > > >> > Yes renin is low but aldo is not. > >> > > >> > If renin is very low and the system is working aldo will be low. If > >> > it is not then aldo is driving the renin down. Well Aldo/salt. > >> > > >> > > >> > >> > > > > > > > > > > > > > > > > > > Messages in this topic (89) Reply (via web post) | Start a new topic > > Messages | Files | Photos | Links | Database | Polls | Members | > > Calendar > > > > Change settings via the Web ( ID required) > > Change settings via email: Switch delivery to Daily Digest | Switch > > format to Traditional > > Visit Your Group | Terms of Use | Unsubscribe > > RECENT ACTIVITY > > 1 > > New Links > > Visit Your Group > > Give Back > > for Good > > > > Get inspired > > > > by a good cause. > > > > Y! Toolbar > > Get it Free! > > > > easy 1-click access > > > > to your groups. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 I think you need a trial of spironolactone to see what it does to your BP and K. The family practice doc I went to last year graduated from Harvard Medical. She said she had never heard of Conn's. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill Since they have failed that my low renin mid range aldo could be due to Conn's and you seem to think it does. Someone is wrong and I don't think it is you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 So when your doctor told you she never heard of Conn's did you walk out? Just think how much more she will get paid just because she went to Harvard. From: Valarie <val@...>Subject: RE: Re: lost informationhyperaldosteronism Date: Sunday, September 27, 2009, 3:45 AM I think you need a trial of spironolactone to see what it does to your BP and K. The family practice doc I went to last year graduated from Harvard Medical. She said she had never heard of Conn's. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis BillSince they have failed that my low renin mid range aldo could be due to Conn's and you seem to think it does. Someone is wrong and I don't think it is you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 Just my guess, the reality with me is the tradeoff between medications or operations. As long as the meds, or exercise, or diet works, more or less, I 'll duck the operation. It's when you begin to feel so depressed that you must DO something. Regards Re: [hyperaldosteronism ] Re: lost information hyperaldosteronism Date: Saturday, September 26, 2009, 5:57 AM You don't get my point. A renin in the lowest range of normal should be associated with an aldo in the lowest range of normal. So if renin is lowish and aldo is not that is abnormal. Clarence Grim lowerbp2mac (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 I haven't been back to her - no reason to go. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bill So when your doctor told you she never heard of Conn's did you walk out? Just think how much more she will get paid just because she went to Harvard. From: Valarie <val@...> I think you need a trial of spironolactone to see what it does to your BP and K. The family practice doc I went to last year graduated from Harvard Medical. She said she had never heard of Conn's. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill Since they have failed that my low renin mid range aldo could be due to Conn's and you seem to think it does. Someone is wrong and I don't think it is you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 The bigger problem is that Medical schools like Harvard and Dartmouth fail to teach about Conn's. > > From: Valarie <val@...> > I think you need a trial of spironolactone to see what it does to your BP > and K. > The family practice doc I went to last year graduated from Harvard Medical. > She said she had never heard of Conn's. > Val > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Francis Bill > > Since they have failed that my low renin mid range aldo could be due to > Conn's and you seem to think it does. Someone is wrong and I don't think it > is you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 That wasn't my question. Once I have sick leave, if I only have unilateral disease, the gland is coming out. My question was, if I have bilateral disease, is leaving the right adrenal with a two CM tumor safe for now - and how big does it have to get before it is unsafe? Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com From: Clarence Grim <lowerbp2mac (DOT) com>Subject: Re: [hyperaldosteronism ] Re: lost informationhyperaldosteronismDate: Saturday, September 26, 2009, 5:57 AMYou don't get my point. A renin in the lowest range of normal should beassociated with an aldo in the lowest range of normal. So if renin islowish and aldo is not that is abnormal.Clarence Grimlowerbp2mac (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 > > I was diagnosed by Dr Comi at Dartmouth Hitchcock with Primary Aldosteronism. He knew what it was, he knew how to run the tests... properly... and knew about the frustration that people feel as this a disease and that is often overlooked. He runs the endo department. Not all is perfect at DH, but ask to see him... if going there is your only choice find him. While I was hospitalized there teams of doctors that came into my room and almost all knew about PA. In a teaching hospital my experience is that there seems to be a lot of discussion as to who is running the show and a lot of politics when one team disagrees with another... saw it happened more than once, there is a territory thing and all sorts of pride and ego, none of which helps the patient. Could have been just the way I saw it or perhaps its what it is... opinion on this one. My trouble started when my local endo disputed the tests results from Dartmouth.... and he sent me there. But this group has educated me enough that I know what I am talking about and I am looking for a new endo and trying to get into a group of doctors that Dr Grim suggested. Spirno and I do not get along and the local guy will not prescribe Inspira, because after-all he does not think I have PA.... :-) It's a battle :-) Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Thank you for this information. I will contact Dr Comi. You are right about the politics Not only among doctors but it is wide spread at Dartmouth. I used to work there started out in housekeeping and then worked in maintenance. They paided well but the politics went worth it. > > > > > I was diagnosed by Dr Comi at Dartmouth Hitchcock with Primary Aldosteronism. He knew what it was, he knew how to run the tests... properly... and knew about the frustration that people feel as this a disease and that is often overlooked. He runs the endo department. Not all is perfect at DH, but ask to see him... if going there is your only choice find him. > > While I was hospitalized there teams of doctors that came into my room and almost all knew about PA. In a teaching hospital my experience is that there seems to be a lot of discussion as to who is running the show and a lot of politics when one team disagrees with another... saw it happened more than once, there is a territory thing and all sorts of pride and ego, none of which helps the patient. Could have been just the way I saw it or perhaps its what it is... opinion on this one. > > My trouble started when my local endo disputed the tests results from Dartmouth.... and he sent me there. But this group has educated me enough that I know what I am talking about and I am looking for a new endo and trying to get into a group of doctors that Dr Grim suggested. Spirno and I do not get along and the local guy will not prescribe Inspira, because after-all he does not think I have PA.... :-) > > It's a battle > :-) > > Steve > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 U can send them my article. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Sep 28, 2009, at 1:36 AM, toben84 <stevoandsuze@...> wrote: > > I was diagnosed by Dr Comi at Dartmouth Hitchcock with Primary Aldosteronism. He knew what it was, he knew how to run the tests... properly... and knew about the frustration that people feel as this a disease and that is often overlooked. He runs the endo department. Not all is perfect at DH, but ask to see him... if going there is your only choice find him. While I was hospitalized there teams of doctors that came into my room and almost all knew about PA. In a teaching hospital my experience is that there seems to be a lot of discussion as to who is running the show and a lot of politics when one team disagrees with another... saw it happened more than once, there is a territory thing and all sorts of pride and ego, none of which helps the patient. Could have been just the way I saw it or perhaps its what it is... opinion on this one. My trouble started when my local endo disputed the tests results from Dartmouth.... and he sent me there. But this group has educated me enough that I know what I am talking about and I am looking for a new endo and trying to get into a group of doctors that Dr Grim suggested. Spirno and I do not get along and the local guy will not prescribe Inspira, because after-all he does not think I have PA.... :-) It's a battle :-) Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 I understand B/P changes depending on what you are doing. I have also questions the way blood perssure readings are done. I find that some that take my B/P seem to come up with low readings while others get high readings. The automatic readings are always higher. I know I would not trust my hearing to be good enough to take my B/P. It would seem others feel the sams as I do about haveing B/P readings being sometimes low and sometimes high. There is a poll on here that asks much the same question. I know with me my urine output is a lot more on some days then others. Since the amount of fluid you retain changes B/P then I would think this could be one of the reasons B/P changes. -- On Sat, 9/26/09, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re: lost informationhyperaldosteronism Date: Saturday, September 26, 2009, 1:36 PM I am not sure what you refer to as fluctuate. BP is never constant. Indeed it changes from heart beat to heart beat. 24 hr studies show that during sleep the systolic BP will go down to what the diastolic pressure is during the day in many. For example if your diastolic pressure is as high as 90 during some times of the day the sleep systolic will be lower than 90 at times. The task of blood pressure regualtion is to keep blood flow going at a constant rate to most organs of the body especially the brain. This flow must meet demand. Thus when you exercise BP goes up to get blood thru the muscles which are contracting. Eating, reading, speaking, thinking, watcing TV can induce swings in BP as well. This makes assessing what the BP "is" in a person a bit of a control systems problem. What one should do is to take the BP in a careful fashion, detailed in our files, close to the same time every day after being seated for at least 5 min. Take average of 3 or last 2 of 3 and that is the BP that should be used to guide your Dx and Rx of BP. Of course most Drs offices do not take BP correctly (3 x and seated 5 min in a straight backed chair (not with feet hanging down while sitting on the exam table). Using a mercury manometer (or other regularly calibrated device) and a stethoscope with the correct size cuff placed correctly on the arm and the arm supported so the center of the cuff is at heart level. Without controlling all these factos folks are over or under Dxed with HTN and over or under treated to their goal BP. So tell us how you and your Dr measure BP. Clarence Grim lowerbp2@... On Sep 25, 2009, at 5:55 PM, Bill wrote: I think we need to change the term difficult to control High blood pressure to uncontrol blood pressure. From what others post and what my blood pressure does Blood pressure isn't always high. At times it is very normal other times it is very high. I don't know if this because of uncontrolled Aldo/salt or that every one with high blood pressure has this happen. From: Valarie <val@...>Subject: RE: [hyperaldosteronism ] Re: lost informationhyperaldosteronismDate: Friday, September 25, 2009, 3:43 PM Is your name Francis Bill or Bill Francis? Time of day does matter with aldo. It follows a diurnal patter - highest in the morning and falling throughout the day. Val From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Francis Bill With me both aldo and renin are with range. This is because I believe the meds I take changed the test results. This sees to happen to a lot of Conn's people. It is probably the biggest reason Conn's goes undiagnosed for so long if at all. Time of day of blood draw change results. When the lab wants the draw to be done before 10:00AM and it is done at 3:00PM does this matter? Here is list of things that I think should be looked at as beings Conn's related. B/P readings that change from high to low. K that 3.8 or below. Meds that are given to increse K but only have little effect. Glucose that is 92 or higher with it being over the high of the range at times. Urine with low SP.GR. Fluid retention. At least one adnormal EKG. A CT that shows the adrenal adenoma. This is after you have ruled out CHF and ECG and stress test have ruled out heart related problems. >> Yes renin is low but aldo is not.> > If renin is very low and the system is working aldo will be low. If > it is not then aldo is driving the renin down. Well Aldo/salt.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 You should take your BP at the same time every day in the proper manner. When I was first exploring, I took mine four times/day, averaged them, and then kept a seven-day moving average. Now, I just take it at 5 p.m. because that was my highest when I was doing it four times a day. I still keep a seven-day moving average and that tends to smooth out fluctuations that may be caused by a little more salt or fluid. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bill I understand B/P changes depending on what you are doing. I have also questions the way blood perssure readings are done. I find that some that take my B/P seem to come up with low readings while others get high readings. The automatic readings are always higher. I know I would not trust my hearing to be good enough to take my B/P. It would seem others feel the sams as I do about haveing B/P readings being sometimes low and sometimes high. There is a poll on here that asks much the same question. I know with me my urine output is a lot more on some days then others. Since the amount of fluid you retain changes B/P then I would think this could be one of the reasons B/P changes. · 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 YOU need to keep tabs on intake of fluid and salt and output to try to see about the variations in urine output. May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Oct 4, 2009, at 10:13 PM, Valarie wrote: You should take your BP at the same time every day in the proper manner. When I was first exploring, I took mine four times/day, averaged them, and then kept a seven-day moving average. Now, I just take it at 5 p.m. because that was my highest when I was doing it four times a day. I still keep a seven-day moving average and that tends to smooth out fluctuations that may be caused by a little more salt or fluid. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bill I understand B/P changes depending on what you are doing. I have also questions the way blood perssure readings are done. I find that some that take my B/P seem to come up with low readings while others get high readings. The automatic readings are always higher. I know I would not trust my hearing to be good enough to take my B/P. It would seem others feel the sams as I do about haveing B/P readings being sometimes low and sometimes high. There is a poll on here that asks much the same question. I know with me my urine output is a lot more on some days then others. Since the amount of fluid you retain changes B/P then I would think this could be one of the reasons B/P changes. · 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 I am certain that both Dart and Harvard do teach about PA. The problem seems to be that either the Drs forget it or they did not go to that class. You could ask for their Endocrinology Curriculum to make sure they teach it.What has been taught is that it is rare and a usual Dr. will be lucky to see one case in his life. This of course is not correct as every 10th person with HTN likely has it. In various stages. See my article. The classic cases are but the tip of the iceberg.May your pressure be low!Clarence E. Grim, BS, MS, MDSpecializing in Primary Aldosteronism the most common cause of "Difficult/Drug Resistant High Blood Pressure". Other research interests focus on the interactions of recent evolutionary forces on the body's ability to handle salt and the effect of dietary salt on blood pressure in populations today.Listed in Best Doctors of America 2009. On Sep 27, 2009, at 1:03 PM, Francis Bill wrote: The bigger problem is that Medical schools like Harvard and Dartmouth fail to teach about Conn's. > > From: Valarie <val@...> > I think you need a trial of spironolactone to see what it does to your BP > and K. > The family practice doc I went to last year graduated from Harvard Medical. > She said she had never heard of Conn's. > Val > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Francis Bill > > Since they have failed that my low renin mid range aldo could be due to > Conn's and you seem to think it does. Someone is wrong and I don't think it > is you. > Quote Link to comment Share on other sites More sharing options...
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