Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 I just checked the endo that kept me coming back for 8 months at $125 per visit and then decided that I did not have PA. He did med school and residency at Washington in DC and endocrinology fellowship at Henry Ford in Detroit. He presented my case at an endocrine meeting at Wm. Beaumont, which has an excellent reputation. I don't remember the exact numbers but the vote was something like 7-3 by 10 endocrinologists AGAINST me having PA. This was despite the facts that I had uncontrolled HPTN, bilateral adrenal adenomas on MR and unprovoked hypokalemia. The endocrinologist I went to 25 years ago has long since retired but I'm pretty sure he went to med school in the middle east. The PCP I was going to 25 years ago when my BP was first found to be high was concerned about it. She said there was a reason for a 210/112 reading in a 35 year old, it wasn't just garden variety hypertension. When she moved from the area the other docs just kept adding, increasing and changing BP meds throughout the years. It was only when my K+ became low that my current PCP said 'hmmm.' I was the one that bought up the possibility of PA to him and he then became convinced that was what I had. Honestly it's not that tough. I googled hypertension + hypokalemia and guess what came up? Anyway, it took a couple of trips to U-M for a diagnosis. Funny about the Bystolic. My doctor gave me a 3 week sample of it and I felt incredibly better on it, compared to the Toprol XL I usually take. I know BB's don't work well in PA but my BP was running about 6 points lower on it. I've been back on the Toprol for about 4 days now and the tired feeling is returning fast. I'm going to get some more of that stuff. a WOW - I had no idea. They did do a CT scan on me - but no AVS that I'm aware of anyway - not sure what test consists of. This kidney doc was on call when I went into the hospital. I have not checked around for any others - but have checked to see if there's any alternative treatment methods. RE: [hyperaldosteronism ] PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication-- too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 If you are also on spirot or inspra then BB, ACEs and ARBs may work better but not well studied.In your area I would recommend you go to see Dr. Steigerwalt a Nephrologist who has seen lots of PAs. I know here very well and she is a HTN specialist as well. She may be at Beaumont. Also there used to be a Dr. Lucas who did obesity but trained with me at the same time I was with Dr. Conn. CE Grim MDI just checked the endo that kept me coming back for 8 months at $125 per visit and then decided that I did not have PA. He did med school and residency at Washington in DC and endocrinology fellowship at Henry Ford in Detroit. He presented my case at an endocrine meeting at Wm. Beaumont, which has an excellent reputation. I don't remember the exact numbers but the vote was something like 7-3 by 10 endocrinologists AGAINST me having PA. This was despite the facts that I had uncontrolled HPTN, bilateral adrenal adenomas on MR and unprovoked hypokalemia. The endocrinologist I went to 25 years ago has long since retired but I'm pretty sure he went to med school in the middle east. The PCP I was going to 25 years ago when my BP was first found to be high was concerned about it. She said there was a reason for a 210/112 reading in a 35 year old, it wasn't just garden variety hypertension. When she moved from the area the other docs just kept adding, increasing and changing BP meds throughout the years. It was only when my K+ became low that my current PCP said 'hmmm.' I was the one that bought up the possibility of PA to him and he then became convinced that was what I had. Honestly it's not that tough. I googled hypertension + hypokalemia and guess what came up? Anyway, it took a couple of trips to U-M for a diagnosis. Funny about the Bystolic. My doctor gave me a 3 week sample of it and I felt incredibly better on it, compared to the Toprol XL I usually take. I know BB's don't work well in PA but my BP was running about 6 points lower on it. I've been back on the Toprol for about 4 days now and the tired feeling is returning fast. I'm going to get some more of that stuff. a WOW - I had no idea. They did do a CT scan on me - but no AVS that I'm aware of anyway - not sure what test consists of. This kidney doc was on call when I went into the hospital. I have not checked around for any others - but have checked to see if there's any alternative treatment methods. RE: [hyperaldosteronism ] PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication-- too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Gerald Ried - he's located at about 65th and Troost, KC,MO... RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Inspra will bring it under control in 1 month or so depending on dose etc.I was thinking you were under control on spiro but had side effects. I spiro worked the Inspra should work as well.Dose will be about 2 x as much tho.DASHing to the max will reduce your need for spiro or inspra or other BP meds.In PA, no Na but lots of K = No HTN.Question is can you get Na low enough?CE Grim MDmy kidney dr doesn't have the best bed side manner; not too personable - but he seems intelligent. my next appoint. is july 16. how long do you think it takes to get this under control. i'm currently unemployed and need to get a job... RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 yeah I know. Was spiro ever tried?If you are still not max controlled I would add this.Is Dr. Reams still in your area. I could not find his name in KC.I am frustrated. But they said since my potassium was not low and my aldosterone was not high they told me it wasn't PA. But Cozaar could affect both of those. Dr. Ream didn't think it was PA either. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 21:14:25 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City All HTN is Endocrine that I know of. Guess they don't understand what hormones are. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 7:16 PM, cowdocsbcglobal (DOT) net wrote: Good question! They say it is not endocrine related. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 18:53:45 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City What did they think is causing your Htn. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 5:42 PM, Kathy Dugan <dugie@....com> wrote: Dana, would you recommend your endocrinologist? If so, can I have his/her name? Re: PA's in Kansas City CT identifies bump(s). AVS tells you if you will be better for a long time if it comes out.Review my article on the evolution of PA and you may want to take to your team as well.We can help more if we have the complete story.CE Grim, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Good. then blocking the excess is the way to go. Spiro or Inspra and DASH.CE Grim MDthe excessive aldosterone I have...that's how I understand it anyway... RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 I have an HMO and it tells me the doctors I can see. I just started seeing a new endocrinologist but not for the PA, for thyroid and high HbA1C. She said my BP and K+ seemed to be under good control that that's all I need to worry about since I have bilateral disease. I've only seen her once but she has a very straight forward, no-nonsense approach and I like that. a WOW - I had no idea. They did do a CT scan on me - but no AVS that I'm aware of anyway - not sure what test consists of. This kidney doc was on call when I went into the hospital. I have not checked around for any others - but have checked to see if there's any alternative treatment methods. RE: [hyperaldosteronism ] PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication-- too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Sounds good. If body K is running low that can affect glucose and HbA1c. But that is her area of expertise.Again the DASH is the prefect anti HbA1c non-med approach. Set calories to be BMI below 25 then if that fails consider meds for HbA1c. As I recall they have reset the levels a bit higher to Dx DM recently.CE Grim MD I have an HMO and it tells me the doctors I can see. I just started seeing a new endocrinologist but not for the PA, for thyroid and high HbA1C. She said my BP and K+ seemed to be under good control that that's all I need to worry about since I have bilateral disease. I've only seen her once but she has a very straight forward, no-nonsense approach and I like that. aWOW - I had no idea. They did do a CT scan on me - but no AVS that I'm aware of anyway - not sure what test consists of. This kidney doc was on call when I went into the hospital. I have not checked around for any others - but have checked to see if there's any alternative treatment methods. RE: [hyperaldosteronism ] PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication-- too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010  When first given the 25mg spiro almost 2 months ago, my periods were screwed up. Now that's it's doubled to 50 mg/2x day, I've had no periods. No big deal - I can work with this. It's my BP that's still high. So, how low can you go for daily sodium a day?? RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 My K+ is stable, runs between 4 - 4.6 on 200 mg spiro daily. My HbA1c has been running 6.3 - 6.4 for the past 18 months or so, despite walking 2 miles 5x week and losing 10 pounds. Beside the fact the we PA's seem to be prone to metabolic syndrome, my father and his mother had IDDM. Endo said no goofing around with my family hx, I started on metformin 2 days ago. a WOW - I had no idea. They did do a CT scan on me - but no AVS that I'm aware of anyway - not sure what test consists of. This kidney doc was on call when I went into the hospital. I have not checked around for any others - but have checked to see if there's any alternative treatment methods. RE: [hyperaldosteronism ] PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication-- too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Dr reams is in Columbia. Sent from my Verizon Wireless BlackBerrySender: hyperaldosteronism Date: Tue, 22 Jun 2010 11:15:45 -0500To: <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City yeah I know. Was spiro ever tried?If you are still not max controlled I would add this.Is Dr. Reams still in your area. I could not find his name in KC.On Jun 21, 2010, at 9:21 PM, cowdocsbcglobal (DOT) net wrote:I am frustrated. But they said since my potassium was not low and my aldosterone was not high they told me it wasn't PA. But Cozaar could affect both of those. Dr. Ream didn't think it was PA either. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 21:14:25 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City All HTN is Endocrine that I know of. Guess they don't understand what hormones are. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 7:16 PM, cowdocsbcglobal (DOT) net wrote: Good question! They say it is not endocrine related. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 18:53:45 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City What did they think is causing your Htn. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 5:42 PM, Kathy Dugan <dugie@....com> wrote: Dana, would you recommend your endocrinologist? If so, can I have his/her name? Re: PA's in Kansas City CT identifies bump(s). AVS tells you if you will be better for a long time if it comes out.Review my article on the evolution of PA and you may want to take to your team as well.We can help more if we have the complete story.CE Grim, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 You need more spiro. esp if BP got a bit better and K got better. Some need up to 400 mg.CE Grim MDWhen first given the 25mg spiro almost 2 months ago, my periods were screwed up. Now that's it's doubled to 50 mg/2x day, I've had no periods. No big deal - I can work with this. It's my BP that's still high. So, how low can you go for daily sodium a day?? RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Good work.And what is his treatment goal for HbA1c? just to be sure.New ADA guidelines recommend above 6.5. to Dx DM and are satisfied if above 7 then getting it to 7 is good goal.Again Dr Conn won many awards for his diabetes research as well. Did your person graduate from MI?If your HbA1c did not come down much with exercise and wt loss my guess is that metformin may not do much either. But it has been a long time since I studied DM with Dr. Conn. And we couldnot measure HbA1c then. Did you have DM during pregnancy?Keep us posted. CE Grim MDMy K+ is stable, runs between 4 - 4.6 on 200 mg spiro daily. My HbA1c has been running 6.3 - 6.4 for the past 18 months or so, despite walking 2 miles 5x week and losing 10 pounds. Beside the fact the we PA's seem to be prone to metabolic syndrome, my father and his mother had IDDM. Endo said no goofing around with my family hx, I started on metformin 2 days ago. aWOW - I had no idea. They did do a CT scan on me - but no AVS that I'm aware of anyway - not sure what test consists of. This kidney doc was on call when I went into the hospital. I have not checked around for any others - but have checked to see if there's any alternative treatment methods. RE: [hyperaldosteronism ] PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication-- too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010  Well, K has dropped to 3.3 since leaving hospital almost 2 months ago. Next blood test is the week of July 16. RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 Sorry thought he was in KC. Thanks. CE Grim MDDr reams is in Columbia. Sent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Tue, 22 Jun 2010 11:15:45 -0500To: <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City yeah I know. Was spiro ever tried?If you are still not max controlled I would add this.Is Dr. Reams still in your area. I could not find his name in KC.On Jun 21, 2010, at 9:21 PM, cowdocsbcglobal (DOT) net wrote:I am frustrated. But they said since my potassium was not low and my aldosterone was not high they told me it wasn't PA. But Cozaar could affect both of those. Dr. Ream didn't think it was PA either. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 21:14:25 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City All HTN is Endocrine that I know of. Guess they don't understand what hormones are. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 7:16 PM, cowdocsbcglobal (DOT) net wrote: Good question! They say it is not endocrine related. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 18:53:45 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City What did they think is causing your Htn. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 5:42 PM, Kathy Dugan <dugie@....com> wrote: Dana, would you recommend your endocrinologist? If so, can I have his/her name? Re: PA's in Kansas City CT identifies bump(s). AVS tells you if you will be better for a long time if it comes out.Review my article on the evolution of PA and you may want to take to your team as well.We can help more if we have the complete story.CE Grim, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 You need more sprio then a blood test in July.When was K checked?Again you can never give us too many details. Also saves my time in having to ask for details.CE Grim MDWell, K has dropped to 3.3 since leaving hospital almost 2 months ago. Next blood test is the week of July 16. RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010  Last time K checked was June 9. I was celebrating my b-day out of town and doc's office called to say it was down and to increase my Klor-Con to 2 tablets/day. Following week (6/18), went to kidney dr - BP was up to 150/104 so he increased Spiro to 50 mg/2 x day and Lisinopril to 20 mg/day... RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 You need to remind him that lisinopril will not work in PA unless you are on enough spiro.or better yet DASHingCE Grim MDLast time K checked was June 9. I was celebrating my b-day out of town and doc's office called to say it was down and to increase my Klor-Con to 2 tablets/day. Following week (6/18), went to kidney dr - BP was up to 150/104 so he increased Spiro to 50 mg/2 x day and Lisinopril to 20 mg/day... RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling.ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message -----From: Valarie How were you diagnosed bilateral? Did you have AVS?ValFrom: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward!Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010  Will do. Wish you could be my doc! RE: PA's in Kansas City Then you may have primary aldosteronism, but there is no way he can tell if it is unilateral or bilateral without adrenal vein sampling. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kathy Dugan Not familiar with all the acronyms, but no AVS if that means something to do with the vein. All I received were blood tests in the hospital. Doc said I have way over abundance of aldosterone in the blood. ----- Original Message ----- From: Valarie How were you diagnosed bilateral? Did you have AVS? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dugie1960 I'm new to this group. Does anyone know of a good PA doc in the Kansas City area. I've been diagnosed with PA-bilateral adrenal hyperplasia. My BP has been very high the last 5 years. Was recently hospitalized for extremely low potassium level (1.5). I'm on a lot of medication--too much as far as I'm concerned. Also, are there any alternative methods for healing this condition? Thanks for any information you can forward! Reply to sender | Reply to group | Reply via web post | Start a New TopicMessages in this topic (29 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2010 Report Share Posted June 22, 2010 No spiro was never tried they didn't think it was PA. I have started having chest pains. I had a CT angiogram done which looked ok but still think it might either be vasospam or esophageal issues. Going to have esophageal study done to rule that in or out. DanaSent from my Verizon Wireless BlackBerrySender: hyperaldosteronism Date: Tue, 22 Jun 2010 11:15:45 -0500To: <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City yeah I know. Was spiro ever tried?If you are still not max controlled I would add this.Is Dr. Reams still in your area. I could not find his name in KC.On Jun 21, 2010, at 9:21 PM, cowdocsbcglobal (DOT) net wrote:I am frustrated. But they said since my potassium was not low and my aldosterone was not high they told me it wasn't PA. But Cozaar could affect both of those. Dr. Ream didn't think it was PA either. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 21:14:25 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City All HTN is Endocrine that I know of. Guess they don't understand what hormones are. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 7:16 PM, cowdocsbcglobal (DOT) net wrote: Good question! They say it is not endocrine related. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 18:53:45 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City What did they think is causing your Htn. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 5:42 PM, Kathy Dugan <dugie@....com> wrote: Dana, would you recommend your endocrinologist? If so, can I have his/her name? Re: PA's in Kansas City CT identifies bump(s). AVS tells you if you will be better for a long time if it comes out.Review my article on the evolution of PA and you may want to take to your team as well.We can help more if we have the complete story.CE Grim, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Spiro works for many with HTN without PA.So if your BP is having a problem and you did not quite make PA then it is also worth a trial. If other drugs and DASHing are not working. CE Grim MDNo spiro was never tried they didn't think it was PA. I have started having chest pains. I had a CT angiogram done which looked ok but still think it might either be vasospam or esophageal issues. Going to have esophageal study done to rule that in or out. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Tue, 22 Jun 2010 11:15:45 -0500To: <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City yeah I know. Was spiro ever tried?If you are still not max controlled I would add this.Is Dr. Reams still in your area. I could not find his name in KC.On Jun 21, 2010, at 9:21 PM, cowdocsbcglobal (DOT) net wrote:I am frustrated. But they said since my potassium was not low and my aldosterone was not high they told me it wasn't PA. But Cozaar could affect both of those. Dr. Ream didn't think it was PA either. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 21:14:25 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City All HTN is Endocrine that I know of. Guess they don't understand what hormones are. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 7:16 PM, cowdocsbcglobal (DOT) net wrote: Good question! They say it is not endocrine related. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 18:53:45 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City What did they think is causing your Htn. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 5:42 PM, Kathy Dugan <dugie@....com> wrote: Dana, would you recommend your endocrinologist? If so, can I have his/her name? Re: PA's in Kansas City CT identifies bump(s). AVS tells you if you will be better for a long time if it comes out.Review my article on the evolution of PA and you may want to take to your team as well.We can help more if we have the complete story.CE Grim, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Spiro works for many with HTN without PA.So if your BP is having a problem and you did not quite make PA then it is also worth a trial. If other drugs and DASHing are not working. CE Grim MDNo spiro was never tried they didn't think it was PA. I have started having chest pains. I had a CT angiogram done which looked ok but still think it might either be vasospam or esophageal issues. Going to have esophageal study done to rule that in or out. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Tue, 22 Jun 2010 11:15:45 -0500To: <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City yeah I know. Was spiro ever tried?If you are still not max controlled I would add this.Is Dr. Reams still in your area. I could not find his name in KC.On Jun 21, 2010, at 9:21 PM, cowdocsbcglobal (DOT) net wrote:I am frustrated. But they said since my potassium was not low and my aldosterone was not high they told me it wasn't PA. But Cozaar could affect both of those. Dr. Ream didn't think it was PA either. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 21:14:25 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City All HTN is Endocrine that I know of. Guess they don't understand what hormones are. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 7:16 PM, cowdocsbcglobal (DOT) net wrote: Good question! They say it is not endocrine related. DanaSent from my Verizon Wireless BlackBerryFrom: Clarence Grim <lowerbp2mac>Sender: hyperaldosteronism Date: Mon, 21 Jun 2010 18:53:45 -0500To: hyperaldosteronism <hyperaldosteronism >ReplyTo: hyperaldosteronism Subject: Re: PA's in Kansas City What did they think is causing your Htn. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jun 21, 2010, at 5:42 PM, Kathy Dugan <dugie@....com> wrote: Dana, would you recommend your endocrinologist? If so, can I have his/her name? Re: PA's in Kansas City CT identifies bump(s). AVS tells you if you will be better for a long time if it comes out.Review my article on the evolution of PA and you may want to take to your team as well.We can help more if we have the complete story.CE Grim, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 a, I was born and raised in Ann Arbor, live in Pinckney now. Where are you? > > > >> > >> WOW - I had no idea. They did do a CT scan on me - but no AVS that > >> I'm aware of anyway - not sure what test consists of. This kidney > >> doc was on call when I went into the hospital. I have not checked > >> around for any others - but have checked to see if there's any > >> alternative treatment methods. > >> RE: [hyperaldosteronism ] PA's in Kansas City > >> > >> > >> > >> Then you may have primary aldosteronism, but there is no way he can > >> tell if it is unilateral or bilateral without adrenal vein sampling. > >> > >> > >> Val > >> > >> > >> > >> From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism > >> ] On Behalf Of Kathy Dugan > >> > >> > >> Not familiar with all the acronyms, but no AVS if that means > >> something to do with the vein. All I received were blood tests in > >> the hospital. Doc said I have way over abundance of aldosterone in > >> the blood. > >> > >> ----- Original Message ----- > >> > >> From: Valarie > >> > >> > > > > How were you diagnosed bilateral? Did you have AVS? > > > > Val > > > > From: hyperaldosteronism@ yahoogroups. com [mailto:hyperaldost eronism > > ] On Behalf Of dugie1960 > > > > > > I'm new to this group. Does anyone know of a good PA doc in the > > Kansas City area. I've been diagnosed with PA-bilateral adrenal > > hyperplasia. My BP has been very high the last 5 years. Was recently > > hospitalized for extremely low potassium level (1.5). I'm on a lot > > of medication-- too much as far as I'm concerned. Also, are there > > any alternative methods for healing this condition? Thanks for any > > information you can forward! > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New > > Topic > > Messages in this topic (29 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 I'm in Waterford, about an hour north east of Ann Arbor. a > > Subject: Re: PA's in Kansas City > To: hyperaldosteronism > Date: Wednesday, June 23, 2010, 11:41 AM > a, I was born and raised in Ann > Arbor, live in Pinckney now. Where are you? > > > > > > >> > > >> WOW - I had no idea. They did do a CT > scan on me - but no AVS that > > >> I'm aware of anyway - not sure what test > consists of. This kidney > > >> doc was on call when I went into the > hospital. I have not checked > > >> around for any others - but have checked to > see if there's any > > >> alternative treatment methods. > > >> RE: [hyperaldosteronism ] PA's in > Kansas City > > >> > > >> > > >> > > >> Then you may have primary aldosteronism, but > there is no way he can > > >> tell if it is unilateral or bilateral without > adrenal vein sampling. > > >> > > >> > > >> Val > > >> > > >> > > >> > > >> From: hyperaldosteronism@ yahoogroups. com > [mailto:hyperaldost eronism > > > >> ] On Behalf Of Kathy Dugan > > >> > > >> > > >> Not familiar with all the acronyms, but no > AVS if that means > > >> something to do with the vein. All I > received were blood tests in > > >> the hospital. Doc said I have way over > abundance of aldosterone in > > >> the blood. > > >> > > >> ----- Original Message ----- > > >> > > >> From: Valarie > > >> > > >> > > > > > >   How were you diagnosed > bilateral? Did you have AVS? > > > > > > Val > > > > > > From: hyperaldosteronism@ yahoogroups. com > [mailto:hyperaldost eronism > > > > ] On Behalf Of dugie1960 > > > > > > > > > I'm new to this group. Does anyone know of > a good PA doc in the > > > Kansas City area. I've been diagnosed with > PA-bilateral adrenal > > > hyperplasia. My BP has been very high the last 5 > years. Was recently > > > hospitalized for extremely low potassium level > (1.5). I'm on a lot > > > of medication-- too much as far as I'm concerned. > Also, are there > > > any alternative methods for healing this > condition? Thanks for any > > > information you can forward! > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web > post | Start a New > > > Topic > > > Messages in this topic (29 > > > > > > > > > > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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