Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: " We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment. " And so we look forward to meeting " the nicest guy in the world " -- especially after visiting with four local " ologists " . Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. Sent from my Palm Pre on the Now Network from Sprint How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 "do no harm" to patient was prior to 1970s...after that it is replaced with "do no harm" to insurance company! Max. What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 I know that Val has had a bad experience with Dr Young, but 'me' endo has kept in touch with him and now says he is her hero. I've been in her office while she has called his cell phone to ask questions about certain tests and he gets right back to her. So I must say that I have not had a bad experience. If at all possible stay off medications 6-8 weeks before your appt because they would most likely schedule an AVS during the five day appt. What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. Sent from my Palm Pre on the Now Network from Sprint How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Val: I was a bit behind in reading messages and only saw the "nicest guy in the world" comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a "focused consultation" on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed "no tumor". There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Farah: Thanks for your note. I think all holy heck would break loose if hubby did away with HTN meds (x3) and the six K+ horse pills which are still not bringing his K+ into range. We are fortunate enough to have an open end on our Mayo visit and could probably stay an extra week or maybe two. Other option is to fly back home, say hello to the cat, and go back. Been reading about AVS being a painful experience. Hubby has already survived Stage 2 prostate cancer (RALP - September 2009). Not sure we need to invite more that kind of excitement. I will be listening to Dr. Young very carefully and taking copious notes... To: "hyperaldosteronism " <hyperaldosteronism >Sent: Monday, July 11, 2011 12:01 AMSubject: Re: Re: Dr. Young @ Mayo I know that Val has had a bad experience with Dr Young, but 'me' endo has kept in touch with him and now says he is her hero. I've been in her office while she has called his cell phone to ask questions about certain tests and he gets right back to her. So I must say that I have not had a bad experience. If at all possible stay off medications 6-8 weeks before your appt because they would most likely schedule an AVS during the five day appt. What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. Sent from my Palm Pre on the Now Network from Sprint How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 What is epler not listed on drugs.com? CT can't DX PA. Only can be DX with blood and urine tests. > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 I have never questioned Dr. Young credentials. He is one of the authors of the international PA guidelines. I only related my horrible experience with him. My advice is for all women to take their husbands in with them. Mentioning Dr. Grim's name seemed to raise the hackles higher. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Farah Rahbar I know that Val has had a bad experience with Dr Young, but 'me' endo has kept in touch with him and now says he is her hero. I've been in her office while she has called his cell phone to ask questions about certain tests and he gets right back to her. So I must say that I have not had a bad experience. If at all possible stay off medications 6-8 weeks before your appt because they would most likely schedule an AVS during the five day appt.What the hell ever happened to trying to make the patient feel good? " do no harm " - as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: " We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment. " And so we look forward to meeting " the nicest guy in the world " -- especially after visiting with four local " ologists " . Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 A bit more searching and I did find epler or Eplerenone. Is not listed as a USDA approved drug to treat PA. It does work on PA but has to be RX as treating B/P or CHF. > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Insurance companies that pay for drugs are going to push for spiro. Sorio cost about $.35 a pill epler is over $2.00 a pill and you have to take twice as much. With spiro cost is about $10.50 a month this is less then some companies copay so they don't have to pay. With epler same treatment results will cost $120 a month so cost to insurance is going to be at least $90. > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 If the 600 members it this group were on epler insurance cost would be $54,000 a month. > > > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Hi there ~ "Eple"r is my shorthand for Eplerenone; you will note other references to the drug inside the forum. As far as diagnostic testing goes, we plan to let the Mayo expert recommend what's best. The doc asked the appointment maker that hubby's appt be on a day when the radiologist he routinely works with is also available. Cheers ~ k What is epler not listed on drugs.com? CT can't DX PA. Only can be DX with blood and urine tests. > > Val: I was a bit behind in reading messages and only saw the "nicest guy in the world" comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a "focused consultation" on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed "no tumor". There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Val: I appreciate the heads up... my hubby will be there because he is the patient. My role is to be an effective facilitator so we can take advantage of our great opportunity. This can be a difficult role for me; sometimes, I say too much. But I can't have my hubby sliding down the Santa Chute (like Ralphie at Christmas) without getting ALL of the related cards on the table and, hopefully, arriving at a game plan that works. Cheers ~ kTo: hyperaldosteronism Sent: Monday, July 11, 2011 8:00 AMSubject: RE: Re: Dr. Young @ Mayo I have never questioned Dr. Young credentials. He is one of the authors of the international PA guidelines. I only related my horrible experience with him. My advice is for all women to take their husbands in with them. Mentioning Dr. Grim's name seemed to raise the hackles higher. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Farah Rahbar I know that Val has had a bad experience with Dr Young, but 'me' endo has kept in touch with him and now says he is her hero. I've been in her office while she has called his cell phone to ask questions about certain tests and he gets right back to her. So I must say that I have not had a bad experience. If at all possible stay off medications 6-8 weeks before your appt because they would most likely schedule an AVS during the five day appt.On Jul 10, 2011, at 9:41 PM, " Bingham" wrote:What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 If medication turns out to be The Way, we'll choose the most effective with the fewest side effects and drug interactions. The other doc on our team is a respected cardiologist; I'm sure he will have no difficulty changing out 1 or more of the HTN meds already in the medicine cabinet. Main issue now is the below normal K+, which has been causing A Fib. The cardiologist cannot "fix" that problem until we follow the diagnostic trail to discover WHY the K+ is almost always off the bottom end of the scale. ~ k````````````Sent: Monday, July 11, 2011 8:31 AMSubject: Re: Dr. Young @ Mayo A bit more searching and I did find epler or Eplerenone. Is not listed as a USDA approved drug to treat PA. It does work on PA but has to be RX as treating B/P or CHF. > > > > Val: I was a bit behind in reading messages and only saw the "nicest guy in the world" comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a "focused consultation" on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed "no tumor". There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 My AVS experience at Mayo was not painful at all. In face I did the procedure at the hospital in the morning and went back to the hotel be the evenin- met the doc the following morning who reviewed the results and I was off to the airport the next day rolling my suitcase in the airport. I just had to take frequent rests the following few days to prevent blood clot and/or bleeding.Hope your husband's appointment goes well and he is off to an awesome diagnosis and recovery. Farah: Thanks for your note. I think all holy heck would break loose if hubby did away with HTN meds (x3) and the six K+ horse pills which are still not bringing his K+ into range. We are fortunate enough to have an open end on our Mayo visit and could probably stay an extra week or maybe two. Other option is to fly back home, say hello to the cat, and go back. Been reading about AVS being a painful experience. Hubby has already survived Stage 2 prostate cancer (RALP - September 2009). Not sure we need to invite more that kind of excitement. I will be listening to Dr. Young very carefully and taking copious notes... To: "hyperaldosteronism " <hyperaldosteronism >Sent: Monday, July 11, 2011 12:01 AMSubject: Re: Re: Dr. Young @ Mayo I know that Val has had a bad experience with Dr Young, but 'me' endo has kept in touch with him and now says he is her hero. I've been in her office while she has called his cell phone to ask questions about certain tests and he gets right back to her. So I must say that I have not had a bad experience. If at all possible stay off medications 6-8 weeks before your appt because they would most likely schedule an AVS during the five day appt. What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. Sent from my Palm Pre on the Now Network from Sprint How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 That's about the same as burying about 8 with no additional medicinal costs, what's your point! (Spoken like a real LIFE Insurance person, right! If they each had $250,000 that's $2m!) - 64 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank & testicle pain. I have decided against an adrenalectomy at this time since Meds. are working so well. Current BP: 130/77 Other Issues/Opportunities: COPD w/ft Oxygen, OSA w Bi-Pap settings 13/19, DM2. and PTSD Meds: Duloxetine hcl 80 MG, Mirtazapine 15 MG, Metoprolol Tartrate 200 MG, Metformin 2000MG, Lisinopril 2.5MG and Spironolactone 75 MG. > > > > > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 *Bless you* for passing along this encouraging information! I will send Dr. Young the med list in advance so he can take a peek. To avoid stroke (due to A Fib), the local cardiologist prescribed an anticoagulent a few months ago. Probably, that needs to be stopped in advance of AVS (if that is the route we choose.) Many thanks again! :-))) ~ k To: "hyperaldosteronism " <hyperaldosteronism >Sent: Monday, July 11, 2011 4:55 PMSubject: Re: Re: Dr. Young @ Mayo My AVS experience at Mayo was not painful at all. In face I did the procedure at the hospital in the morning and went back to the hotel be the evenin- met the doc the following morning who reviewed the results and I was off to the airport the next day rolling my suitcase in the airport. I just had to take frequent rests the following few days to prevent blood clot and/or bleeding.Hope your husband's appointment goes well and he is off to an awesome diagnosis and recovery. Farah: Thanks for your note. I think all holy heck would break loose if hubby did away with HTN meds (x3) and the six K+ horse pills which are still not bringing his K+ into range. We are fortunate enough to have an open end on our Mayo visit and could probably stay an extra week or maybe two. Other option is to fly back home, say hello to the cat, and go back. Been reading about AVS being a painful experience. Hubby has already survived Stage 2 prostate cancer (RALP - September 2009). Not sure we need to invite more that kind of excitement. I will be listening to Dr. Young very carefully and taking copious notes... To: "hyperaldosteronism " <hyperaldosteronism >Sent: Monday, July 11, 2011 12:01 AMSubject: Re: Re: Dr. Young @ Mayo I know that Val has had a bad experience with Dr Young, but 'me' endo has kept in touch with him and now says he is her hero. I've been in her office while she has called his cell phone to ask questions about certain tests and he gets right back to her. So I must say that I have not had a bad experience. If at all possible stay off medications 6-8 weeks before your appt because they would most likely schedule an AVS during the five day appt. What the hell ever happened to trying to make the patient feel good? "do no harm"- as the basic tenant of the hippocratic oath says, is becoming as obsolete as our constitution. Told you it's epidemic. Sent from my Palm Pre on the Now Network from Sprint How my visit with Dr. Young helped? Seriously?? Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 FWIW, my AVS was not a painful experience either - figured it would be worth mentioning since the negative stories out there far outnumber the positive ones. I slept through the entire procedure and was up and about the next day with no problems. > >> > >> > >>How my visit with Dr. Young helped? Seriously??  Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue. > >> > >>Val > >> > >>From:hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K > >> > >>Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: " We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment. " And so we look forward to meeting " the nicest guy in the world " -- especially after visiting with four local " ologists " . Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Thanks so much... trust me, that info is worth A LOT! Are you seeking info on Dr. Young? If, so, try Googling " Young Mayo" and you will arrive at his bio page, which has a link to his research. I am a current student so am able to access the academic databases. Feel free to email me directly for additional specs. BTW, we're not arriving in Rochester MN until July 17th but I've reserved a well-reviewed hotel (via tripadvisor.com) with shuttle service to Mayo. ~ k To: hyperaldosteronism Sent: Monday, July 11, 2011 6:14 PMSubject: Re: Dr. Young @ Mayo FWIW, my AVS was not a painful experience either - figured it would be worth mentioning since the negative stories out there far outnumber the positive ones. I slept through the entire procedure and was up and about the next day with no problems. > >>> >> > >>How my visit with Dr. Young helped? Seriously??  Dr. Young was extremely rude to me until I took my husband in with me the next day. He saw a letter from Dr. Grim and the ego pissing contest kicked in. He said I didn't have PA but wrote in my record that I do. I think he just could not admit to agreeing with one of the other experts in the world. When he said I didn't have PA, I brought up my other symptoms and tried to get his input. He said I came for a PA consult and that's all we'd talk about. As it turns out, my primary problem is Lyme disease. He didn't have a clue.> >> > >>Val> >> > >>From:hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of K K> >> > >>Val ~ As home team manager for my husband's investigation into (what we think is) PA, I found Dr. Young's research online. Not saying this works for everyone but when I wrote directly to Dr. Young I received a direct reply from him -- time stamped 7:30 p.m. on the same day. His advice: "We would be happy to do a focused evaluation for your husband. Call my appointment coordinator. And do not start Spiro or Epler prior to the appointment." And so we look forward to meeting "the nicest guy in the world" -- especially after visiting with four local "ologists". Hopes are high that the Mayo Man will effectively pinpoint the cause of hubby's problems with low K+, related A Fib, and fluctuating hypertension. Been DASHing for decades (now mostly to the potty.) Would love to hear more about your visit with Dr. Young and how it has helped. ~ > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 It is not me that is an insurance person. Many Dr have to play by insurance rules. My point Dr not likely to RX Eplerenone as a first choice drug and may not at all even though it has less side effects. Just as many vets get there RX from walmart as it only cost $4 at walmart but VA copay is $7. > > > > > > > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 It is safe to say many Dr's appreciate insurances as a steady source of income, but don't "like" insurances dictating or policing everything they do. Give and take - likely always be. Imagine if big brother government decides THEY get to make all the decisions about our health care. Subject: Re: Dr. Young @ MayoTo: hyperaldosteronism Date: Monday, July 11, 2011, 7:18 PM It is not me that is an insurance person. Many Dr have to play by insurance rules. My point Dr not likely to RX Eplerenone as a first choice drug and may not at all even though it has less side effects. Just as many vets get there RX from walmart as it only cost $4 at walmart but VA copay is $7. > > > > > >> > > > > > Val: I was a bit behind in reading messages and only saw the "nicest guy in the world" comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a "focused consultation" on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed "no tumor". There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 I would only use this info as exactly that and make me fight harder if I needed Eplerenone (which I may)! I take a pill that costs $5.45 each and the provider told me it would " take an act of congress " to get it approved in the VA system! So I only take 4 of them a day and they should be happy, I haven't " gone off " on them for a long time! (Well sort of, atleast it wasn't uncontrollable!) ;>) Hey, maybe that's Washington calling now! (Sorry, forgot we weren't going to get political!) - 64 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank & testicle pain. I have decided against an adrenalectomy at this time since Meds. are working so well. Current BP: 130/77 Other Issues/Opportunities: COPD w/ft Oxygen, OSA w Bi-Pap settings 13/19, DM2. and PTSD Meds: Duloxetine hcl 80 MG, Mirtazapine 15 MG, Metoprolol Tartrate 200 MG, Metformin 2000MG, Lisinopril 2.5MG and Spironolactone 75 MG. > > > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 What do you mean $7, I pay $8 (you missed 2 years!) > > > > > > > > > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Do you know drug Co have programs to help if you can't pay for the meds. > > > > > > > > > > Val: I was a bit behind in reading messages and only saw the " nicest guy in the world " comment -- at the time your husband accompanied you. I have had a bit of a tune-out problem with the local neph and so I do feel your your pain... Dr. Young promised us a " focused consultation " on July 20th. Therefore, we do not expect him to resolve all health issues at this initial adrenal disease meeting. We gave up on the local endo after 1.) he had not heard of epler for PA management and 2.) the CT-Abd -- not certain it was the fine collimation CT required for PA Dx -- revealed " no tumor " . There may also be a familial link lurking; father-in-law had similar issues with K+ and HTN; he finally succumbed to leukemia. And so we feel compelled to go with the #1 institution for endo along with the individual doing current research into this particular problem. Quote Link to comment Share on other sites More sharing options...
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