Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Can't emphasize enough, stick up for yourself. We decided to econimize one yr and switched to a managing care policy. The wife has Fibromyalger and an excellent provider at DHMC. I checked in advance and they said it it would be no problem (this is a large provider that is quite Blue!) You guessed it, when it came time for an appt. they said she had to see a provider that was " in system " ! After a couple of calls and promising we would change " within a year " we were on our way to DHMC! We did as promised, changed insurance companies when " Open Enrollment " came around in the fall! Some day I may do a story on how to get your way for our file but I have other " fish to fry " tonight. (Actually I may teat my abilities to the fullest with this proect!) - 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. This forum is a blessing as I am learning how > hubby's symptoms may be linked to PA. > > > > > > > Val, I am sorry you had a bad experience but also glad you finally got to the bottom of your issue. Kind regards,  > > > > > > > > > > > > > > > > > > > > > From: Valarie <val@> > > > > > > > To: hyperaldosteronism > > > > > > > Sent: Sunday, July 10, 2011 11:31 PM > > > > > > > Subject: RE: Re: Dr. Young @ Mayo > > > > > > > > > > > > > > > > > > > > >  > > > > > > > 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 You are right. I do not get enough income to have pay any VA copays. Not by choice but since the so far they hasn't DX me they can not get me well enough to work. > > > > > > > > > > > > > > > > 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 But I can pay for them, that's why the VA charges me $8 per! (I just don't want to!) > > > > > > > > > > > > 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 had the same problem about working. Now that they have me well enough to work, they can't get my YOUNG enough! > > > > > > > > > > > > > > > > > > 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 12, 2011 Report Share Posted July 12, 2011 I have publishe 2 articles at least on familial PA.Have you read my evolution article yet so you can tell Dr Young what stage your hubby is in?CE Grim MDVal: 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 12, 2011 Report Share Posted July 12, 2011 I have publishe 2 articles at least on familial PA.Have you read my evolution article yet so you can tell Dr Young what stage your hubby is in?CE Grim MDVal: 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 12, 2011 Report Share Posted July 12, 2011 BTW I am also a consultant for any pt and their team for an annual fee. Gets you virtually 24/7 access to my expertise by email or tele or iChatCE Grim MDI 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 13, 2011 Report Share Posted July 13, 2011 Dr. Grim: Thanks for your note. Your Evolution paper is on our laptop -- Stage 4 seems to fit... Dr. Young has reviewed meds and supplements and has advised we get in touch with the local cardiologist to discuss pro's and con's of discontinuing Pradaxa prior to possible AVS at Mayo. Re: Familial PA... Now I am not sure if the shoe fits or not. We know dad had severe HTN, issues with K+ AND a particular liking for licorice. We think the licorice use ceased after a local doc advised against it. ~ k From: Clarence Grim <lowerbp2@...To: hyperaldosteronism Sent: Tuesday, July 12, 2011 1:39 AMSubject: Re: Re: Dr. Young @ Mayo I have published 2 articles at least on familial PA.Have you read my evolution article yet so you can tell Dr Young what stage your hubby is in?CE Grim MDVal: 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 13, 2011 Report Share Posted July 13, 2011 And I trust u are not eating any?Need your renin and Aldo numbers. If one CT did not show bump then no need to repeat. Need your complete story to helpTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Dr. Grim: Thanks for your note. Your Evolution paper is on our laptop -- Stage 4 seems to fit... Dr. Young has reviewed meds and supplements and has advised we get in touch with the local cardiologist to discuss pro's and con's of discontinuing Pradaxa prior to possible AVS at Mayo. Re: Familial PA... Now I am not sure if the shoe fits or not. We know dad had severe HTN, issues with K+ AND a particular liking for licorice. We think the licorice use ceased after a local doc advised against it. ~ k From: Clarence Grim <lowerbp2@...To: hyperaldosteronism Sent: Tuesday, July 12, 2011 1:39 AMSubject: Re: Re: Dr. Young @ Mayo I have published 2 articles at least on familial PA.Have you read my evolution article yet so you can tell Dr Young what stage your hubby is in?CE Grim MDVal: 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 13, 2011 Report Share Posted July 13, 2011 We've been DASHing for decades... A Fib discovered 8/25/2009 during (RALP) pre-op cardiology appt. Never a dull moment... We're currently at a convention in Colorado at 10,000+ feet. Been taking it *very* easy...Sent: Tuesday, July 12, 2011 1:49 AMSubject: Re: Re: Dr. Young @ Mayo DASHING and MCBs will fix low K and hopefully A Fib .How long has he had A Fib?CE Grim MDIf 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 18, 2011 Report Share Posted July 18, 2011 Be sure to update us on how it goes! Good luck to you. I have a decision to make on where to do my AVS. I can go to Wash U here in St. Louis or to Mayo. My concern with Mayo was recovering from AVS and traveling after. I was also assuming that it would be best for the facility doing the AVS to also do the surgery. I'm curious as to how soon after AVS Mayo would do the surgery on someone. When I visited Mayo, the endocrinology department agreed with Dr. Grim and only recommended AVS in rare cases (not sure of reasons) and when the meds would either not control blood pressure or K. My endo there is Dr. who is the department chair. He consulted Dr.Young when I was diagnosed and they decided against AVS at that time. > > >> > > >> > > >>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...
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