Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 where are you ita? I am a Lay Advocate for People With Disabilities and would like to try to help. arthur On Apr 21, 2009, at 12:24 AM, meling333 wrote: > > > Hi Arthur > That is exactly what I have. And no Endos except a very few will even > take it, as Callifornia is known for not paying its bills. So I am > looking at Cash now as it is my last resort and even that probably > wont work. Maybe I am now ammuned to the spiro. I really do feel like > a time bomb since nothing seems to be working any more. ita > > > > > > > > > > ita, I so feel for you. It seems there is nothing any of us > can > > > suggest > > > > to you. Is there any way you could go to Mayo or University of > > > Michigan? > > > > > > > > Val > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of > meling333 > > > > > > > > > > > > Hello > > > > My eyes are misserable again since I had to cut my thyroid > medicine. > > > > I am now back to 50mcg from 62mcg. 12 mcg sure did make a > > > difference. > > > > Present drugs are spiro 150mg twice a day > > > > 5mg Benazpril daily > > > > 2/12 mg norvasic daily > > > > 50mcg synthroid daily > > > > 10/10 vitorin daily > > > > Atenolol 50mg daily > > > > AVS in 06, punctured my vein, no samples. 07 You refered me to a > > > dr. at San > > > > Francisco GEneral. He would not even see me and said I would be > > > making a > > > > wasted trip. Typical Endo Response. 07 Then you referred me to a > > > real nice > > > > Dr. in Sacramento but he was retired. Since then I have seen two > > > incompedent > > > > Endos at UCD in Sac.July 08 the latest One told me to stop > taking > > > atenolol, > > > > benazpril, and norvasic when I told him things has taken a turn > for > > > the > > > > worse.I was so hypothyroid,and low on B12 it was not funnny. I > > > found this > > > > out 3 months later after requesting labs at Primary care. Do you > > > see how > > > > hopeless it is out here? They want me to stop taking Spiro and > do > > > AVS which > > > > I know would probably kill me. ita > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 If you cannot go off spiro to have AVS, cannot afford to go to U of Michigan, and are doing as poorly as you say, why don't you just get that adrenal removed? What do your doctors say about your high norepinephrine and high normetanephrine? Have you been thoroughly checked out for pheo? Do you have copies of doctors' reports? What do they say? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333 My K is 4.2 what drugs do work for Conn's I got these out of your drug lists in the files? The atenolol keeps my heart beat normal without it I am well over a 100 beats a minute 24/ 7.The Benerzapril gets rid of the heart attack tight feeling i have in my chest. I also have elevated normetanephrine by 1 or 2 hundered over range all the time.I have had norepeniphrine in the 900 once befor i went on Benezapril. I think I also suffer from a possible Pheo. I am such a mess. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 I would also recommend they to catechols during the AVS on her.CE Grim MDOn Apr 20, 2009, at 11:41 PM, Valarie wrote:If you cannot go off spiro to have AVS, cannot afford to go to U of Michigan, and are doing as poorly as you say, why don't you just get that adrenal removed? What do your doctors say about your high norepinephrine and high normetanephrine? Have you been thoroughly checked out for pheo? Do you have copies of doctors' reports? What do they say? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333My K is 4.2 what drugs do work for Conn's I got these out of your drug lists in the files? The atenolol keeps my heart beat normal without it I am well over a 100 beats a minute 24/ 7.The Benerzapril gets rid of the heart attack tight feeling i have in my chest. I also have elevated normetanephrine by 1 or 2 hundered over range all the time.I have had norepeniphrine in the 900 once befor i went on Benezapril. I think I also suffer from a possible Pheo. I am such a mess. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 ita, how old are you? What kind of insurance do you have? So you have children or other family that can help? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333 I doubt it money is a major problem. Since I got sick in 06 my life has deteorated I dont even have a credit card and need to file bankruptcy but I can even afford to do that. ita -- In hyperaldosteronism , " Valarie " <val@...> wrote: > > ita, I so feel for you. It seems there is nothing any of us can suggest > to you. Is there any way you could go to Mayo or University of Michigan? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 She can't get AVS without going off spiro and can't go off spiro. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim I would also recommend they do catechols during the AVS on her. On Apr 20, 2009, at 11:41 PM, Valarie wrote: If you cannot go off spiro to have AVS, cannot afford to go to U of Michigan, and are doing as poorly as you say, why don't you just get that adrenal removed? What do your doctors say about your high norepinephrine and high normetanephrine? Have you been thoroughly checked out for pheo? Do you have copies of doctors' reports? What do they say? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333 My K is 4.2 what drugs do work for Conn's I got these out of your drug lists in the files? The atenolol keeps my heart beat normal without it I am well over a 100 beats a minute 24/ 7.The Benerzapril gets rid of the heart attack tight feeling i have in my chest. I also have elevated normetanephrine by 1 or 2 hundered over range all the time.I have had norepeniphrine in the 900 once befor i went on Benezapril. I think I also suffer from a possible Pheo. I am such a mess. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 ita I have been on spironolactone for almost 16 months. Sue From: meling333 <meling333@...>hyperaldosteronism Sent: Tuesday, 21 April, 2009 2:08:44 PMSubject: Re: No hope SueI been on spiro diagnosed in 06, What do you take for Conn'sita> > >> > > Dr. GRim> > > I have been waiting and hoping since 06 to see you. It has taken me years to save 500.oo $ it is now 09 and I am so much worse. REducing my thyroid medicine due to adverse reactions of Conn's is now taking its tole on me, My eyes are so painfull and the other symptions will be comming on soon. There really no hope for me. ita> > >> >> > > > > > Get the world & #39;s best email - http://nz.mail. /> Get the world's best email - Xtra Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 One of our folks here has been on it for 30 years. Clarence E. Grim, BS, MS, MD On Wednesday, April 22, 2009, at 02:46AM, " marysue hopper " <marysuehopper@...> wrote: >ita I have been on spironolactone for almost 16 months. > > Sue > > > > >________________________________ >From: meling333 <meling333@...> >hyperaldosteronism >Sent: Tuesday, 21 April, 2009 2:08:44 PM >Subject: Re: No hope > > > > > > Sue >I been on spiro diagnosed in 06, What do you take for Conn's >ita > > >> > > >> > > Dr. GRim >> > > I have been waiting and hoping since 06 to see you. It has taken me years to save 500.oo $ it is now 09 and I am so much worse. REducing my thyroid medicine due to adverse reactions of Conn's is now taking its tole on me, My eyes are so painfull and the other symptions will be comming on soon. There really no hope for me. ita >> > > >> > >> >> >> >> >> >> Get the world & #39;s best email - http://nz.mail. / >> > > > > > > Get the world & #39;s best email - http://nz.mail./ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Well Dr. GRim that just proves there is no one size that fits all when treating Conn's. I take spiro, benazpril, atenolol,and norvasic I have tried numerous times to stop atenolol by cutting back slowly but every time I end up with rapad heart beat over 100 or more, 24/7, so I dont fool with that one much any more. Benazapril I have tried to stop it befor and I end up with a constricted chest feeling like a boa constrictor has a grip on me with a feeling of a heart attack comming on. The norvasic I am not sure what it does its probably psychologicaly makes be feel better. But I ended up on more drugs after months on spiro I was'nt feeling that well on spiro. I have taken so much spiro in the past that I could barely stand up for 2 days. There is just no one size that fits all. ita > >> > > > >> > > Dr. GRim > >> > > I have been waiting and hoping since 06 to see you. It has taken me years to save 500.oo $ it is now 09 and I am so much worse. REducing my thyroid medicine due to adverse reactions of Conn's is now taking its tole on me, My eyes are so painfull and the other symptions will be comming on soon. There really no hope for me. ita > >> > > > >> > > >> > >> > >> > >> > >> > >> Get the world & #39;s best email - http://nz.mail. / > >> > > > > > > > > > > > > Get the world & #39;s best email - http://nz.mail./ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 If spiro works AND you are also taking benzaz, aten and norvasc the bottom will drop out of your BP. That sounds to me like what happened when you could " barely stand up for 2 days " . I generally stop or taper these when I begin adding spiro. My max with spiro is 400/d but others have given more. Norvasc certainly makes feet swell but benaz should block this. This is also available in combo pill that used to be called Lotrel.. Clarence E. Grim, BS, MS, MD On Wednesday, April 22, 2009, at 10:26AM, " meling333 " <meling333@...> wrote: >Well Dr. GRim that just proves there is no one size that fits all when treating Conn's. I take spiro, benazpril, atenolol,and norvasic >I have tried numerous times to stop atenolol by cutting back slowly but every time I end up with rapad heart beat over 100 or more, 24/7, so I dont fool with that one much any more. Benazapril I have tried to stop it befor and I end up with a constricted chest feeling like a boa constrictor has a grip on me with a feeling of a heart attack comming on. The norvasic I am not sure what it does its probably psychologicaly makes be feel better. But I ended up on more drugs after months on spiro I was'nt feeling that well on spiro. I have taken so much spiro in the past that I could barely stand up for 2 days. There is just no one size that fits all. ita > > > > > > >> >> > > >> >> > > Dr. GRim >> >> > > I have been waiting and hoping since 06 to see you. It has taken me years to save 500.oo $ it is now 09 and I am so much worse. REducing my thyroid medicine due to adverse reactions of Conn's is now taking its tole on me, My eyes are so painfull and the other symptions will be comming on soon. There really no hope for me. ita >> >> > > >> >> > >> >> >> >> >> >> >> >> >> >> >> >> Get the world & #39;s best email - http://nz.mail. / >> >> >> > >> > >> > >> > >> > >> > Get the world & #39;s best email - http://nz.mail./ >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 When I could not stand up was when I got a different new brand of spiro and I took the same amount as the old pills that were no good. My bottom diastolic is the high one with me. Normally i am 109/68 but can go up when I am up and standing. ita > >> >> > > > >> >> > > Dr. GRim > >> >> > > I have been waiting and hoping since 06 to see you. It has taken me years to save 500.oo $ it is now 09 and I am so much worse. REducing my thyroid medicine due to adverse reactions of Conn's is now taking its tole on me, My eyes are so painfull and the other symptions will be comming on soon. There really no hope for me. ita > >> >> > > > >> >> > > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> Get the world & #39;s best email - http://nz.mail. / > >> >> > >> > > >> > > >> > > >> > > >> > > >> > Get the world & #39;s best email - http://nz.mail./ > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Mine is always above range on creatinine the endo in sac says it is ok. When I asked him to test my aldo he said " its not necessary we know it is messed up " . I know T3 is much harder on conn's people. I used to take it and the same thing happened to me as you. Also low T4 can result in low B12. JUanita > > ita, I would suggest you keep an eye on your creatinine. When I was on > 150 mg spiro, mine got to the top of the range. When I dropped back to 100 > mg, creatinine came down. My science dummy brain thinks there was a > connection but I don't know. > > I've been thinking a lot about your thyroid meds and your dose of spiro. T4 > is supposed to convert to T3, as needed. I think, somehow, T3 may drop K. > Every time I tried to take a tiny bit of T3, my K would plunge, I swelled up > and BP shot up. I think my low FT3 is my body's way of mitigating the > effects of low K. Does that make sense? And, as a result, since T3 is the > active hormone that controls metabolism, low T3 may contribute to excess > weight. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of meling333 > > > We really are treated like drug addicts over spiro. I have just filed afor a > state hearing over them taking 3 weeks for my spiro. I am better since I > upped it again. I have upped it 5 times by 12 mg incriments much in the last > 4 months all because I raised my thyroid med trying to get away from being > hypoT. Thank you for the offer on spiro and your patience. I sure hope it > does not come to that but you never know. Your so kind. ita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 If it was too much spiro + other meds then BP would have been lower standing that lying or sitting-mostly. Clarence E. Grim, BS, MS, MD On Wednesday, April 22, 2009, at 02:56PM, " meling333 " <meling333@...> wrote: >When I could not stand up was when I got a different new brand of spiro and I took the same amount as the old pills that were no good. >My bottom diastolic is the high one with me. Normally i am 109/68 >but can go up when I am up and standing. ita > > > > >> >> >> > > >> >> >> > > Dr. GRim >> >> >> > > I have been waiting and hoping since 06 to see you. It has taken me years to save 500.oo $ it is now 09 and I am so much worse. REducing my thyroid medicine due to adverse reactions of Conn's is now taking its tole on me, My eyes are so painfull and the other symptions will be comming on soon. There really no hope for me. ita >> >> >> > > >> >> >> > >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> Get the world & #39;s best email - http://nz.mail. / >> >> >> >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > Get the world & #39;s best email - http://nz.mail./ >> >> >> > >> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Dear ita, my heart goes out to you, it really seems like you are having a tough time. I just wanted to mention that my metenaphrines are always elevated, in the thousands. With me it is the norepenphrine and dopamine that are elevated, the epinephrine is normal. While I think you should definately be tested for pheo, my doc told me that pheo usually cause the mets to be in the tens of thousands, not thousands. Now, I have been thouroughly scanned for a tumor and it has not been found so they think the execess mets are from either my nerve endings or adrenals. They really make you feel like crap. I have been vomiting and fainting and they think because of these, just recently I have been better and they are attributing it to the clonidine patch. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Dr. Grim, is there any known connection between high doses of Spiro and kidney problems? After being on 300 mg day (split) for a year my kidneys started to go bad, my creatinine kept getting higher and higher, then I ended up in hospital with acute kidney failure. My kidneys have recovered but I have not been on spiro since cuz the docs thought it was attributing to my 'low volume' troubles and vomiting... Kim > > ita, I would suggest you keep an eye on your creatinine. When I was on > 150 mg spiro, mine got to the top of the range. When I dropped back to 100 > mg, creatinine came down. My science dummy brain thinks there was a > connection but I don't know. > > I've been thinking a lot about your thyroid meds and your dose of spiro. T4 > is supposed to convert to T3, as needed. I think, somehow, T3 may drop K. > Every time I tried to take a tiny bit of T3, my K would plunge, I swelled up > and BP shot up. I think my low FT3 is my body's way of mitigating the > effects of low K. Does that make sense? And, as a result, since T3 is the > active hormone that controls metabolism, low T3 may contribute to excess > weight. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of meling333 > > > We really are treated like drug addicts over spiro. I have just filed afor a > state hearing over them taking 3 weeks for my spiro. I am better since I > upped it again. I have upped it 5 times by 12 mg incriments much in the last > 4 months all because I raised my thyroid med trying to get away from being > hypoT. Thank you for the offer on spiro and your patience. I sure hope it > does not come to that but you never know. Your so kind. ita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 so feeling better is because of the patch? or are swings in BP due to patch? Clarence E. Grim, BS, MS, MD On Thursday, April 23, 2009, at 07:54AM, " kimsstay " <kimshannons@...> wrote: >Dear ita, my heart goes out to you, it really seems like you are having a tough time. I just wanted to mention that my metenaphrines are always elevated, in the thousands. With me it is the norepenphrine and dopamine that are elevated, the epinephrine is normal. While I think you should definately be tested for pheo, my doc told me that pheo usually cause the mets to be in the tens of thousands, not thousands. Now, I have been thouroughly scanned for a tumor and it has not been found so they think the execess mets are from either my nerve endings or adrenals. They really make you feel like crap. I have been vomiting and fainting and they think because of these, just recently I have been better and they are attributing it to the clonidine patch. > >Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 so feeling better is because of the patch? or are swings in BP due to patch? Clarence E. Grim, BS, MS, MD On Thursday, April 23, 2009, at 07:54AM, " kimsstay " <kimshannons@...> wrote: >Dear ita, my heart goes out to you, it really seems like you are having a tough time. I just wanted to mention that my metenaphrines are always elevated, in the thousands. With me it is the norepenphrine and dopamine that are elevated, the epinephrine is normal. While I think you should definately be tested for pheo, my doc told me that pheo usually cause the mets to be in the tens of thousands, not thousands. Now, I have been thouroughly scanned for a tumor and it has not been found so they think the execess mets are from either my nerve endings or adrenals. They really make you feel like crap. I have been vomiting and fainting and they think because of these, just recently I have been better and they are attributing it to the clonidine patch. > >Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 so feeling better is because of the patch? or are swings in BP due to patch? Clarence E. Grim, BS, MS, MD On Thursday, April 23, 2009, at 07:54AM, " kimsstay " <kimshannons@...> wrote: >Dear ita, my heart goes out to you, it really seems like you are having a tough time. I just wanted to mention that my metenaphrines are always elevated, in the thousands. With me it is the norepenphrine and dopamine that are elevated, the epinephrine is normal. While I think you should definately be tested for pheo, my doc told me that pheo usually cause the mets to be in the tens of thousands, not thousands. Now, I have been thouroughly scanned for a tumor and it has not been found so they think the execess mets are from either my nerve endings or adrenals. They really make you feel like crap. I have been vomiting and fainting and they think because of these, just recently I have been better and they are attributing it to the clonidine patch. > >Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 You can do aldo/renin on spiro but if the ratio is not high you cannot be suspicious of PA and would need to try testing again off of spiro. One of the reasons testing should be done before spiro is started if possible. If cost were no issue I would recommend testing before starting any BP med. Also anytime a pt gets hypokalemic for any reason. Clarence E. Grim, BS, MS, MD On Thursday, April 23, 2009, at 10:00AM, " Valarie " <val@...> wrote: >Your endo is correct about testing aldo. Once you are on spiro or Inspra, >aldo testing is not valid. I wonder what the T4 - B12 connection is? > >I'd love to see a study of the FT3 levels of people with PA. Maybe that is >why weight is a problem for many. > >Val > >From: hyperaldosteronism >[mailto:hyperaldosteronism ] On Behalf Of meling333 > >Mi is always above range on creatinine the endo in sac says it is ok. When I >asked him to test my aldo he said " its not necessary we know it is messed >up " . I know T3 is much harder on conn's people. I used to take it and the >same thing happened to me as you. Also low T4 can result in low B12. JUanita > > > >> >> ita, I would suggest you keep an eye on your creatinine. When I was on >> 150 mg spiro, mine got to the top of the range. When I dropped back to 100 >> mg, creatinine came down. My science dummy brain thinks there was a >> connection but I don't know. >> >> I've been thinking a lot about your thyroid meds and your dose of spiro. >T4 >> is supposed to convert to T3, as needed. I think, somehow, T3 may drop K. >> Every time I tried to take a tiny bit of T3, my K would plunge, I swelled >up >> and BP shot up. I think my low FT3 is my body's way of mitigating the >> effects of low K. Does that make sense? And, as a result, since T3 is the >> active hormone that controls metabolism, low T3 may contribute to excess >> weight. >> >> Val > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Kim, I'm wonder why you've never had AVS. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of kimsstay Dr. Grim, is there any known connection between high doses of Spiro and kidney problems? After being on 300 mg day (split) for a year my kidneys started to go bad, my creatinine kept getting higher and higher, then I ended up in hospital with acute kidney failure. My kidneys have recovered but I have not been on spiro since cuz the docs thought it was attributing to my 'low volume' troubles and vomiting... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 Hi Dr. Grim Well so far I stopped taking the CCB, less atenolol and have cut the ACE in half. I am going to stuff myself with as much Spiro as I can tolorate and try to get rid of the other drugs. It's too bad that,mal practice insurance is so high it is preventing you from doing what you want.Your such a fine Dr. especially being a Endo your one in a million. Your the only dr. that understands and can help me with the mess I am in. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 ita, be careful of what you're saying about Dr. Grim. He is too good to be an endo. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333 Hi Dr. Grim Well so far I stopped taking the CCB, less atenolol and have cut the ACE in half. I am going to stuff myself with as much Spiro as I can tolorate and try to get rid of the other drugs. It's too bad that,mal practice insurance is so high it is preventing you from doing what you want.Your such a fine Dr. especially being a Endo your one in a million. Your the only dr. that understands and can help me with the mess I am in. ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 I have been a member of the Endocrine Society and gave a talk to the National meeting 2 years ago about ethnic differences in renin and aldo. Was on the Endo Faculty in Indianapolis 1973-84.BTW Dr. Conn was an Endo.Have also talked to them about PA and published in their Js. So could be considered an Endo.On Apr 26, 2009, at 9:04 PM, Valarie wrote:ita, be careful of what you're saying about Dr. Grim. He is too good to be an endo. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333Hi Dr. GrimWell so far I stopped taking the CCB, less atenolol and have cut the ACE in half. I am going to stuff myself with as much Spiro as I can tolorate and try to get rid of the other drugs. It's too bad that,mal practice insurance is so high it is preventing you from doing what you want.Your such a fine Dr. especially being a Endo your one in a million. Your the only dr. that understands and can help me with the mess I am in. ita Quote Link to comment Share on other sites More sharing options...
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