Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 Start DASHING Now. Ever been on Spiro. You should contact NIH to see if they ate interested in studying you my guess is they will be. JC can give u details. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 28, 2012, at 8:21, <jclark24p@...> wrote: It sounds like your doctor is spot on with your meds. How is your potassium(K)and is he trying to normalize it? It should be as close to "normal" as possible for testing. I went off meds last December and was tested at NIH in April so I can feel your pain! I think the only thing worse than having PA is having it the second time around! They have decided I should treat with Eplerenone and BP and BS are well controlled but I am still checking because they found I have excess cortisol also (subclinical Cushing's). Is it safe to assume your adenoma is on the left side? I have a right side adenoma and right side pain that radiates to my right testis. It got bad enough that they put me on narcotics and I was medically disabled 7 years early (I was a motor coach driver). I contend it is caused by the excess aldosterone because it went away when spironolactone got everything else under control and came back a month after I stopped spiro to prepare for testing. Please give us a little more info (a thumbnail) and we can do a better job helping you. > > I have been taken off all my usual meds (Diovan, Cardicor and Spiro) and started on Doxazosin prior to Saline Infusion Test and Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/aldo testing showed positive for Conn's Syndrome. My previous meds seemed to be controlling alot of my symptoms quite well but since coming off them and starting Doxazosin my symptoms seem to have come back with a vengence and are quite debilitating. I have no energy at all, my concentration is absolutely terrible to the point I can't even concentrate on conversations. I'm also up to the loo during the night again. I am now off work and if the tests are positive for Conn's Syndrome am hoping to have surgery in August. I just want to know is this usual. I have also had a dull ache under my left rib cage for a few months now. My doctors don't seem concerned but I'd like to know if anyone else has discomfort of this kind. > Sorry for rambling but there are so many ways this is affecting my life and there are so many symptoms it can be hard to deal with at times. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 1500 is for Na K should be 4700May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 28, 2012, at 9:13, Francis Bill SUSPECTED PA <georgewbill@...> wrote: Most likely Sx due to your K being low. So eating more K should help. May need 1500 MG or more K a day to get to where you can function. > > > > I have been taken off all my usual meds (Diovan, Cardicor and Spiro) and started on Doxazosin prior to Saline Infusion Test and Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/aldo testing showed positive for Conn's Syndrome. My previous meds seemed to be controlling alot of my symptoms quite well but since coming off them and starting Doxazosin my symptoms seem to have come back with a vengence and are quite debilitating. I have no energy at all, my concentration is absolutely terrible to the point I can't even concentrate on conversations. I'm also up to the loo during the night again. I am now off work and if the tests are positive for Conn's Syndrome am hoping to have surgery in August. I just want to know is this usual. I have also had a dull ache under my left rib cage for a few months now. My doctors don't seem concerned but I'd like to know if anyone else has discomfort of this kind. > > Sorry for rambling but there are so many ways this is affecting my life and there are so many symptoms it can be hard to deal with at times. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 Great. Maybe you should write a how to for the NIH study if you have not already.CE Grim MDOn Jun 28, 2012, at 12:14 PM, wrote: I wasn't sure how convient it would be for her to get to Bethesda, MD., USA since she "was using the loo". I'll be happy to provide if appropriate. > > > > > > I have been taken off all my usual meds (Diovan, Cardicor and Spiro) and started on Doxazosin prior to Saline Infusion Test and Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/aldo testing showed positive for Conn's Syndrome. My previous meds seemed to be controlling alot of my symptoms quite well but since coming off them and starting Doxazosin my symptoms seem to have come back with a vengence and are quite debilitating. I have no energy at all, my concentration is absolutely terrible to the point I can't even concentrate on conversations. I'm also up to the loo during the night again. I am now off work and if the tests are positive for Conn's Syndrome am hoping to have surgery in August. I just want to know is this usual. I have also had a dull ache under my left rib cage for a few months now. My doctors don't seem concerned but I'd like to know if anyone else has discomfort of this kind. > > > Sorry for rambling but there are so many ways this is affecting my life and there are so many symptoms it can be hard to deal with at times. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 It is really very easy and cheap. Eat mostly rice and fruit.See ricediet.comRice is one of the least expensive items you can eat as I recall. Just a matter to using good recipes which one can get a book from ricediet.comCE Grim MDOn Jun 28, 2012, at 12:15 PM, Francis Bill SUSPECTED PA wrote: What I meant was need to add this much K to what they are now eating. Since they are still in the testing stage they may need to keep sodium where it is. Not easy to cut sodium to 1500 MG as you have change many things to do this. and even 1500 may not be enough. Some may need more then 4700 MG of K a day and easier to add K then reduce sodium. When one has chronic fatigue and brain fog it becomes very hard to do any shopping or cooking so tend to do what is easy. > > > > > > > > I have been taken off all my usual meds (Diovan, Cardicor and Spiro) and started on Doxazosin prior to Saline Infusion Test and Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/aldo testing showed positive for Conn's Syndrome. My previous meds seemed to be controlling alot of my symptoms quite well but since coming off them and starting Doxazosin my symptoms seem to have come back with a vengence and are quite debilitating. I have no energy at all, my concentration is absolutely terrible to the point I can't even concentrate on conversations. I'm also up to the loo during the night again. I am now off work and if the tests are positive for Conn's Syndrome am hoping to have surgery in August. I just want to know is this usual. I have also had a dull ache under my left rib cage for a few months now. My doctors don't seem concerned but I'd like to know if anyone else has discomfort of this kind. > > > > Sorry for rambling but there are so many ways this is affecting my life and there are so many symptoms it can be hard to deal with at times. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 I find it very easy to cut it down to 1500 a day. Packaged and can meals are out, fresh stuff is in. I eat tons of chicken - I know it can be infused, but if so it's not that much 'cause I know when my salt is high. And I personally am not a fan of rice. I have no diet restrictions per se, like I am not lactose, or sucrose, or fructose, or any "ose" intolerant, and I eat not that much different than I used to, minus breads and pastas. I use less butter, less condiments, and so on. What I meant was need to add this much K to what they are now eating. Since they are still in the testing stage they may need to keep sodium where it is. Not easy to cut sodium to 1500 MG as you have change many things to do this. and even 1500 may not be enough. Some may need more then 4700 MG of K a day and easier to add K then reduce sodium. When one has chronic fatigue and brain fog it becomes very hard to do any shopping or cooking so tend to do what is easy. > > > >> > > > I have been taken off all my usual meds (Diovan, Cardicor and Spiro) and started on Doxazosin prior to Saline Infusion Test and Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/aldo testing showed positive for Conn's Syndrome. My previous meds seemed to be controlling alot of my symptoms quite well but since coming off them and starting Doxazosin my symptoms seem to have come back with a vengence and are quite debilitating. I have no energy at all, my concentration is absolutely terrible to the point I can't even concentrate on conversations. I'm also up to the loo during the night again. I am now off work and if the tests are positive for Conn's Syndrome am hoping to have surgery in August. I just want to know is this usual. I have also had a dull ache under my left rib cage for a few months now. My doctors don't seem concerned but I'd like to know if anyone else has discomfort of this kind.> > > > Sorry for rambling but there are so many ways this is affecting my life and there are so many symptoms it can be hard to deal with at times.> > > >> > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 Excellente!CE Grim MDOn Jun 28, 2012, at 5:40 PM, wrote: There is one in files, "Accessing the National Institutes of Health " uploaded by Val on Aug. 4, 2009. > > > > > > > > > > I have been taken off all my usual meds (Diovan, Cardicor and > > Spiro) and started on Doxazosin prior to Saline Infusion Test and > > Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/ > > aldo testing showed positive for Conn's Syndrome. My previous meds > > seemed to be controlling alot of my symptoms quite well but since > > coming off them and starting Doxazosin my symptoms seem to have come > > back with a vengence and are quite debilitating. I have no energy at > > all, my concentration is absolutely terrible to the point I can't > > even concentrate on conversations. I'm also up to the loo during the > > night again. I am now off work and if the tests are positive for > > Conn's Syndrome am hoping to have surgery in August. I just want to > > know is this usual. I have also had a dull ache under my left rib > > cage for a few months now. My doctors don't seem concerned but I'd > > like to know if anyone else has discomfort of this kind. > > > > > Sorry for rambling but there are so many ways this is > > affecting my life and there are so many symptoms it can be hard to > > deal with at times. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 And read the labels?CE Grim MDOn Jun 28, 2012, at 4:28 PM, Bingham wrote: I find it very easy to cut it down to 1500 a day. Packaged and can meals are out, fresh stuff is in. I eat tons of chicken - I know it can be infused, but if so it's not that much 'cause I know when my salt is high. And I personally am not a fan of rice. I have no diet restrictions per se, like I am not lactose, or sucrose, or fructose, or any "ose" intolerant, and I eat not that much different than I used to, minus breads and pastas. I use less butter, less condiments, and so on. What I meant was need to add this much K to what they are now eating. Since they are still in the testing stage they may need to keep sodium where it is. Not easy to cut sodium to 1500 MG as you have change many things to do this. and even 1500 may not be enough. Some may need more then 4700 MG of K a day and easier to add K then reduce sodium. When one has chronic fatigue and brain fog it becomes very hard to do any shopping or cooking so tend to do what is easy. > > > >> > > > I have been taken off all my usual meds (Diovan, Cardicor and Spiro) and started on Doxazosin prior to Saline Infusion Test and Adrenal Vein Sampling. I have a 2cm adrenal ademoma, low K and renin/aldo testing showed positive for Conn's Syndrome. My previous meds seemed to be controlling alot of my symptoms quite well but since coming off them and starting Doxazosin my symptoms seem to have come back with a vengence and are quite debilitating. I have no energy at all, my concentration is absolutely terrible to the point I can't even concentrate on conversations. I'm also up to the loo during the night again. I am now off work and if the tests are positive for Conn's Syndrome am hoping to have surgery in August. I just want to know is this usual. I have also had a dull ache under my left rib cage for a few months now. My doctors don't seem concerned but I'd like to know if anyone else has discomfort of this kind.> > > > Sorry for rambling but there are so many ways this is affecting my life and there are so many symptoms it can be hard to deal with at times.> > > >> > >> > > >> Quote Link to comment Share on other sites More sharing options...
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