Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 On Mar 20, 2009, at 6:00 PM, Eva wrote: > I can't reply to all of your questions but just to 1 and 2: > > 1. There are (at least here in Germany) several (4 or 5) cases of > people > (Including myself) diagnosed with Conn's first without being > continuelly > hypertensive and hypokalemic. In all of those cases known to me > people were > ultimately diagnosed with nothing even if their blood clearly shows > Primary > Hyperaldosteronism. The exclusion was done via Fludrocortison- > surpression > test - so be sure you get that. The doctos here don't know where > exactly > those high aldosterone (and often low renin) cases come from, but > they tell > me every time it's neither the adrenal glands nor some kind of > secondary > hyperaldosteronism, as beside the endocrinologic hypes I'm completely > healthy. My doc tells me, he'll keep thinking about it, but as the > Pseudo-Conn's are even less than the Conn's, I shouldn't hope for a > quick > solution. > > Look at my article and you will see why many Drs are confused about > early Conn's. > > 2. I do sufer from temporary increases of blood pressure and quite > often > from potassium decreases. For the blood pressure I try to keep my > natrium in > check and do more exercise again, even if it's hard. went up from > 100/60 to > 125/85, but Sometimes I go up to 160/110 for a short time and to > 140/90 even > for some hours. NOthing compared to the " real Conn's " , but it's quite > exhausting if you're used to 100/60. > > Early Conn's IMHO > > > For the potassium I just keep nutrient supply on hand whereever I > go and Eat > loaads of potasium rich fruit and veggies. It might be a more > psychological > thing though, because I also have Magnesium problems and my > potassium is > fine in 75% of the blood/urine tests. > > This is why we recommend DASHing. > > > Can't say much for the rest and I really am a weird case, but your > questions > just striked on me, so I thought about telling what I got to know > during the > past few months - even if it is all very confusing. > But as for me, I'm pretty fine again after a 6 months period of > just running > from doc to doc to hospital and hospital. I'll never be completely > healthy > again and I'll probably won't get a good diagnosis for years or > even never, > as I'm a weird case in just everything but I can walk, work, live > again - so > everything is managable. And sometimes you just have to accept not > being > normal - so try everything you can get medicinally, but if you > can't go > further, just find your own solutions. > > Once again you have early Conn's. > > > Can you give us your renin and also numbers. I don't do fluor supp tests. Gave them up 25 years ago. Saline infusion much quicker and safer. > luck > > Eva > > 2009/3/20 cwguin <cwguin@...> > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > consultation fee, so would like to ask group my few general > questions. > > Appreciative of replies - > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > hyperaldosteronism without being symptomatically hypertensive or > > hypokalemic? > > > > 2. Can periodic, temporary slight to moderate increases in blood > pressure > > and/or decreases in potassium be attributed to Conn's/primary > > hyperaldosteronism? > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > is it > > experienced and mamaged? > > > > 4. What are the " personality changes " sometimes mentioned in > literature > > associated with Conn's/hyperaldosteronism? How are they > experienced and > > managed? > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > by diet > > and life style modifications alone? > > > > 5. Any recommendations of doctor's/medical facilities on the East > Coast of > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > Ahead of time - thanks for your time and consideration > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Dr. Grim, I appreciate your opinion and efforts. I already discussed your work and the possibility of Early Conn's with my doctors. I don't believe they're confused as they're in Conn-research themselves, have large databases of Conn-patients and I have seen loads of confused endocrinologists before. Beside Fludrocortison-sup and saline injection test both being negative their main reason is that I have high Aldosterone measured since 2003 and that I have this really weird history of Hypocortisolism, which no one to date can't explain either. Latest suggestion was to go and see a Nephrologist if the kalium gets worse, but I have seen enough hospitals for now and am at least fine enough to go back to work. Can't give you the latest numbers though, as I haven't received the final report from hospital yet (German hospitals are really really slow with that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was at 11,9 pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ml, Renin at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 of 187. Renin is not stated as this was only to test if I needed to take Fludrocortison aditionally to the normal Hydrocortison I had to take because of the Hypocortisolism. But as always, I don't want to confuse anybody, it seems as I'm really some kind of weird joke from the universe or maybe as one doctor once suggested my blood samples were confused all the time. I'll keep you updated when I get my hospital letter, the doc wanted to think about my creative adrenal glands further, so it might take quite some time. Thanks for your effort, Eva .. 2009/3/21 Clarence Grim <lowerbp2@...> > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > I can't reply to all of your questions but just to 1 and 2: > > > > 1. There are (at least here in Germany) several (4 or 5) cases of > > people > > (Including myself) diagnosed with Conn's first without being > > continuelly > > hypertensive and hypokalemic. In all of those cases known to me > > people were > > ultimately diagnosed with nothing even if their blood clearly shows > > Primary > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > surpression > > test - so be sure you get that. The doctos here don't know where > > exactly > > those high aldosterone (and often low renin) cases come from, but > > they tell > > me every time it's neither the adrenal glands nor some kind of > > secondary > > hyperaldosteronism, as beside the endocrinologic hypes I'm completely > > healthy. My doc tells me, he'll keep thinking about it, but as the > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope for a > > quick > > solution. > > > > > Look at my article and you will see why many Drs are confused about > > early Conn's. > > > > > 2. I do sufer from temporary increases of blood pressure and quite > > often > > from potassium decreases. For the blood pressure I try to keep my > > natrium in > > check and do more exercise again, even if it's hard. went up from > > 100/60 to > > 125/85, but Sometimes I go up to 160/110 for a short time and to > > 140/90 even > > for some hours. NOthing compared to the " real Conn's " , but it's quite > > exhausting if you're used to 100/60. > > > > > Early Conn's IMHO > > > > > > > For the potassium I just keep nutrient supply on hand whereever I > > go and Eat > > loaads of potasium rich fruit and veggies. It might be a more > > psychological > > thing though, because I also have Magnesium problems and my > > potassium is > > fine in 75% of the blood/urine tests. > > > > > This is why we recommend DASHing. > > > > > > > Can't say much for the rest and I really am a weird case, but your > > questions > > just striked on me, so I thought about telling what I got to know > > during the > > past few months - even if it is all very confusing. > > But as for me, I'm pretty fine again after a 6 months period of > > just running > > from doc to doc to hospital and hospital. I'll never be completely > > healthy > > again and I'll probably won't get a good diagnosis for years or > > even never, > > as I'm a weird case in just everything but I can walk, work, live > > again - so > > everything is managable. And sometimes you just have to accept not > > being > > normal - so try everything you can get medicinally, but if you > > can't go > > further, just find your own solutions. > > > > > Once again you have early Conn's. > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor supp > tests. Gave them up 25 years ago. Saline infusion much quicker and > safer. > > > luck > > > > Eva > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40>> > > > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > > consultation fee, so would like to ask group my few general > > questions. > > > Appreciative of replies - > > > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > > hyperaldosteronism without being symptomatically hypertensive or > > > hypokalemic? > > > > > > 2. Can periodic, temporary slight to moderate increases in blood > > pressure > > > and/or decreases in potassium be attributed to Conn's/primary > > > hyperaldosteronism? > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > > is it > > > experienced and mamaged? > > > > > > 4. What are the " personality changes " sometimes mentioned in > > literature > > > associated with Conn's/hyperaldosteronism? How are they > > experienced and > > > managed? > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > > by diet > > > and life style modifications alone? > > > > > > 5. Any recommendations of doctor's/medical facilities on the East > > Coast of > > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 What has spriro done to your situation? DASHing recommended by anyone? IMHO you have early PA. On Mar 21, 2009, at 6:01 PM, Eva wrote: > Dr. Grim, > > I appreciate your opinion and efforts. I already discussed your > work and the > possibility of Early Conn's with my doctors. I don't believe they're > confused as they're in Conn-research themselves, have large > databases of > Conn-patients and I have seen loads of confused endocrinologists > before. > > Beside Fludrocortison-sup and saline injection test both being > negative > their main reason is that I have high Aldosterone measured since > 2003 and > that I have this really weird history of Hypocortisolism, which no > one to > date can't explain either. > > Latest suggestion was to go and see a Nephrologist if the kalium > gets worse, > but I have seen enough hospitals for now and am at least fine > enough to go > back to work. > > Can't give you the latest numbers though, as I haven't received the > final > report from hospital yet (German hospitals are really really slow with > that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was > at 11,9 > pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ > ml, Renin > at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 > of 187. > Renin is not stated as this was only to test if I needed to take > Fludrocortison aditionally to the normal Hydrocortison I had to > take because > of the Hypocortisolism. > > But as always, I don't want to confuse anybody, it seems as I'm > really some > kind of weird joke from the universe or maybe as one doctor once > suggested > my blood samples were confused all the time. > > I'll keep you updated when I get my hospital letter, the doc wanted > to think > about my creative adrenal glands further, so it might take quite > some time. > > Thanks for your effort, > > Eva > > . > > 2009/3/21 Clarence Grim <lowerbp2@...> > > > > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > 1. There are (at least here in Germany) several (4 or 5) cases of > > > people > > > (Including myself) diagnosed with Conn's first without being > > > continuelly > > > hypertensive and hypokalemic. In all of those cases known to me > > > people were > > > ultimately diagnosed with nothing even if their blood clearly > shows > > > Primary > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > surpression > > > test - so be sure you get that. The doctos here don't know where > > > exactly > > > those high aldosterone (and often low renin) cases come from, but > > > they tell > > > me every time it's neither the adrenal glands nor some kind of > > > secondary > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > completely > > > healthy. My doc tells me, he'll keep thinking about it, but as the > > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope > for a > > > quick > > > solution. > > > > > > > > Look at my article and you will see why many Drs are confused > about > > > early Conn's. > > > > > > > > 2. I do sufer from temporary increases of blood pressure and quite > > > often > > > from potassium decreases. For the blood pressure I try to keep my > > > natrium in > > > check and do more exercise again, even if it's hard. went up from > > > 100/60 to > > > 125/85, but Sometimes I go up to 160/110 for a short time and to > > > 140/90 even > > > for some hours. NOthing compared to the " real Conn's " , but it's > quite > > > exhausting if you're used to 100/60. > > > > > > > > Early Conn's IMHO > > > > > > > > > > > For the potassium I just keep nutrient supply on hand whereever I > > > go and Eat > > > loaads of potasium rich fruit and veggies. It might be a more > > > psychological > > > thing though, because I also have Magnesium problems and my > > > potassium is > > > fine in 75% of the blood/urine tests. > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > Can't say much for the rest and I really am a weird case, but your > > > questions > > > just striked on me, so I thought about telling what I got to know > > > during the > > > past few months - even if it is all very confusing. > > > But as for me, I'm pretty fine again after a 6 months period of > > > just running > > > from doc to doc to hospital and hospital. I'll never be completely > > > healthy > > > again and I'll probably won't get a good diagnosis for years or > > > even never, > > > as I'm a weird case in just everything but I can walk, work, live > > > again - so > > > everything is managable. And sometimes you just have to accept not > > > being > > > normal - so try everything you can get medicinally, but if you > > > can't go > > > further, just find your own solutions. > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor supp > > tests. Gave them up 25 years ago. Saline infusion much quicker and > > safer. > > > > > luck > > > > > > Eva > > > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40>> > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > Grim's > > > > consultation fee, so would like to ask group my few general > > > questions. > > > > Appreciative of replies - > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > > > hyperaldosteronism without being symptomatically hypertensive or > > > > hypokalemic? > > > > > > > > 2. Can periodic, temporary slight to moderate increases in blood > > > pressure > > > > and/or decreases in potassium be attributed to Conn's/primary > > > > hyperaldosteronism? > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > > > is it > > > > experienced and mamaged? > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > literature > > > > associated with Conn's/hyperaldosteronism? How are they > > > experienced and > > > > managed? > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > > > by diet > > > > and life style modifications alone? > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > East > > > Coast of > > > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Are you taking fludro now every day? On Mar 21, 2009, at 6:01 PM, Eva wrote: > Dr. Grim, > > I appreciate your opinion and efforts. I already discussed your > work and the > possibility of Early Conn's with my doctors. I don't believe they're > confused as they're in Conn-research themselves, have large > databases of > Conn-patients and I have seen loads of confused endocrinologists > before. > > Beside Fludrocortison-sup and saline injection test both being > negative > their main reason is that I have high Aldosterone measured since > 2003 and > that I have this really weird history of Hypocortisolism, which no > one to > date can't explain either. > > Latest suggestion was to go and see a Nephrologist if the kalium > gets worse, > but I have seen enough hospitals for now and am at least fine > enough to go > back to work. > > Can't give you the latest numbers though, as I haven't received the > final > report from hospital yet (German hospitals are really really slow with > that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was > at 11,9 > pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ > ml, Renin > at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 > of 187. > Renin is not stated as this was only to test if I needed to take > Fludrocortison aditionally to the normal Hydrocortison I had to > take because > of the Hypocortisolism. > > But as always, I don't want to confuse anybody, it seems as I'm > really some > kind of weird joke from the universe or maybe as one doctor once > suggested > my blood samples were confused all the time. > > I'll keep you updated when I get my hospital letter, the doc wanted > to think > about my creative adrenal glands further, so it might take quite > some time. > > Thanks for your effort, > > Eva > > . > > 2009/3/21 Clarence Grim <lowerbp2@...> > > > > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > 1. There are (at least here in Germany) several (4 or 5) cases of > > > people > > > (Including myself) diagnosed with Conn's first without being > > > continuelly > > > hypertensive and hypokalemic. In all of those cases known to me > > > people were > > > ultimately diagnosed with nothing even if their blood clearly > shows > > > Primary > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > surpression > > > test - so be sure you get that. The doctos here don't know where > > > exactly > > > those high aldosterone (and often low renin) cases come from, but > > > they tell > > > me every time it's neither the adrenal glands nor some kind of > > > secondary > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > completely > > > healthy. My doc tells me, he'll keep thinking about it, but as the > > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope > for a > > > quick > > > solution. > > > > > > > > Look at my article and you will see why many Drs are confused > about > > > early Conn's. > > > > > > > > 2. I do sufer from temporary increases of blood pressure and quite > > > often > > > from potassium decreases. For the blood pressure I try to keep my > > > natrium in > > > check and do more exercise again, even if it's hard. went up from > > > 100/60 to > > > 125/85, but Sometimes I go up to 160/110 for a short time and to > > > 140/90 even > > > for some hours. NOthing compared to the " real Conn's " , but it's > quite > > > exhausting if you're used to 100/60. > > > > > > > > Early Conn's IMHO > > > > > > > > > > > For the potassium I just keep nutrient supply on hand whereever I > > > go and Eat > > > loaads of potasium rich fruit and veggies. It might be a more > > > psychological > > > thing though, because I also have Magnesium problems and my > > > potassium is > > > fine in 75% of the blood/urine tests. > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > Can't say much for the rest and I really am a weird case, but your > > > questions > > > just striked on me, so I thought about telling what I got to know > > > during the > > > past few months - even if it is all very confusing. > > > But as for me, I'm pretty fine again after a 6 months period of > > > just running > > > from doc to doc to hospital and hospital. I'll never be completely > > > healthy > > > again and I'll probably won't get a good diagnosis for years or > > > even never, > > > as I'm a weird case in just everything but I can walk, work, live > > > again - so > > > everything is managable. And sometimes you just have to accept not > > > being > > > normal - so try everything you can get medicinally, but if you > > > can't go > > > further, just find your own solutions. > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor supp > > tests. Gave them up 25 years ago. Saline infusion much quicker and > > safer. > > > > > luck > > > > > > Eva > > > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40>> > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > Grim's > > > > consultation fee, so would like to ask group my few general > > > questions. > > > > Appreciative of replies - > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > > > hyperaldosteronism without being symptomatically hypertensive or > > > > hypokalemic? > > > > > > > > 2. Can periodic, temporary slight to moderate increases in blood > > > pressure > > > > and/or decreases in potassium be attributed to Conn's/primary > > > > hyperaldosteronism? > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > > > is it > > > > experienced and mamaged? > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > literature > > > > associated with Conn's/hyperaldosteronism? How are they > > > experienced and > > > > managed? > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > > > by diet > > > > and life style modifications alone? > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > East > > > Coast of > > > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Spiro was never prescripted to me, as the 24-hour blood pressure measurement''s average was only 125/80 and in Germany you don't get meds if you're not over 140/90 at least 30% of the time. Dashing wasn't recommended, but I got a special nutritional advicement session for my other problems, too and it's pretty similair to Dashing except that I eat less carbs, no iodine, and am allowed to stay vegan. I'm going to be checked through once every 2 years or so now, so if I do have early PA they're going to find it soon enough, that's my only hope. I got a MRI, too though and both adrenal glands are rather small without adenomas. Does (bilateral) hyperplasia exist with small glands? One is almost completely recessed. My docs said it would be rather very unusual. Will keep you updated, thanks. 2009/3/22 Clarence Grim <lowerbp2@...> > What has spriro done to your situation? > > DASHing recommended by anyone? > > IMHO you have early PA. > > On Mar 21, 2009, at 6:01 PM, Eva wrote: > > > Dr. Grim, > > > > I appreciate your opinion and efforts. I already discussed your > > work and the > > possibility of Early Conn's with my doctors. I don't believe they're > > confused as they're in Conn-research themselves, have large > > databases of > > Conn-patients and I have seen loads of confused endocrinologists > > before. > > > > Beside Fludrocortison-sup and saline injection test both being > > negative > > their main reason is that I have high Aldosterone measured since > > 2003 and > > that I have this really weird history of Hypocortisolism, which no > > one to > > date can't explain either. > > > > Latest suggestion was to go and see a Nephrologist if the kalium > > gets worse, > > but I have seen enough hospitals for now and am at least fine > > enough to go > > back to work. > > > > Can't give you the latest numbers though, as I haven't received the > > final > > report from hospital yet (German hospitals are really really slow with > > that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was > > at 11,9 > > pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ > > ml, Renin > > at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 > > of 187. > > Renin is not stated as this was only to test if I needed to take > > Fludrocortison aditionally to the normal Hydrocortison I had to > > take because > > of the Hypocortisolism. > > > > But as always, I don't want to confuse anybody, it seems as I'm > > really some > > kind of weird joke from the universe or maybe as one doctor once > > suggested > > my blood samples were confused all the time. > > > > I'll keep you updated when I get my hospital letter, the doc wanted > > to think > > about my creative adrenal glands further, so it might take quite > > some time. > > > > Thanks for your effort, > > > > Eva > > > > . > > > > 2009/3/21 Clarence Grim <lowerbp2@... <lowerbp2%40mac.com>> > > > > > > > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > > > 1. There are (at least here in Germany) several (4 or 5) cases of > > > > people > > > > (Including myself) diagnosed with Conn's first without being > > > > continuelly > > > > hypertensive and hypokalemic. In all of those cases known to me > > > > people were > > > > ultimately diagnosed with nothing even if their blood clearly > > shows > > > > Primary > > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > > surpression > > > > test - so be sure you get that. The doctos here don't know where > > > > exactly > > > > those high aldosterone (and often low renin) cases come from, but > > > > they tell > > > > me every time it's neither the adrenal glands nor some kind of > > > > secondary > > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > > completely > > > > healthy. My doc tells me, he'll keep thinking about it, but as the > > > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope > > for a > > > > quick > > > > solution. > > > > > > > > > > > Look at my article and you will see why many Drs are confused > > about > > > > early Conn's. > > > > > > > > > > > 2. I do sufer from temporary increases of blood pressure and quite > > > > often > > > > from potassium decreases. For the blood pressure I try to keep my > > > > natrium in > > > > check and do more exercise again, even if it's hard. went up from > > > > 100/60 to > > > > 125/85, but Sometimes I go up to 160/110 for a short time and to > > > > 140/90 even > > > > for some hours. NOthing compared to the " real Conn's " , but it's > > quite > > > > exhausting if you're used to 100/60. > > > > > > > > > > > Early Conn's IMHO > > > > > > > > > > > > > > > For the potassium I just keep nutrient supply on hand whereever I > > > > go and Eat > > > > loaads of potasium rich fruit and veggies. It might be a more > > > > psychological > > > > thing though, because I also have Magnesium problems and my > > > > potassium is > > > > fine in 75% of the blood/urine tests. > > > > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > > > > > Can't say much for the rest and I really am a weird case, but your > > > > questions > > > > just striked on me, so I thought about telling what I got to know > > > > during the > > > > past few months - even if it is all very confusing. > > > > But as for me, I'm pretty fine again after a 6 months period of > > > > just running > > > > from doc to doc to hospital and hospital. I'll never be completely > > > > healthy > > > > again and I'll probably won't get a good diagnosis for years or > > > > even never, > > > > as I'm a weird case in just everything but I can walk, work, live > > > > again - so > > > > everything is managable. And sometimes you just have to accept not > > > > being > > > > normal - so try everything you can get medicinally, but if you > > > > can't go > > > > further, just find your own solutions. > > > > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor supp > > > tests. Gave them up 25 years ago. Saline infusion much quicker and > > > safer. > > > > > > > luck > > > > > > > > Eva > > > > > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40> <cwguin% > 40>> > > > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > > Grim's > > > > > consultation fee, so would like to ask group my few general > > > > questions. > > > > > Appreciative of replies - > > > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > > > > hyperaldosteronism without being symptomatically hypertensive or > > > > > hypokalemic? > > > > > > > > > > 2. Can periodic, temporary slight to moderate increases in blood > > > > pressure > > > > > and/or decreases in potassium be attributed to Conn's/primary > > > > > hyperaldosteronism? > > > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > > > > is it > > > > > experienced and mamaged? > > > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > > literature > > > > > associated with Conn's/hyperaldosteronism? How are they > > > > experienced and > > > > > managed? > > > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > > > > by diet > > > > > and life style modifications alone? > > > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > > East > > > > Coast of > > > > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Just a couple of answers for you from my experience: 3. I have found that I have been more anxious since suffering PHA. I currently undertake a government safety inspection job, but feel like I have lost a lot of confidence since my diagnosis. I am currently on part time return to work plan, as my nephrologist who is looking after my PHA does not want me working full time at this point in time. I have found that before I was on spironolactone I could recall legislation very easily and undertake my job with confidence, but now I need to research my answers before providing them to the public. I am more confused and definitely become more anxious when I feel I have more to do. I feel my coping mechanisms are now much more reduced. So what do I do - just try to deal with it. I do not take antidepressants, although I truly know there are just some days when I wake up feeling 'darker' than I did the previous day. I make sure I exercise for at least 30 minutes every day, even though I suffer from muscle pain and weakness. And I try to keep myself as positive as possible. 4. I think the personality changes are part of what I wrote above. It is the losing of confidence and the constant fatigue that makes me withdraw from more social activities than what I have done previously. I am definitely much quieter, less able to deal with stress issues and so am more anxious. 5. After 9 months of diagnosis and treatment, I am still not sufficiently managed by diet, life style modifications and spironolactone/atacand treatment. My BP swings back and forth, sometimes for a week it can be good and then off it goes again. But having said that, prior to spiro treatment my BP was 240/125, and now swings between 180/100 to 130/70, so the spiro treatment has certainly helped. Mind you, I have only one R kidney (was born with a unilateral R kidney), and from a recent Doppler undertaken last week, I now have a <40% narrowing of the renal artery. Something that appears to have occurred in the last 6 months. I am to undergo another Doppler in three months and they will then ascertain if I am going to need a stent. Is this related to this disease - no one will confirm that. But it has just occurred in 6 months. Anyway, hope some of this helps. I sure find the comments I read helpful and this group has given me heaps of useful information. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim Sent: Sunday, 22 March 2009 1:34 AM hyperaldosteronism Subject: Re: new with questions See my notes below: On Mar 20, 2009, at 10:27 AM, cwguin wrote: > Am new. Only have a few questions at this time. Declined Dr. Grim's > consultation fee, so would like to ask group my few general > questions. Appreciative of replies - > > 1. Can someone have apparent clinical evidence of Conn's/primary > hyperaldosteronism without being symptomatically hypertensive or > hypokalemic? > > 2. Can periodic, temporary slight to moderate increases in blood > pressure and/or decreases in potassium be attributed to Conn's/ > primary hyperaldosteronism? > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how is > it experienced and mamaged? > > 4. What are the " personality changes " sometimes mentioned in > literature associated with Conn's/hyperaldosteronism? How are they > experienced and managed? > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed by > diet and life style modifications alone? > > 5. Any recommendations of doctor's/medical facilities on the East > Coast of the USA sufficient for diagnosing/treating adrenal disorders? > > Ahead of time - thanks for your time and consideration > > > Welcome 1. Read my article in our files on the evolution of PA and take to all members of health care team. Tell us what stage you believe you are in. 2. Read our Conn's stories files and then give us your own in as much detail as you can. 3. Get the DASH diet book by T. et al, read it and use it. $8 in paperback at your local bookstore. 4. Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. CE Grim BS, MS, MD Clinical Professor of Medicine at the Medical College of Wisconsin. Specializing in difficult to treat high blood pressure and Conn's Syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 I would be very cautious about a stent in the only remaining kidney. How much spiro are u on? Recommend u have ur dr do a 24 he urine for Na & K to see if u r DASHING to the max. Have u ever been on my cocktail described in difficult HTN paper in our files. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Mar 21, 2009, at 7:36 PM, megra0409 <megra0409@...> wrote: > Just a couple of answers for you from my experience: > > 3. I have found that I have been more anxious since suffering PHA. I > currently undertake a government safety inspection job, but feel > like I have > lost a lot of confidence since my diagnosis. I am currently on part > time > return to work plan, as my nephrologist who is looking after my PHA > does not > want me working full time at this point in time. I have found that > before I > was on spironolactone I could recall legislation very easily and > undertake > my job with confidence, but now I need to research my answers before > providing them to the public. I am more confused and definitely > become more > anxious when I feel I have more to do. I feel my coping mechanisms > are now > much more reduced. > > So what do I do - just try to deal with it. I do not take > antidepressants, > although I truly know there are just some days when I wake up feeling > 'darker' than I did the previous day. I make sure I exercise for at > least 30 > minutes every day, even though I suffer from muscle pain and > weakness. And I > try to keep myself as positive as possible. > > 4. I think the personality changes are part of what I wrote above. > It is the > losing of confidence and the constant fatigue that makes me withdraw > from > more social activities than what I have done previously. I am > definitely > much quieter, less able to deal with stress issues and so am more > anxious. > > 5. After 9 months of diagnosis and treatment, I am still not > sufficiently > managed by diet, life style modifications and spironolactone/atacand > treatment. My BP swings back and forth, sometimes for a week it can > be good > and then off it goes again. But having said that, prior to spiro > treatment > my BP was 240/125, and now swings between 180/100 to 130/70, so the > spiro > treatment has certainly helped. Mind you, I have only one R kidney > (was born > with a unilateral R kidney), and from a recent Doppler undertaken > last week, > I now have a <40% narrowing of the renal artery. Something that > appears to > have occurred in the last 6 months. I am to undergo another Doppler in > three months and they will then ascertain if I am going to need a > stent. Is > this related to this disease - no one will confirm that. But it has > just > occurred in 6 months. > > Anyway, hope some of this helps. I sure find the comments I read > helpful > and this group has given me heaps of useful information. > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim > Sent: Sunday, 22 March 2009 1:34 AM > hyperaldosteronism > Subject: Re: new with questions > > See my notes below: > > On Mar 20, 2009, at 10:27 AM, cwguin wrote: > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > consultation fee, so would like to ask group my few general > > questions. Appreciative of replies - > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > hyperaldosteronism without being symptomatically hypertensive or > > hypokalemic? > > > > 2. Can periodic, temporary slight to moderate increases in blood > > pressure and/or decreases in potassium be attributed to Conn's/ > > primary hyperaldosteronism? > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how is > > it experienced and mamaged? > > > > 4. What are the " personality changes " sometimes mentioned in > > literature associated with Conn's/hyperaldosteronism? How are they > > experienced and managed? > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed by > > diet and life style modifications alone? > > > > 5. Any recommendations of doctor's/medical facilities on the East > > Coast of the USA sufficient for diagnosing/treating adrenal > disorders? > > > > Ahead of time - thanks for your time and consideration > > > > > > > > Welcome > > 1. Read my article in our files on the evolution of PA and take to > all members of health care team. Tell us what stage you believe you > are in. > > 2. Read our Conn's stories files and then give us your own in as > much detail as you can. > > 3. Get the DASH diet book by T. et al, read it and use it. $8 > in paperback at your local bookstore. > > 4. Go to familyhistory.hhs.gov and do your detailed family medical > history so we can review with you to help Dx familial causes of high > blood pressure and heart disease. > > CE Grim BS, MS, MD > > Clinical Professor of Medicine at the Medical College of Wisconsin. > > Specializing in difficult to treat high blood pressure and Conn's > Syndrome. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Yes adrenal size in Ct is poor predictor of adrenal fx. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Mar 21, 2009, at 6:50 PM, Eva <eva.weltweit@...> wrote: > Spiro was never prescripted to me, as the 24-hour blood pressure > measurement''s average was only 125/80 and in Germany you don't get > meds if > you're not over 140/90 at least 30% of the time. > > Dashing wasn't recommended, but I got a special nutritional advicement > session for my other problems, too and it's pretty similair to Dashing > except that I eat less carbs, no iodine, and am allowed to stay vegan. > > I'm going to be checked through once every 2 years or so now, so if > I do > have early PA they're going to find it soon enough, that's my only > hope. I > got a MRI, too though and both adrenal glands are rather small without > adenomas. Does (bilateral) hyperplasia exist with small glands? One is > almost completely recessed. My docs said it would be rather very > unusual. > > Will keep you updated, thanks. > 2009/3/22 Clarence Grim <lowerbp2@...> > > > What has spriro done to your situation? > > > > DASHing recommended by anyone? > > > > IMHO you have early PA. > > > > On Mar 21, 2009, at 6:01 PM, Eva wrote: > > > > > Dr. Grim, > > > > > > I appreciate your opinion and efforts. I already discussed your > > > work and the > > > possibility of Early Conn's with my doctors. I don't believe > they're > > > confused as they're in Conn-research themselves, have large > > > databases of > > > Conn-patients and I have seen loads of confused endocrinologists > > > before. > > > > > > Beside Fludrocortison-sup and saline injection test both being > > > negative > > > their main reason is that I have high Aldosterone measured since > > > 2003 and > > > that I have this really weird history of Hypocortisolism, which no > > > one to > > > date can't explain either. > > > > > > Latest suggestion was to go and see a Nephrologist if the kalium > > > gets worse, > > > but I have seen enough hospitals for now and am at least fine > > > enough to go > > > back to work. > > > > > > Can't give you the latest numbers though, as I haven't received > the > > > final > > > report from hospital yet (German hospitals are really really > slow with > > > that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was > > > at 11,9 > > > pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ > > > ml, Renin > > > at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 > > > of 187. > > > Renin is not stated as this was only to test if I needed to take > > > Fludrocortison aditionally to the normal Hydrocortison I had to > > > take because > > > of the Hypocortisolism. > > > > > > But as always, I don't want to confuse anybody, it seems as I'm > > > really some > > > kind of weird joke from the universe or maybe as one doctor once > > > suggested > > > my blood samples were confused all the time. > > > > > > I'll keep you updated when I get my hospital letter, the doc > wanted > > > to think > > > about my creative adrenal glands further, so it might take quite > > > some time. > > > > > > Thanks for your effort, > > > > > > Eva > > > > > > . > > > > > > 2009/3/21 Clarence Grim <lowerbp2@... <lowerbp2%40mac.com>> > > > > > > > > > > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > > > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > > > > > 1. There are (at least here in Germany) several (4 or 5) > cases of > > > > > people > > > > > (Including myself) diagnosed with Conn's first without being > > > > > continuelly > > > > > hypertensive and hypokalemic. In all of those cases known to > me > > > > > people were > > > > > ultimately diagnosed with nothing even if their blood clearly > > > shows > > > > > Primary > > > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > > > surpression > > > > > test - so be sure you get that. The doctos here don't know > where > > > > > exactly > > > > > those high aldosterone (and often low renin) cases come > from, but > > > > > they tell > > > > > me every time it's neither the adrenal glands nor some kind of > > > > > secondary > > > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > > > completely > > > > > healthy. My doc tells me, he'll keep thinking about it, but > as the > > > > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope > > > for a > > > > > quick > > > > > solution. > > > > > > > > > > > > > > Look at my article and you will see why many Drs are confused > > > about > > > > > early Conn's. > > > > > > > > > > > > > > 2. I do sufer from temporary increases of blood pressure and > quite > > > > > often > > > > > from potassium decreases. For the blood pressure I try to > keep my > > > > > natrium in > > > > > check and do more exercise again, even if it's hard. went up > from > > > > > 100/60 to > > > > > 125/85, but Sometimes I go up to 160/110 for a short time > and to > > > > > 140/90 even > > > > > for some hours. NOthing compared to the " real Conn's " , but > it's > > > quite > > > > > exhausting if you're used to 100/60. > > > > > > > > > > > > > > Early Conn's IMHO > > > > > > > > > > > > > > > > > > > For the potassium I just keep nutrient supply on hand > whereever I > > > > > go and Eat > > > > > loaads of potasium rich fruit and veggies. It might be a more > > > > > psychological > > > > > thing though, because I also have Magnesium problems and my > > > > > potassium is > > > > > fine in 75% of the blood/urine tests. > > > > > > > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > > > > > > > > > Can't say much for the rest and I really am a weird case, > but your > > > > > questions > > > > > just striked on me, so I thought about telling what I got to > know > > > > > during the > > > > > past few months - even if it is all very confusing. > > > > > But as for me, I'm pretty fine again after a 6 months period > of > > > > > just running > > > > > from doc to doc to hospital and hospital. I'll never be > completely > > > > > healthy > > > > > again and I'll probably won't get a good diagnosis for years > or > > > > > even never, > > > > > as I'm a weird case in just everything but I can walk, work, > live > > > > > again - so > > > > > everything is managable. And sometimes you just have to > accept not > > > > > being > > > > > normal - so try everything you can get medicinally, but if you > > > > > can't go > > > > > further, just find your own solutions. > > > > > > > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor > supp > > > > tests. Gave them up 25 years ago. Saline infusion much quicker > and > > > > safer. > > > > > > > > > luck > > > > > > > > > > Eva > > > > > > > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40> > <cwguin% > > 40>> > > > > > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > > > Grim's > > > > > > consultation fee, so would like to ask group my few general > > > > > questions. > > > > > > Appreciative of replies - > > > > > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/ > primary > > > > > > hyperaldosteronism without being symptomatically > hypertensive or > > > > > > hypokalemic? > > > > > > > > > > > > 2. Can periodic, temporary slight to moderate increases in > blood > > > > > pressure > > > > > > and/or decreases in potassium be attributed to Conn's/ > primary > > > > > > hyperaldosteronism? > > > > > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If > so, how > > > > > is it > > > > > > experienced and mamaged? > > > > > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > > > literature > > > > > > associated with Conn's/hyperaldosteronism? How are they > > > > > experienced and > > > > > > managed? > > > > > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently > managed > > > > > by diet > > > > > > and life style modifications alone? > > > > > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > > > East > > > > > Coast of > > > > > > the USA sufficient for diagnosing/treating adrenal > disorders? > > > > > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Everyone with PA evolves from normal BP and K as discussed in my article. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Mar 20, 2009, at 6:00 PM, Eva <eva.weltweit@...> wrote: > I can't reply to all of your questions but just to 1 and 2: > > 1. There are (at least here in Germany) several (4 or 5) cases of > people > (Including myself) diagnosed with Conn's first without being > continuelly > hypertensive and hypokalemic. In all of those cases known to me > people were > ultimately diagnosed with nothing even if their blood clearly shows > Primary > Hyperaldosteronism. The exclusion was done via Fludrocortison- > surpression > test - so be sure you get that. The doctos here don't know where > exactly > those high aldosterone (and often low renin) cases come from, but > they tell > me every time it's neither the adrenal glands nor some kind of > secondary > hyperaldosteronism, as beside the endocrinologic hypes I'm completely > healthy. My doc tells me, he'll keep thinking about it, but as the > Pseudo-Conn's are even less than the Conn's, I shouldn't hope for a > quick > solution. > > 2. I do sufer from temporary increases of blood pressure and quite > often > from potassium decreases. For the blood pressure I try to keep my > natrium in > check and do more exercise again, even if it's hard. went up from > 100/60 to > 125/85, but Sometimes I go up to 160/110 for a short time and to > 140/90 even > for some hours. NOthing compared to the " real Conn's " , but it's quite > exhausting if you're used to 100/60. > > For the potassium I just keep nutrient supply on hand whereever I go > and Eat > loaads of potasium rich fruit and veggies. It might be a more > psychological > thing though, because I also have Magnesium problems and my > potassium is > fine in 75% of the blood/urine tests. > > Can't say much for the rest and I really am a weird case, but your > questions > just striked on me, so I thought about telling what I got to know > during the > past few months - even if it is all very confusing. > But as for me, I'm pretty fine again after a 6 months period of just > running > from doc to doc to hospital and hospital. I'll never be completely > healthy > again and I'll probably won't get a good diagnosis for years or even > never, > as I'm a weird case in just everything but I can walk, work, live > again - so > everything is managable. And sometimes you just have to accept not > being > normal - so try everything you can get medicinally, but if you can't > go > further, just find your own solutions. > > Good luck > > Eva > > 2009/3/20 cwguin <cwguin@...> > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > consultation fee, so would like to ask group my few general > questions. > > Appreciative of replies - > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > hyperaldosteronism without being symptomatically hypertensive or > > hypokalemic? > > > > 2. Can periodic, temporary slight to moderate increases in blood > pressure > > and/or decreases in potassium be attributed to Conn's/primary > > hyperaldosteronism? > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > is it > > experienced and mamaged? > > > > 4. What are the " personality changes " sometimes mentioned in > literature > > associated with Conn's/hyperaldosteronism? How are they > experienced and > > managed? > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > by diet > > and life style modifications alone? > > > > 5. Any recommendations of doctor's/medical facilities on the East > Coast of > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > Ahead of time - thanks for your time and consideration > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 See my article and u will understand better. It's the adenal that is the cAuse of low renin and not low low aldo as My team reported in the 70s when we found hyperplasia when we operated on a number of pts with this problem and looked at their adrenals. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Mar 20, 2009, at 6:00 PM, Eva <eva.weltweit@...> wrote: > I can't reply to all of your questions but just to 1 and 2: > > 1. There are (at least here in Germany) several (4 or 5) cases of > people > (Including myself) diagnosed with Conn's first without being > continuelly > hypertensive and hypokalemic. In all of those cases known to me > people were > ultimately diagnosed with nothing even if their blood clearly shows > Primary > Hyperaldosteronism. The exclusion was done via Fludrocortison- > surpression > test - so be sure you get that. The doctos here don't know where > exactly > those high aldosterone (and often low renin) cases come from, but > they tell > me every time it's neither the adrenal glands nor some kind of > secondary > hyperaldosteronism, as beside the endocrinologic hypes I'm completely > healthy. My doc tells me, he'll keep thinking about it, but as the > Pseudo-Conn's are even less than the Conn's, I shouldn't hope for a > quick > solution. > > 2. I do sufer from temporary increases of blood pressure and quite > often > from potassium decreases. For the blood pressure I try to keep my > natrium in > check and do more exercise again, even if it's hard. went up from > 100/60 to > 125/85, but Sometimes I go up to 160/110 for a short time and to > 140/90 even > for some hours. NOthing compared to the " real Conn's " , but it's quite > exhausting if you're used to 100/60. > > For the potassium I just keep nutrient supply on hand whereever I go > and Eat > loaads of potasium rich fruit and veggies. It might be a more > psychological > thing though, because I also have Magnesium problems and my > potassium is > fine in 75% of the blood/urine tests. > > Can't say much for the rest and I really am a weird case, but your > questions > just striked on me, so I thought about telling what I got to know > during the > past few months - even if it is all very confusing. > But as for me, I'm pretty fine again after a 6 months period of just > running > from doc to doc to hospital and hospital. I'll never be completely > healthy > again and I'll probably won't get a good diagnosis for years or even > never, > as I'm a weird case in just everything but I can walk, work, live > again - so > everything is managable. And sometimes you just have to accept not > being > normal - so try everything you can get medicinally, but if you can't > go > further, just find your own solutions. > > Good luck > > Eva > > 2009/3/20 cwguin <cwguin@...> > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > consultation fee, so would like to ask group my few general > questions. > > Appreciative of replies - > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > hyperaldosteronism without being symptomatically hypertensive or > > hypokalemic? > > > > 2. Can periodic, temporary slight to moderate increases in blood > pressure > > and/or decreases in potassium be attributed to Conn's/primary > > hyperaldosteronism? > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > is it > > experienced and mamaged? > > > > 4. What are the " personality changes " sometimes mentioned in > literature > > associated with Conn's/hyperaldosteronism? How are they > experienced and > > managed? > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > by diet > > and life style modifications alone? > > > > 5. Any recommendations of doctor's/medical facilities on the East > Coast of > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > Ahead of time - thanks for your time and consideration > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 There is a national registry of PA with over 600 just reported. See PUBMED FOR recent articles On PA. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Mar 20, 2009, at 6:00 PM, Eva <eva.weltweit@...> wrote: > I can't reply to all of your questions but just to 1 and 2: > > 1. There are (at least here in Germany) several (4 or 5) cases of > people > (Including myself) diagnosed with Conn's first without being > continuelly > hypertensive and hypokalemic. In all of those cases known to me > people were > ultimately diagnosed with nothing even if their blood clearly shows > Primary > Hyperaldosteronism. The exclusion was done via Fludrocortison- > surpression > test - so be sure you get that. The doctos here don't know where > exactly > those high aldosterone (and often low renin) cases come from, but > they tell > me every time it's neither the adrenal glands nor some kind of > secondary > hyperaldosteronism, as beside the endocrinologic hypes I'm completely > healthy. My doc tells me, he'll keep thinking about it, but as the > Pseudo-Conn's are even less than the Conn's, I shouldn't hope for a > quick > solution. > > 2. I do sufer from temporary increases of blood pressure and quite > often > from potassium decreases. For the blood pressure I try to keep my > natrium in > check and do more exercise again, even if it's hard. went up from > 100/60 to > 125/85, but Sometimes I go up to 160/110 for a short time and to > 140/90 even > for some hours. NOthing compared to the " real Conn's " , but it's quite > exhausting if you're used to 100/60. > > For the potassium I just keep nutrient supply on hand whereever I go > and Eat > loaads of potasium rich fruit and veggies. It might be a more > psychological > thing though, because I also have Magnesium problems and my > potassium is > fine in 75% of the blood/urine tests. > > Can't say much for the rest and I really am a weird case, but your > questions > just striked on me, so I thought about telling what I got to know > during the > past few months - even if it is all very confusing. > But as for me, I'm pretty fine again after a 6 months period of just > running > from doc to doc to hospital and hospital. I'll never be completely > healthy > again and I'll probably won't get a good diagnosis for years or even > never, > as I'm a weird case in just everything but I can walk, work, live > again - so > everything is managable. And sometimes you just have to accept not > being > normal - so try everything you can get medicinally, but if you can't > go > further, just find your own solutions. > > Good luck > > Eva > > 2009/3/20 cwguin <cwguin@...> > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > consultation fee, so would like to ask group my few general > questions. > > Appreciative of replies - > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > hyperaldosteronism without being symptomatically hypertensive or > > hypokalemic? > > > > 2. Can periodic, temporary slight to moderate increases in blood > pressure > > and/or decreases in potassium be attributed to Conn's/primary > > hyperaldosteronism? > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > is it > > experienced and mamaged? > > > > 4. What are the " personality changes " sometimes mentioned in > literature > > associated with Conn's/hyperaldosteronism? How are they > experienced and > > managed? > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > by diet > > and life style modifications alone? > > > > 5. Any recommendations of doctor's/medical facilities on the East > Coast of > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > Ahead of time - thanks for your time and consideration > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Again everyone with PA was not born with HTN or low K --- They evolved from that to stage 4. Most do not evolve to this stage. Full blown PA is just the tip of the iceberg. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Mar 20, 2009, at 6:00 PM, Eva <eva.weltweit@...> wrote: > I can't reply to all of your questions but just to 1 and 2: > > 1. There are (at least here in Germany) several (4 or 5) cases of > people > (Including myself) diagnosed with Conn's first without being > continuelly > hypertensive and hypokalemic. In all of those cases known to me > people were > ultimately diagnosed with nothing even if their blood clearly shows > Primary > Hyperaldosteronism. The exclusion was done via Fludrocortison- > surpression > test - so be sure you get that. The doctos here don't know where > exactly > those high aldosterone (and often low renin) cases come from, but > they tell > me every time it's neither the adrenal glands nor some kind of > secondary > hyperaldosteronism, as beside the endocrinologic hypes I'm completely > healthy. My doc tells me, he'll keep thinking about it, but as the > Pseudo-Conn's are even less than the Conn's, I shouldn't hope for a > quick > solution. > > 2. I do sufer from temporary increases of blood pressure and quite > often > from potassium decreases. For the blood pressure I try to keep my > natrium in > check and do more exercise again, even if it's hard. went up from > 100/60 to > 125/85, but Sometimes I go up to 160/110 for a short time and to > 140/90 even > for some hours. NOthing compared to the " real Conn's " , but it's quite > exhausting if you're used to 100/60. > > For the potassium I just keep nutrient supply on hand whereever I go > and Eat > loaads of potasium rich fruit and veggies. It might be a more > psychological > thing though, because I also have Magnesium problems and my > potassium is > fine in 75% of the blood/urine tests. > > Can't say much for the rest and I really am a weird case, but your > questions > just striked on me, so I thought about telling what I got to know > during the > past few months - even if it is all very confusing. > But as for me, I'm pretty fine again after a 6 months period of just > running > from doc to doc to hospital and hospital. I'll never be completely > healthy > again and I'll probably won't get a good diagnosis for years or even > never, > as I'm a weird case in just everything but I can walk, work, live > again - so > everything is managable. And sometimes you just have to accept not > being > normal - so try everything you can get medicinally, but if you can't > go > further, just find your own solutions. > > Good luck > > Eva > > 2009/3/20 cwguin <cwguin@...> > > > Am new. Only have a few questions at this time. Declined Dr. Grim's > > consultation fee, so would like to ask group my few general > questions. > > Appreciative of replies - > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > hyperaldosteronism without being symptomatically hypertensive or > > hypokalemic? > > > > 2. Can periodic, temporary slight to moderate increases in blood > pressure > > and/or decreases in potassium be attributed to Conn's/primary > > hyperaldosteronism? > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > is it > > experienced and mamaged? > > > > 4. What are the " personality changes " sometimes mentioned in > literature > > associated with Conn's/hyperaldosteronism? How are they > experienced and > > managed? > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > by diet > > and life style modifications alone? > > > > 5. Any recommendations of doctor's/medical facilities on the East > Coast of > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > Ahead of time - thanks for your time and consideration > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 I only ever took Fludrocortison during the suppression test, I'm also off Hydrocortison for years now. I only take Euthyrox and get weekly B12-injections. Both autoimmune-diseases. I don't get anything against Conn, was only told to watch my Kalium intake and that I can come back if something gets worse. I also had gen diagnostics, and am the only person in my family with endocrine problems. No hypertension either. I've read your articles several times and appreciate your work. Still I think I don't fit in and the doctors seem to agree. But that might be because of the mix of all the problems. Thanks also for the comment about the non-existing relation between adrenal gland size (or view in MRIs) and hyperlpasia, that one really helped me, didn't get that clear. I might get another appointment in hospital in 2010, but right now no-one will really be willing to treat me as long as both blood pressure and potassium are still fine. Thnks for everything. 2009/3/22 Clarence Grim <lowerbp2@...> > Are you taking fludro now every day? > > On Mar 21, 2009, at 6:01 PM, Eva wrote: > > > Dr. Grim, > > > > I appreciate your opinion and efforts. I already discussed your > > work and the > > possibility of Early Conn's with my doctors. I don't believe they're > > confused as they're in Conn-research themselves, have large > > databases of > > Conn-patients and I have seen loads of confused endocrinologists > > before. > > > > Beside Fludrocortison-sup and saline injection test both being > > negative > > their main reason is that I have high Aldosterone measured since > > 2003 and > > that I have this really weird history of Hypocortisolism, which no > > one to > > date can't explain either. > > > > Latest suggestion was to go and see a Nephrologist if the kalium > > gets worse, > > but I have seen enough hospitals for now and am at least fine > > enough to go > > back to work. > > > > Can't give you the latest numbers though, as I haven't received the > > final > > report from hospital yet (German hospitals are really really slow with > > that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was > > at 11,9 > > pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ > > ml, Renin > > at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 > > of 187. > > Renin is not stated as this was only to test if I needed to take > > Fludrocortison aditionally to the normal Hydrocortison I had to > > take because > > of the Hypocortisolism. > > > > But as always, I don't want to confuse anybody, it seems as I'm > > really some > > kind of weird joke from the universe or maybe as one doctor once > > suggested > > my blood samples were confused all the time. > > > > I'll keep you updated when I get my hospital letter, the doc wanted > > to think > > about my creative adrenal glands further, so it might take quite > > some time. > > > > Thanks for your effort, > > > > Eva > > > > . > > > > 2009/3/21 Clarence Grim <lowerbp2@... <lowerbp2%40mac.com>> > > > > > > > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > > > 1. There are (at least here in Germany) several (4 or 5) cases of > > > > people > > > > (Including myself) diagnosed with Conn's first without being > > > > continuelly > > > > hypertensive and hypokalemic. In all of those cases known to me > > > > people were > > > > ultimately diagnosed with nothing even if their blood clearly > > shows > > > > Primary > > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > > surpression > > > > test - so be sure you get that. The doctos here don't know where > > > > exactly > > > > those high aldosterone (and often low renin) cases come from, but > > > > they tell > > > > me every time it's neither the adrenal glands nor some kind of > > > > secondary > > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > > completely > > > > healthy. My doc tells me, he'll keep thinking about it, but as the > > > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope > > for a > > > > quick > > > > solution. > > > > > > > > > > > Look at my article and you will see why many Drs are confused > > about > > > > early Conn's. > > > > > > > > > > > 2. I do sufer from temporary increases of blood pressure and quite > > > > often > > > > from potassium decreases. For the blood pressure I try to keep my > > > > natrium in > > > > check and do more exercise again, even if it's hard. went up from > > > > 100/60 to > > > > 125/85, but Sometimes I go up to 160/110 for a short time and to > > > > 140/90 even > > > > for some hours. NOthing compared to the " real Conn's " , but it's > > quite > > > > exhausting if you're used to 100/60. > > > > > > > > > > > Early Conn's IMHO > > > > > > > > > > > > > > > For the potassium I just keep nutrient supply on hand whereever I > > > > go and Eat > > > > loaads of potasium rich fruit and veggies. It might be a more > > > > psychological > > > > thing though, because I also have Magnesium problems and my > > > > potassium is > > > > fine in 75% of the blood/urine tests. > > > > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > > > > > Can't say much for the rest and I really am a weird case, but your > > > > questions > > > > just striked on me, so I thought about telling what I got to know > > > > during the > > > > past few months - even if it is all very confusing. > > > > But as for me, I'm pretty fine again after a 6 months period of > > > > just running > > > > from doc to doc to hospital and hospital. I'll never be completely > > > > healthy > > > > again and I'll probably won't get a good diagnosis for years or > > > > even never, > > > > as I'm a weird case in just everything but I can walk, work, live > > > > again - so > > > > everything is managable. And sometimes you just have to accept not > > > > being > > > > normal - so try everything you can get medicinally, but if you > > > > can't go > > > > further, just find your own solutions. > > > > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor supp > > > tests. Gave them up 25 years ago. Saline infusion much quicker and > > > safer. > > > > > > > luck > > > > > > > > Eva > > > > > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40> <cwguin% > 40>> > > > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > > Grim's > > > > > consultation fee, so would like to ask group my few general > > > > questions. > > > > > Appreciative of replies - > > > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/primary > > > > > hyperaldosteronism without being symptomatically hypertensive or > > > > > hypokalemic? > > > > > > > > > > 2. Can periodic, temporary slight to moderate increases in blood > > > > pressure > > > > > and/or decreases in potassium be attributed to Conn's/primary > > > > > hyperaldosteronism? > > > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If so, how > > > > is it > > > > > experienced and mamaged? > > > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > > literature > > > > > associated with Conn's/hyperaldosteronism? How are they > > > > experienced and > > > > > managed? > > > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently managed > > > > by diet > > > > > and life style modifications alone? > > > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > > East > > > > Coast of > > > > > the USA sufficient for diagnosing/treating adrenal disorders? > > > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Early PA and even later can be kept NT and NK by diet. DASH; CE Grim MD On Mar 22, 2009, at 3:22 PM, Eva wrote: > I only ever took Fludrocortison during the suppression test, I'm > also off > Hydrocortison for years now. I only take Euthyrox and get weekly > B12-injections. Both autoimmune-diseases. > > I don't get anything against Conn, was only told to watch my Kalium > intake > and that I can come back if something gets worse. > > I also had gen diagnostics, and am the only person in my family with > endocrine problems. No hypertension either. > > I've read your articles several times and appreciate your work. > Still I > think I don't fit in and the doctors seem to agree. But that might be > because of the mix of all the problems. > > Thanks also for the comment about the non-existing relation between > adrenal > gland size (or view in MRIs) and hyperlpasia, that one really > helped me, > didn't get that clear. > > I might get another appointment in hospital in 2010, but right now > no-one > will really be willing to treat me as long as both blood pressure and > potassium are still fine. > > Thnks for everything. > > 2009/3/22 Clarence Grim <lowerbp2@...> > > > Are you taking fludro now every day? > > > > On Mar 21, 2009, at 6:01 PM, Eva wrote: > > > > > Dr. Grim, > > > > > > I appreciate your opinion and efforts. I already discussed your > > > work and the > > > possibility of Early Conn's with my doctors. I don't believe > they're > > > confused as they're in Conn-research themselves, have large > > > databases of > > > Conn-patients and I have seen loads of confused endocrinologists > > > before. > > > > > > Beside Fludrocortison-sup and saline injection test both being > > > negative > > > their main reason is that I have high Aldosterone measured since > > > 2003 and > > > that I have this really weird history of Hypocortisolism, which no > > > one to > > > date can't explain either. > > > > > > Latest suggestion was to go and see a Nephrologist if the kalium > > > gets worse, > > > but I have seen enough hospitals for now and am at least fine > > > enough to go > > > back to work. > > > > > > Can't give you the latest numbers though, as I haven't received > the > > > final > > > report from hospital yet (German hospitals are really really > slow with > > > that), in September 2008 Aldosterone was at 455,7 pg/ml, Renin was > > > at 11,9 > > > pg/ml, e.g. normal. 1 week before that, Aldosterone was at 288 pg/ > > > ml, Renin > > > at a non measurable <1 pg/ml. 2003 I got numbers of 145, and 2004 > > > of 187. > > > Renin is not stated as this was only to test if I needed to take > > > Fludrocortison aditionally to the normal Hydrocortison I had to > > > take because > > > of the Hypocortisolism. > > > > > > But as always, I don't want to confuse anybody, it seems as I'm > > > really some > > > kind of weird joke from the universe or maybe as one doctor once > > > suggested > > > my blood samples were confused all the time. > > > > > > I'll keep you updated when I get my hospital letter, the doc > wanted > > > to think > > > about my creative adrenal glands further, so it might take quite > > > some time. > > > > > > Thanks for your effort, > > > > > > Eva > > > > > > . > > > > > > 2009/3/21 Clarence Grim <lowerbp2@... <lowerbp2%40mac.com>> > > > > > > > > > > > On Mar 20, 2009, at 6:00 PM, Eva wrote: > > > > > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > > > > > 1. There are (at least here in Germany) several (4 or 5) > cases of > > > > > people > > > > > (Including myself) diagnosed with Conn's first without being > > > > > continuelly > > > > > hypertensive and hypokalemic. In all of those cases known > to me > > > > > people were > > > > > ultimately diagnosed with nothing even if their blood clearly > > > shows > > > > > Primary > > > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > > > surpression > > > > > test - so be sure you get that. The doctos here don't know > where > > > > > exactly > > > > > those high aldosterone (and often low renin) cases come > from, but > > > > > they tell > > > > > me every time it's neither the adrenal glands nor some kind of > > > > > secondary > > > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > > > completely > > > > > healthy. My doc tells me, he'll keep thinking about it, but > as the > > > > > Pseudo-Conn's are even less than the Conn's, I shouldn't hope > > > for a > > > > > quick > > > > > solution. > > > > > > > > > > > > > > Look at my article and you will see why many Drs are confused > > > about > > > > > early Conn's. > > > > > > > > > > > > > > 2. I do sufer from temporary increases of blood pressure > and quite > > > > > often > > > > > from potassium decreases. For the blood pressure I try to > keep my > > > > > natrium in > > > > > check and do more exercise again, even if it's hard. went > up from > > > > > 100/60 to > > > > > 125/85, but Sometimes I go up to 160/110 for a short time > and to > > > > > 140/90 even > > > > > for some hours. NOthing compared to the " real Conn's " , but > it's > > > quite > > > > > exhausting if you're used to 100/60. > > > > > > > > > > > > > > Early Conn's IMHO > > > > > > > > > > > > > > > > > > > For the potassium I just keep nutrient supply on hand > whereever I > > > > > go and Eat > > > > > loaads of potasium rich fruit and veggies. It might be a more > > > > > psychological > > > > > thing though, because I also have Magnesium problems and my > > > > > potassium is > > > > > fine in 75% of the blood/urine tests. > > > > > > > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > > > > > > > > > Can't say much for the rest and I really am a weird case, > but your > > > > > questions > > > > > just striked on me, so I thought about telling what I got > to know > > > > > during the > > > > > past few months - even if it is all very confusing. > > > > > But as for me, I'm pretty fine again after a 6 months > period of > > > > > just running > > > > > from doc to doc to hospital and hospital. I'll never be > completely > > > > > healthy > > > > > again and I'll probably won't get a good diagnosis for > years or > > > > > even never, > > > > > as I'm a weird case in just everything but I can walk, > work, live > > > > > again - so > > > > > everything is managable. And sometimes you just have to > accept not > > > > > being > > > > > normal - so try everything you can get medicinally, but if you > > > > > can't go > > > > > further, just find your own solutions. > > > > > > > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor > supp > > > > tests. Gave them up 25 years ago. Saline infusion much > quicker and > > > > safer. > > > > > > > > > luck > > > > > > > > > > Eva > > > > > > > > > > 2009/3/20 cwguin <cwguin@... <cwguin%40> > <cwguin% > > 40>> > > > > > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > > > Grim's > > > > > > consultation fee, so would like to ask group my few general > > > > > questions. > > > > > > Appreciative of replies - > > > > > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/ > primary > > > > > > hyperaldosteronism without being symptomatically > hypertensive or > > > > > > hypokalemic? > > > > > > > > > > > > 2. Can periodic, temporary slight to moderate increases > in blood > > > > > pressure > > > > > > and/or decreases in potassium be attributed to Conn's/ > primary > > > > > > hyperaldosteronism? > > > > > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldosteronism? If > so, how > > > > > is it > > > > > > experienced and mamaged? > > > > > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > > > literature > > > > > > associated with Conn's/hyperaldosteronism? How are they > > > > > experienced and > > > > > > managed? > > > > > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently > managed > > > > > by diet > > > > > > and life style modifications alone? > > > > > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > > > East > > > > > Coast of > > > > > > the USA sufficient for diagnosing/treating adrenal > disorders? > > > > > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Dr. Grim: What are NT and NK abbreviations for? Does this mean that diet alone--without K supplements and without spiro and without BP meds could control PHA in some people? > > > > > > > > > I can't reply to all of your questions but just to 1 and 2: > > > > > > > > > > 1. There are (at least here in Germany) several (4 or 5) > cases of > > > > > people > > > > > (Including myself) diagnosed with Conn's first without being > > > > > continuelly > > > > > hypertensive and hypokalemic. In all of those cases known > to me > > > > > people were > > > > > ultimately diagnosed with nothing even if their blood clearly > > > shows > > > > > Primary > > > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- > > > > > surpression > > > > > test - so be sure you get that. The doctos here don't know > where > > > > > exactly > > > > > those high aldosterone (and often low renin) cases come > from, but > > > > > they tell > > > > > me every time it's neither the adrenal glands nor some kind of > > > > > secondary > > > > > hyperaldosteronism, as beside the endocrinologic hypes I'm > > > completely > > > > > healthy. My doc tells me, he'll keep thinking about it, but > as the > > > > > Pseudo-Conn' s are even less than the Conn's, I shouldn't hope > > > for a > > > > > quick > > > > > solution. > > > > > > > > > > > > > > Look at my article and you will see why many Drs are confused > > > about > > > > > early Conn's. > > > > > > > > > > > > > > 2. I do sufer from temporary increases of blood pressure > and quite > > > > > often > > > > > from potassium decreases. For the blood pressure I try to > keep my > > > > > natrium in > > > > > check and do more exercise again, even if it's hard. went > up from > > > > > 100/60 to > > > > > 125/85, but Sometimes I go up to 160/110 for a short time > and to > > > > > 140/90 even > > > > > for some hours. NOthing compared to the " real Conn's " , but > it's > > > quite > > > > > exhausting if you're used to 100/60. > > > > > > > > > > > > > > Early Conn's IMHO > > > > > > > > > > > > > > > > > > > For the potassium I just keep nutrient supply on hand > whereever I > > > > > go and Eat > > > > > loaads of potasium rich fruit and veggies. It might be a more > > > > > psychological > > > > > thing though, because I also have Magnesium problems and my > > > > > potassium is > > > > > fine in 75% of the blood/urine tests. > > > > > > > > > > > > > > This is why we recommend DASHing. > > > > > > > > > > > > > > > > > > > Can't say much for the rest and I really am a weird case, > but your > > > > > questions > > > > > just striked on me, so I thought about telling what I got > to know > > > > > during the > > > > > past few months - even if it is all very confusing. > > > > > But as for me, I'm pretty fine again after a 6 months > period of > > > > > just running > > > > > from doc to doc to hospital and hospital. I'll never be > completely > > > > > healthy > > > > > again and I'll probably won't get a good diagnosis for > years or > > > > > even never, > > > > > as I'm a weird case in just everything but I can walk, > work, live > > > > > again - so > > > > > everything is managable. And sometimes you just have to > accept not > > > > > being > > > > > normal - so try everything you can get medicinally, but if you > > > > > can't go > > > > > further, just find your own solutions. > > > > > > > > > > > > > > Once again you have early Conn's. > > > > > > > > > > > > > > > > > > > > > > > > > > > Can you give us your renin and also numbers. I don't do fluor > supp > > > > tests. Gave them up 25 years ago. Saline infusion much > quicker and > > > > safer. > > > > > > > > > luck > > > > > > > > > > Eva > > > > > > > > > > 2009/3/20 cwguin <cwguin (DOT) com <cwguin%40. com> > <cwguin% > > 40> > > > > > > > > > > > > Am new. Only have a few questions at this time. Declined Dr. > > > Grim's > > > > > > consultation fee, so would like to ask group my few general > > > > > questions. > > > > > > Appreciative of replies - > > > > > > > > > > > > 1. Can someone have apparent clinical evidence of Conn's/ > primary > > > > > > hyperaldosteronism without being symptomatically > hypertensive or > > > > > > hypokalemic? > > > > > > > > > > > > 2. Can periodic, temporary slight to moderate increases > in blood > > > > > pressure > > > > > > and/or decreases in potassium be attributed to Conn's/ > primary > > > > > > hyperaldosteronism? > > > > > > > > > > > > 3. Is anxiety a symptom of Conn's/hyperaldoste ronism? If > so, how > > > > > is it > > > > > > experienced and mamaged? > > > > > > > > > > > > 4. What are the " personality changes " sometimes mentioned in > > > > > literature > > > > > > associated with Conn's/hyperaldoste ronism? How are they > > > > > experienced and > > > > > > managed? > > > > > > > > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently > managed > > > > > by diet > > > > > > and life style modifications alone? > > > > > > > > > > > > 5. Any recommendations of doctor's/medical facilities on the > > > East > > > > > Coast of > > > > > > the USA sufficient for diagnosing/treating adrenal > disorders? > > > > > > > > > > > > Ahead of time - thanks for your time and consideration > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 NT = normal BP NK normal K It almost certainly means that but most can't tolerate the low sodium part for a long time it seems. This has never been better documented than what a number of our own folks here have reported. But here most have reported dramatic turn arounds with simultaneous spiro or adding DASH to spiro. If we still had good metabolic research units that we could fund I would set up one that would do this on a research basis for all who join our site with this problem to test the Ho that DASH or Rice would control most PAs without drugs. Most such research units have disappeared as NIH has closed them all down to do what is now called Translational Research. If one wants to try this approach I would recommend discussing it with your health care team (who will be very sceptical) and then try the low sodium DASH first using the 14 day trial in the book but do it for up to 6 weeks and if that did not do (NT and NK) it then the Rice-Fruit Diet of Kempner (see ricediet.com) would be the next step. If that fails then try spiro, if that fails then Inspra, if that fails then the Grim combination of combinations in my difficult HTN paper in files and if that fails then surgery. Clarence E. Grim, BS, MS, MD On Tuesday, March 24, 2009, at 11:31AM, " Callie " <callie.nelle@...> wrote: >Dr. Grim: What are NT and NK abbreviations for? Does this mean that diet alone--without K supplements and without spiro and without BP meds could control PHA in some people? > > >> > > > >> > > > > I can't reply to all of your questions but just to 1 and 2: >> > > > > >> > > > > 1. There are (at least here in Germany) several (4 or 5) >> cases of >> > > > > people >> > > > > (Including myself) diagnosed with Conn's first without being >> > > > > continuelly >> > > > > hypertensive and hypokalemic. In all of those cases known >> to me >> > > > > people were >> > > > > ultimately diagnosed with nothing even if their blood clearly >> > > shows >> > > > > Primary >> > > > > Hyperaldosteronism. The exclusion was done via Fludrocortison- >> > > > > surpression >> > > > > test - so be sure you get that. The doctos here don't know >> where >> > > > > exactly >> > > > > those high aldosterone (and often low renin) cases come >> from, but >> > > > > they tell >> > > > > me every time it's neither the adrenal glands nor some kind of >> > > > > secondary >> > > > > hyperaldosteronism, as beside the endocrinologic hypes I'm >> > > completely >> > > > > healthy. My doc tells me, he'll keep thinking about it, but >> as the >> > > > > Pseudo-Conn' s are even less than the Conn's, I shouldn't hope >> > > for a >> > > > > quick >> > > > > solution. >> > > > > >> > > > >> > > > > Look at my article and you will see why many Drs are confused >> > > about >> > > > > early Conn's. >> > > > > >> > > > >> > > > > 2. I do sufer from temporary increases of blood pressure >> and quite >> > > > > often >> > > > > from potassium decreases. For the blood pressure I try to >> keep my >> > > > > natrium in >> > > > > check and do more exercise again, even if it's hard. went >> up from >> > > > > 100/60 to >> > > > > 125/85, but Sometimes I go up to 160/110 for a short time >> and to >> > > > > 140/90 even >> > > > > for some hours. NOthing compared to the " real Conn's " , but >> it's >> > > quite >> > > > > exhausting if you're used to 100/60. >> > > > > >> > > > >> > > > > Early Conn's IMHO >> > > > > >> > > > >> > > > > >> > > > > For the potassium I just keep nutrient supply on hand >> whereever I >> > > > > go and Eat >> > > > > loaads of potasium rich fruit and veggies. It might be a more >> > > > > psychological >> > > > > thing though, because I also have Magnesium problems and my >> > > > > potassium is >> > > > > fine in 75% of the blood/urine tests. >> > > > > >> > > > >> > > > > This is why we recommend DASHing. >> > > > > >> > > > >> > > > > >> > > > > Can't say much for the rest and I really am a weird case, >> but your >> > > > > questions >> > > > > just striked on me, so I thought about telling what I got >> to know >> > > > > during the >> > > > > past few months - even if it is all very confusing. >> > > > > But as for me, I'm pretty fine again after a 6 months >> period of >> > > > > just running >> > > > > from doc to doc to hospital and hospital. I'll never be >> completely >> > > > > healthy >> > > > > again and I'll probably won't get a good diagnosis for >> years or >> > > > > even never, >> > > > > as I'm a weird case in just everything but I can walk, >> work, live >> > > > > again - so >> > > > > everything is managable. And sometimes you just have to >> accept not >> > > > > being >> > > > > normal - so try everything you can get medicinally, but if you >> > > > > can't go >> > > > > further, just find your own solutions. >> > > > > >> > > > >> > > > > Once again you have early Conn's. >> > > > > >> > > > >> > > > > >> > > > >> > > > > >> > > > Can you give us your renin and also numbers. I don't do fluor >> supp >> > > > tests. Gave them up 25 years ago. Saline infusion much >> quicker and >> > > > safer. >> > > > >> > > > > luck >> > > > > >> > > > > Eva >> > > > > >> > > > > 2009/3/20 cwguin <cwguin (DOT) com <cwguin%40. com> >> <cwguin% >> > 40> > >> > > > > >> > > > > > Am new. Only have a few questions at this time. Declined Dr. >> > > Grim's >> > > > > > consultation fee, so would like to ask group my few general >> > > > > questions. >> > > > > > Appreciative of replies - >> > > > > > >> > > > > > 1. Can someone have apparent clinical evidence of Conn's/ >> primary >> > > > > > hyperaldosteronism without being symptomatically >> hypertensive or >> > > > > > hypokalemic? >> > > > > > >> > > > > > 2. Can periodic, temporary slight to moderate increases >> in blood >> > > > > pressure >> > > > > > and/or decreases in potassium be attributed to Conn's/ >> primary >> > > > > > hyperaldosteronism? >> > > > > > >> > > > > > 3. Is anxiety a symptom of Conn's/hyperaldoste ronism? If >> so, how >> > > > > is it >> > > > > > experienced and mamaged? >> > > > > > >> > > > > > 4. What are the " personality changes " sometimes mentioned in >> > > > > literature >> > > > > > associated with Conn's/hyperaldoste ronism? How are they >> > > > > experienced and >> > > > > > managed? >> > > > > > >> > > > > > 5. Can Conn's/primary hyperaldosteronism be sufficiently >> managed >> > > > > by diet >> > > > > > and life style modifications alone? >> > > > > > >> > > > > > 5. Any recommendations of doctor's/medical facilities on the >> > > East >> > > > > Coast of >> > > > > > the USA sufficient for diagnosing/treating adrenal >> disorders? >> > > > > > >> > > > > > Ahead of time - thanks for your time and consideration >> > > > > > >> > > > > > >> > > > > > >> > > > > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Have your doctor contact Dr. Burton Berkson who has spoken at the last 2 USA LDN Conferences and the 1st European LDN Conference where Berkson mentions his success with LDN not only for pancreatic cancer but also for many RA and Lupus patients. Berkson will not mind speaking to your physician. Dr. Burton Berkson www.drberkson.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Hello and welcome,  We see Dr. (ID/Immunology doctor) at Packard Children's Hospital at Stanford. If you go the ENT route, we see Dr. Messner also Packard Children's Hospital at Stanford. Their contact info is on the hospital website. Dr. diagnosed our son with  after blood work and genetic testing, both of which he tested right away. Dr. Messner has treated some kids on this board and is familiar with as well. I know other kids from this board have been treated at UCSF and Oakland Children's as well.   Good luck, Ruthie, mom to , age 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Hi Janelle Our daughter never had mouth sores, in fact fevers were her only symptom for a long time. She then started developing joint pain, mainly in her legs/knees. Our paed-rheum said at the time that it was normal to develop more symptoms as time goes on. We had T & A in March 2008 and have not had a fever since. Hopefully it'll stay that way! Best regards Inga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 The year my daughter started fevering we didn't observe mouth sores for 4 to 5 months. Best wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2009 Report Share Posted July 7, 2009 My 5 yr old never had mouth sores with her fever episodes. We had seen Dr Koltai at Stanford. He said before I opened my mouth to ask if he is familiar with it . He has removed Katya's tonsils, she has been episode free sinse Feb2009. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2009 Report Share Posted July 7, 2009 My 5 yr old never had mouth sores with her fever episodes. We had seen Dr Koltai at Stanford. He said before I opened my mouth to ask if he is familiar with it . He has removed Katya's tonsils, she has been episode free sinse Feb2009. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 You can order the 50mg naltrexone pills from All Day Chemist (cheaper) or River Pharmacy, then dissolve a tablet in distilled water and make your own liquid LDN. You don't need a script. This is the cheapest way to take it. Annette > > Hi All, > > I am new here and I have some questions. I'm super excited as I thought I had tried just about everything out there. > > Has anyone tried LDN for celiac and/or rhumatoid arthritis? if so, what has been your experience? > > What if any are the side effects? I didn't find much info about it at the low doeses (I'm hoping that's becase there are none > > Can you order it w/o perscription? > > Also I saw on the LDN page that some docs will do a phone consult for scripts. Is that so? How can I find one? We are on a military base and I wonder if asking for this perscription may be difficult (although I can't imagine why based on what they perscribe to other people for lesser ailments) > > Thanks for any info. I appriciate it. > > Sincerely, > > > > > > > > ----- Original Message ----- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Thanks . As I wrote in another message just now, I'm having some trouble understanding guts issues but think I'm making some progress - spurred on by the hospital just having found I've got an ulcer in the colon.MargaretFrom: 4jleos <4jleos@...>Margaret Schooling <mschooling@...>Sent: Thursday, August 6, 2009 2:13:50 PMSubject: Re: [low dose naltrexone]new with questions  Margart thank you so much for your information. To answer your question celiac is an autoimmune disease and unfortuantly going gluten free is not a cure but a way do quell the autoimmune diseas for a while. After going gluten free, by son who also has celiac got JRA because often times people w/celiac get multiple autoimmune diseases. Celiac is specifically listed on the LDN.org site. as one of the autoimmune diseases that can behelped by LDN Thanks again, [low dose naltrexone]new with questions Hi All, I am new here and I have some questions. I'm super excited as I thought I had tried just about everything out there. Has anyone tried LDN for celiac and/or rhumatoid arthritis? if so, what has been your experience? What if any are the side effects? I didn't find much info about it at the low doeses (I'm hoping that's becase there are none Can you order it w/o perscription? Also I saw on the LDN page that some docs will do a phone consult for scripts. Is that so? How can I find one? We are on a military base and I wonder if asking for this perscription may be difficult (although I can't imagine why based on what they perscribe to other people for lesser ailments) Thanks for any info. I appriciate it. Sincerely, ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Well it is sort of the same. Celexa is the parent drug of Lex. But the Lex is supposed to have less side effects than the Celexa. I couldn't take Celexa either. Effexor XR worked for me. Just goes to show how different we all are. :-) The Effexor is a dual drug. Works on both Serotonin and Norepinephrine. Sometimes people need a drug that works on both. I was one of them. Barbara New with questions Hi all, My PDOC started me on 20mg of celexa about 2 1/2 months ago. In the beginning I had a few side effects, dry mouth, yawning, clenching my jaws, my skin breaking out, sweating.... I guess compared to what the medical insert said as big reactions, mine was nothing major, but as far as feelings go, about after 3 weeks, I was starting to feel a bit better. After maybe the 1 1/2 month mark, everything seemed to go down hill. I had no motivation, I didn't want to get up, I didn't want to move, I had no motivation to even pay the bills so you can imagine, there was absolutely no sex drive. I was miserable. I tried uping it to 40mg but it completely knocked me out. Is this normal???? I chose to stop the celexa and start back on some left over lex that I had from before and I'm slowly beginning to feel like I'm waking up. The PDOC originally put me on the celexa because the VA clinic doesn't carry lex and she told me that it was basically the same thing. (OH BOY, Did I learn better on that one). She did tell me that if the celexa didn't make me feel better, then she was going to try effexor on me. I have heard so many bad things about them. Which ones did you like better? Is what I was feeling with the Celexa normal? Thanks a bunch! Rusti ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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