Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for " msmith1928's story " to read it. - msmith1928 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying " No, thank you. " > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Only one caveat maybe - I "think" we see much more anxiety and not as much depression on here and I suspect many "depressions" are anxiety that they labeled depressed. But they are worlds apart. Anxiety seems to possibly have some foundation in the PA business though it looks like depression may not from the stories of the people on here. Maybe? I wonder if we should survey the weight of those on here (without names, of course). Those with weight issues talk about it, those without, don't. I am not overweight and was always called underweight growing up (you should see some of the crap coaches tried to get me to it to "put on bulk"). But because I am 5"10" 165lbs, it's not a concern so I don't even think to bring it up. I wonder what the common physical make up is with Conn's if there is one. Subject: Re: New Conn's PatientTo: hyperaldosteronism Date: Saturday, April 23, 2011, 10:30 AM Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 You are right we do have a lot of similarities!! I am having trouble looking at your story but I wanted to say thank you for what you did send. I now know I am not the only one going through this and founds someone with a very similar story. I felt like I was reading my own story! I will have to keep you posted on the ablastion. I just had it done on April 8th so I don't have much to offer as information after the procedure at this point. I feel so bad that you have been going through this since 1997 and just got diagnosed. I am wondering if I am sensitive to grains and sugars as well. I will give that a try. Like you I am active so gaining that much weight has been a very hard on me. Thanks so much, Kellie Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 I would be interested in that just so I know what kind of fight I have. Prior to this I was active (walking, hiking and biking). I am female - 5'5" and went from 170 to 190. Been on Weight Watchers since January and only lost three pounds. Getting back into all the physical activity now that I am stable!  Only one caveat maybe - I "think" we see much more anxiety and not as much depression on here and I suspect many "depressions" are anxiety that they labeled depressed. But they are worlds apart. Anxiety seems to possibly have some foundation in the PA business though it looks like depression may not from the stories of the people on here. Maybe?  I wonder if we should survey the weight of those on here (without names, of course). Those with weight issues talk about it, those without, don't. I am not overweight and was always called underweight growing up (you should see some of the crap coaches tried to get me to it to "put on bulk"). But because I am 5"10" 165lbs, it's not a concern so I don't even think to bring it up. I wonder what the common physical make up is with Conn's if there is one. Subject: Re: New Conn's Patient To: hyperaldosteronism Date: Saturday, April 23, 2011, 10:30 AM  Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 If you want pigs to gain fat you mus give them extra salt. Need I say more?Our longest pt on here is 26 years as I reCall back on Spiro again also I think b. I know the original Conn's also got HTN. But did not nave recutreent Conn's as we tested her. Also had diabetes a d renal failuire Thus was about 76 And her surgery was in 53 so that would be 24 years. Do the DASH at 1800 calories as in book and guarantee u will lose WT and DM and most of Bp and K problems. Someone just posted. 40lb WT loss inthe dash success stories. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 I think we have WT in our data base be sHRe every one fills in you data. See the welcome for details. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Only one caveat maybe - I "think" we see much more anxiety and not as much depression on here and I suspect many "depressions" are anxiety that they labeled depressed. But they are worlds apart. Anxiety seems to possibly have some foundation in the PA business though it looks like depression may not from the stories of the people on here. Maybe? I wonder if we should survey the weight of those on here (without names, of course). Those with weight issues talk about it, those without, don't. I am not overweight and was always called underweight growing up (you should see some of the crap coaches tried to get me to it to "put on bulk"). But because I am 5"10" 165lbs, it's not a concern so I don't even think to bring it up. I wonder what the common physical make up is with Conn's if there is one. Subject: Re: New Conn's PatientTo: hyperaldosteronism Date: Saturday, April 23, 2011, 10:30 AM Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Get the DASH BOOK TODAY AND do the 14 day trial as suggested in the welcome. Did u get the welcome?Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension I would be interested in that just so I know what kind of fight I have. Prior to this I was active (walking, hiking and biking). I am female - 5'5" and went from 170 to 190. Been on Weight Watchers since January and only lost three pounds. Getting back into all the physical activity now that I am stable! Only one caveat maybe - I "think" we see much more anxiety and not as much depression on here and I suspect many "depressions" are anxiety that they labeled depressed. But they are worlds apart. Anxiety seems to possibly have some foundation in the PA business though it looks like depression may not from the stories of the people on here. Maybe? I wonder if we should survey the weight of those on here (without names, of course). Those with weight issues talk about it, those without, don't. I am not overweight and was always called underweight growing up (you should see some of the crap coaches tried to get me to it to "put on bulk"). But because I am 5"10" 165lbs, it's not a concern so I don't even think to bring it up. I wonder what the common physical make up is with Conn's if there is one. Subject: Re: New Conn's Patient To: hyperaldosteronism Date: Saturday, April 23, 2011, 10:30 AM Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Migraines are common in PA in my experience and respond to MCB and DASHTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Hello! My history is a little complicated. Prior to last May I have been a long time sufferer of migraines. In the last few years the frequency and intensity magnified causing me to step down at my job. I was also treated very young for high blood pressure. I was on a low dose blood pressure medication from ages 18-32. Suddenly and for no reason my blood pressure plummeted. At that time I stopped the medication and my blood pressure ranged from normal to low. About five years ago I started taking Dyazide (water pill) for hand and feet swelling but the doctor could not find a reason as to why this was happening. All was well until last May. While at work I experienced dizziness, racing heart and felt like I was going to pass out. The security team took my vitals and my blood pressure and pulse were sky high. They made me go to the hospital where I found out my potassium was 2.3. I got to spend the day with two iv potassium bags. Since this was an isolated incident they told me to follow up with my family doctor. I was on potassium supplements for three weeks and all seemed to go back to normal. During our vacation in September late in the evening my heart started racing again. Since I was out of town in a remote area I was on the fence with finding a hospital. I decided not to go and the next two days I was fine. Unfortunately on the day of departure I felt horrible. I could tell my blood pressure was up, I had a hard time breathing and I had heart palpitations. Once I got back into town I went directly to the hospital. Potassium was 2.7 again. Same drill with the potassium iv bags. At that time the Doctor had a long talk with me about my family history and my history. She wanted me to follow up with my family doctor and get treated for Primary Aldostrerone. I was also told to quit the Dyazide immediately. That hospital visit put me 9 pounds heavier probably from the fluids and by not taking the Dyazide I put on 5 more pounds and have been unable to lose that weight. At the family doctor I actually tested negative for Primary Aldosterone so she referred me to an Endocrinologist. She ran the whole battery of tests and the only red flag was I was on the high end of normal for Primary Aldosterone. So we decided to do a test with Spironolactone 50mg twice a day. I started this on October 4th. On Thanksgiving Day I started having some of the same symptoms and went back to the hospital. My potassium was 3.0 and I was able to leave by taking my potassium supplements. We then went to 100 mg twice a day but this caused my lived enzymes to increase. Now I am at 100 mg in the morning and 50 mg in the evening which keeps my potassium bouncing around 4.0-4.5. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future. I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW. Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now. Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor. I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years? Any help or suggestions would be appreciated, Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Hello! My history is a little complicated. Prior to last May I have been a long time sufferer of migraines. In the last few years the frequency and intensity magnified causing me to step down at my job. I was also treated very young for high blood pressure. I was on a low dose blood pressure medication from ages 18-32. Suddenly and for no reason my blood pressure plummeted. At that time I stopped the medication and my blood pressure ranged from normal to low. About five years ago I started taking Dyazide (water pill) for hand and feet swelling but the doctor could not find a reason as to why this was happening. All was well until last May. While at work I experienced dizziness, racing heart and felt like I was going to pass out. The security team took my vitals and my blood pressure and pulse were sky high. They made me go to the hospital where I found out my potassium was 2.3. I got to spend the day with two iv potassium bags. Since this was an isolated incident they told me to follow up with my family doctor. I was on potassium supplements for three weeks and all seemed to go back to normal. Dx should have been made at this time During our vacation in September late in the evening my heart started racing again. Since I was out of town in a remote area I was on the fence with finding a hospital. I decided not to go and the next two days I was fine. Unfortunately on the day of departure I felt horrible. I could tell my blood pressure was up, I had a hard time breathing and I had heart palpitations. Once I got back into town I went directly to the hospital. Potassium was 2.7 again. Same drill with the potassium iv bags. At that time the Doctor had a long talk with me about my family history and my history. She wanted me to follow up with my family doctor and get treated for Primary Aldostrerone. I was also told to quit the Dyazide immediately. That hospital visit put me 9 pounds heavier probably from the fluids and by not taking the Dyazide I put on 5 more pounds and have been unable to lose that weight. Again Dxshould have been clear by now. At the family doctor I actually tested negative for Primary Aldosterone so she referred me to an Endocrinologist. Endo needs to read my article. She ran the whole battery of tests and the only red flag was I was on the high end of normal for Primary Aldosterone. So we decided to do a test with Spironolactone 50mg twice a day. I started this on October 4th. On Thanksgivin Day I started having some of the same symptoms and went back to the hospital. My potassium was 3.0 and I was able to leave by taking my potassium supplements. We then went to 100 mg twice a day but this caused my lived enzymes to increase. Now I am at 100 mg in the morning and 50 mg in the evening which keeps my potassium bouncing around 4.0-4.5. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future. I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW. Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now. Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor. I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years? Any help or suggestions would be appreciated, Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Send us reni and Aldo numbers when u can many don't know how to interpret. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Migraines are common in PA in my experience and respond to MCB and DASHTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Hello! My history is a little complicated. Prior to last May I have been a long time sufferer of migraines. In the last few years the frequency and intensity magnified causing me to step down at my job. I was also treated very young for high blood pressure. I was on a low dose blood pressure medication from ages 18-32. Suddenly and for no reason my blood pressure plummeted. At that time I stopped the medication and my blood pressure ranged from normal to low. About five years ago I started taking Dyazide (water pill) for hand and feet swelling but the doctor could not find a reason as to why this was happening. All was well until last May. While at work I experienced dizziness, racing heart and felt like I was going to pass out. The security team took my vitals and my blood pressure and pulse were sky high. They made me go to the hospital where I found out my potassium was 2.3. I got to spend the day with two iv potassium bags. Since this was an isolated incident they told me to follow up with my family doctor. I was on potassium supplements for three weeks and all seemed to go back to normal. During our vacation in September late in the evening my heart started racing again. Since I was out of town in a remote area I was on the fence with finding a hospital. I decided not to go and the next two days I was fine. Unfortunately on the day of departure I felt horrible. I could tell my blood pressure was up, I had a hard time breathing and I had heart palpitations. Once I got back into town I went directly to the hospital. Potassium was 2.7 again. Same drill with the potassium iv bags. At that time the Doctor had a long talk with me about my family history and my history. She wanted me to follow up with my family doctor and get treated for Primary Aldostrerone. I was also told to quit the Dyazide immediately. That hospital visit put me 9 pounds heavier probably from the fluids and by not taking the Dyazide I put on 5 more pounds and have been unable to lose that weight. At the family doctor I actually tested negative for Primary Aldosterone so she referred me to an Endocrinologist. She ran the whole battery of tests and the only red flag was I was on the high end of normal for Primary Aldosterone. So we decided to do a test with Spironolactone 50mg twice a day. I started this on October 4th. On Thanksgiving Day I started having some of the same symptoms and went back to the hospital. My potassium was 3.0 and I was able to leave by taking my potassium supplements. We then went to 100 mg twice a day but this caused my lived enzymes to increase. Now I am at 100 mg in the morning and 50 mg in the evening which keeps my potassium bouncing around 4.0-4.5. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future. I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW. Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now. Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor. I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years? Any help or suggestions would be appreciated, Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011     Thanks Dr. Grim! I printed out the 64 page document on the DASH diet and will definitely give this a try.     I am more optimistic now with the information you provided below about a patient living with Conn's for 20+ years.     I just don't want my quality of life to keep going down through the years. I still have lots I want to do. :-)    Kellie  If you want pigs to gain fat you mus give them extra salt. Need I say more? Our longest pt on here is 26 years as I reCall back on Spiro again also I think b. I know the original Conn's also got HTN.  But did not nave recutreent Conn's as we tested her. Also had diabetes a d renal failuire  Thus was about 76 And her surgery was in 53 so that would be 24 years. Do the DASH at 1800 calories as in book and guarantee u will lose WT and DM and most of Bp and K problems.  Someone just posted. 40lb WT loss inthe dash success stories. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 23, 2011, at 8:30 AM, msmith_1928 wrote:  Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011    Hi Dr. Grim,    Yes, I did get the welcome but I see I have a few more things to complete.    Thanks,     Kellie    Get the DASH BOOK TODAY AND do the 14 day trial as suggested in the welcome. Did u get the welcome? Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 23, 2011, at 10:33 AM, Kellie wrote:  I would be interested in that just so I know what kind of fight I have. Prior to this I was active (walking, hiking and biking). I am female - 5'5" and went from 170 to 190. Been on Weight Watchers since January and only lost three pounds. Getting back into all the physical activity now that I am stable!  Only one caveat maybe - I "think" we see much more anxiety and not as much depression on here and I suspect many "depressions" are anxiety that they labeled depressed. But they are worlds apart. Anxiety seems to possibly have some foundation in the PA business though it looks like depression may not from the stories of the people on here. Maybe?  I wonder if we should survey the weight of those on here (without names, of course). Those with weight issues talk about it, those without, don't. I am not overweight and was always called underweight growing up (you should see some of the crap coaches tried to get me to it to "put on bulk"). But because I am 5"10" 165lbs, it's not a concern so I don't even think to bring it up. I wonder what the common physical make up is with Conn's if there is one. Subject: Re: New Conn's Patient To: hyperaldosteronism Date: Saturday, April 23, 2011, 10:30 AM  Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 The book is worth the $8 and covers the science of DASH. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Thanks Dr. Grim! I printed out the 64 page document on the DASH diet and will definitely give this a try. I am more optimistic now with the information you provided below about a patient living with Conn's for 20+ years. I just don't want my quality of life to keep going down through the years. I still have lots I want to do. :-) Kellie If you want pigs to gain fat you mus give them extra salt. Need I say more? Our longest pt on here is 26 years as I reCall back on Spiro again also I think b. I know the original Conn's also got HTN. But did not nave recutreent Conn's as we tested her. Also had diabetes a d renal failuire Thus was about 76 And her surgery was in 53 so that would be 24 years. Do the DASH at 1800 calories as in book and guarantee u will lose WT and DM and most of Bp and K problems. Someone just posted. 40lb WT loss inthe dash success stories. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 23, 2011, at 8:30 AM, msmith_1928 wrote: Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 Good on the welcome. Note the abbrevs at the end. Take your time. There is a learning curve. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Hi Dr. Grim, Yes, I did get the welcome but I see I have a few more things to complete. Thanks, Kellie Get the DASH BOOK TODAY AND do the 14 day trial as suggested in the welcome. Did u get the welcome? Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 23, 2011, at 10:33 AM, Kellie wrote: I would be interested in that just so I know what kind of fight I have. Prior to this I was active (walking, hiking and biking). I am female - 5'5" and went from 170 to 190. Been on Weight Watchers since January and only lost three pounds. Getting back into all the physical activity now that I am stable! Only one caveat maybe - I "think" we see much more anxiety and not as much depression on here and I suspect many "depressions" are anxiety that they labeled depressed. But they are worlds apart. Anxiety seems to possibly have some foundation in the PA business though it looks like depression may not from the stories of the people on here. Maybe? I wonder if we should survey the weight of those on here (without names, of course). Those with weight issues talk about it, those without, don't. I am not overweight and was always called underweight growing up (you should see some of the crap coaches tried to get me to it to "put on bulk"). But because I am 5"10" 165lbs, it's not a concern so I don't even think to bring it up. I wonder what the common physical make up is with Conn's if there is one. Subject: Re: New Conn's Patient To: hyperaldosteronism Date: Saturday, April 23, 2011, 10:30 AM Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Bought the book!  The book is worth the $8 and covers the science of DASH. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 24, 2011, at 5:51 AM, Kellie wrote:      Thanks Dr. Grim! I printed out the 64 page document on the DASH diet and will definitely give this a try.     I am more optimistic now with the information you provided below about a patient living with Conn's for 20+ years.     I just don't want my quality of life to keep going down through the years. I still have lots I want to do. :-)    Kellie  If you want pigs to gain fat you mus give them extra salt. Need I say more? Our longest pt on here is 26 years as I reCall back on Spiro again also I think b. I know the original Conn's also got HTN.  But did not nave recutreent Conn's as we tested her. Also had diabetes a d renal failuire  Thus was about 76 And her surgery was in 53 so that would be 24 years. Do the DASH at 1800 calories as in book and guarantee u will lose WT and DM and most of Bp and K problems.  Someone just posted. 40lb WT loss inthe dash success stories. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 23, 2011, at 8:30 AM, msmith_1928 wrote:  Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Excellent. Will look forward to ur review. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Bought the book! The book is worth the $8 and covers the science of DASH. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 24, 2011, at 5:51 AM, Kellie wrote: Thanks Dr. Grim! I printed out the 64 page document on the DASH diet and will definitely give this a try. I am more optimistic now with the information you provided below about a patient living with Conn's for 20+ years. I just don't want my quality of life to keep going down through the years. I still have lots I want to do. :-) Kellie If you want pigs to gain fat you mus give them extra salt. Need I say more? Our longest pt on here is 26 years as I reCall back on Spiro again also I think b. I know the original Conn's also got HTN. But did not nave recutreent Conn's as we tested her. Also had diabetes a d renal failuire Thus was about 76 And her surgery was in 53 so that would be 24 years. Do the DASH at 1800 calories as in book and guarantee u will lose WT and DM and most of Bp and K problems. Someone just posted. 40lb WT loss inthe dash success stories. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 23, 2011, at 8:30 AM, msmith_1928 wrote: Wow, Kellie, you and I sure have some parallels in our stories. Please see my comments below. I've posted my whole story in the Files > Conns Stories section on the left sidebar, look for "msmith1928's story" to read it. - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding. > I am 41 years old and have never had kids. I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much - so there's a lot about us the experts don't know! > I just recently had an endometrial ablasion This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > I also started suffering from Hypoglycemia and my blood sugar was > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse. > I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > Bystolic and my AC1 number droped 1 point and I haven't had any > hypoglycemic incidents but the weight loss is SLOW. After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too. > Due to all the heart palpitations and what you experience with this > disease my anxiety is through the roof. I saw an Anxiety Doctor for > about three months but have stopped going now. I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > better? My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking. > Will I ever lose this weight? Will things get worse? My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > Is this a manageable disease? I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Just wanted to comment about the correlation between PA and menstural cycles. I was diagnosed with HTN in 2004 after the birth of baby #3. PA was diagnosed in 2007 8 months after baby #4. Miscarried baby #5 in 2008. After that noticed heavier periods. Began reading about progesterone and how it helped many of the symptoms I was having related to my cycle. Started using a natural progesterone cream and immediately noticed a huge difference and noticeably lighter periods. Two sis-in-laws had used synthetic progesterone and had horrible reactions hence my choice of the natural progesterone.Delivered baby#6 in late 2009 and a few months ago began with the heavy periods again. Started using the natural progesterone cream and it seems to be under control. Hope this helps someone. I too feel that there is a correlation between PA and menstrual cycles. Never had much of an issue as pregnancy always helps the PA and nursing keeps the progesterone levels naturally high for quite awhile. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future. I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW. Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now. Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor. I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years? Any help or suggestions would be appreciated, Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Progesterone cream should also block Aldo I suppose. But other risks as I recall Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Just wanted to comment about the correlation between PA and menstural cycles. I was diagnosed with HTN in 2004 after the birth of baby #3. PA was diagnosed in 2007 8 months after baby #4. Miscarried baby #5 in 2008. After that noticed heavier periods. Began reading about progesterone and how it helped many of the symptoms I was having related to my cycle. Started using a natural progesterone cream and immediately noticed a huge difference and noticeably lighter periods. Two sis-in-laws had used synthetic progesterone and had horrible reactions hence my choice of the natural progesterone.Delivered baby#6 in late 2009 and a few months ago began with the heavy periods again. Started using the natural progesterone cream and it seems to be under control. Hope this helps someone. I too feel that there is a correlation between PA and menstrual cycles. Never had much of an issue as pregnancy always helps the PA and nursing keeps the progesterone levels naturally high for quite awhile. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future. I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW. Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now. Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor. I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years? Any help or suggestions would be appreciated, Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Progesterone is a spironolactone agonist. I felt that spiro blocked my body's reception of progesterone. The result was polyps, a lining that would not shed, and eventually, a D & C. I am on Inspra now. Not sure my theory is correct. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim Progesterone cream should also block Aldo I suppose. But other risks as I recall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 can you update your story with this addition? Thanks. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Just wanted to comment about the correlation between PA and menstural cycles. I was diagnosed with HTN in 2004 after the birth of baby #3. PA was diagnosed in 2007 8 months after baby #4. Miscarried baby #5 in 2008. After that noticed heavier periods. Began reading about progesterone and how it helped many of the symptoms I was having related to my cycle. Started using a natural progesterone cream and immediately noticed a huge difference and noticeably lighter periods. Two sis-in-laws had used synthetic progesterone and had horrible reactions hence my choice of the natural progesterone.Delivered baby#6 in late 2009 and a few months ago began with the heavy periods again. Started using the natural progesterone cream and it seems to be under control. Hope this helps someone. I too feel that there is a correlation between PA and menstrual cycles. Never had much of an issue as pregnancy always helps the PA and nursing keeps the progesterone levels naturally high for quite awhile. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future. I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW. Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now. Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor. I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years? Any help or suggestions would be appreciated, Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Wow Val, that's a pretty extreme side effect! As a woman who only took spiro briefly before the gynecomastia pain and constant bleeding became problematic, I feel really lucky that the side effects prevented me from taking it long-term. Have you had any trouble with the Inspra? - msmith1928 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > > Progesterone is a spironolactone agonist. I felt that spiro blocked my body's reception of progesterone. The result was polyps, a lining that would not shed, and eventually, a D & C. I am on Inspra now. Not sure my theory is correct. > > Val > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim > > Progesterone cream should also block Aldo I suppose. But other risks as I recall > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 I do not know that spiro prevented reception of progesterone. I also have long-term, horribly treated Lyme disease and uterine polyps are know with Lyme. I haven't had any problem with Inspra except nausea at first. I'm going to try spiro again one of these days and see what happens. BTW, breast pain is common in the last 1/3 of the cycle - the period during which progesterone is at its highest. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of msmith_1928 Wow Val, that's a pretty extreme side effect! As a woman who only took spiro briefly before the gynecomastia pain and constant bleeding became problematic, I feel really lucky that the side effects prevented me from taking it long-term. Have you had any trouble with the Inspra? - msmith1928 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > > Progesterone is a spironolactone agonist. I felt that spiro blocked my body's reception of progesterone. The result was polyps, a lining that would not shed, and eventually, a D & C. I am on Inspra now. Not sure my theory is correct. > > Val > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim > > Progesterone cream should also block Aldo I suppose. But other risks as I recall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2011 Report Share Posted April 26, 2011 No Spiro and progesterone occupy the Aldo receptors and don't come lose easily thus blocking Aldo activation Of the Aldo receptor and blocks Aldo action. Thus they are MCBs. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension I do not know that spiro prevented reception of progesterone. I also have long-term, horribly treated Lyme disease and uterine polyps are know with Lyme. I haven't had any problem with Inspra except nausea at first. I'm going to try spiro again one of these days and see what happens. BTW, breast pain is common in the last 1/3 of the cycle - the period during which progesterone is at its highest. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of msmith_1928 Wow Val, that's a pretty extreme side effect! As a woman who only took spiro briefly before the gynecomastia pain and constant bleeding became problematic, I feel really lucky that the side effects prevented me from taking it long-term. Have you had any trouble with the Inspra? - msmith1928 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet > > Progesterone is a spironolactone agonist. I felt that spiro blocked my body's reception of progesterone. The result was polyps, a lining that would not shed, and eventually, a D & C. I am on Inspra now. Not sure my theory is correct. > > Val > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim > > Progesterone cream should also block Aldo I suppose. But other risks as I recall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2011 Report Share Posted April 26, 2011  Hi ,  I wish Doctor's were more open to that idea but all three of my doctor's (Family, ENDO, OBGYN) had never heard of a link before between the  two. Sometimes you have to go with your instinct and hopefully if anyone else is going through the same thing they can pass along the      information to their Doctor.  Kellie  Just wanted to comment about the correlation between PA and menstural cycles. I was diagnosed with HTN in 2004 after the birth of baby #3. PA was diagnosed in 2007 8 months after baby #4. Miscarried baby #5 in 2008. After that noticed heavier periods. Began reading about progesterone and how it helped many of the symptoms I was having related to my cycle. Started using a natural progesterone cream and immediately noticed a huge difference and noticeably lighter periods. Two sis-in-laws had used synthetic progesterone and had horrible reactions hence my choice of the natural progesterone. Delivered baby#6 in late 2009 and a few months ago began with the heavy periods again. Started using the natural progesterone cream and it seems to be under control. Hope this helps someone. I too feel that there is a correlation between PA and menstrual cycles. Never had much of an issue as pregnancy always helps the PA and nursing keeps the progesterone levels naturally high for quite awhile. All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. I am 41 years old and have never had kids. I just recently had an endometrial ablasion and found out I also had two polyps. Hopefully this gives me some type of relief in the future.  I also started suffering from Hypoglycemia and my blood sugar was dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach. I have joined Weight Watchers to aid in healthy eating and hopefully lose this weight I have gained since this all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication Bystolic and my AC1 number droped 1 point and I haven’t had any hypoglycemic incidents but the weight loss is SLOW.  Due to all the heart palpitations and what you experience with this disease my anxiety is through the roof. I saw an Anxiety Doctor for about three months but have stopped going now.  Currently I am on 100 mg Spiro in the morning and 50 mg of Spiro in the evenings. I am also on .5 mg Xanax three times a day. I did have a CT scan and I do not have a tumor.  I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel better? Will I ever lose this weight? Will things get worse? Is this a manageable disease? Will this be my life for the next 40 years?  Any help or suggestions would be appreciated, Kellie    Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2011 Report Share Posted April 26, 2011    I keep seeing references to Inspra. What is that used to treat?    I just had two polyps removed with my ablasion. I wonder if the spiro did that in the 6 months I have been on it?  Progesterone is a spironolactone agonist. I felt that spiro blocked my body's reception of progesterone. The result was polyps, a lining that would not shed, and eventually, a D & C. I am on Inspra now. Not sure my theory is correct.  Val  From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim  Progesterone cream should also block Aldo I suppose. But other risks as I recall Quote Link to comment Share on other sites More sharing options...
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