Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 not clear about prognosis yet. i live in a small town and the drs did not prep me for the test correctly according to my research. My alderterone is normal renin is low and cortisol is high but am tolk by dr in small town that is perfectly normal? Go figure. I am definately confused. I really need to find a good endochronologist and lots of new friends of my group here. I have no doubt you will all be lots of help and inspiration Thank you I am going in for a k check with my print out to make sure it is done right today. I bet that makes a difference. Ct scan in san francisco went to emergency room (5hr drive from home) shows both adrenal glands enlarged no specifics yet other than that trying to get records and a specialist. > How clear is the Dx fo Conn's? Need more details. Many will need a lot > more Sprio to get to goal. Have you been on more? > > > Be sure blood was drawn correctly to make sure they did not miss low K. See > our files on this. > > > > > > > > > > > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 Have you been tested for Cushing's yet? If your cortisol was high that would be a clue. I had normal aldosterone, low renin and high cortisol (at times). Cyclical cushings and most likely conns too. I found a good endocrinologist in LA. Pathology report said I had micronodular adrenal hyperplasia. It was causing my high blood pressure and a multitude of problems. Violet lisaconns <lisaconns@...> wrote: not clear about prognosis yet. i live in a small town and the drs did not prep me for the test correctly according to my research. My alderterone is normal renin is low and cortisol is high but am tolk by dr in small town that is perfectly normal? Go figure. I am definately confused. I really need to find a good endochronologist and lots of new friends of my group here. I have no doubt you will all be lots of help and inspiration Thank you I am going in for a k check with my print out to make sure it is done right today. I bet that makes a difference. Ct scan in san francisco went to emergency room (5hr drive from home) shows both adrenal glands enlarged no specifics yet other than that trying to get records and a specialist. > How clear is the Dx fo Conn's? Need more details. Many will need a lot > more Sprio to get to goal. Have you been on more? > > > Be sure blood was drawn correctly to make sure they did not miss low K. See > our files on this. > > > > > > > > > > > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 > > I am very new at this so please bear with me. I need an excellent > endochronologist in the San Francisco or Sacramento area as I am > having a hard time getting an appt. I am currently on 4 different > meds for bp and high amounts of k as my kidneys keep secreting it. > I am stable now with k and my bp but am having extreme fatigue and > sleeping sometimes 18 hrs a day. severe headaches and extreme > cramping even writing this i cramp. I feel like such a baby i have > never been ill and this is really throwing me off. please any > advice or info would be so greatly appreciated. i have my own > cleaning service and am not able to work. 2 beautiful kids and a > wonderful husband. life is on hold and we are all scared. meds are > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day, > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at > night, spironolactone 25mg at night all my symptoms came on very > sudden, paralysis, blurred vision, weakness, extreme fatigue, > migranes,very irritable(actually irritable tingling in hands and > feet blurred vision and headaches started it all and lasted about 2 > weeks before i was admitted to the critical care unit for 5 days.) > thank you all in advance i may not be able to reply due to cramping. > k is 4.4 now dont understand the cramping? again thank you all. Dear , I can really empathize with you. Your doctors seem to be leaving you out there without the help you need. Did your symptoms get worse after starting on spironolactone? I have tried it twice as it is the best drug for treating postassium and bp. Both times it increased nausea, virtigo, vision disturbances, weakness and other symptoms. I have now discontinued it and waiting for potassium report to see if I have to try another drug. Spironolactone will raise your potassium if the problem is aldosterone. It can also raise it too high in combination with other drugs(I just did that). It can also lower your sodium which is good if it doesn't lower it too much. You should check this regularly along with potassium. When I was going through this, my husband and I called it the merry- go-round. If you need to stop the spiro, you can take potassium supplements. I have been seeing a neurologist for about 3 years for headaches. Before I knew that I had PA, my headaches kept getting worse until I was having daily headaches. My neuroligist reduced the headaches to almost none, in a very short time with a low dose of elavil. Also, by increasing the dose to 70mg(this is still a low dose) I am having less pain in feet, legs, arms, and hands. You need immediate help from qualified doctors. Oceanside is too far for you in your condition but I know there are at least 2 others on this message board from the San Francisco area. One is Sapna_52 and the other is Farah Rahbar. You can look for their posts and send a request directly to them. Also, there is a Mayo Clinic in Arizona and you should consider going there if you can manage it. Should you need surgery, I highly recommend my surgeon, Dr. Fierer, as it is a short hospital stay and you could easily fly in for a couple of days. If your advanced workup is done well by competent doctors, you should only need one appointment prior to surgery. Please call on me at any time if you have questions. My private email is jarrigo@... Jan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 Thanks Jan. Do we have a Jan's Conn's story yet? In a message dated 9/27/07 2:32:36 PM, jarrigo@... writes: > > > > > > I am very new at this so please bear with me. I need an excellent > > endochronologist in the San Francisco or Sacramento area as I am > > having a hard time getting an appt. I am currently on 4 different > > meds for bp and high amounts of k as my kidneys keep secreting > it. > > I am stable now with k and my bp but am having extreme fatigue and > > sleeping sometimes 18 hrs a day. severe headaches and extreme > > cramping even writing this i cramp. I feel like such a baby i > have > > never been ill and this is really throwing me off. please any > > advice or info would be so greatly appreciated. i have my own > > cleaning service and am not able to work. 2 beautiful kids and a > > wonderful husband. life is on hold and we are all scared. meds are > > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day, > > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at > > night, spironolactone 25mg at night all my symptoms came on very > > sudden, paralysis, blurred vision, weakness, extreme fatigue, > > migranes,very irritable(actually irritable tingling in hands and > > feet blurred vision and headaches started it all and lasted about > 2 > > weeks before i was admitted to the critical care unit for 5 days.) > > thank you all in advance i may not be able to reply due to > cramping. > > k is 4.4 now dont understand the cramping? again thank you all. > > Dear , > > I can really empathize with you. Your doctors seem to be leaving > you out there without the help you need. Did your symptoms get > worse after starting on spironolactone? I have tried it twice as it > is the best drug for treating postassium and bp. Both times it > increased nausea, virtigo, vision disturbances, weakness and other > symptoms. I have now discontinued it and waiting for potassium > report to see if I have to try another drug. Spironolactone will > raise your potassium if the problem is aldosterone. It can also > raise it too high in combination with other drugs(I just did that). > It can also lower your sodium which is good if it doesn't lower it > too much. You should check this regularly along with potassium. > When I was going through this, my husband and I called it the merry- > go-round. If you need to stop the spiro, you can take potassium > supplements. > > I have been seeing a neurologist for about 3 years for headaches. > Before I knew that I had PA, my headaches kept getting worse until I > was having daily headaches. My neuroligist reduced the headaches to > almost none, in a very short time with a low dose of elavil. Also, > by increasing the dose to 70mg(this is still a low dose) I am having > less pain in feet, legs, arms, and hands. > > You need immediate help from qualified doctors. Oceanside is too > far for you in your condition but I know there are at least 2 others > on this message board from the San Francisco area. One is Sapna_52 > and the other is Farah Rahbar. You can look for their posts and > send a request directly to them. Also, there is a Mayo Clinic in > Arizona and you should consider going there if you can manage it. > Should you need surgery, I highly recommend my surgeon, Dr. Fierer, > as it is a short hospital stay and you could easily fly in for a > couple of days. If your advanced workup is done well by competent > doctors, you should only need one appointment prior to surgery. > > Please call on me at any time if you have questions. My private > email is jarrigo@... > > Jan > > > > > May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 I would call Dr. Willa Hseuh's office (UCLA) or Dr Vito Campese (USC) and tell them Dr. Grim referred you. If you cant see them (very busy) they should know someone who knows what they are doing there. In a message dated 9/27/07 12:43:01 PM, viumber@... writes: > > Have you been tested for Cushing's yet? If your cortisol was high that would > be a clue. I had normal aldosterone, low renin and high cortisol (at times). > Cyclical cushings and most likely conns too. I found a good endocrinologist > in LA. Pathology report said I had micronodular adrenal hyperplasia. It was > causing my high blood pressure and a multitude of problems. Violet > > lisaconns <lisaconns@...> wrote: not clear about prognosis yet. i live > in a small town and the drs > did not prep me for the test correctly according to my research. My > alderterone is normal renin is low and cortisol is high but am tolk > by dr in small town that is perfectly normal? Go figure. I am > definately confused. I really need to find a good endochronologist > and lots of new friends of my group here. I have no doubt you will > all be lots of help and inspiration Thank you I am going in for a k > check with my print out to make sure it is done right today. I bet > that makes a difference. Ct scan in san francisco went to emergency > room (5hr drive from home) shows both adrenal glands enlarged no > specifics yet other than that trying to get records and a > specialist. > > > How clear is the Dx fo Conn's? Need more details. Many will > need a lot > > more Sprio to get to goal. Have you been on more? > > > > > > Be sure blood was drawn correctly to make sure they did not miss > low K. See > > our files on this. > > > > > > > > > > > > > > > > > > > > > > > > May your pressure be low! > > > > Clarence E. Grim, BS, MS, MD > > Senior Consultant to Shared Care Research and Consulting, Inc. > > (sharedcareinc. (sh > > Clinical Professor of Internal Medicine and Epidemiology Med. Col. > WI > > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > > > Specializing in Difficult to Control High Blood Pressure > > and the Physiology and History of Survival During > > Hard Times and Heart Disease today. > > > > > ************ ******** ******** ******* > > See what's new at http://www.aol.htt > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 In a message dated 9/27/07 11:30:44 AM, lisaconns@... writes: > alderterone is normal renin is low > As you can see in my article on the evolution of PA you likely have early PA. If renin is low aldo should also be low. Can you get exact numbers and the normals for that lab for us to look at. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 > > > In a message dated 9/27/07 11:30:44 AM, lisaconns@... writes: > > > > alderterone is normal renin is low > > > > As you can see in my article on the evolution of PA you likely have early PA. > If renin is low aldo should also be low. Can you get exact numbers and the > normals for that lab for us to look at. > Thank you all so much for the help. You are my lifeline right now and I promise to check out all the advice. I am sorry you are all going through thisas well. My renin was 0.1 sitting up but I was laying down most of the day (the same with all these tests i will share) I would like to add that i take estratest 1.25/2.5 for a hysterectomy. cortisol free 61.5 cortisone urine 41.2 cortisol/cortisone ratio 1.49. I started taking the spiro while i was admitted to the hospital and can not remember if i was taking it while they were doing these tests. they did nothing to prep me. when admitted potassium was 1.9. now 4.4. I asked yesterday to follow the potassium test as per paper and they regused saying it did not make a difference. I don't believe that could i please get more specific info because i do want to follow through. my body is cramping so bad. i am typing with my right hand only as the left cramped minutes ago and is so weak i can't lift it. when i went to san francisco they did a ct and stated that i have hyperplasia in both adrenal glands. that is all i know about that and have been trying to get med records but no luck yet. ast=94 alt=232 bun=6 sodium=146 potatissum=3.3 co2=36 this was the morning after being admitted. everything is now normal as of yesterday. any info i can give i would be happy to give. If you need anything faxed or sent i am more than willing. I don't know if there are rules or not as to giving real info please let me know. I have never belonged to a chat group before. thanks again everyone. > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 > > > In a message dated 9/27/07 11:30:44 AM, lisaconns@... writes: > > > > alderterone is normal renin is low > > > > As you can see in my article on the evolution of PA you likely have early PA. > If renin is low aldo should also be low. Can you get exact numbers and the > normals for that lab for us to look at. > normals are: renin 0.1 supine 0.2-1.6 upright 0.5-4.0 aldo 1.6 upright 4.0-31.0 supine 16.0 or less unspecified 31 or less normal sodium intake aldo urine not sure how to read 24 hr urine total volume 5200 creatinine urine 29 unit mg/dl creatinine,urine/day 1508 reference range 700 to 1600 unit: mg/d the urine aldo concertration is less that 160 ng/dl which is the sensivity limit of this assay. Based on the total volume of this sample the urine aldo is less than 8.3 ug/d i was on a normal sodium intake in the hospital that range is normal (100-200 meq) 6-25 ug/24 hrs cortisol, urine free 61.5 H (<45.0) cortisone, urine 41.2 cortisol/cortisone ratio 1.49 H (0.15-0.50) sorry i forgot to write in the ranges. > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Sounds like you have PA for sure and may need to be on more Spiro and DASHing like your life depended on it. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 > > > In a message dated 9/27/07 10:25:23 AM, lisaconns@... writes: > > I was on 50 mg of spiro twice daily but ucsf changed it on 9/13/07 when they were able to get my bp under control. thank you for all your help. Do you happen to have a number for willa Hseuh's or vito CAMPESE. I can just google it too. Thank you again DR Grim for helping. Is there a way I can come fly and see you? > > > > I am very new at this so please bear with me. I need an excellent > > endochronologist in the San Francisco or Sacramento area as I am > > having a hard time getting an appt. I am currently on 4 different > > meds for bp and high amounts of k as my kidneys keep secreting it. > > I am stable now with k and my bp but am having extreme fatigue and > > sleeping sometimes 18 hrs a day. severe headaches and extreme > > cramping even writing this i cramp. I feel like such a baby i have > > never been ill and this is really throwing me off. please any > > advice or info would be so greatly appreciated. i have my own > > cleaning service and am not able to work. 2 beautiful kids and a > > wonderful husband. life is on hold and we are all scared. meds are > > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day, > > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at > > night, spironolactone 25mg at night > > > How clear is the Dx fo Conn's? Need more details. Many will need a lot > more Sprio to get to goal. Have you been on more? > > > > all my symptoms came on very > > sudden, paralysis, blurred vision, weakness, extreme fatigue, > > migranes,very irritable(actually irritable tingling in hands and > > feet blurred vision and headaches started it all and lasted about 2 > > weeks before i was admitted to the critical care unit for 5 days.) > > thank you all in advance i may not be able to reply due to cramping. > > k is 4.4 now dont understand the cramping? again thank you all. > > > Be sure blood was drawn correctly to make sure they did not miss low K. See > our files on this. > > > > > > > > > > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 > > > > I am very new at this so please bear with me. I need an excellent > > endochronologist in the San Francisco or Sacramento area as I am > > having a hard time getting an appt. I am currently on 4 different > > meds for bp and high amounts of k as my kidneys keep secreting > it. > > I am stable now with k and my bp but am having extreme fatigue and > > sleeping sometimes 18 hrs a day. severe headaches and extreme > > cramping even writing this i cramp. I feel like such a baby i > have > > never been ill and this is really throwing me off. please any > > advice or info would be so greatly appreciated. i have my own > > cleaning service and am not able to work. 2 beautiful kids and a > > wonderful husband. life is on hold and we are all scared. meds are > > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day, > > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg at > > night, spironolactone 25mg at night all my symptoms came on very > > sudden, paralysis, blurred vision, weakness, extreme fatigue, > > migranes,very irritable(actually irritable tingling in hands and > > feet blurred vision and headaches started it all and lasted about > 2 > > weeks before i was admitted to the critical care unit for 5 days.) > > thank you all in advance i may not be able to reply due to > cramping. > > k is 4.4 now dont understand the cramping? again thank you all. > > Dear , > > I can really empathize with you. Your doctors seem to be leaving > you out there without the help you need. Did your symptoms get > worse after starting on spironolactone? I have tried it twice as it > is the best drug for treating postassium and bp. Both times it > increased nausea, virtigo, vision disturbances, weakness and other > symptoms. I have now discontinued it and waiting for potassium > report to see if I have to try another drug. Spironolactone will > raise your potassium if the problem is aldosterone. It can also > raise it too high in combination with other drugs(I just did that). > It can also lower your sodium which is good if it doesn't lower it > too much. You should check this regularly along with potassium. > When I was going through this, my husband and I called it the merry- > go-round. If you need to stop the spiro, you can take potassium > supplements. > > I have been seeing a neurologist for about 3 years for headaches. > Before I knew that I had PA, my headaches kept getting worse until I > was having daily headaches. My neuroligist reduced the headaches to > almost none, in a very short time with a low dose of elavil. Also, > by increasing the dose to 70mg(this is still a low dose) I am having > less pain in feet, legs, arms, and hands. > > You need immediate help from qualified doctors. Oceanside is too > far for you in your condition but I know there are at least 2 others > on this message board from the San Francisco area. One is Sapna_52 > and the other is Farah Rahbar. You can look for their posts and > send a request directly to them. Also, there is a Mayo Clinic in > Arizona and you should consider going there if you can manage it. > Should you need surgery, I highly recommend my surgeon, Dr. Fierer, > as it is a short hospital stay and you could easily fly in for a > couple of days. If your advanced workup is done well by competent > doctors, you should only need one appointment prior to surgery. > > Please call on me at any time if you have questions. My private > email is jarrigo@... > > Jan > >Your info is wonderful will definately be talking to dr about these massive headaches. I have had more helpful advice on this site than i have since i started. How blessed i am to have you all. Please any and all info would be great. Everyone that knows me says they I am the strongest woman they have ever met and that they could write a book about my life. let me tell ya i have never had any medical problems to speak of (hysterectomy twice cleft lip repairs and pregnancy problems) other than that perfect. I am not so strong now.. For the most part just leave me alone and let me sleep. I am an extremely high energy person EVERYONE around me is worried. I know I will get through this I judt don't know when. Thank you too Violet for your help. Someday when I can learn about this and get through this I vow to be a help and inspiration to someone else in my shoes now. Thanks everyone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 You do not have primary aldo with the very low PRA and low aldo. You may have another rare condition. Do you eat licoric every day? Tell us what else you are taking-everything. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Not now but I am retiring to S Lake Tahoe and will have a consulting service there if I can make it cost effective enough to cover malpractice insurance. I dont have their numbers-should be in phone book. Call Dept of Medicine to get names. Just met a colleagure from NY and we are thinking about forming a MD Society for Primary Aldosteronism. More on that later. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Also talked to Dr. Ted Kurtz at UCSF and he told me there is a group there but did not get the name. You can call his office to get the name. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 These two symptoms scream " hypothyroidism. " Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lisaconns will definately be talking to dr about these massive headaches. For the most part just leave me alone and let me sleep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 > > > > > > I am very new at this so please bear with me. I need an > excellent > > > endochronologist in the San Francisco or Sacramento area as I am > > > having a hard time getting an appt. I am currently on 4 > different > > > meds for bp and high amounts of k as my kidneys keep secreting > > it. > > > I am stable now with k and my bp but am having extreme fatigue > and > > > sleeping sometimes 18 hrs a day. severe headaches and extreme > > > cramping even writing this i cramp. I feel like such a baby i > > have > > > never been ill and this is really throwing me off. please any > > > advice or info would be so greatly appreciated. i have my own > > > cleaning service and am not able to work. 2 beautiful kids and > a > > > wonderful husband. life is on hold and we are all scared. meds > are > > > catapres 0.2/dayx7 ADH pepcid 20 mg 2x a day, > > > K 20meq tab 2x a day labetalol 100 mg 2xa day lisinopril 10 mg > at > > > night, spironolactone 25mg at night all my symptoms came on very > > > sudden, paralysis, blurred vision, weakness, extreme fatigue, > > > migranes,very irritable(actually irritable tingling in hands and > > > feet blurred vision and headaches started it all and lasted > about > > 2 > > > weeks before i was admitted to the critical care unit for 5 > days.) > > > thank you all in advance i may not be able to reply due to > > cramping. > > > k is 4.4 now dont understand the cramping? again thank you all. > > > > Dear , > > > > I can really empathize with you. Your doctors seem to be leaving > > you out there without the help you need. Did your symptoms get > > worse after starting on spironolactone? I have tried it twice as > it > > is the best drug for treating postassium and bp. Both times it > > increased nausea, virtigo, vision disturbances, weakness and other > > symptoms. I have now discontinued it and waiting for potassium > > report to see if I have to try another drug. Spironolactone will > > raise your potassium if the problem is aldosterone. It can also > > raise it too high in combination with other drugs(I just did > that). > > It can also lower your sodium which is good if it doesn't lower it > > too much. You should check this regularly along with potassium. > > When I was going through this, my husband and I called it the > merry- > > go-round. If you need to stop the spiro, you can take potassium > > supplements. > > > > I have been seeing a neurologist for about 3 years for headaches. > > Before I knew that I had PA, my headaches kept getting worse until > I > > was having daily headaches. My neuroligist reduced the headaches > to > > almost none, in a very short time with a low dose of elavil. Also, > > by increasing the dose to 70mg(this is still a low dose) I am > having > > less pain in feet, legs, arms, and hands. > > > > You need immediate help from qualified doctors. Oceanside is too > > far for you in your condition but I know there are at least 2 > others > > on this message board from the San Francisco area. One is Sapna_52 > > and the other is Farah Rahbar. You can look for their posts and > > send a request directly to them. Also, there is a Mayo Clinic in > > Arizona and you should consider going there if you can manage it. > > Should you need surgery, I highly recommend my surgeon, Dr. Fierer, > > as it is a short hospital stay and you could easily fly in for a > > couple of days. If your advanced workup is done well by competent > > doctors, you should only need one appointment prior to surgery. > > > > Please call on me at any time if you have questions. My private > > email is jarrigo@ > > > > Jan > > >Your info is wonderful will definately be talking to dr about > these massive headaches. I have had more helpful advice on this site > than i have since i started. How blessed i am to have you all. > Please any and all info would be great. Everyone that knows me says > they I am the strongest woman they have ever met and that they could > write a book about my life. let me tell ya i have never had any > medical problems to speak of (hysterectomy twice cleft lip repairs > and pregnancy problems) other than that perfect. I am not so strong > now.. For the most part just leave me alone and let me sleep. I am > an extremely high energy person EVERYONE around me is worried. I > know I will get through this I judt don't know when. Thank you too > Violet for your help. Someday when I can learn about this and get > through this I vow to be a help and inspiration to someone else in > my shoes now. Thanks everyone Dear , I forgot to mention migraine headaches. I have suffered from migraines since I was about 12 - about 1 or 2 a year. Approx. 6 years before I was diagnosed, the migraines got worse. I made several trips to the hospital for shots. I stumpled into a treatment to reduce the severity of the headaches through all of the trips to the hospital. They treated me with demerol and phenergan. So I asked my doctor for lorcet and phenergan. 1/2 locet and 1/2 phenergan(25mg) at first sign of a migraine reduced the symptoms and I was okay in a couple of hours.I finally saw a neurologist as the headaches were almost daily and I couldn't take drugs all day long. The typical meds for migraines were also out of the questions due to the side effects. On my second visit to the neurologist, he prescribed 20mg of elavil and a short regimen of prednisone. This has cured the daily headaches and I only have an occasional headache which I can treat with 1/2 lorcet and 1/2 lorcet. Another treatment I discovered accidentally, was that elavil at higher doses treats most of the pain in my hands, arms, feet, legs and shoulders. I had to play with the dosage a bit but I am now almost pain free and am able to do things I haven't been able to do in about 5 years. It's truly a miracle! I don't think I've cured the root cause which probably is connected to PA. For anyone reading this, if the pain is a burning pain (I also had bright red feet at night), you should talk to your doctor about elavil(amytriptyline). We are hearing from a lot of friends that they are being treated by elavil for pain. You will feel tired with any of these meds at first but it wears off pretty quickly. I know this is a bit wordy but I really want to get the word out about these drugs as they are very effective with little side effects. Good luck and keep in touch. Jan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Jan are you talking about these problems as due to your PA or something else. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Call the office of Dr. Lawrence Krakoff or Atlas in NYC tell them Dr. Grim sent you. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Low K and high aldo almost never go away. What did they think was causing your low K when first picked up. What we need are all the details about your BP, its RX and the Hx of the low K and its Rx. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Most of your Sx may be related to low K. Only by being properly tested for PA and they treated if you have it can the relationship of all your other problems to PA be determined. Headache is a very common problem in PA. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Dr. Lawrence Krakoff or Atlas in NYC. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 > > Jan are you talking about these problems as due to your PA or something else. > > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. Good Doctor Grim, I am only now beginning to connect the dots. I had been treating all my symptoms for about 20 years and doctors were never sure of the cause. I even took allergy shots for 5 years and the headaches got worse. When I finally went to a neurologist, about 3 years ago, I was having headaches daily with no apparent reason. He is a highly respected neurologist but could not give me a clear diagnosis. This is not uncommon with headache sufferers. He also tested me for neuropathy as I had no apparent reason for neuropathy pain. All of the pain was completely gone after my adrenalectomy(feet and legs about 2 weeks and shoulders and arms about 2 months) Over the last 20 years, I have gone to the emergency room for severe headaches or severe chest pain at least 10 times. I have had MRI's of brain, sinus and neck, complete heart work ups twice and neck ultrasound The only thing they ever found was low potassium (2.8 the last time). I would take potassium for a month and go about my life until the next time (too bad they didn't do a chest MRI!) None of my current doctors have ignored any of these symptoms. They just weren't sure of the cause. Now, low potassium and high aldosterone is back. Blood pressure is under control but a little higher than it was. I just increased elavil to 80 mg as pain in my feet and legs is back after about 10 months pain free. I was unable to do anything involving walking or standing more than 30 minutes for years prior to elavil and I want others to know that there's hope. I don't know if all the symptoms are connected to PA or not but I'm trying to learn as much as I can and stay out of trouble. It's at least curious that many patients on this message board are experiencing similar pains and headaches. Any advice is much appreciated. Jan > > > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 >Just met a colleague from NY and we are thinking >about forming a MD Society >for Primary Aldosteronism. More on that later. Dr. Grim Who and where in NY? I am interested in knowing because I would like someone in my state to help me with continued care post surgery. The local doctors are very difficult to deal with and have little comprehension of PA except for the statement that " you are an oddity, it is extremely rare " even after I show them the literature. They are all medication oriented and do not promote DASH, again, even when shown supporting literature. Appointments are rushed, they do not listen and I am preached to about " current guidelines " for my age group and past history of hypertension. My endocrinologists do help a little, but none of the doctors communicate directly with my PCP, I have to stand up for myself repeatedly. Even after showing them your e-mail with the statement my current diagnosis should be " Secondary HTN due to Primary Aldosteronism corrected by a left adrenalectomy " I am classified as HTN period! I am not hypertensive now but that doesn't seem to matter to them since they get 160/90 in the office with totally improper technique and I get consistent good numbers at home at all times. They act like I am fudging the numbers even though I show them a log calendar. It is similar to the way I was treated for 13 years before someone finally took me seriously and did proper testing to find the adrenal adenoma and Conn's diagnosis. I am very sensitive to the disbelief and rather avoid going to the Dr. than have to continually prove myself. I need a physician in my corner. ________________________________________________________________________________\ ____ Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos & more. http://mobile./go?refer=1GNXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 >Just met a colleague from NY and we are thinking >about forming a MD Society >for Primary Aldosteronism. More on that later. Dr. Grim Who and where in NY? I am interested in knowing because I would like someone in my state to help me with continued care post surgery. The local doctors are very difficult to deal with and have little comprehension of PA except for the statement that " you are an oddity, it is extremely rare " even after I show them the literature. They are all medication oriented and do not promote DASH, again, even when shown supporting literature. Appointments are rushed, they do not listen and I am preached to about " current guidelines " for my age group and past history of hypertension. My endocrinologists do help a little, but none of the doctors communicate directly with my PCP, I have to stand up for myself repeatedly. Even after showing them your e-mail with the statement my current diagnosis should be " Secondary HTN due to Primary Aldosteronism corrected by a left adrenalectomy " I am classified as HTN period! I am not hypertensive now but that doesn't seem to matter to them since they get 160/90 in the office with totally improper technique and I get consistent good numbers at home at all times. They act like I am fudging the numbers even though I show them a log calendar. It is similar to the way I was treated for 13 years before someone finally took me seriously and did proper testing to find the adrenal adenoma and Conn's diagnosis. I am very sensitive to the disbelief and rather avoid going to the Dr. than have to continually prove myself. I need a physician in my corner. ________________________________________________________________________________\ ____ Pinpoint customers who are looking for what you sell. http://searchmarketing./ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 > > You do not have primary aldo with the very low PRA and low aldo. > > You may have another rare condition. > > Do you eat licoric every day? > > Tell us what else you are taking-everything. > > > > May your pressure be low! > > Clarence E. Grim, BS, MS, MD > Senior Consultant to Shared Care Research and Consulting, Inc. > (sharedcareinc.com) > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI > Clinical Professor of Nursing, Univ. of WI, Milwaukee > > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > > What other condition do you think it may be and what is PRA and how does it affect a person. I don't eat licorice everyday although i have been known to binge once in a great while.. Explained in the other post. Do you believe the aldo test could be wrong because of the estragen or other meds or not being prepped for the test? They did nothing but a blood draw. No salt loading etc... Don't understand it yet just trying to learn > > ************************************** > See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
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