Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 In a message dated 12/6/07 4:16:26 PM, datawrhsdoc@... writes: > my aldosterone level was 2196 on the blood test, what is the normal range > > if anyone can tell me i forgot to ask. Also k level is 3.4 in Nov and > 3.2in Sep what is the normal range for this. > > > Need to know the units they are using and the normals. Suspect this is where the order of magnitude issue comes from. May your pressure be low! Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS Clinical Professor of Medicine and Epidemiology Director, Hypertension Diagnosis and Treatment Center Board Certified in Internal Medicine, Geriatrics and Hypertension Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes. Listed in Best Doctors in America Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora ************************************** Check out AOL's list of 2007's hottest products. (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 In a message dated 12/6/07 1:10:21 PM, gaznik111@... writes: > my aldosterone level was 2196 on the blood test, what is the normal range > if anyone can tell me i forgot to ask. Also k level is 3.4 in Nov and 3.2 in > Sep what is the normal range for this. > > Hey that is what you pay taxes for over there. We and you need to know what is their normals Not ours --we use different units and labs. You also want to know what values have they seen in those who were cured by the operation and what their 5 year cure rate has been without AVS? Usually around 50%. May your pressure be low! Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS Clinical Professor of Medicine and Epidemiology Director, Hypertension Diagnosis and Treatment Center Board Certified in Internal Medicine, Geriatrics and Hypertension Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes. Listed in Best Doctors in America Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora ************************************** Check out AOL's list of 2007's hottest products. (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 , Suffice it to say that your aldosterone is very high, likely by orders of magnitude. Normal range for potassium is 3.5 - 5.0, so you are a tad low. Are you taking aldosterone blockers, potassium supplementation, etc? As to the surgery recommendation, have you and your doctors ruled out the possibility of bi-lateral hyperplasia or secondary hyperaldosterone. What tests have you had to confirm that you are only over-producing aldosterone only on the left side, such as AVS? Please take a look at Dr. Grim's paper " Evolution of PA " in the Hyperaldosterone Group's files if you haven't already. -Jeff On Dec 6, 2007 2:09 PM, gary chatten <gaznik111@...> wrote: > Hi all > > Just returned from my appointment with the surgeon, he as advised me to > have my left adrenal gland removed and i have an appointment to have my 4cm > adenoma removed in february. > > my aldosterone level was 2196 on the blood test, what is the normal range > if anyone can tell me i forgot to ask. Also k level is 3.4 in Nov and 3.2in Sep what is the normal range for this. > > __________________________________________________________ > Answers - Got a question? Someone out there knows the answer. Try > it > now. > http://uk.answers./ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 Hi jeff, Thanks for your information, im in the uk and i think we are well behind the states on this, see my response coming up re the last question asked on here. My b/p has stabilized over the last 2 months for some reason used to be 110/160 now around 90/150 so they have held off putting me on inspra for the time being. Not been advised to take any pot supplements yet either. I was at the surgeon today and mentioned the avs, he said because my aldosterone was high and i had a tumor that i didnt need avs and its only performed if a tumor cant be found !!! He said that a tumor (2) and high aldo (2) is 2 + 2 and that equals 4 and he also said 2 + 2 very rarely = 5 so surgery is the way to go LOL Im seeing the endo on the 18th so i need to also ask her that question. One other query is should i be starting on some med's prior to the operation as my surgeon seemed to think not Re: Surgery , Suffice it to say that your aldosterone is very high, likely by orders of magnitude. Normal range for potassium is 3.5 - 5.0, so you are a tad low. Are you taking aldosterone blockers, potassium supplementation, etc? As to the surgery recommendation, have you and your doctors ruled out the possibility of bi-lateral hyperplasia or secondary hyperaldosterone. What tests have you had to confirm that you are only over-producing aldosterone only on the left side, such as AVS? Please take a look at Dr. Grim's paper " Evolution of PA " in the Hyperaldosterone Group's files if you haven't already. -Jeff On Dec 6, 2007 2:09 PM, gary chatten <gaznik111 (DOT) co.uk> wrote: > Hi all > > Just returned from my appointment with the surgeon, he as advised me to > have my left adrenal gland removed and i have an appointment to have my 4cm > adenoma removed in february. > > my aldosterone level was 2196 on the blood test, what is the normal range > if anyone can tell me i forgot to ask. Also k level is 3.4 in Nov and 3.2in Sep what is the normal range for this. > > ____________ _________ _________ _________ _________ _________ _ > Answers - Got a question? Someone out there knows the answer. Try > it > now. > http://uk.answers. / > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2007 Report Share Posted December 7, 2007 In a message dated 12/7/07 5:32:59 AM, terridelorenzo@... writes: > > Hi , > > I'm in Canada and in pretty much exactly the same predicament that > you are currently in with a left adrenal gland tumor. My > aldosterone levels are very close to yours but were slightly higher > 2400 on one test and 2700 on a second test with a normal range of > 450-650 (or something close to that anyway). My surgeon ruled > against the AVS just by looking at the results of my CT scan to rule > out any issues with the right gland (hyperplasia) > > I am having my surgery on Dec 18th and according to my surgeon, more > than 95% of his patients are cured of their low K problems and 70% > are cured of their high BP problems with surgery. I'm obviously > hoping that I'm in the majority on that one!!! > > I'll keep you posted on my progress after the surgery. Wish me > luck!!! > Terri > > > Keep us posted. These are better results that most people around the world get so we can send him many more. Ask about his 5 year followup results when you can. My guess is that he has not followed many for more than a few months as most surgeons just dont do that. Has he published his results? 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. ************************************** Check out AOL's list of 2007's hottest products. (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2007 Report Share Posted December 7, 2007 Hi , I'm in Canada and in pretty much exactly the same predicament that you are currently in with a left adrenal gland tumor. My aldosterone levels are very close to yours but were slightly higher 2400 on one test and 2700 on a second test with a normal range of 450-650 (or something close to that anyway). My surgeon ruled against the AVS just by looking at the results of my CT scan to rule out any issues with the right gland (hyperplasia). I am having my surgery on Dec 18th and according to my surgeon, more than 95% of his patients are cured of their low K problems and 70% are cured of their high BP problems with surgery. I'm obviously hoping that I'm in the majority on that one!!! I'll keep you posted on my progress after the surgery. Wish me luck!!! Terri > > > In a message dated 12/6/07 1:10:21 PM, gaznik111@... writes: > > > > my aldosterone level was 2196 on the blood test, what is the normal range > > if anyone can tell me i forgot to ask. Also k level is 3.4 in Nov and 3.2 in > > Sep what is the normal range for this. > > > > > > Hey that is what you pay taxes for over there. We and you need to know what > is their normals Not ours --we use different units and labs. You also want > to know what values have they seen in those who were cured by the operation > and what their 5 year cure rate has been without AVS? Usually around 50%. > > > > May your pressure be low! > > Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS > Clinical Professor of Medicine and Epidemiology > Director, Hypertension Diagnosis and Treatment Center > Board Certified in Internal Medicine, Geriatrics and Hypertension > > Published over 220 scientific papers, book chapters and 220 abstracts in the > area of high blood pressure epidemiology, physiology, endocrinology > measurement, treatment and how to detect curable causes. > Listed in Best Doctors in America > Specializing in Difficult to Control High Blood Pressure and the History and > Physiology of High Blood pressure in the African Diaspora > > > > > ************************************** > Check out AOL's list of 2007's hottest > products. > > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2007 Report Share Posted December 7, 2007 Hey terri, That is very much like myself, i wish u all the best with your surgery and hope u have no complications and have an excellent recovery. If u can find the time after your operation it would be nice to hear how your experience goes, any info might help me and i'll no what to expect or at least have a comparison, please feel free to email me if you prefer Thanks and good luck Re: Surgery Hi , I'm in Canada and in pretty much exactly the same predicament that you are currently in with a left adrenal gland tumor. My aldosterone levels are very close to yours but were slightly higher 2400 on one test and 2700 on a second test with a normal range of 450-650 (or something close to that anyway). My surgeon ruled against the AVS just by looking at the results of my CT scan to rule out any issues with the right gland (hyperplasia) . I am having my surgery on Dec 18th and according to my surgeon, more than 95% of his patients are cured of their low K problems and 70% are cured of their high BP problems with surgery. I'm obviously hoping that I'm in the majority on that one!!! I'll keep you posted on my progress after the surgery. Wish me luck!!! Terri > > > In a message dated 12/6/07 1:10:21 PM, gaznik111@.. . writes: > > > > my aldosterone level was 2196 on the blood test, what is the normal range > > if anyone can tell me i forgot to ask. Also k level is 3.4 in Nov and 3.2 in > > Sep what is the normal range for this. > > > > > > Hey that is what you pay taxes for over there. We and you need to know what > is their normals Not ours --we use different units and labs. You also want > to know what values have they seen in those who were cured by the operation > and what their 5 year cure rate has been without AVS? Usually around 50%. > > > > May your pressure be low! > > Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS > Clinical Professor of Medicine and Epidemiology > Director, Hypertension Diagnosis and Treatment Center > Board Certified in Internal Medicine, Geriatrics and Hypertension > > Published over 220 scientific papers, book chapters and 220 abstracts in the > area of high blood pressure epidemiology, physiology, endocrinology > measurement, treatment and how to detect curable causes. > Listed in Best Doctors in America > Specializing in Difficult to Control High Blood Pressure and the History and > Physiology of High Blood pressure in the African Diaspora > > > > > ************ ********* ********* ******** > Check out AOL's list of 2007's hottest > products. > > (http://money. aol.com/special/ hot-products- 2007? NCID=aoltop00030000 000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Good we want to highlight centers with good long term results. Ask if he has a data base of folks who whoudl like to join our group and share experiences. CE Grim MD. Keep us posted. ************************************** Check out AOL's list of 2007's hottest products. (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi Dr. Grim, I will ask Dr. Bonjer about his 5 year results when I see him next week and tell him about this group in case he doesn't already know. I know he's originally from the Netherlands but he's working in Halifax, NS, Canada now. I just watched him perform the surgery on WebSurg: http://www.websurg.com/ref/Laparoscopic_left_adrenalectomy_by_retroper itoneal_approach-vd01en1408e.htm He's also published a few articles that I was able to find online. The original one I read was on pubmed at the following address: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1421272 About halfway through he talks about the Conn's cases specifically stating that in his sample all did not require potassium drugs post- op and 69% did not require BP meds post surgery. This paper was done between 1994-1999 I believe and based on what he told my husband and I during our appointment, his results have remained consistent since then....obviously this doesn't address your 5 year post op question though. I haven't really looked for more articles lately. I'm finding that sometimes the more you know, the more you can freak yourself out and my BP has been all over the place lately so I'm trying to stick to the positive results and avoid reading any more negative ones! I'll keep you posted post surgery and on any new discussions I have with Dr. Bonjer. Terri > > > In a message dated 12/7/07 5:32:59 AM, terridelorenzo@... writes: > > > > > > Hi , > > > > I'm in Canada and in pretty much exactly the same predicament that > > you are currently in with a left adrenal gland tumor. My > > aldosterone levels are very close to yours but were slightly higher > > 2400 on one test and 2700 on a second test with a normal range of > > 450-650 (or something close to that anyway). My surgeon ruled > > against the AVS just by looking at the results of my CT scan to rule > > out any issues with the right gland (hyperplasia) > > > > I am having my surgery on Dec 18th and according to my surgeon, more > > than 95% of his patients are cured of their low K problems and 70% > > are cured of their high BP problems with surgery. I'm obviously > > hoping that I'm in the majority on that one!!! > > > > I'll keep you posted on my progress after the surgery. Wish me > > luck!!! > > Terri > > > > > > > > Keep us posted. These are better results that most people around the world > get so we can send him many more. > > Ask about his 5 year followup results when you can. > > My guess is that he has not followed many for more than a few months as most > surgeons just dont do that. > > Has he published his results? > > > > > > 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. > > > > ************************************** > Check out AOL's list of 2007's hottest > products. > > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Peggy, Hyperaldosteronism is a reasonable guess, but several things trouble me with using that " diagnosis " making very premature to consult with a surgeon: 1) Spirinolactone did not impact your BP. How much spiro were you on? As an aldosterone blocker spiro should be of benefit both with BP and potassium levels, particularly if you have primary aldosteronism (PA) and you are taking enough of it. 2) Have you tried taking Eplerenone (aka, Inspra), another adosterone blocker? 2) MRI showing a " tumor " is not diagnostic, but merely helpful in suggesting unilateral PA. Most such tumors are incidentalomas and are not indicative of ANY disease. 3) You don't mention having any confirmatory testing including aldosterone renin ratio (ARR), salt loading tests, adrenal vein sampling. Has any of this been done yet? 4) Have you tried the DASH diet? Please see the group's file repository and especially Dr. Grim's Evolution of PA. -Doc P.S. I'm not a real doctor...I only play one in data centers. > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi Peggy, The episode that you describe sounds exactly like what I had. I had several episodes like it but this was the first time that an ER doc actually alerted me to the seriosness of the low potassium. I started looking for a new primary but it took about 6 months. My bp had been under control but started creeping up. The new primary jumped to the maxide as the cause of the low potassium but ordered a ct of my chest as he does this with all seniors. There was the tumor! The doctor didn't think it was serious but when I looked it up on the internet you could have put my picture next to the description of symptoms of primary aldosteronism. My bp kept going up and reached 200/100 at it's highest point in spite of several bp meds that I tried. Like you, my potassium was slightly low even on a maximum dose of potassium. Spiro lowered my bp slightly but made me very sick and raised my k too high and lowered my sodium too low. Arr was only a little high but all of the symptoms remained and I could not get my bp down. Finally, my endo ordered a salt loaded urine test and there it was. About 4 weeks later I had a left adrenalectomy. I should mention that prior to surgery, I had a complete heart work up. My heart is in excellent condition but the doctor could see the aldosterone in the heart. The surgery was a cake walk for me. I had no pain from the surgery and the day after surgery I went home with no symptoms except weakness for about a week. All my symptoms were gone and I had a lot of them. I had about 10 really good months. I had to go back on bp meds but my bp was under control. About a year ago, I started having symptoms again. I have flushing and sweating - a lot. The pain has become full blown neuropathy my k is slightl low and my arr is up to 44.9. A ct didn't show a tumor on the right gland and my docs can't give me any answers. I'm am trying to get an appointment in San Francisco with an endo who has the right credentials. Also, they have research programs for adrenal disease. I'm telling you all of this to let you know that the surgery is serious but it can be very easy with the right surgeon. Knowing what I know now, I would have gotten a second opinion before surgery but it wouldn't have changed anything. I do not regret having the surgery because I could not control the bp and it certainly helped the symptoms. I still would not have had an AVS as it is far to dangerous. With my symptoms, there was really only one choice. It sounds to me like you also have only one choice. Spiro is not for everyone and it can have some really bad side effects too. By the way, I also tried Inspra and I had the same side effects that I had with Sprio and it didn't even lower my bp. My advice to you is to find a good surgeon (one who has done the surgery several times) and put yourself in his/her care. Think positively and stop reading all of the bad stuff. Surgery could totally cure you. Good Luck Jan > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Thank you Jan. This is exactly what I needed to hear. When I first found about it I was all for the surgery. Then I started questioning if it was necessary. With my symptoms I know I really don't have a choice. I've seen 3 doctors who all agree and see the surgeon on Tuesday. I hope she is able to get me in soon because I just want to feel better. I'm only 41 and the extremely high and uncontrolled b/p scares me and my k goes down so suddenly I'm afraid of passing out behind the wheel. The tumor is about an inch long. The docs say its more than likely not cancer which is a relief. I have found a lot of info about the surgery and syndrome but until you I have not been able to talk to anyone who has had the surgery. Again thank you. Peggy Re: Surgery Hi Peggy, The episode that you describe sounds exactly like what I had. I had several episodes like it but this was the first time that an ER doc actually alerted me to the seriosness of the low potassium. I started looking for a new primary but it took about 6 months. My bp had been under control but started creeping up. The new primary jumped to the maxide as the cause of the low potassium but ordered a ct of my chest as he does this with all seniors. There was the tumor! The doctor didn't think it was serious but when I looked it up on the internet you could have put my picture next to the description of symptoms of primary aldosteronism. My bp kept going up and reached 200/100 at it's highest point in spite of several bp meds that I tried. Like you, my potassium was slightly low even on a maximum dose of potassium. Spiro lowered my bp slightly but made me very sick and raised my k too high and lowered my sodium too low. Arr was only a little high but all of the symptoms remained and I could not get my bp down. Finally, my endo ordered a salt loaded urine test and there it was. About 4 weeks later I had a left adrenalectomy. I should mention that prior to surgery, I had a complete heart work up. My heart is in excellent condition but the doctor could see the aldosterone in the heart. The surgery was a cake walk for me. I had no pain from the surgery and the day after surgery I went home with no symptoms except weakness for about a week. All my symptoms were gone and I had a lot of them. I had about 10 really good months. I had to go back on bp meds but my bp was under control. About a year ago, I started having symptoms again. I have flushing and sweating - a lot. The pain has become full blown neuropathy my k is slightl low and my arr is up to 44.9. A ct didn't show a tumor on the right gland and my docs can't give me any answers. I'm am trying to get an appointment in San Francisco with an endo who has the right credentials. Also, they have research programs for adrenal disease. I'm telling you all of this to let you know that the surgery is serious but it can be very easy with the right surgeon. Knowing what I know now, I would have gotten a second opinion before surgery but it wouldn't have changed anything. I do not regret having the surgery because I could not control the bp and it certainly helped the symptoms. I still would not have had an AVS as it is far to dangerous. With my symptoms, there was really only one choice. It sounds to me like you also have only one choice. Spiro is not for everyone and it can have some really bad side effects too. By the way, I also tried Inspra and I had the same side effects that I had with Sprio and it didn't even lower my bp. My advice to you is to find a good surgeon (one who has done the surgery several times) and put yourself in his/her care. Think positively and stop reading all of the bad stuff. Surgery could totally cure you. Good Luck Jan > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Oh yeah, my doctors do not want to do the urine/sodium test as they are afraid it will put me into a heart attack or stroke because my b/p is so uncontrolled. What angers me is that I have been telling my pcp for years that there was more to my b/p and low k then family history (grandparents had heart disease late in life) and overweight (I'm about 25 pounds overweight) and he just kept telling me thats all it was. I told him all the problems I was having - weakness, tiredness, tingle in legs, pain in chest, lack of ambition, memory lapses, actions like seizures etc. - and he would just say family history or maybe thyroid. When the thyroid was fine it was left to family and weight and thats all he would say. It took the doc at the hospital to start the process. He did all sorts of tests, CTs, MRI, Ultrasounds, stress test, EKG, EEG, etc. Those were all fine. I hope you are doing fine now. Re: Surgery Hi Peggy, The episode that you describe sounds exactly like what I had. I had several episodes like it but this was the first time that an ER doc actually alerted me to the seriosness of the low potassium. I started looking for a new primary but it took about 6 months. My bp had been under control but started creeping up. The new primary jumped to the maxide as the cause of the low potassium but ordered a ct of my chest as he does this with all seniors. There was the tumor! The doctor didn't think it was serious but when I looked it up on the internet you could have put my picture next to the description of symptoms of primary aldosteronism. My bp kept going up and reached 200/100 at it's highest point in spite of several bp meds that I tried. Like you, my potassium was slightly low even on a maximum dose of potassium. Spiro lowered my bp slightly but made me very sick and raised my k too high and lowered my sodium too low. Arr was only a little high but all of the symptoms remained and I could not get my bp down. Finally, my endo ordered a salt loaded urine test and there it was. About 4 weeks later I had a left adrenalectomy. I should mention that prior to surgery, I had a complete heart work up. My heart is in excellent condition but the doctor could see the aldosterone in the heart. The surgery was a cake walk for me. I had no pain from the surgery and the day after surgery I went home with no symptoms except weakness for about a week. All my symptoms were gone and I had a lot of them. I had about 10 really good months. I had to go back on bp meds but my bp was under control. About a year ago, I started having symptoms again. I have flushing and sweating - a lot. The pain has become full blown neuropathy my k is slightl low and my arr is up to 44.9. A ct didn't show a tumor on the right gland and my docs can't give me any answers. I'm am trying to get an appointment in San Francisco with an endo who has the right credentials. Also, they have research programs for adrenal disease. I'm telling you all of this to let you know that the surgery is serious but it can be very easy with the right surgeon. Knowing what I know now, I would have gotten a second opinion before surgery but it wouldn't have changed anything. I do not regret having the surgery because I could not control the bp and it certainly helped the symptoms. I still would not have had an AVS as it is far to dangerous. With my symptoms, there was really only one choice. It sounds to me like you also have only one choice. Spiro is not for everyone and it can have some really bad side effects too. By the way, I also tried Inspra and I had the same side effects that I had with Sprio and it didn't even lower my bp. My advice to you is to find a good surgeon (one who has done the surgery several times) and put yourself in his/her care. Think positively and stop reading all of the bad stuff. Surgery could totally cure you. Good Luck Jan > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Peggy, My surgery in Dec 2006 was a walk in the park as well. I felt better a day or two after the surgery than I had in many years. I had more far more discomfort and post-op issues following a recent gum surgery. The minimally invasive surgery tends to be much easier when the tumor is on the left side (all bets are off if the surgeon hits a snag and has to go full open). I understand the reluctance to perform the salt loading test. Have they performed an Aldosterone Renin Ratio on you, though? Would want that to show a rather high ratio... -Doc On Sat, Aug 9, 2008 at 8:48 PM, Peggy s <jrrtt88fan@...> wrote: > Thank you Jan. This is exactly what I needed to hear. When I first found > about it I was all for the surgery. Then I started questioning if it was > necessary. With my symptoms I know I really don't have a choice. I've seen 3 > doctors who all agree and see the surgeon on Tuesday. I hope she is able to > get me in soon because I just want to feel better. I'm only 41 and the > extremely high and uncontrolled b/p scares me and my k goes down so suddenly > I'm afraid of passing out behind the wheel. The tumor is about an inch long. > The docs say its more than likely not cancer which is a relief. I have found > a lot of info about the surgery and syndrome but until you I have not been > able to talk to anyone who has had the surgery. > > Again thank you. > > Peggy > > > Re: Surgery > > Hi Peggy, > > The episode that you describe sounds exactly like what I had. I had > several episodes like it but this was the first time that an ER doc > actually alerted me to the seriosness of the low potassium. I started > looking for a new primary but it took about 6 months. My bp had been > under control but started creeping up. The new primary jumped to the > maxide as the cause of the low potassium but ordered a ct of my chest > as he does this with all seniors. There was the tumor! The doctor > didn't think it was serious but when I looked it up on the internet > you could have put my picture next to the description of symptoms of > primary aldosteronism. My bp kept going up and reached 200/100 at > it's highest point in spite of several bp meds that I tried. Like > you, my potassium was slightly low even on a maximum dose of > potassium. Spiro lowered my bp slightly but made me very sick and > raised my k too high and lowered my sodium too low. Arr was only a > little high but all of the symptoms remained and I could not get my > bp down. Finally, my endo ordered a salt loaded urine test and there > it was. About 4 weeks later I had a left adrenalectomy. I should > mention that prior to surgery, I had a complete heart work up. My > heart is in excellent condition but the doctor could see the > aldosterone in the heart. > > The surgery was a cake walk for me. I had no pain from the surgery > and the day after surgery I went home with no symptoms except > weakness for about a week. All my symptoms were gone and I had a lot > of them. I had about 10 really good months. I had to go back on bp > meds but my bp was under control. About a year ago, I started having > symptoms again. I have flushing and sweating - a lot. The pain has > become full blown neuropathy my k is slightl low and my arr is up to > 44.9. A ct didn't show a tumor on the right gland and my docs can't > give me any answers. I'm am trying to get an appointment in San > Francisco with an endo who has the right credentials. Also, they have > research programs for adrenal disease. > > I'm telling you all of this to let you know that the surgery is > serious but it can be very easy with the right surgeon. Knowing what > I know now, I would have gotten a second opinion before surgery but > it wouldn't have changed anything. I do not regret having the surgery > because I could not control the bp and it certainly helped the > symptoms. I still would not have had an AVS as it is far to > dangerous. With my symptoms, there was really only one choice. It > sounds to me like you also have only one choice. Spiro is not for > everyone and it can have some really bad side effects too. By the > way, I also tried Inspra and I had the same side effects that I had > with Sprio and it didn't even lower my bp. > > My advice to you is to find a good surgeon (one who has done the > surgery several times) and put yourself in his/her care. Think > positively and stop reading all of the bad stuff. Surgery could > totally cure you. > > Good Luck > Jan > > > > > > Hi! I was taken to the ER a month or so ago with chest pain and I > > passed out. My potassium was 2.6 and b/p 175/115. After several > > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > > on my adrenal gland. Since then even after 8 potassium pills a day, > > my potassium has not gone over 3.0 and my b/p not under 144/100. > (I've > > been on 6 b/p pills a day for months and it just doesn't go down). > > Anyway, I go to a surgeon next week for a consult. I have anxious > now > > I'm nervous. Has anyone else had the surgery or anyone know of > anyone > > who has had it? I've read a lot about it on the internet but I > > haven't actually spoke to anyone who has had it. Thanks for any > wise > > words anyone can give me. I'm scared to have the surgery and if I > > don't I'm afraid it could be life threatening. Oh yeah, I was on > the > > Spiro before I was diagnosed for my b/p but it did nothing to help > me > > and when I went to the ER the docs took me off it because I was > being > > overloaded on meds. > > > > Take care everyone! > > Peggy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 yes they did and thats why they decided to do the mri because it was a high ratio [hyperaldosteronism ] Re: Surgery > > Hi Peggy, > > The episode that you describe sounds exactly like what I had. I had > several episodes like it but this was the first time that an ER doc > actually alerted me to the seriosness of the low potassium. I started > looking for a new primary but it took about 6 months. My bp had been > under control but started creeping up. The new primary jumped to the > maxide as the cause of the low potassium but ordered a ct of my chest > as he does this with all seniors. There was the tumor! The doctor > didn't think it was serious but when I looked it up on the internet > you could have put my picture next to the description of symptoms of > primary aldosteronism. My bp kept going up and reached 200/100 at > it's highest point in spite of several bp meds that I tried. Like > you, my potassium was slightly low even on a maximum dose of > potassium. Spiro lowered my bp slightly but made me very sick and > raised my k too high and lowered my sodium too low. Arr was only a > little high but all of the symptoms remained and I could not get my > bp down. Finally, my endo ordered a salt loaded urine test and there > it was. About 4 weeks later I had a left adrenalectomy. I should > mention that prior to surgery, I had a complete heart work up. My > heart is in excellent condition but the doctor could see the > aldosterone in the heart. > > The surgery was a cake walk for me. I had no pain from the surgery > and the day after surgery I went home with no symptoms except > weakness for about a week. All my symptoms were gone and I had a lot > of them. I had about 10 really good months. I had to go back on bp > meds but my bp was under control. About a year ago, I started having > symptoms again. I have flushing and sweating - a lot. The pain has > become full blown neuropathy my k is slightl low and my arr is up to > 44.9. A ct didn't show a tumor on the right gland and my docs can't > give me any answers. I'm am trying to get an appointment in San > Francisco with an endo who has the right credentials. Also, they have > research programs for adrenal disease. > > I'm telling you all of this to let you know that the surgery is > serious but it can be very easy with the right surgeon. Knowing what > I know now, I would have gotten a second opinion before surgery but > it wouldn't have changed anything. I do not regret having the surgery > because I could not control the bp and it certainly helped the > symptoms. I still would not have had an AVS as it is far to > dangerous. With my symptoms, there was really only one choice. It > sounds to me like you also have only one choice. Spiro is not for > everyone and it can have some really bad side effects too. By the > way, I also tried Inspra and I had the same side effects that I had > with Sprio and it didn't even lower my bp. > > My advice to you is to find a good surgeon (one who has done the > surgery several times) and put yourself in his/her care. Think > positively and stop reading all of the bad stuff. Surgery could > totally cure you. > > Good Luck > Jan > > > > > > Hi! I was taken to the ER a month or so ago with chest pain and I > > passed out. My potassium was 2.6 and b/p 175/115. After several > > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > > on my adrenal gland. Since then even after 8 potassium pills a day, > > my potassium has not gone over 3.0 and my b/p not under 144/100. > (I've > > been on 6 b/p pills a day for months and it just doesn't go down). > > Anyway, I go to a surgeon next week for a consult. I have anxious > now > > I'm nervous. Has anyone else had the surgery or anyone know of > anyone > > who has had it? I've read a lot about it on the internet but I > > haven't actually spoke to anyone who has had it. Thanks for any > wise > > words anyone can give me. I'm scared to have the surgery and if I > > don't I'm afraid it could be life threatening. Oh yeah, I was on > the > > Spiro before I was diagnosed for my b/p but it did nothing to help > me > > and when I went to the ER the docs took me off it because I was > being > > overloaded on meds. > > > > Take care everyone! > > Peggy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Peggy, I wish you well on this. If you can tell us the general area in which you live, someone on the discussion group may have a recommendation for a surgeon who routinely does this. You really don't want to use someone who has done only a couple (or none) or has not done one recently. A successful laporoscopic procedure requires a surgeon (often two) with great skill and experience. Don't feel guilty about asking detailed questions. -Jeff On Sat, Aug 9, 2008 at 10:36 PM, Peggy s <jrrtt88fan@...>wrote: > yes they did and thats why they decided to do the mri because it was a > high ratio > > > [hyperaldosteronism ] Re: Surgery > > > > Hi Peggy, > > > > The episode that you describe sounds exactly like what I had. I had > > several episodes like it but this was the first time that an ER doc > > actually alerted me to the seriosness of the low potassium. I started > > looking for a new primary but it took about 6 months. My bp had been > > under control but started creeping up. The new primary jumped to the > > maxide as the cause of the low potassium but ordered a ct of my chest > > as he does this with all seniors. There was the tumor! The doctor > > didn't think it was serious but when I looked it up on the internet > > you could have put my picture next to the description of symptoms of > > primary aldosteronism. My bp kept going up and reached 200/100 at > > it's highest point in spite of several bp meds that I tried. Like > > you, my potassium was slightly low even on a maximum dose of > > potassium. Spiro lowered my bp slightly but made me very sick and > > raised my k too high and lowered my sodium too low. Arr was only a > > little high but all of the symptoms remained and I could not get my > > bp down. Finally, my endo ordered a salt loaded urine test and there > > it was. About 4 weeks later I had a left adrenalectomy. I should > > mention that prior to surgery, I had a complete heart work up. My > > heart is in excellent condition but the doctor could see the > > aldosterone in the heart. > > > > The surgery was a cake walk for me. I had no pain from the surgery > > and the day after surgery I went home with no symptoms except > > weakness for about a week. All my symptoms were gone and I had a lot > > of them. I had about 10 really good months. I had to go back on bp > > meds but my bp was under control. About a year ago, I started having > > symptoms again. I have flushing and sweating - a lot. The pain has > > become full blown neuropathy my k is slightl low and my arr is up to > > 44.9. A ct didn't show a tumor on the right gland and my docs can't > > give me any answers. I'm am trying to get an appointment in San > > Francisco with an endo who has the right credentials. Also, they have > > research programs for adrenal disease. > > > > I'm telling you all of this to let you know that the surgery is > > serious but it can be very easy with the right surgeon. Knowing what > > I know now, I would have gotten a second opinion before surgery but > > it wouldn't have changed anything. I do not regret having the surgery > > because I could not control the bp and it certainly helped the > > symptoms. I still would not have had an AVS as it is far to > > dangerous. With my symptoms, there was really only one choice. It > > sounds to me like you also have only one choice. Spiro is not for > > everyone and it can have some really bad side effects too. By the > > way, I also tried Inspra and I had the same side effects that I had > > with Sprio and it didn't even lower my bp. > > > > My advice to you is to find a good surgeon (one who has done the > > surgery several times) and put yourself in his/her care. Think > > positively and stop reading all of the bad stuff. Surgery could > > totally cure you. > > > > Good Luck > > Jan > > > > > > > > > > Hi! I was taken to the ER a month or so ago with chest pain and I > > > passed out. My potassium was 2.6 and b/p 175/115. After several > > > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > > > on my adrenal gland. Since then even after 8 potassium pills a day, > > > my potassium has not gone over 3.0 and my b/p not under 144/100. > > (I've > > > been on 6 b/p pills a day for months and it just doesn't go down). > > > Anyway, I go to a surgeon next week for a consult. I have anxious > > now > > > I'm nervous. Has anyone else had the surgery or anyone know of > > anyone > > > who has had it? I've read a lot about it on the internet but I > > > haven't actually spoke to anyone who has had it. Thanks for any > > wise > > > words anyone can give me. I'm scared to have the surgery and if I > > > don't I'm afraid it could be life threatening. Oh yeah, I was on > > the > > > Spiro before I was diagnosed for my b/p but it did nothing to help > > me > > > and when I went to the ER the docs took me off it because I was > > being > > > overloaded on meds. > > > > > > Take care everyone! > > > Peggy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hi Peggy Ive had the op, the op and recovery is fairly easy i wouldnt worry about that. My concern would be getting AVS done. If u dont u could have the op for nothing this condition can be in both adrenals and without avs u cannot be sure. Im in the uk and AVS was deemed not necassary, but i think it should be, i dont mean to worry u but its a precaution i wish i had taken as its looking like i have the hyperplasia. They told me from CT scan i hd a 3.5 cm tumor from pathology report after surgery i had several tumors in a hyperplasic gland so they cant be sure !!!! [hyperaldosteronism ] Re: Surgery > > Hi Peggy, > > The episode that you describe sounds exactly like what I had. I had > several episodes like it but this was the first time that an ER doc > actually alerted me to the seriosness of the low potassium. I started > looking for a new primary but it took about 6 months. My bp had been > under control but started creeping up. The new primary jumped to the > maxide as the cause of the low potassium but ordered a ct of my chest > as he does this with all seniors. There was the tumor! The doctor > didn't think it was serious but when I looked it up on the internet > you could have put my picture next to the description of symptoms of > primary aldosteronism. My bp kept going up and reached 200/100 at > it's highest point in spite of several bp meds that I tried. Like > you, my potassium was slightly low even on a maximum dose of > potassium. Spiro lowered my bp slightly but made me very sick and > raised my k too high and lowered my sodium too low. Arr was only a > little high but all of the symptoms remained and I could not get my > bp down. Finally, my endo ordered a salt loaded urine test and there > it was. About 4 weeks later I had a left adrenalectomy. I should > mention that prior to surgery, I had a complete heart work up. My > heart is in excellent condition but the doctor could see the > aldosterone in the heart. > > The surgery was a cake walk for me. I had no pain from the surgery > and the day after surgery I went home with no symptoms except > weakness for about a week. All my symptoms were gone and I had a lot > of them. I had about 10 really good months. I had to go back on bp > meds but my bp was under control. About a year ago, I started having > symptoms again. I have flushing and sweating - a lot. The pain has > become full blown neuropathy my k is slightl low and my arr is up to > 44.9. A ct didn't show a tumor on the right gland and my docs can't > give me any answers. I'm am trying to get an appointment in San > Francisco with an endo who has the right credentials. Also, they have > research programs for adrenal disease. > > I'm telling you all of this to let you know that the surgery is > serious but it can be very easy with the right surgeon. Knowing what > I know now, I would have gotten a second opinion before surgery but > it wouldn't have changed anything. I do not regret having the surgery > because I could not control the bp and it certainly helped the > symptoms. I still would not have had an AVS as it is far to > dangerous. With my symptoms, there was really only one choice. It > sounds to me like you also have only one choice. Spiro is not for > everyone and it can have some really bad side effects too. By the > way, I also tried Inspra and I had the same side effects that I had > with Sprio and it didn't even lower my bp. > > My advice to you is to find a good surgeon (one who has done the > surgery several times) and put yourself in his/her care. Think > positively and stop reading all of the bad stuff. Surgery could > totally cure you. > > Good Luck > Jan > > > > > > Hi! I was taken to the ER a month or so ago with chest pain and I > > passed out. My potassium was 2.6 and b/p 175/115. After several > > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > > on my adrenal gland. Since then even after 8 potassium pills a day, > > my potassium has not gone over 3.0 and my b/p not under 144/100. > (I've > > been on 6 b/p pills a day for months and it just doesn't go down). > > Anyway, I go to a surgeon next week for a consult. I have anxious > now > > I'm nervous. Has anyone else had the surgery or anyone know of > anyone > > who has had it? I've read a lot about it on the internet but I > > haven't actually spoke to anyone who has had it. Thanks for any > wise > > words anyone can give me. I'm scared to have the surgery and if I > > don't I'm afraid it could be life threatening. Oh yeah, I was on > the > > Spiro before I was diagnosed for my b/p but it did nothing to help > me > > and when I went to the ER the docs took me off it because I was > being > > overloaded on meds. > > > > Take care everyone! > > Peggy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 We need to file this as Jan's Story. I don't think we have a Jan's yet. I also make some comments below CEG: On Aug 9, 2008, at 3:42 PM, ipscalifornia wrote: > Hi Peggy, > > The episode that you describe sounds exactly like what I had. I had > several episodes like it but this was the first time that an ER doc > actually alerted me to the seriosness of the low potassium. I started > looking for a new primary but it took about 6 months. My bp had been > under control but started creeping up. The new primary jumped to the > maxide as the cause of the low potassium but ordered a ct of my chest > as he does this with all seniors. There was the tumor! What was really there was a bump on the adrenal. There are a long list of things that can cause bumps on the adrenals besides Conn's. Most common would be non-Conn's. Maxzide will often lower K in PA---its the zide that does it. Not in your chest but in the adrenal I take it? > The doctor > didn't think it was serious but when I looked it up on the internet > you could have put my picture next to the description of symptoms of > primary aldosteronism. My bp kept going up and reached 200/100 at > it's highest point in spite of several bp meds that I tried. Take him my evolution of PA article (and you should read it as well if you have no) so he will recognize why you were drug resistant. Take it to all other Drs who missed your Dx so they wont miss it next time. > Like > you, my potassium was slightly low even on a maximum dose of > potassium. It is difficult to get K up if you do not also lower Na as many on your site will attest. My bet is they did not also recommend lowering the Na or DASHing. Too bad as this will lower the need for drugs. > Spiro lowered my bp slightly but made me very sick and > raised my k too high and lowered my sodium too low. Arr was only a > little high but all of the symptoms remained and I could not get my > bp down. What were the doses tired and how did they make you sick? Again DASH will minimzed the amt of spiro etc. needed for BP control. > Finally, my endo ordered a salt loaded urine test and there > it was. About 4 weeks later I had a left adrenalectomy. I should > mention that prior to surgery, I had a complete heart work up. My > heart is in excellent condition but the doctor could see the > aldosterone in the heart. I have never heard of being able to see aldo in the heart but you can see an enlarged or stiff heart from long term uncontrolled or poorly controlled BP. > > > The surgery was a cake walk for me. I had no pain from the surgery > and the day after surgery I went home with no symptoms except > weakness for about a week. All my symptoms were gone and I had a lot > of them. I had about 10 really good months. I had to go back on bp > meds but my bp was under control. About a year ago, I started having > symptoms again. I have flushing and sweating - a lot. The pain has > become full blown neuropathy my k is slightl low and my arr is up to > 44.9. A ct didn't show a tumor on the right gland and my docs can't > give me any answers. Ask to see the and keep for your records the total pathology report. You did not mention if you had AVS before surgery? > I'm am trying to get an appointment in San > Francisco with an endo who has the right credentials. Also, they have > research programs for adrenal disease. > > I'm telling you all of this to let you know that the surgery is > serious but it can be very easy with the right surgeon. Knowing what > I know now, I would have gotten a second opinion before surgery but > it wouldn't have changed anything. I do not regret having the surgery > because I could not control the bp and it certainly helped the > symptoms. I still would not have had an AVS as it is far to > dangerous. Surgery is more dangerous than AVS. > With my symptoms, there was really only one choice. It > sounds to me like you also have only one choice. Spiro is not for > everyone and it can have some really bad side effects too. By the > way, I also tried Inspra and I had the same side effects that I had > with Sprio and it didn't even lower my bp. If you can please detail all meds and combos you have been on and I may be able to suggest at combo that will avoid having the other adrenal outl. Again did you DASH at the same time. > > > My advice to you is to find a good surgeon (one who has done the > surgery several times) and put yourself in his/her care. Think > positively and stop reading all of the bad stuff. Surgery could > totally cure you. Well surgery had a much better chance of cure if the AVS is + and very unlikely to help it -. You want not only a good surgeon but one who can tell you his cure rate at 1, 3,5, 10 and more years. Actually sugeons rarely follow people for more than a year so you want to talk to the endo or HTN speacialist who follows his (or her) patients and can tell you their team long term follow-up. If you look at the new Endo Society Guidelines you will find that they stress the importance of AVS in the decision for surgery. We have a link to them or they are in our files. > > > Good Luck > Jan May your pressure be low! Clarence Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting, Inc. Clarence Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting, Inc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 > > > > Hi! I was taken to the ER a month or so ago with chest pain and I > > passed out. My potassium was 2.6 and b/p 175/115. After several > > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > > on my adrenal gland. Since then even after 8 potassium pills a day, > > my potassium has not gone over 3.0 and my b/p not under 144/100. > (I've > > been on 6 b/p pills a day for months and it just doesn't go down). > > Anyway, I go to a surgeon next week for a consult. I have anxious > now > > I'm nervous. Has anyone else had the surgery or anyone know of > anyone > > who has had it? I've read a lot about it on the internet but I > > haven't actually spoke to anyone who has had it. Thanks for any > wise > > words anyone can give me. I'm scared to have the surgery and if I > > don't I'm afraid it could be life threatening. Oh yeah, I was on > the > > Spiro before I was diagnosed for my b/p but it did nothing to help > me > > and when I went to the ER the docs took me off it because I was > being > > overloaded on meds. > > > > Take care everyone! > > Peggy > > > Hi Peggy, I just had my left adrenal gland removed on 7/24/08, I was a nervous wreck, I never had any type of surgery. I was having the same symptoms, such as high bp and low potassium and anxiety with heart palpatations the whole nine yards. I've been to so many specialist trying to figure out what was going on. It's been two weeks now since the surgery and my bp is sooo low like 96/64 when I'm still and then when I move around it's like 120/70, but I feel good no regrets so far so good luck on your decision. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Hi Peggy I had surgery two years ago on rt adrenal. Same problem with Spiro. Have you tried Inspra? It worked really well for me, it is very expensive and you may need help getting it approved. Do you have a nephrologist (kidney doc)? he/she should be helping you. FYI, they found kidney stone during my scan so I got two operations for the price of one. The surgery is a snap, you may have a little post op pain due to the gas left in your body cavity (they inflate you for laproscopic surgery). How long have you had high BP? Mine was for 10 years so I'm still on two meds. If I watch my sodium and lose 15lbs my BP would be normal. If you want to chat further we can talk by phone. Good luck Tim Seattle > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Hi Peggy I had surgery two years ago on rt adrenal. Same problem with Spiro. Have you tried Inspra? It worked really well for me, it is very expensive and you may need help getting it approved. Do you have a nephrologist (kidney doc)? he/she should be helping you. FYI, they found kidney stone during my scan so I got two operations for the price of one. The surgery is a snap, you may have a little post op pain due to the gas left in your body cavity (they inflate you for laproscopic surgery). How long have you had high BP? Mine was for 10 years so I'm still on two meds. If I watch my sodium and lose 15lbs my BP would be normal. If you want to chat further we can talk by phone. Good luck Tim Seattle > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Hi Tim Thanks for your story. I really appreciate it. My tumor is on my left side and is about 20 mm. I have had high b/p for 17 years (since shortly after the birth of my daughter ). I'm really not nervous about having surgery. I'm not positive thats the route they will be taking until later today when I see the surgeon. I hope it is though. I'm on 4 b/p pills (they took 2 away because they were causing more problems than helping) and I'm taking 8 10meg of potassium a day. I've researched that it I guess its a high dosage. My K is still low but out of the critical zone ... for the moment. My b/p is still running 170/107. It seems like as soon as they get it under control it goes out of control again. I know this might not be a complete fix and that I may have to still be on meds but hopefully it will be more controlled. It stinks because I'm 41 years old...what will it be like in 10 or 20 years if I don't do something now? And thinking of the damage to my liver and kidneys that the uncontrolled b/p and medicine cocktails really bothers me. I am trying to lose weight and have been for a long time. Unfortunately, 3 of the 4 b/p meds have the side effect of " weight gain " . Its a vicious circle.  I hope recovery is a snap. Although even if I feel better after a few days I plan on taking a couple of weeks off because when I had surgery last I over did it. oops. One thing though, when you had your surgery, did they put you in the hospital a day or so prior to get your b/p down? They are talking about doing that to me. I don't know if thats a usual practice or not. Again thank you for your support and the support of everyone at this group. Peggy Re: Surgery Hi Peggy I had surgery two years ago on rt adrenal. Same problem with Spiro. Have you tried Inspra? It worked really well for me, it is very expensive and you may need help getting it approved. Do you have a nephrologist (kidney doc)? he/she should be helping you. FYI, they found kidney stone during my scan so I got two operations for the price of one. The surgery is a snap, you may have a little post op pain due to the gas left in your body cavity (they inflate you for laproscopic surgery). How long have you had high BP? Mine was for 10 years so I'm still on two meds. If I watch my sodium and lose 15lbs my BP would be normal. If you want to chat further we can talk by phone. Good luck Tim Seattle > > Hi! I was taken to the ER a month or so ago with chest pain and I > passed out. My potassium was 2.6 and b/p 175/115. After several > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > on my adrenal gland. Since then even after 8 potassium pills a day, > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > been on 6 b/p pills a day for months and it just doesn't go down). > Anyway, I go to a surgeon next week for a consult. I have anxious now > I'm nervous. Has anyone else had the surgery or anyone know of anyone > who has had it? I've read a lot about it on the internet but I > haven't actually spoke to anyone who has had it. Thanks for any wise > words anyone can give me. I'm scared to have the surgery and if I > don't I'm afraid it could be life threatening. Oh yeah, I was on the > Spiro before I was diagnosed for my b/p but it did nothing to help me > and when I went to the ER the docs took me off it because I was being > overloaded on meds. > > Take care everyone! > Peggy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Peggy, Left side is a good thing. The recovery is tends to be much easier and likelihood of a conversion to an open procedure is much lower on the left side as there is less tissue to the surgeon to get around to reach the adrenal gland. Prior to my left side surgery, I informed my company that I would be taking between 1 and 2 weeks off for recovery. I also let them know that if, for some unanticipated reason, the surgeon has to convert to a classic open procedure due to excessive bleeding or suspected malignancy, that I'd be out of commission for at least 5 – 6 weeks. With my age, my relatively good health and this being on the left side, I figured the likelihood of this converting to an open procedure to be very low. When I had my surgery, I spent an overnight in the hospital because they wanted me around for observation due to my sleep apnea. I went home the following morning. The strongest pain medication the day after my surgery was Tylenol Extra Strength! I started doing some work from home that day and felt ready to be back at work within 2 days. I ended up taking the remainder of the week off, as I didn't want to want to overdo it. I did avoid strenuous activities and work activities that involved a great deal of time on my feet for about a month as I didn't want to develop a hernia at the extract incision. It took about 2 or 3 months for my BP to fully normalize, though. The day after surgery, it was lower, but not yet well controlled. The problem at that point is that your body has to figure out how to manage your blood pressure since it hasn't had that job for quite a long time. It made use of the HTN drugs a major roller coaster for me. For example, before surgery, 4 or 5 different HTN drugs other than Spiro, couldn't do much to lower my blood pressure. A couple of days after surgery although my BP was still high, half the dosages were like a sledgehammer and dropped my BP so low that I would pass out. I kept going lower and lower on the drugs until I found the roller coaster ride so darn annoying that I stopped taking them altogether and just let my body figure out how to manage itself. I figured that was safer than falling asleep/passing out at the wheel of my car. In retrospect, perhaps if I stayed in the hospital a day or two, we could have figured out an initial cocktail. At your BP levels, that extra day or two may mbe helpful. -Jeff On Tue, Aug 12, 2008 at 10:43 AM, Peggy s <jrrtt88fan@...>wrote: > Hi Tim > Thanks for your story. I really appreciate it. My tumor is on my left > side and is about 20 mm. I have had high b/p for 17 years (since shortly > after the birth of my daughter ). I'm really not nervous about having > surgery. I'm not positive thats the route they will be taking until later > today when I see the surgeon. I hope it is though. I'm on 4 b/p pills > (they took 2 away because they were causing more problems than helping) and > I'm taking 8 10meg of potassium a day. I've researched that it I guess its > a high dosage. My K is still low but out of the critical zone ... for the > moment. My b/p is still running 170/107. It seems like as soon as they get > it under control it goes out of control again. I know this might not be a > complete fix and that I may have to still be on meds but hopefully it will > be more controlled. It stinks because I'm 41 years old...what will it be > like in 10 or 20 years if I don't do something now? And > thinking of the damage to my liver and kidneys that the uncontrolled b/p > and medicine cocktails really bothers me. I am trying to lose weight and > have been for a long time. Unfortunately, 3 of the 4 b/p meds have the side > effect of " weight gain " . Its a vicious circle. > > I hope recovery is a snap. Although even if I feel better after a few > days I plan on taking a couple of weeks off because when I had surgery last > I over did it. oops. One thing though, when you had your surgery, did they > put you in the hospital a day or so prior to get your b/p down? They are > talking about doing that to me. I don't know if thats a usual practice or > not. > Again thank you for your support and the support of everyone at this group. > Peggy > > > Re: Surgery > > Hi Peggy > I had surgery two years ago on rt adrenal. Same problem with Spiro. Have > you tried > Inspra? It worked really well for me, it is very expensive and you may need > help getting it > approved. Do you have a nephrologist (kidney doc)? he/she should be helping > you. FYI, > they found kidney stone during my scan so I got two operations for the > price of one. > > The surgery is a snap, you may have a little post op pain due to the gas > left in your body > cavity (they inflate you for laproscopic surgery). > > How long have you had high BP? Mine was for 10 years so I'm still on two > meds. If I watch > my sodium and lose 15lbs my BP would be normal. > > If you want to chat further we can talk by phone. > > Good luck > > Tim > > Seattle > > > > > > Hi! I was taken to the ER a month or so ago with chest pain and I > > passed out. My potassium was 2.6 and b/p 175/115. After several > > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor > > on my adrenal gland. Since then even after 8 potassium pills a day, > > my potassium has not gone over 3.0 and my b/p not under 144/100. (I've > > been on 6 b/p pills a day for months and it just doesn't go down). > > Anyway, I go to a surgeon next week for a consult. I have anxious now > > I'm nervous. Has anyone else had the surgery or anyone know of anyone > > who has had it? I've read a lot about it on the internet but I > > haven't actually spoke to anyone who has had it. Thanks for any wise > > words anyone can give me. I'm scared to have the surgery and if I > > don't I'm afraid it could be life threatening. Oh yeah, I was on the > > Spiro before I was diagnosed for my b/p but it did nothing to help me > > and when I went to the ER the docs took me off it because I was being > > overloaded on meds. > > > > Take care everyone! > > Peggy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2008 Report Share Posted August 13, 2008 I don't want to pour cold water on the party but I was in hospital a full week after left side laproscopic surgery. I was off work for 4 months and the Doc was not happy about me going back then. My employer had to agree a phased return over many weeks - to start with just an hour or two one day a week building up to full time.  Helen in Scotland Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2008 Report Share Posted August 13, 2008 Agree that not everyone sails thru lap surgery. Better now than when it first started. Another problem is that the adrenal frequently looks like piece of hamburger when it comes out the hole and pathology may not be as clear. One of the early pts I referred took 8 hrs and had a nerve paralysis for a while as they did not move him from time to time. Again this is something we need to add to database. After surgery how soon were you able to be up and about as normal? How soon were you able to return to work? How long did you have to take narcotic pain meds? How long did you have to take non-narcotic pain meds? How long before you had not pains at all? On Aug 13, 2008, at 11:28 AM, helen pearson wrote: > I don't want to pour cold water on the party but I was in hospital > a full week after left side laproscopic surgery. I was off work for > 4 months and the Doc was not happy about me going back then. My > employer had to agree a phased return over many weeks - to start > with just an hour or two one day a week building up to full time. > > Helen in Scotland > > Send instant messages to your online friends http:// > uk.messenger. > > Quote Link to comment Share on other sites More sharing options...
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