Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Sorry one more question. Will taking the amilioride (sp)have any effect on the vein sampling test? I asked the nephrologist that and he wasn't sure. Thanks! > > Wow, this forum is great. I wish I had of found it sooner. It is > so nice to see others that are experiencing the same thing that I > am. I've felt like a chronic complainer for so long that I was > starting to believe that I really was making things up. > > I think my problems started about 5 years ago with migraines that > left me numb on the left side of my body...things just kept getting > weirder from there. I'd go to my doctor and I'd get the typical > response, " you're young (23), you're healthy, take this migraine > sample medication and get out of here " . The past 2 years my blood > pressure started rising. This time they blamed it on my mother > being sick (cancer) and then passing away (she was 46). Every month > I started to feel worse and worse. I started to feel really tired > all the time, my muscles were weak and the headaches continued. This > time they blamed it on my thyroid problem (hypothyroid for which I > take .10mg a day since I was 16). Finally this year, I switched > doctors...not sure what took me so long. I guess I was just fed up > with being made to feel like I was nuts. > > My new doctor took my headaches seriously and did an electrolyte > test which revealed low potassium levels (2.2). I recently had a CT > scan revealed an adenoma on my left adrenal gland. I'm currently > waiting to have that vein sampling test done and I am going to meet > with a surgeon on Oct. 19th. I'm currently on K-dur 20 meq 4 times > a day, labetolol 200mg 2 times a day and amileride 5mg once per day. > My BP remains high avg 150-160/94-108 but my potassium for the first > time is 3.5 (personal record so far). > > I have a few questions that I hope some of you can answer: > > Is there any relation b/n hypothyroid and hyperaldosteronism or am I > just lucky to have both? > > Can anyone recommend a good Canadian doctor with knowledge in this > area? I'm from Halifax, NS and I'm a bit worried since I'm the first > case they've seen of Conn's. I'm currently seeing a nephrologist. > > Do these tumors tend to spread? My CT also showed a spot on my > spleen? Docs say it's a small node and not to worry about it but I > seem to be prone to cysts and now tumors (also have ovarian cysts > and fibroid tumors)...I find this all very troubling given my family > history of cancer. My grandmother died at 52 from cancer as well. > > Is this genetic? > > Has anyone had kids post surgery? > > If they decide not to take the tumor out...can you still take all of > these drugs while pregnant? Is that even an option? > > Sorry for all the questions but I'm so excited to have found people > like me out there! > > Terri > 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 9/28/07 1:55:11 PM, terridelorenzo@... writes: > > Wow, this forum is great. I wish I had of found it sooner. It is > so nice to see others that are experiencing the same thing that I > am. I've felt like a chronic complainer for so long that I was > starting to believe that I really was making things up. > > I think my problems started about 5 years ago with migraines that > left me numb on the left side of my body...things just kept getting > weirder from there. I'd go to my doctor and I'd get the typical > response, " you're young (23), you're healthy, take this migraine > sample medication and get out of here " . The past 2 years my blood > pressure started rising. This time they blamed it on my mother > being sick (cancer) and then passing away (she was 46). Every month > I started to feel worse and worse. I started to feel really tired > all the time, my muscles were weak and the headaches continued. This > time they blamed it on my thyroid problem (hypothyroid for which I > take .10mg a day since I was 16). Finally this year, I switched > doctors...not sure what took me so long. I guess I was just fed up > with being made to feel like I was nuts. > > My new doctor took my headaches seriously and did an electrolyte > test which revealed low potassium levels (2.2). I recently had a CT > scan revealed an adenoma on my left adrenal gland. I'm currently > waiting to have that vein sampling test done and I am going to meet > with a surgeon on Oct. 19th. I'm currently on K-dur 20 meq 4 times > a day, labetolol 200mg 2 times a day and amileride 5mg once per day. > My BP remains high avg 150-160/94-108 but my potassium for the first > time is 3.5 (personal record so far). > > I have a few questions that I hope some of you can answer: > > Is there any relation b/n hypothyroid and hyperaldosteronism or am I > just lucky to have both? > There is a Japanese report that hypothyroidism can cause a syndrome that looks like PA. and goes away with Thyroid replacement. We need more info on renin and aldo testing. > > Can anyone recommend a good Canadian doctor with knowledge in this > area? I'm from Halifax, NS and I'm a bit worried since I'm the first > case they've seen of Conn's. I'm currently seeing a nephrologist. > I would recommend you to to Dr. Sandy Logan in Toronto. Tell him I sent you. > > Do these tumors tend to spread? > Almost never. > My CT also showed a spot on my > spleen? Docs say it's a small node and not to worry about it but I > seem to be prone to cysts and now tumors (also have ovarian cysts > and fibroid tumors)...I find this all very troubling given my family > history of cancer. My grandmother died at 52 from cancer as well. > > Is this genetic? > > Has anyone had kids post surgery? > > If they decide not to take the tumor out...can you still take all of > these drugs while pregnant? Is that even an option? > > Sorry for all the questions but I'm so excited to have found people > like me out there! > > Terri > > > > 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 I don't have any results to date on the renin/aldosterone testing. They don't have a lab that tests this in Halifax so they ship the samples to Quebec. It takes 4-6 weeks for the results. The first one I did came back that the sample was not viable. The next two I did haven't come back yet. The lab tech who drew the blood said that they have been having difficulty with the test b/c it's so rarely done and that they have changed the methods lately. She said they used to make people sit still for 30 mins and then take the sample, then they used to make people walk vigourously for 30 mins, now they just take it as you come in. Any thoughts on this? I was taking all of my meds during this test. When I did the 24 hour urine collection I took a very serious migraine that required hospitalization. My pressure went to 222/136 and I was having a hard time speaking and standing. They put me on an IV for fluids (I have no idea what it was) then they gave 2 drugs to treat the migraine (one was the drug and the other was something to prevent side effects of the first). My husband told them I was in the middle of a 24 hour collection so they kept all of my urine which we added to the sample when we got home. My nephrologist said this shouldn't have effected the results of my 24 urine sample. Dr, Grim, do you have any thoughts on this? > > > In a message dated 9/28/07 1:55:11 PM, terridelorenzo@... writes: > > > > > > Wow, this forum is great. I wish I had of found it sooner. It is > > so nice to see others that are experiencing the same thing that I > > am. I've felt like a chronic complainer for so long that I was > > starting to believe that I really was making things up. > > > > I think my problems started about 5 years ago with migraines that > > left me numb on the left side of my body...things just kept getting > > weirder from there. I'd go to my doctor and I'd get the typical > > response, " you're young (23), you're healthy, take this migraine > > sample medication and get out of here " . The past 2 years my blood > > pressure started rising. This time they blamed it on my mother > > being sick (cancer) and then passing away (she was 46). Every month > > I started to feel worse and worse. I started to feel really tired > > all the time, my muscles were weak and the headaches continued. This > > time they blamed it on my thyroid problem (hypothyroid for which I > > take .10mg a day since I was 16). Finally this year, I switched > > doctors...not sure what took me so long. I guess I was just fed up > > with being made to feel like I was nuts. > > > > My new doctor took my headaches seriously and did an electrolyte > > test which revealed low potassium levels (2.2). I recently had a CT > > scan revealed an adenoma on my left adrenal gland. I'm currently > > waiting to have that vein sampling test done and I am going to meet > > with a surgeon on Oct. 19th. I'm currently on K-dur 20 meq 4 times > > a day, labetolol 200mg 2 times a day and amileride 5mg once per day. > > My BP remains high avg 150-160/94-108 but my potassium for the first > > time is 3.5 (personal record so far). > > > > I have a few questions that I hope some of you can answer: > > > > Is there any relation b/n hypothyroid and hyperaldosteronism or am I > > just lucky to have both? > > > There is a Japanese report that hypothyroidism can cause a syndrome that > looks like PA. > and goes away with Thyroid replacement. > > We need more info on renin and aldo testing. > > > > Can anyone recommend a good Canadian doctor with knowledge in this > > area? I'm from Halifax, NS and I'm a bit worried since I'm the first > > case they've seen of Conn's. I'm currently seeing a nephrologist. > > > I would recommend you to to Dr. Sandy Logan in Toronto. Tell him I sent > you. > > > > Do these tumors tend to spread? > > > Almost never. > > > > My CT also showed a spot on my > > spleen? Docs say it's a small node and not to worry about it but I > > seem to be prone to cysts and now tumors (also have ovarian cysts > > and fibroid tumors)...I find this all very troubling given my family > > history of cancer. My grandmother died at 52 from cancer as well. > > > > Is this genetic? > > > > Has anyone had kids post surgery? > > > > If they decide not to take the tumor out...can you still take all of > > these drugs while pregnant? Is that even an option? > > > > Sorry for all the questions but I'm so excited to have found people > > like me out there! > > > > Terri > > > > > > > > > > > > > > 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 Does anyone find that every day is completely different? Some days I feel ok (not 100% but functional) and others I am completely immobilized. Any day could be a combination of the following: My legs and arms are weak, sweating like crazy, heart fluttering, my ears are popping, swelling up and looking pregnant, legs are severly cramping, weird pain in my left shoulder, migraines, crazy moods that are uncharacteristic for me(unexplicably anxious or crying), lightheaded, etc. I find it hard to explain to people and my employer b/c one day I'm fine and moving around and the next I'm housebound. I'm a very active person and I'm having a hard time with the reduction in my abilities. Lately though I am finding my right arm is involuntaryily shaking...that is a new one for me. Is that normal for the symptoms to fluctuate so much? I'm healthy otherwise. 28 years old, normal weight,etc. > > > > > > > > > In a message dated 9/28/07 1:55:11 PM, terridelorenzo@ In a messa > > > > > > > > > > > > > > Wow, this forum is great. I wish I had of found it sooner. It is > > > > so nice to see others that are experiencing the same thing that I > > > > am. I've felt like a chronic complainer for so long that I was > > > > starting to believe that I really was making things up. > > > > > > > > I think my problems started about 5 years ago with migraines that > > > > left me numb on the left side of my body...things just kept > > getting > > > > weirder from there. I'd go to my doctor and I'd get the typical > > > > response, " you're young (23), you're healthy, take this migraine > > > > sample medication and get out of here " . The past 2 years my blood > > > > pressure started rising. This time they blamed it on my mother > > > > being sick (cancer) and then passing away (she was 46). Every > > month > > > > I started to feel worse and worse. I started to feel really tired > > > > all the time, my muscles were weak and the headaches continued. > > This > > > > time they blamed it on my thyroid problem (hypothyroid for which > > I > > > > take .10mg a day since I was 16). Finally this year, I switched > > > > doctors...not sure what took me so long. I guess I was just fed > > up > > > > with being made to feel like I was nuts. > > > > > > > > My new doctor took my headaches seriously and did an electrolyte > > > > test which revealed low potassium levels (2.2). I recently had a > > CT > > > > scan revealed an adenoma on my left adrenal gland. I'm currently > > > > waiting to have that vein sampling test done and I am going to > > meet > > > > with a surgeon on Oct. 19th. I'm currently on K-dur 20 meq 4 > > times > > > > a day, labetolol 200mg 2 times a day and amileride 5mg once per > > day. > > > > My BP remains high avg 150-160/94-108 but my potassium for the > > first > > > > time is 3.5 (personal record so far). > > > > > > > > I have a few questions that I hope some of you can answer: > > > > > > > > Is there any relation b/n hypothyroid and hyperaldosteronism or > > am I > > > > just lucky to have both? > > > > > > > There is a Japanese report that hypothyroidism can cause a > > syndrome that > > > looks like PA. > > > and goes away with Thyroid replacement. > > > > > > We need more info on renin and aldo testing. > > > > > > > > Can anyone recommend a good Canadian doctor with knowledge in > > this > > > > area? I'm from Halifax, NS and I'm a bit worried since I'm the > > first > > > > case they've seen of Conn's. I'm currently seeing a nephrologist. > > > > > > > I would recommend you to to Dr. Sandy Logan in Toronto. Tell him > > I sent > > > you. > > > > > > > > Do these tumors tend to spread? > > > > > > > Almost never. > > > > > > > > > > My CT also showed a spot on my > > > > spleen? Docs say it's a small node and not to worry about it but > > I > > > > seem to be prone to cysts and now tumors (also have ovarian cysts > > > > and fibroid tumors)...I find this all very troubling given my > > family > > > > history of cancer. My grandmother died at 52 from cancer as well. > > > > > > > > Is this genetic? > > > > > > > > Has anyone had kids post surgery? > > > > > > > > If they decide not to take the tumor out...can you still take > > all of > > > > these drugs while pregnant? Is that even an option? > > > > > > > > Sorry for all the questions but I'm so excited to have found > > people > > > > like me out there! > > > > > > > > Terri > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 October 1, 2007 Report Share Posted October 1, 2007 Oh boy, to your symptoms sound familiar!! Wondering if they checked your potassium level, because a lot of the muscle aches/weakness can be because of low potassium (K). Make sure and include as much potassium rich foods in your diet as possible. If you are not following the DASH diet or the Rice diet, you should be. There is an abbreviated DASH diet on line to download, I believe on the NIH website, but just google it. I also suffer from migraines, and daily constant headaches. Have been trying since 2004 to find a preventative, but no luck so far. My doc is against RXing any pain meds, other than the triptans, and those don't' work for me. My sister is in BC and also has health issues, so I understand the frustration with Canadian medicine. We have are problems here in the US as well. Good luck with your AVS and make sure that your vascular surgeon is an expert at this particular procedure, it can be a nightmare if he/she isn't!! Well, welcome to the forum and good luck, I hope you have many 'good' days and find the strength to handle the bad ones. Take care, Kim in MN -- In hyperaldosteronism , " terridelorenzo " <terridelorenzo@...> wrote: > > Does anyone find that every day is completely different? Some days > I feel ok (not 100% but functional) and others I am completely > immobilized. Any day could be a combination of the following: My > legs and arms are weak, sweating like crazy, heart fluttering, my > ears are popping, swelling up and looking pregnant, legs are severly > cramping, weird pain in my left shoulder, migraines, crazy moods > that are uncharacteristic for me(unexplicably anxious or crying), > lightheaded, etc. I find it hard to explain to people and my > employer b/c one day I'm fine and moving around and the next I'm > housebound. I'm a very active person and I'm having a hard time with > the reduction in my abilities. Lately though I am finding my right > arm is involuntaryily shaking...that is a new one for me. Is that > normal for the symptoms to fluctuate so much? I'm healthy > otherwise. 28 years old, normal weight,etc. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Yes they did check my potassium. That was the first clue they got that my high blood pressure might be coming from somewhere else. It was really low 2.2 I think the first time I was tested. Since then they've put my on 20 meq of potassium supplements 4 times per day. They were horrible to digest at first but now I think I am getting the hang of them. I've been on them for over a month now and my potassium wasn't improving much until they put me on amilioride. Now it's 3.4. I have noticed a difference in the muscles weakness but I still cramp up a lot and my heart is still always racing...not to mention that most of the other symptoms haven't gone away. I just spent the last 2 days in bed with one of the worst migraines I've ever had. I was scared I was having a stroke b/c I couldn't feel the whole left side of my body. I'm feeling a bit better today though but I still have a headache. Thanks for the DASH advice. I printed off the abrreviated version on Saturday and I ordered the book online. I really hope this works because I am really excited to feel better! Thanks for the encouragement Kim...after the past 2 days I really needed it! > > > > Does anyone find that every day is completely different? Some days > > I feel ok (not 100% but functional) and others I am completely > > immobilized. Any day could be a combination of the following: My > > legs and arms are weak, sweating like crazy, heart fluttering, my > > ears are popping, swelling up and looking pregnant, legs are severly > > cramping, weird pain in my left shoulder, migraines, crazy moods > > that are uncharacteristic for me(unexplicably anxious or crying), > > lightheaded, etc. I find it hard to explain to people and my > > employer b/c one day I'm fine and moving around and the next I'm > > housebound. I'm a very active person and I'm having a hard time with > > the reduction in my abilities. Lately though I am finding my right > > arm is involuntaryily shaking...that is a new one for me. Is that > > normal for the symptoms to fluctuate so much? I'm healthy > > otherwise. 28 years old, normal weight,etc. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Hi Dr. Grim, They won't put me on the Spiro or Inspra until after they do the AVS b/c they think it will affect the test results. Do you think that this may not be Conn's? Is taking those drugs the only way confirm the diagnosis? I think my docs were thinking the AVS was the only way...at least that's how they explained it to me. He said that we know you have all the symptoms of Conn's and we know you have a tumor on your adrenal gland...now we have to determine if the tumor is causing the symptoms. Do you have any thoughts on that, Dr. Grim? > > > In a message dated 10/1/07 4:10:14 PM, cornerstone@... writes: > > > > Good luck with your AVS and make sure that your vascular surgeon is an > > expert at this particular procedure, it can be a nightmare if he/she > > isn't!! > > > > Dont need AVS till Dx is clear and fail to respond to sprio or Inspra. You > dont need a vascular surgeon if needed but someone who has done a lot of them > and can tell you his results-best in a published paper. > > > > 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 October 3, 2007 Report Share Posted October 3, 2007 My plasma renin level tests came back. My aldosterone was 2309 on the second test they did, it was 1350 on the first. The tests were done 3 days apart. The plasma renin ratio was 655 on the first test. I'm not really sure what that means really. Anyone have any thoughts? They have finally confirmed the diagnonsis of Conn's now....they were previously waiting until these test results came back. They still want to do the AVS which I'm still not sold on. How much more proof do they need? I'm starting to feel like they are using me as a lab rat b/c they haven't dealt with Conn's before. > > I think we have a list of abbreviations. If not go to bloodpressureline. > > > > 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...
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