Guest guest Posted February 19, 2012 Report Share Posted February 19, 2012 Greetings everyone! I'm new to the group and thought I'd say 'hi' along with some questions. I'm currently undergoing testing for what I like to call a mystery illness, but the current investigation is towards primary aldosteronism. I have resistant high blood pressure, low potassium and fatigue. Several other things have been investigated before this and ruled out because those aren't my only symptoms - so I was hoping to get some thoughts on others with the condition to see if anyone has experienced anything similar. Note; I haven't actually been tested for aldosteronism yet, - I have to be off some medication for a couple more weeks and my potassium has to be normal, so I'm on postassium prescribed by my endocrinologist for the past week - retested friday and I should have those results early this week. Now, here are the symptoms I have that don't seem to be related from what I've read of hyperaldosteronism: - Recently, my doctor has found blood in my urine. The first time it appeared to be due to a uti - but a recheck showed only blood in my urine, so I'm also going to see a urologist. - Pain - I tend to have bouts of aches and pain that run through my whole body. it can happen at any time but is worse at night. No doctor has had a good explanation for it. - Brain fog/fuzzy thinking/lack of attention - this is unusual for me, but has been getting progressively worse over the past year, along with the other symptoms - High Cholesterol - Dry, strawlike hair and some hair loss around the temples - Digestive upsets, gassy & bloated, sometimes constipation - More tired and likely to be in pain after I " exert " myself, which can be anything from vacuuming to having lunch with friends. - Restless Leg Syndrome with Periodic Limb Movement while sleeping. (diagnosed through a sleep study) Do any of these ever go along with primary aldosteronism? I've also been tested for a number of other conditions that have been ruled out like fibromyalgia, hypothyroidism, cushings disease, and a bunch of other autoimmune disorders. The pain is probably the most confusing because its the most pressing of the symptoms to me. I asked if low potassium could be causing it and I've been told that it can cause cramping but not really what I am feeling, which isn't. I've also not necessarily had consistant low potassium. Just over a month ago it was at 3.7 and then a few weeks later it was down to 3.3. I would love to hear everyones experiences and thoughts about this, and see if anyone had any of these symptoms as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 On Feb 19, 2012, at 8:11 AM, TamiW wrote: Greetings everyone! I'm new to the group and thought I'd say 'hi' along with some questions. I'm currently undergoing testing for what I like to call a mystery illness, but the current investigation is towards primary aldosteronism. I have resistant high blood pressure, low potassium and fatigue. Several other things have been investigated before this and ruled out because those aren't my only symptoms - so I was hoping to get some thoughts on others with the condition to see if anyone has experienced anything similar. Note; I haven't actually been tested for aldosteronism yet, - I have to be off some medication for a couple more weeks and my potassium has to be normal, so I'm on postassium prescribed by my endocrinologist for the past week - retested friday and I should have those results early this week. Now, here are the symptoms I have that don't seem to be related from what I've read of hyperaldosteronism: - Recently, my doctor has found blood in my urine. again we need all of your story as do the Drs who are taking care of you.Are you male or female, what is your ethnicity, age, smoker, past Hx of UTIs. Can you see the blood. When they collect the urine I assume it was a clean catch midstream urine. The first time it appeared to be due to a uti - but a recheck showed Agin blood in my urine, so I'm also going to see a urologist. - Pain - I tend to have bouts of aches and pain that run through my whole body. it can happen at any time but is worse at night. No doctor has had a good explanation for it.It is called hypokalemia. - Brain fog/fuzzy thinking/lack of attention - this is unusual for me, but has been getting progressively worse over the past year, along with the other symptomsAs you will see from reading other's stories brain fog is a common complaint but please tell us what you mean by this term--put in your story. - High CholesterolYou chose the wrong grandparents and are feeding the roots of your family tree too many calories and too much fat. - Dry, strawlike hair and some hair loss around the templesHmm I was thinking you were female but now I am not sure. - Digestive upsets, gassy & bloated, sometimes constipationAKA hypokalemia gastric/intestinal paresis or stasis or spasm. - More tired and likely to be in pain after I "exert" myself, which can be anything from vacuuming to having lunch with friends.You are not eating enough K and too much salt and making too much aldo. So these are most likely related to low K unless you are taking a statin. - Restless Leg Syndrome with Periodic Limb Movement while sleeping. (diagnosed through a sleep study).Will get better when you DASH The pain is probably the most confusing because its the most pressing of the symptoms to me. I asked if low potassium could be causing it and I've been told that it can cause cramping but not really what I am feeling, which isn't. I've also not necessarily had consistant low potassium. Just over a month ago it was at 3.7 and then a few weeks later it > down to 3.3.How hard are you to get blood from? Ask them to draw without a tourniquet and see our files on how to draw and process blood to avoid pseudo normokalemia when you are hypokalemic. I would love to hear everyones experiences and thoughts about this, and see if anyone had any of these symptoms as well.Please read my evolution paper so we are the same page. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 Thank you for your response, this is all new to me so I didn't know necessarily all the info I should include. Here are some follow up answers. > > - Recently, my doctor has found blood in my urine. > > > again we need all of your story as do the Drs who are taking care of > you. The story is long, but I will do my best to explain. The high blood pressure came on pretty spontaneously after a life time of rather low bloodpressure. I can't remember the values, but at the time, doctors and nurses often commented on the fact that it was surprisingly low. However, the raise in blood pressure happened around the time that I was going through a very stressful time in my life, so that was assumed to be the cause. I have been gradually feeling more and more exhausted and fatigued for the past few years. I've been checked for thyroid several times, because I have been told that my symptoms look very much like classical hypothyroidism. It started with a combination of fatigue and daytime sleepiness. I also started to struggle with insomnia. Well, I've had bouts of it my whole life, but the last couple years have been much worse. I've had sleep studies done, and at first the problem was assumed to be RLS, but the most recent sleep study also revealed underlying alpha intrusions, which according to my doctor is a sign of pain at night. The insomnia was explained as being a combination of the RLS and the alpha intrusions from pain. Concurrently, I was starting to have aches and pains after exerting myself. At first it seemed like it was just from being tired, at least that's how I explained it in my head - but was so infrequent that I never bothered to tell my doctor about it. But gradually it became more and more frequent, really getting bad starting this past summer. This past november it approached happening nearly every day, feeling like a deep bone ache. The only way I've been able to describe it is that it feels a lot like growing pains or like when you're getting the flu. It tends to be worse at night, but strike at any time. And for a couple weeks recently I was feeling okay with minimal pain but its back again. The first time I had a run in with low potassium was 2008. I've had it go up and down since then, though usually its in the higher 3s. I wasn't tested in early 2011, but its been consistently problematic since Sept 2011, the first time in 2011 I've been tested. > > Are you male or female, what is your ethnicity, age, smoker, past Hx > of UTIs. Female, White, 35, never smoked, only had two UTIs, one several years ago, and the one that was found a few weeks ago. > Can you see the blood. When they collect the urine I assume > it was a clean catch midstream urine. Clean catch, and no, I can't see it. My doctor tested in the office, I don't know the specifics of that test. > > > The first time it appeared to be due to a uti - but a recheck showed > > Agin blood in my urine, so I'm also going to see a urologist. > > - Pain - I tend to have bouts of aches and pain that run through my > > whole body. it can happen at any time but is worse at night. No > > doctor has had a good explanation for it. > > > > It is called hypokalemia. So, what I've been told is that the problems from low potassium should be more of a cramp or a twitch, that doesn't seem to be what is happening, it is just a deep aching feeling. Does that still sound like hypokalemia? My primary doctor is working with me on the pain more than my endocrinologist. He (my endo) knows about the pain but I haven't spoken in depth with him on it like I have my primary doctor. > > - Brain fog/fuzzy thinking/lack of attention - this is unusual for > > me, but has been getting progressively worse over the past year, > > along with the other symptoms > > > As you will see from reading other's stories brain fog is a common > complaint but please tell us what you mean by this term--put in your > story. Hard to describe. I'm not thinking as clearly. Problem-solving tasks take me a lot longer. My work is as a web designer and front end developer, and writing code has become very difficult, where normally its been a very easy task for me. Normally I'm a quick learner, but within the past 6 months I feel like I have reading comprehension issues and just can't grasp new concepts, at least without a lot of re-reading and struggling, which is atypical for me. I'm also very easily distracted, where I used to be able to get down and really focus. I also seem to have trouble completing thoughts, or forgetting words. Like talking to someone, I might just blank on a very common word. I'm sure this happens to everyone, but now this seems to happen every conversation I have. > > - High Cholesterol > > > > You chose the wrong grandparents and are feeding the roots of your > family tree too many calories and too much fat. Fair enough. > > > - Dry, strawlike hair and some hair loss around the temples > > > Hmm I was thinking you were female but now I am not sure. No, female. Which is why the hair loss is disturbing. Its also probably more able the temples at the top corners of my face/hairline. I think this is why hypothyroidism was considered, as well. > > > - Digestive upsets, gassy & bloated, sometimes constipation > > > > AKA hypokalemia gastric/intestinal paresis or stasis or spasm. Okay! That explains a lot, this has been one thing that really didn't seem to tie into my symptoms until I read this explanation. > > > - More tired and likely to be in pain after I " exert " myself, which > > can be anything from vacuuming to having lunch with friends. > > > You are not eating enough K and too much salt and making too much > aldo. So these are most likely related to low K unless you are taking > a statin. > So this is an area I have some confusion over. I eat a diet that should be pretty rich in potassium. When I first had potassium, my primary doctor sent me a list of foods I should add to my diet, and my first reaction was that I was already eating most of those foods on a regular basis. So should I be assuming my diet is deficient still, or that I need more potassium. I'm also taking lisinopril for blood pressure, which as I understand it, can cause high potassium. > > - Restless Leg Syndrome with Periodic Limb Movement while sleeping. > > (diagnosed through a sleep study). > > > Will get better when you DASH Can you expand on this? Is it excess salt that is the problem? I'm just trying to understand what, if any connection the RLS may have as this has been a plague for me for a long time. > > The pain is probably the most confusing because its the most > > pressing of the symptoms to me. I asked if low potassium could be > > causing it and I've been told that it can cause cramping but not > > really what I am feeling, which isn't. > > > > I've also not necessarily had consistant low potassium. Just over a > > month ago it was at 3.7 and then a few weeks later it > down to 3.3. > > > > How hard are you to get blood from? Ask them to draw without a > tourniquet and see our files on how to draw and process blood to avoid > pseudo normokalemia when you are hypokalemic. My right arm is not problematic at all, so I always have them draw from there. I will check the file you recommend. > > > > I would love to hear everyones experiences and thoughts about this, > > and see if anyone had any of these symptoms as well. > > > > Please read my evolution paper so we are the same page. > > > > > Thank you for directing me to this. I haven't read it yet, but will now. I also did not realize the wealth of information in the files, so I will take a look. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 Thank you for your response, this is all new to me so I didn't know necessarily all the info I should include. Here are some follow up answers. > > - Recently, my doctor has found blood in my urine. > > > again we need all of your story as do the Drs who are taking care of > you. The story is long, but I will do my best to explain. The high blood pressure came on pretty spontaneously after a life time of rather low bloodpressure. I can't remember the values, but at the time, doctors and nurses often commented on the fact that it was surprisingly low. However, the raise in blood pressure happened around the time that I was going through a very stressful time in my life, so that was assumed to be the cause. I have been gradually feeling more and more exhausted and fatigued for the past few years. I've been checked for thyroid several times, because I have been told that my symptoms look very much like classical hypothyroidism. It started with a combination of fatigue and daytime sleepiness. I also started to struggle with insomnia. Well, I've had bouts of it my whole life, but the last couple years have been much worse. I've had sleep studies done, and at first the problem was assumed to be RLS, but the most recent sleep study also revealed underlying alpha intrusions, which according to my doctor is a sign of pain at night. The insomnia was explained as being a combination of the RLS and the alpha intrusions from pain. Concurrently, I was starting to have aches and pains after exerting myself. At first it seemed like it was just from being tired, at least that's how I explained it in my head - but was so infrequent that I never bothered to tell my doctor about it. But gradually it became more and more frequent, really getting bad starting this past summer. This past november it approached happening nearly every day, feeling like a deep bone ache. The only way I've been able to describe it is that it feels a lot like growing pains or like when you're getting the flu. It tends to be worse at night, but strike at any time. And for a couple weeks recently I was feeling okay with minimal pain but its back again. The first time I had a run in with low potassium was 2008. I've had it go up and down since then, though usually its in the higher 3s. I wasn't tested in early 2011, but its been consistently problematic since Sept 2011, the first time in 2011 I've been tested. > > Are you male or female, what is your ethnicity, age, smoker, past Hx > of UTIs. Female, White, 35, never smoked, only had two UTIs, one several years ago, and the one that was found a few weeks ago. > Can you see the blood. When they collect the urine I assume > it was a clean catch midstream urine. Clean catch, and no, I can't see it. My doctor tested in the office, I don't know the specifics of that test. > > > The first time it appeared to be due to a uti - but a recheck showed > > Agin blood in my urine, so I'm also going to see a urologist. > > - Pain - I tend to have bouts of aches and pain that run through my > > whole body. it can happen at any time but is worse at night. No > > doctor has had a good explanation for it. > > > > It is called hypokalemia. So, what I've been told is that the problems from low potassium should be more of a cramp or a twitch, that doesn't seem to be what is happening, it is just a deep aching feeling. Does that still sound like hypokalemia? My primary doctor is working with me on the pain more than my endocrinologist. He (my endo) knows about the pain but I haven't spoken in depth with him on it like I have my primary doctor. > > - Brain fog/fuzzy thinking/lack of attention - this is unusual for > > me, but has been getting progressively worse over the past year, > > along with the other symptoms > > > As you will see from reading other's stories brain fog is a common > complaint but please tell us what you mean by this term--put in your > story. Hard to describe. I'm not thinking as clearly. Problem-solving tasks take me a lot longer. My work is as a web designer and front end developer, and writing code has become very difficult, where normally its been a very easy task for me. Normally I'm a quick learner, but within the past 6 months I feel like I have reading comprehension issues and just can't grasp new concepts, at least without a lot of re-reading and struggling, which is atypical for me. I'm also very easily distracted, where I used to be able to get down and really focus. I also seem to have trouble completing thoughts, or forgetting words. Like talking to someone, I might just blank on a very common word. I'm sure this happens to everyone, but now this seems to happen every conversation I have. > > - High Cholesterol > > > > You chose the wrong grandparents and are feeding the roots of your > family tree too many calories and too much fat. Fair enough. > > > - Dry, strawlike hair and some hair loss around the temples > > > Hmm I was thinking you were female but now I am not sure. No, female. Which is why the hair loss is disturbing. Its also probably more able the temples at the top corners of my face/hairline. I think this is why hypothyroidism was considered, as well. > > > - Digestive upsets, gassy & bloated, sometimes constipation > > > > AKA hypokalemia gastric/intestinal paresis or stasis or spasm. Okay! That explains a lot, this has been one thing that really didn't seem to tie into my symptoms until I read this explanation. > > > - More tired and likely to be in pain after I " exert " myself, which > > can be anything from vacuuming to having lunch with friends. > > > You are not eating enough K and too much salt and making too much > aldo. So these are most likely related to low K unless you are taking > a statin. > So this is an area I have some confusion over. I eat a diet that should be pretty rich in potassium. When I first had potassium, my primary doctor sent me a list of foods I should add to my diet, and my first reaction was that I was already eating most of those foods on a regular basis. So should I be assuming my diet is deficient still, or that I need more potassium. I'm also taking lisinopril for blood pressure, which as I understand it, can cause high potassium. > > - Restless Leg Syndrome with Periodic Limb Movement while sleeping. > > (diagnosed through a sleep study). > > > Will get better when you DASH Can you expand on this? Is it excess salt that is the problem? I'm just trying to understand what, if any connection the RLS may have as this has been a plague for me for a long time. > > The pain is probably the most confusing because its the most > > pressing of the symptoms to me. I asked if low potassium could be > > causing it and I've been told that it can cause cramping but not > > really what I am feeling, which isn't. > > > > I've also not necessarily had consistant low potassium. Just over a > > month ago it was at 3.7 and then a few weeks later it > down to 3.3. > > > > How hard are you to get blood from? Ask them to draw without a > tourniquet and see our files on how to draw and process blood to avoid > pseudo normokalemia when you are hypokalemic. My right arm is not problematic at all, so I always have them draw from there. I will check the file you recommend. > > > > I would love to hear everyones experiences and thoughts about this, > > and see if anyone had any of these symptoms as well. > > > > Please read my evolution paper so we are the same page. > > > > > Thank you for directing me to this. I haven't read it yet, but will now. I also did not realize the wealth of information in the files, so I will take a look. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 BTW, I apologize, I did not see the welcome message until you directed me to the files area,. I'm playing catch-up now. > > > Greetings everyone! I'm new to the group and thought I'd say 'hi' > > along with some questions. > > > > I'm currently undergoing testing for what I like to call a mystery > > illness, but the current investigation is towards primary > > aldosteronism. I have resistant high blood pressure, low potassium > > and fatigue. Several other things have been investigated before this > > and ruled out because those aren't my only symptoms - so I was > > hoping to get some thoughts on others with the condition to see if > > anyone has experienced anything similar. > > > > Note; I haven't actually been tested for aldosteronism yet, - I have > > to be off some medication for a couple more weeks and my potassium > > has to be normal, so I'm on postassium prescribed by my > > endocrinologist for the past week - retested friday and I should > > have those results early this week. > > > > Now, here are the symptoms I have that don't seem to be related from > > what I've read of hyperaldosteronism: > > > > - Recently, my doctor has found blood in my urine. > > > again we need all of your story as do the Drs who are taking care of > you. > > Are you male or female, what is your ethnicity, age, smoker, past Hx > of UTIs. Can you see the blood. When they collect the urine I assume > it was a clean catch midstream urine. > > > The first time it appeared to be due to a uti - but a recheck showed > > Agin blood in my urine, so I'm also going to see a urologist. > > - Pain - I tend to have bouts of aches and pain that run through my > > whole body. it can happen at any time but is worse at night. No > > doctor has had a good explanation for it. > > > > It is called hypokalemia. > > > - Brain fog/fuzzy thinking/lack of attention - this is unusual for > > me, but has been getting progressively worse over the past year, > > along with the other symptoms > > > As you will see from reading other's stories brain fog is a common > complaint but please tell us what you mean by this term--put in your > story. > > - High Cholesterol > > > > You chose the wrong grandparents and are feeding the roots of your > family tree too many calories and too much fat. > > > - Dry, strawlike hair and some hair loss around the temples > > > Hmm I was thinking you were female but now I am not sure. > > > - Digestive upsets, gassy & bloated, sometimes constipation > > > > AKA hypokalemia gastric/intestinal paresis or stasis or spasm. > > > - More tired and likely to be in pain after I " exert " myself, which > > can be anything from vacuuming to having lunch with friends. > > > You are not eating enough K and too much salt and making too much > aldo. So these are most likely related to low K unless you are taking > a statin. > > > - Restless Leg Syndrome with Periodic Limb Movement while sleeping. > > (diagnosed through a sleep study). > > > Will get better when you DASH > > The pain is probably the most confusing because its the most > > pressing of the symptoms to me. I asked if low potassium could be > > causing it and I've been told that it can cause cramping but not > > really what I am feeling, which isn't. > > > > I've also not necessarily had consistant low potassium. Just over a > > month ago it was at 3.7 and then a few weeks later it > down to 3.3. > > > > How hard are you to get blood from? Ask them to draw without a > tourniquet and see our files on how to draw and process blood to avoid > pseudo normokalemia when you are hypokalemic. > > > > I would love to hear everyones experiences and thoughts about this, > > and see if anyone had any of these symptoms as well. > > > > Please read my evolution paper so we are the same page. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 You are only the 3rd one he has recognized. Prob seen 10 x this many. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 20, 2012, at 19:00, Tammy Knox <knoxtammy@...> wrote: after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go away, everyday is so different , were you able to get rid of the meds that you were on previous to the gland being removed i guess i would like to know what changed for you after surgery, i would just like to hear that at some time in my journey i will be getting my life before this will come back to me. any input would be great, i don't know anyone where i am from that has had this problem and the specilist that i have has said that i am only his 3rd patient in 10 years with this problem so i am rare to him. From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Monday, February 20, 2012 2:26 PM Subject: Re: hello and questions Hi Tami, I had an adrenal tumor removed in October (along with my left adrenal) due to hyperaldo and I've got a few comments on some of your symptoms:- Recently, my doctor has found blood in my urine. The first time it appeared to be due to a uti - but a recheck showed only blood in my urine, so I'm also going to see a urologist.Blood showed in every urine test the whole time I had hyperaldo, although I have never had a UTI in my life. I've only had one urine test since the surgery and, no blood. Can't comment on what the connection is since I never found out. I think others here have mentioned the same thing. - Pain - I tend to have bouts of aches and pain that run through my whole body. it can happen at any time but is worse at night. No doctor has had a good explanation for it.Low potassium is a likely explanation for it. - Brain fog/fuzzy thinking/lack of attention - this is unusual for me, but has been getting progressively worse over the past year, along with the other symptomsDefinitely connected to hyperaldo. Lots of past posts here about brain fog. In my case, I had no idea how bad it was until after the surgery, when it immediately cleared up! - High CholesterolIs yours high all around?? My "good" cholesterol is off-the-charts high, making my total high. My docs thought the surgery would change this, but so far it hasn't. - Dry, strawlike hair and some hair loss around the templesI had a lot of hair loss before the surgery - in fact, one of the first things I noticed when I was first sick was hair loss. It seemed to have stopped after the surgery, but then a lot of it fell out all at once - I'm told this is normal after certain surgeries. So I can't really say if having the hyperaldo corrected has fixed the problem! - Digestive upsets, gassy & bloated, sometimes constipationI've got a miles-long list of food intolerances that cause this, but I do know that while I had hyperaldo, a drop in potassium or a high-salt meal would make this way worse. The potassium drop basically seemed to shut my digestive system down. Hope that helps. Feel free to ask if you have any questions!-msmith1928Successful left laparoscopic adrenalectomy 10/13/11Gluten, fructose, and lactose intolerance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 the cancer specialist they sent me to prior to being admitted to cardiac unit said that it was just a freckle and that it was not the reason for being so sick, 2 weeks after that i was admitted and 3months later they are saying that it is the reason for all of my systoms why is this so missed From: Clarence Grim <lowerbp2@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Tuesday, February 21, 2012 12:02 AM Subject: Re: Re: hello and questions You are only the 3rd one he has recognized. Prob seen 10 x this many. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 20, 2012, at 19:00, Tammy Knox <knoxtammy@...> wrote: after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go away, everyday is so different , were you able to get rid of the meds that you were on previous to the gland being removed i guess i would like to know what changed for you after surgery, i would just like to hear that at some time in my journey i will be getting my life before this will come back to me. any input would be great, i don't know anyone where i am from that has had this problem and the specilist that i have has said that i am only his 3rd patient in 10 years with this problem so i am rare to him. From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Monday, February 20, 2012 2:26 PM Subject: Re: hello and questions Hi Tami, I had an adrenal tumor removed in October (along with my left adrenal) due to hyperaldo and I've got a few comments on some of your symptoms:- Recently, my doctor has found blood in my urine. The first time it appeared to be due to a uti - but a recheck showed only blood in my urine, so I'm also going to see a urologist.Blood showed in every urine test the whole time I had hyperaldo, although I have never had a UTI in my life. I've only had one urine test since the surgery and, no blood. Can't comment on what the connection is since I never found out. I think others here have mentioned the same thing. - Pain - I tend to have bouts of aches and pain that run through my whole body. it can happen at any time but is worse at night. No doctor has had a good explanation for it.Low potassium is a likely explanation for it. - Brain fog/fuzzy thinking/lack of attention - this is unusual for me, but has been getting progressively worse over the past year, along with the other symptomsDefinitely connected to hyperaldo. Lots of past posts here about brain fog. In my case, I had no idea how bad it was until after the surgery, when it immediately cleared up! - High CholesterolIs yours high all around?? My "good" cholesterol is off-the-charts high, making my total high. My docs thought the surgery would change this, but so far it hasn't. - Dry, strawlike hair and some hair loss around the templesI had a lot of hair loss before the surgery - in fact, one of the first things I noticed when I was first sick was hair loss. It seemed to have stopped after the surgery, but then a lot of it fell out all at once - I'm told this is normal after certain surgeries. So I can't really say if having the hyperaldo corrected has fixed the problem! - Digestive upsets, gassy & bloated, sometimes constipationI've got a miles-long list of food intolerances that cause this, but I do know that while I had hyperaldo, a drop in potassium or a high-salt meal would make this way worse. The potassium drop basically seemed to shut my digestive system down. Hope that helps. Feel free to ask if you have any questions!-msmith1928Successful left laparoscopic adrenalectomy 10/13/11Gluten, fructose, and lactose intolerance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 oh yes and did you have anxiety attacks as well, i have them all the time alot at night if you did please tell me that goes away as well, From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Tuesday, February 21, 2012 12:06 AM Subject: Re: hello and questions > after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go awayI felt better immediately, aside from the pain from the incisions - much better energy, much better concentration. I didn't have leg pain, my muscle pain was all in my trapezius muscles but that stopped immediately. The muscle pain was caused by the low potassium, and once that was corrected, no more pain. > were you able to get rid of the meds that you were on previous to the gland being removedThe only med I was on was potassium supplements, which I stopped after I was released from the hospital. My potassium has held steady around 4.3 ever since.Hyperaldosteronism is pretty rare - or perhaps just rarely diagnosed. I'm the only case my primary care doctor has encountered (but he is fairly young, mid-40s I think). My hypertension specialist/nephrologist, who has been in practice since the early 1970s, has encountered 15 suspected cases in his career, 6 confirmed cases, and of those 6, I am only one of two of that opted for surgery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 i;m starting to think that health care in the us is better than in canada From: Clarence Grim <lowerbp2@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Tuesday, February 21, 2012 12:02 AM Subject: Re: Re: hello and questions You are only the 3rd one he has recognized. Prob seen 10 x this many. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 20, 2012, at 19:00, Tammy Knox <knoxtammy@...> wrote: after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go away, everyday is so different , were you able to get rid of the meds that you were on previous to the gland being removed i guess i would like to know what changed for you after surgery, i would just like to hear that at some time in my journey i will be getting my life before this will come back to me. any input would be great, i don't know anyone where i am from that has had this problem and the specilist that i have has said that i am only his 3rd patient in 10 years with this problem so i am rare to him. From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Monday, February 20, 2012 2:26 PM Subject: Re: hello and questions Hi Tami, I had an adrenal tumor removed in October (along with my left adrenal) due to hyperaldo and I've got a few comments on some of your symptoms:- Recently, my doctor has found blood in my urine. The first time it appeared to be due to a uti - but a recheck showed only blood in my urine, so I'm also going to see a urologist.Blood showed in every urine test the whole time I had hyperaldo, although I have never had a UTI in my life. I've only had one urine test since the surgery and, no blood. Can't comment on what the connection is since I never found out. I think others here have mentioned the same thing. - Pain - I tend to have bouts of aches and pain that run through my whole body. it can happen at any time but is worse at night. No doctor has had a good explanation for it.Low potassium is a likely explanation for it. - Brain fog/fuzzy thinking/lack of attention - this is unusual for me, but has been getting progressively worse over the past year, along with the other symptomsDefinitely connected to hyperaldo. Lots of past posts here about brain fog. In my case, I had no idea how bad it was until after the surgery, when it immediately cleared up! - High CholesterolIs yours high all around?? My "good" cholesterol is off-the-charts high, making my total high. My docs thought the surgery would change this, but so far it hasn't. - Dry, strawlike hair and some hair loss around the templesI had a lot of hair loss before the surgery - in fact, one of the first things I noticed when I was first sick was hair loss. It seemed to have stopped after the surgery, but then a lot of it fell out all at once - I'm told this is normal after certain surgeries. So I can't really say if having the hyperaldo corrected has fixed the problem! - Digestive upsets, gassy & bloated, sometimes constipationI've got a miles-long list of food intolerances that cause this, but I do know that while I had hyperaldo, a drop in potassium or a high-salt meal would make this way worse. The potassium drop basically seemed to shut my digestive system down. Hope that helps. Feel free to ask if you have any questions!-msmith1928Successful left laparoscopic adrenalectomy 10/13/11Gluten, fructose, and lactose intolerance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2012 Report Share Posted February 21, 2012 hi lynne i would have to say that yup it's part of it , i spend more time walking the floor at night and with a knot or nervous stomach 80 percent of the time i have busted 3 teeth in the last year, always jumpy, so its the worst feeling in the world .so you might want to ask the doctor my guess it they will say yes it is part of it From: Lynne Herndon <lynneagain@...> hyperaldosteronism Sent: Tuesday, February 21, 2012 3:28 AM Subject: Re: Re: hello and questions Hi everyone, I'm a newbie here. In the process of being tested for hyperaldosterism. I can relate to the anxiety... or at least I think that may be what it is. For the past year I wake up really tense. I thought it was just my work causing my shoulders to have pain, which made me feel tense (or so I thought). But now I am thinking that it was/is anxiety. When I went to the dentist a couple of months ago he said that he thought I may be clenching/grinding my teeth at night (something I never use to do). I'm thinking this is all related to the HA now. Anyone else have issues with waking up feeling tense/teeth grinding? Re: hello and questions > after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go away I felt better immediately, aside from the pain from the incisions - much better energy, much better concentration. I didn't have leg pain, my muscle pain was all in my trapezius muscles but that stopped immediately. The muscle pain was caused by the low potassium, and once that was corrected, no more pain. > were you able to get rid of the meds that you were on previous to the gland being removed The only med I was on was potassium supplements, which I stopped after I was released from the hospital. My potassium has held steady around 4.3 ever since. Hyperaldosteronism is pretty rare - or perhaps just rarely diagnosed. I'm the only case my primary care doctor has encountered (but he is fairly young, mid-40s I think). My hypertension specialist/nephrologist, who has been in practice since the early 1970s, has encountered 15 suspected cases in his career, 6 confirmed cases, and of those 6, I am only one of two of that opted for surgery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2012 Report Share Posted February 21, 2012 thank u i have found the files From: <jclark24p@...> hyperaldosteronism Sent: Tuesday, February 21, 2012 10:59 AM Subject: Re: hello and questions It's in our files: http://f1.grp.fs.com/v1/YKNDTwnx-dy8AAMEBvXvS-DGaVz-QHBP2B23ebuRUjT1RvDpubxGI0IRx66eBKKJJz1brHtGzzSQHgqBeDMyLuRGgPi0huk/Evolution_of_PA-Grim.pdf > > > Â > >> after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go away > > > >I felt better immediately, aside from the pain from the incisions - much better energy, much better concentration. I didn't have leg pain, my muscle pain was all in my trapezius muscles but that stopped immediately. The muscle pain was caused by the low potassium, and once that was corrected, no more pain. > > > >> were you able to get rid of the meds that you were on previous to the gland being removed > > > >The only med I was on was potassium supplements, which I stopped after I was released from the hospital. My potassium has held steady around 4.3 ever since. > > > >Hyperaldosteronism is pretty rare - or perhaps just rarely diagnosed. I'm the only case my primary care doctor has encountered (but he is fairly young, mid-40s I think). My hypertension specialist/nephrologist, who has been in practice since the early 1970s, has encountered 15 suspected cases in his career, 6 confirmed cases, and of those 6, I am only one of two of that opted for surgery. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 wonderful to hear so by the sounds of it all i have to do is wait and see if they are gonna take the adrenal gland or make me wait , for some reason the specialist in halifax says that the right adrenal gland is tricky and they want to do the adrenal vein testing first before they decide what course to take ,really i just want this over with i want a normal life again with energy no bp problems , legs that don't hurt and normal weight again, how long did you have to wait until they decided to take yours out From: Juli Pack <julik_70@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Tuesday, February 21, 2012 7:22 PM Subject: Re: Re: hello and questions I had the anxiety attacks really bad especially at night too!They went away immediately after my adrenalectomy.Juli 40 y F, post adrenalectomy december 15, 2010Sent from my iPhoneOn Feb 20, 2012, at 10:53 PM, Tammy Knox <knoxtammy@...> wrote: oh yes and did you have anxiety attacks as well, i have them all the time alot at night if you did please tell me that goes away as well, From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Tuesday, February 21, 2012 12:06 AM Subject: Re: hello and questions > after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go awayI felt better immediately, aside from the pain from the incisions - much better energy, much better concentration. I didn't have leg pain, my muscle pain was all in my trapezius muscles but that stopped immediately. The muscle pain was caused by the low potassium, and once that was corrected, no more pain. > were you able to get rid of the meds that you were on previous to the gland being removedThe only med I was on was potassium supplements, which I stopped after I was released from the hospital. My potassium has held steady around 4.3 ever since.Hyperaldosteronism is pretty rare - or perhaps just rarely diagnosed. I'm the only case my primary care doctor has encountered (but he is fairly young, mid-40s I think). My hypertension specialist/nephrologist, who has been in practice since the early 1970s, has encountered 15 suspected cases in his career, 6 confirmed cases, and of those 6, I am only one of two of that opted for surgery. = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 There's a study at NIH that will evaluate and treat PA...open to anyone in the whole wide world...gratis. You pay your transportation. Need letter of referral, need a doc to go home to. Go to NIH website and search the studies if you are interested. > > >  > >after you had the adrenal gland removed how did you feel did your energy get better and does the pain in the legs go away, everyday is so different , were you able to get rid of the meds that you were on previous to the gland being removed i guess i would like to know what changed for you after surgery, i would just like to hear that at some time in my journey i will be getting my life before this will come back to me. any input would be great, i don't know anyone where i am from that has had this problem and the specilist that i have has said that i am only his 3rd patient in 10 years with this problem so i am rare to him. > > > > > > > >________________________________ > > From: msmith_1928 <janeray1940@...> > >hyperaldosteronism > >Sent: Monday, February 20, 2012 2:26 PM > >Subject: Re: hello and questions > > > > > > > >Hi Tami, I had an adrenal tumor removed in October (along with my left adrenal) due to hyperaldo and I've got a few comments on some of your symptoms: > > > >- Recently, my doctor has found blood in my urine. The first time it appeared to > >be due to a uti - but a recheck showed only blood in my urine, so I'm also going > >to see a urologist. > > > >Blood showed in every urine test the whole time I had hyperaldo, although I have never had a UTI in my life. I've only had one urine test since the surgery and, no blood. Can't comment on what the connection is since I never found out. I think others here have mentioned the same thing. > > > >- Pain - I tend to have bouts of aches and pain that run through my whole body. > >it can happen at any time but is worse at night. No doctor has had a good > >explanation for it. > > > >Low potassium is a likely explanation for it. > > > >- Brain fog/fuzzy thinking/lack of attention - this is unusual for me, but has > >been getting progressively worse over the past year, along with the other > >symptoms > > > >Definitely connected to hyperaldo. Lots of past posts here about brain fog. In my case, I had no idea how bad it was until after the surgery, when it immediately cleared up! > > > >- High Cholesterol > > > >Is yours high all around?? My " good " cholesterol is off-the-charts high, making my total high. My docs thought the surgery would change this, but so far it hasn't. > > > >- Dry, strawlike hair and some hair loss around the temples > > > >I had a lot of hair loss before the surgery - in fact, one of the first things I noticed when I was first sick was hair loss. It seemed to have stopped after the surgery, but then a lot of it fell out all at once - I'm told this is normal after certain surgeries. So I can't really say if having the hyperaldo corrected has fixed the problem! > > > >- Digestive upsets, gassy & bloated, sometimes constipation > > > >I've got a miles-long list of food intolerances that cause this, but I do know that while I had hyperaldo, a drop in potassium or a high-salt meal would make this way worse. The potassium drop basically seemed to shut my digestive system down. > > > >Hope that helps. Feel free to ask if you have any questions! > > > >-msmith1928 > >Successful left laparoscopic adrenalectomy 10/13/11 > >Gluten, fructose, and lactose intolerance > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 Tammy, as much trouble as most of us have had getting diagnosed and treated, the US far outranks the world in medical discovery and innovation. Survival rates are higher too than either UK or Canada, considerably higher than UK.Val>> i;m starting to think that health care in the us is better than in canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 the doctor called on friday but i missed the call i swear if i have to have this saline test done again i will scream my arms look like a junkie's arms from all the tests and blood work that has to be done on a weekly basis, i refused to have the blood work done over the last 3 weeks my arms have to heal the veins are not giving blood and i have to be picked 2 sometimes 3 times before the blood will come out and that's if the vein doesn't roll i have had to have the blood work done once a week since november 20 to keep the potissum in check and even with the pills the levels go from 3 to 3,4 but no higher and it has been under 3 4 times i just have to keep uping the dosage of k-dor i hope there is a end in sight. From: Bingham <jlkbbk2003@...> hyperaldosteronism Sent: Sunday, March 4, 2012 9:11 PM Subject: Re: Re: hello and questions UGH.......I don't think I ever had one test done right for PA. Ever! The instructions are right there but ignored (I have never had the salt test though and am not too anxious to anyway. Even getting potassium done right is a chore, though last week I used my charm (shut up ) and sprinkled alot more honey instead of vinegar and the girl did it perfect...well from the draw end anyway. From: StaceyF <ssminnow@...>Subject: Re: hello and questionshyperaldosteronism Date: Sunday, March 4, 2012, 7:03 PM My saline test was done wrong too. It came back negative and now I Have to wait 2 months to see the doctor cause she is so busy to go over my results. Nuts.> >>> >> i;m starting to think that health care in the us is better than in canada> >> >>H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2012 Report Share Posted March 4, 2012 I would focus on DASHing to improve K and BP and If u were my pt i would Dona trial of. MCB Blocker and DASH May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 4, 2012, at 21:17, Tammy Knox <knoxtammy@...> wrote: the doctor called on friday but i missed the call i swear if i have to have this saline test done again i will scream my arms look like a junkie's arms from all the tests and blood work that has to be done on a weekly basis, i refused to have the blood work done over the last 3 weeks my arms have to heal the veins are not giving blood and i have to be picked 2 sometimes 3 times before the blood will come out and that's if the vein doesn't roll i have had to have the blood work done once a week since november 20 to keep the potissum in check and even with the pills the levels go from 3 to 3,4 but no higher and it has been under 3 4 times i just have to keep uping the dosage of k-dor i hope there is a end in sight. From: Bingham <jlkbbk2003@...> hyperaldosteronism Sent: Sunday, March 4, 2012 9:11 PM Subject: Re: Re: hello and questions UGH.......I don't think I ever had one test done right for PA. Ever! The instructions are right there but ignored (I have never had the salt test though and am not too anxious to anyway. Even getting potassium done right is a chore, though last week I used my charm (shut up ) and sprinkled alot more honey instead of vinegar and the girl did it perfect...well from the draw end anyway. From: StaceyF <ssminnow@...>Subject: Re: hello and questionshyperaldosteronism Date: Sunday, March 4, 2012, 7:03 PM My saline test was done wrong too. It came back negative and now I Have to wait 2 months to see the doctor cause she is so busy to go over my results. Nuts.> >>> >> i;m starting to think that health care in the us is better than in canada> >> >>H Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.