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 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 i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you 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 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 had more of a constant low-grade state of anxiety rather than " attacks " during the 9 years I went undiagnosed. At the beginning of my 10th year of being sick, once I learned that it was a tumor causing the anxiety and not a psychological disorder, my anxiety levels went WAY down - when I would feel anxiety coming on, I was able to tell myself that it wasn't *me* but the tumor, and I'd be fine after a few minutes. And it hasn't happened since the surgery, so I think it's safe to say that my anxiety has gone away Now that I think about it - anxiety, hair loss, and weight gain were probably the first symptoms of my illness that I noticed, years before I learned that I had hypertension and low potassium. A lot of folks on this board have had anxiety or other psych diagnoses at some point. > > 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 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 20, 2012 Report Share Posted February 20, 2012 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 It's in our files: http://f1.grp.fs.com/v1/YKNDTwnx-dy8AAMEBvXvS-DGaVz-QHBP2B23ebuRUjT1RvDpubx\ GI0IRx66eBKKJJz1brHtGzzSQHgqBeDMyLuRGgPi0huk/Evolution_of_PA-Grim.pdf > > >  > >> 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 27, 2012 Report Share Posted February 27, 2012 Definitely - I think the 12 pounds I dropped immediately after surgery was all salt/fluid retention. > > i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you 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 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 27, 2012 Report Share Posted February 27, 2012 If u start the 14 day dash trial in am you will be feeling better in 2-4 days in most. Keep us posted. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 22, 2012, at 14:17, Tammy Knox <knoxtammy@...> wrote: 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 Well unless you are under 65 and have no insurance. A $15,000 AVS would set u back. You can look at the Canadian BP GUIDELINES to see when your Dr should test for PA. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 27, 2012, at 16:26, maggiekat7 <ljurkovic@...> wrote: 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 February 27, 2012 Report Share Posted February 27, 2012 His means you are eating too much Na and not enough K. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 20, 2012, at 20:52, Tammy Knox <knoxtammy@...> wrote: i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you 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 NIH studies? Under 65 and no insurance? Nope. Each study is different regarding age requirements, and you can have insurance; they don't bill or notify insurance. You have to participate and agree to protocol, but I was/am willing. > > > > > > > > >  > > > >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 February 27, 2012 Report Share Posted February 27, 2012 Wasn't talking about NIH. SORRY May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 27, 2012, at 17:18, maggiekat7 <ljurkovic@...> wrote: NIH studies? Under 65 and no insurance? Nope. Each study is different regarding age requirements, and you can have insurance; they don't bill or notify insurance. You have to participate and agree to protocol, but I was/am willing. > > > > > > > > >  > > > >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 February 27, 2012 Report Share Posted February 27, 2012 Good reminder Maggie. I hope they have all my info now and need to call Dr. L. to see what is next (probably Wed pm or Thurs. - have Agent Orange Registery exam tomorrow and see the " Shrink " Wed. am!) Seems like everything is coming down at once! > > > > > >  > > >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 February 27, 2012 Report Share Posted February 27, 2012 Whoa...I know what you mean! Have to testify in a murder trial and got diagnosed with Staph infection 10 days ago...bleaching everything, including myself, hibicleanse, antibiotics and topicals 4 times a day...cultures, every damn day at a drs. office. IV's. Back to work tomorrow, which means testimony end of week or early next. Then to NIH. Staph's last thing I needed...but with all the dr. visits, labs, outpatient hospital visits, and maybe being worn out by all the frustration with PA. It has been one heck of a lot easier than PA! Dr's are super responsive. Super concerned, but even with this, one of them did not call with culture results...other ID dr. had to get them for me. He did and I have narrowly escaped inpatient, but lord willin', I think I'm cured. Tomorrow's culture results will confirm, but fever is thankfully gone. > > > > > > > > >  > > > >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 February 27, 2012 Report Share Posted February 27, 2012 I thought the trial was after your trip to Bethesda, Maggie. Now I understand, the trip to NIH is really a 10 day R & R! ;>) > > > > > > > > > > > >  > > > > >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 February 27, 2012 Report Share Posted February 27, 2012 yeah, and that's almost as pathetic as having an ID doc on my speed dial...you can watch the whole trial at dunwoody.patch.com...live video feed and blog. > > > > > > > > > > > > > > >  > > > > > >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 February 27, 2012 Report Share Posted February 27, 2012 The salt that comes out of the shaker is like the tip of an iceberg, it's not what is ON the food, it's what IN the food! Read the labels and pay particular attention to portion size and when you get up to 1500 mg of NA STOP EATING FOR THE DAY! ;>) A while ago someone reported they were being good and went to Subway. They didn't realise the roll alone gave them 1800mg of NA! > > >  > >i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you 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 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 27, 2012 Report Share Posted February 27, 2012 The salt that comes out of the shaker is like the tip of an iceberg, it's not what is ON the food, it's what IN the food! Read the labels and pay particular attention to portion size and when you get up to 1500 mg of NA STOP EATING FOR THE DAY! ;>) A while ago someone reported they were being good and went to Subway. They didn't realise the roll alone gave them 1800mg of NA! > > >  > >i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you 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 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 28, 2012 Report Share Posted February 28, 2012 Thanks, . Excellent advise. I try to follow it now, when I don't feel well, STOP EATING FOR THE DAY. It's hard to do, but it works. BTW, my body advised me to do the same. I lose appetite as soon as I don't feel well. Natalia From: <jclark24p@...> hyperaldosteronism Sent: Monday, February 27, 2012 11:13 PM Subject: Re: hello and questions The salt that comes out of the shaker is like the tip of an iceberg, it's not what is ON the food, it's what IN the food! Read the labels and pay particular attention to portion size and when you get up to 1500 mg of NA STOP EATING FOR THE DAY! ;>) A while ago someone reported they were being good and went to Subway. They didn't realise the roll alone gave them 1800mg of NA! > > > Â > >i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you as well, > > > > > > > >________________________________ > > From: msmith_1928 <janeray1940@...> > >hyperaldosteronism > >Sent: Tuesday, February 21, 2012 12:06 AM > >Subject: Re: hello and questions > > > > > >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 28, 2012 Report Share Posted February 28, 2012 Thanks, . Excellent advise. I try to follow it now, when I don't feel well, STOP EATING FOR THE DAY. It's hard to do, but it works. BTW, my body advised me to do the same. I lose appetite as soon as I don't feel well. Natalia From: <jclark24p@...> hyperaldosteronism Sent: Monday, February 27, 2012 11:13 PM Subject: Re: hello and questions The salt that comes out of the shaker is like the tip of an iceberg, it's not what is ON the food, it's what IN the food! Read the labels and pay particular attention to portion size and when you get up to 1500 mg of NA STOP EATING FOR THE DAY! ;>) A while ago someone reported they were being good and went to Subway. They didn't realise the roll alone gave them 1800mg of NA! > > > Â > >i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you as well, > > > > > > > >________________________________ > > From: msmith_1928 <janeray1940@...> > >hyperaldosteronism > >Sent: Tuesday, February 21, 2012 12:06 AM > >Subject: Re: hello and questions > > > > > >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 28, 2012 Report Share Posted February 28, 2012 And some things not labeled well can be full of salt (sodium) like cheese and butter! From: <jclark24p@...>Subject: Re: hello and questionshyperaldosteronism Date: Tuesday, February 28, 2012, 7:58 PM The salt that comes out of the shaker is like the tip of an iceberg, it's not what is ON the food, it's what IN the food! Read the labels and pay particular attention to portion size and when you get up to 1500 mg of NA STOP EATING FOR THE DAY! ;>)A while ago someone reported they were being good and went to Subway. They didn't realise the roll alone gave them 1800mg of NA!> > > Â > >i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you as well,> >> > > >> >________________________________> > From: msmith_1928 <janeray1940@...>> >hyperaldosteronism > >Sent: Tuesday, February 21, 2012 12:06 AM> >Subject: Re: hello and questions> > > >> >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 28, 2012 Report Share Posted February 28, 2012 And some things not labeled well can be full of salt (sodium) like cheese and butter! From: <jclark24p@...>Subject: Re: hello and questionshyperaldosteronism Date: Tuesday, February 28, 2012, 7:58 PM The salt that comes out of the shaker is like the tip of an iceberg, it's not what is ON the food, it's what IN the food! Read the labels and pay particular attention to portion size and when you get up to 1500 mg of NA STOP EATING FOR THE DAY! ;>)A while ago someone reported they were being good and went to Subway. They didn't realise the roll alone gave them 1800mg of NA!> > > Â > >i find that i am swollen and holding alot of fluid did you find the same and after surgery did that get better for you as well,> >> > > >> >________________________________> > From: msmith_1928 <janeray1940@...>> >hyperaldosteronism > >Sent: Tuesday, February 21, 2012 12:06 AM> >Subject: Re: hello and questions> > > >> >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...
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