Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 That was my understanding. However, before the adrenalectomy, my K wasn't low since I was taking supplements (it stayed around 4.0) but I still had the IR symptoms - reactive hypoglycemia and difficulty keeping my weight in target range, no matter how little I ate. Those symptoms are completely gone now. Haven't had K checked in a while but post-surgery it was around 4.4-4.5. Could that little .4 or .5 difference mean the difference between normal, and insulin resistant? Makes me wonder how " normal " those lab normal ranges really are! > > > My whole, long story can be found in at left in Files > Conns Stories > msmith1928 PA story final 11-4-11.pdf - not sure if that link will work for you or not. > > > > A few answers: > > > > How does work go with all of you? Are you able to work with all of this? How much time off of work is necessary? > > > > I worked throughout the entire diagnostic process, from misdiagnosis in 2001 through adrenalectomy in 2011. Fortunately I've got a really flexible schedule and am often able to work from home. I was also fortunate in that I *could* work - there are some here who have it so much worse than I ever did. Truth be told, I didn't realize that I felt sick until I wasn't sick anymore. > > > > How much time off for just AVS? I can assume 4-6 weeks off work with surgery, but is that true for the laparoscopy as > > well? > > > > I had AVS twice. Each time it was done on a Friday, which I took off from work; I was back to work for a half-day the next Monday and full-time thereafter. I was completely unconscious for each AVS procedure and really, the hardest part of the recovery was getting past the nausea and grogginess from the anesthesia. > > > > I took two weeks off work for my surgery. I felt great immediately upon waking up in the recovery room, and was really anxious to get back to " normal life " - looking back, I probably should have taken things a little slower. I ended up having a setback about 4 weeks post-op where I did something to the incision site - either ripped the stitches, damaged the scar tissue, pulled a muscle, or all of the above, either in yoga class or while doing some lifting/carrying. > > > > Are you back functioning normally yet? > > > > As of the first of the year, yes! After the aforementioned setback, I *really* slowed down for a month. That pain took longer to go away than the initial post-op pain, but now I'm pain free and doing everything as normal again. > > > > Do you lose or gain weight or does it impact that? Seems like it would, given it's connected to cortisol levels, but > > ???? > > > > Weight has been a... challenging aspect of this disease for me. After an entire lifetime of being underweight/really thin/never over 100 pounds, the year I started having symptoms my almost doubled within a year (89 pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed with gluten and fructose intolerance, and by default began eating low-carb since that was all I could eat! I lost 50 pounds in 3 months and kept it off, but it was a real struggle to keep my weight in the 120-125 zone. Considering how little I eat and how restricted my diet was, this never made sense to me. I was told that I was insulin resistant and that I would have to struggle with my weight for the rest of my life. > > > > Interestingly, since the surgery, I've actually been eating more than when I still had the tumor (I was on an extremely low sodium diet and it was really boring and I ate just enough to stay alive!) but even though I'm eating more, I keep losing weight. Right now I'm down to 111, without even trying. At least for me, there was a definite connection between PA and weight, but I don't fully understand what impacted what. > > > > And what's the rest of your story? How did you go from UCLA dude negating the diagnosis to surgery? Did you just go with the nephrologist? > > > > The nephrologist was the PA expert, so I trusted his opinion. I got the sense that the endocrinologist was just not up to speed on PA and had a little bit too much ego to allow himself to learn. After the (second) AVS there was no doubt that I had PA. > > > > Did you have pain on the side where the adenoma was? > > > > Not that I know of. But looking back to 2001, when I first had symptoms, I used to get a lot of " stomach pain " on my left side only. This ended up being attributed to digestive issues from my then-undiagnosed food intolerances, but I kind of wonder why it was always only on the left. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Plasma K is a poor marker of total body KMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 15, 2012, at 15:09, msmith_1928 <janeray1940@...> wrote: That was my understanding. However, before the adrenalectomy, my K wasn't low since I was taking supplements (it stayed around 4.0) but I still had the IR symptoms - reactive hypoglycemia and difficulty keeping my weight in target range, no matter how little I ate. Those symptoms are completely gone now. Haven't had K checked in a while but post-surgery it was around 4.4-4.5. Could that little .4 or .5 difference mean the difference between normal, and insulin resistant? Makes me wonder how "normal" those lab normal ranges really are! > > > My whole, long story can be found in at left in Files > Conns Stories > msmith1928 PA story final 11-4-11.pdf - not sure if that link will work for you or not. > > > > A few answers: > > > > How does work go with all of you? Are you able to work with all of this? How much time off of work is necessary? > > > > I worked throughout the entire diagnostic process, from misdiagnosis in 2001 through adrenalectomy in 2011. Fortunately I've got a really flexible schedule and am often able to work from home. I was also fortunate in that I *could* work - there are some here who have it so much worse than I ever did. Truth be told, I didn't realize that I felt sick until I wasn't sick anymore. > > > > How much time off for just AVS? I can assume 4-6 weeks off work with surgery, but is that true for the laparoscopy as > > well? > > > > I had AVS twice. Each time it was done on a Friday, which I took off from work; I was back to work for a half-day the next Monday and full-time thereafter. I was completely unconscious for each AVS procedure and really, the hardest part of the recovery was getting past the nausea and grogginess from the anesthesia. > > > > I took two weeks off work for my surgery. I felt great immediately upon waking up in the recovery room, and was really anxious to get back to "normal life" - looking back, I probably should have taken things a little slower. I ended up having a setback about 4 weeks post-op where I did something to the incision site - either ripped the stitches, damaged the scar tissue, pulled a muscle, or all of the above, either in yoga class or while doing some lifting/carrying. > > > > Are you back functioning normally yet? > > > > As of the first of the year, yes! After the aforementioned setback, I *really* slowed down for a month. That pain took longer to go away than the initial post-op pain, but now I'm pain free and doing everything as normal again. > > > > Do you lose or gain weight or does it impact that? Seems like it would, given it's connected to cortisol levels, but > > ???? > > > > Weight has been a... challenging aspect of this disease for me. After an entire lifetime of being underweight/really thin/never over 100 pounds, the year I started having symptoms my almost doubled within a year (89 pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed with gluten and fructose intolerance, and by default began eating low-carb since that was all I could eat! I lost 50 pounds in 3 months and kept it off, but it was a real struggle to keep my weight in the 120-125 zone. Considering how little I eat and how restricted my diet was, this never made sense to me. I was told that I was insulin resistant and that I would have to struggle with my weight for the rest of my life. > > > > Interestingly, since the surgery, I've actually been eating more than when I still had the tumor (I was on an extremely low sodium diet and it was really boring and I ate just enough to stay alive!) but even though I'm eating more, I keep losing weight. Right now I'm down to 111, without even trying. At least for me, there was a definite connection between PA and weight, but I don't fully understand what impacted what. > > > > And what's the rest of your story? How did you go from UCLA dude negating the diagnosis to surgery? Did you just go with the nephrologist? > > > > The nephrologist was the PA expert, so I trusted his opinion. I got the sense that the endocrinologist was just not up to speed on PA and had a little bit too much ego to allow himself to learn. After the (second) AVS there was no doubt that I had PA. > > > > Did you have pain on the side where the adenoma was? > > > > Not that I know of. But looking back to 2001, when I first had symptoms, I used to get a lot of "stomach pain" on my left side only. This ended up being attributed to digestive issues from my then-undiagnosed food intolerances, but I kind of wonder why it was always only on the left. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Thanks for the explanation! I hadn't realized that. > > > > > > > My whole, long story can be found in at left in Files > Conns Stories > msmith1928 PA story final 11-4-11.pdf - not sure if that link will work for you or not. > > > > > > > > A few answers: > > > > > > > > How does work go with all of you? Are you able to work with all of this? How much time off of work is necessary? > > > > > > > > I worked throughout the entire diagnostic process, from misdiagnosis in 2001 through adrenalectomy in 2011. Fortunately I've got a really flexible schedule and am often able to work from home. I was also fortunate in that I *could* work - there are some here who have it so much worse than I ever did. Truth be told, I didn't realize that I felt sick until I wasn't sick anymore. > > > > > > > > How much time off for just AVS? I can assume 4-6 weeks off work with surgery, but is that true for the laparoscopy as > > > > well? > > > > > > > > I had AVS twice. Each time it was done on a Friday, which I took off from work; I was back to work for a half-day the next Monday and full-time thereafter. I was completely unconscious for each AVS procedure and really, the hardest part of the recovery was getting past the nausea and grogginess from the anesthesia. > > > > > > > > I took two weeks off work for my surgery. I felt great immediately upon waking up in the recovery room, and was really anxious to get back to " normal life " - looking back, I probably should have taken things a little slower. I ended up having a setback about 4 weeks post-op where I did something to the incision site - either ripped the stitches, damaged the scar tissue, pulled a muscle, or all of the above, either in yoga class or while doing some lifting/carrying. > > > > > > > > Are you back functioning normally yet? > > > > > > > > As of the first of the year, yes! After the aforementioned setback, I *really* slowed down for a month. That pain took longer to go away than the initial post-op pain, but now I'm pain free and doing everything as normal again. > > > > > > > > Do you lose or gain weight or does it impact that? Seems like it would, given it's connected to cortisol levels, but > > > > ???? > > > > > > > > Weight has been a... challenging aspect of this disease for me. After an entire lifetime of being underweight/really thin/never over 100 pounds, the year I started having symptoms my almost doubled within a year (89 pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed with gluten and fructose intolerance, and by default began eating low-carb since that was all I could eat! I lost 50 pounds in 3 months and kept it off, but it was a real struggle to keep my weight in the 120-125 zone. Considering how little I eat and how restricted my diet was, this never made sense to me. I was told that I was insulin resistant and that I would have to struggle with my weight for the rest of my life. > > > > > > > > Interestingly, since the surgery, I've actually been eating more than when I still had the tumor (I was on an extremely low sodium diet and it was really boring and I ate just enough to stay alive!) but even though I'm eating more, I keep losing weight. Right now I'm down to 111, without even trying. At least for me, there was a definite connection between PA and weight, but I don't fully understand what impacted what. > > > > > > > > And what's the rest of your story? How did you go from UCLA dude negating the diagnosis to surgery? Did you just go with the nephrologist? > > > > > > > > The nephrologist was the PA expert, so I trusted his opinion. I got the sense that the endocrinologist was just not up to speed on PA and had a little bit too much ego to allow himself to learn. After the (second) AVS there was no doubt that I had PA. > > > > > > > > Did you have pain on the side where the adenoma was? > > > > > > > > Not that I know of. But looking back to 2001, when I first had symptoms, I used to get a lot of " stomach pain " on my left side only. This ended up being attributed to digestive issues from my then-undiagnosed food intolerances, but I kind of wonder why it was always only on the left. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Thanks for the explanation! I hadn't realized that. > > > > > > > My whole, long story can be found in at left in Files > Conns Stories > msmith1928 PA story final 11-4-11.pdf - not sure if that link will work for you or not. > > > > > > > > A few answers: > > > > > > > > How does work go with all of you? Are you able to work with all of this? How much time off of work is necessary? > > > > > > > > I worked throughout the entire diagnostic process, from misdiagnosis in 2001 through adrenalectomy in 2011. Fortunately I've got a really flexible schedule and am often able to work from home. I was also fortunate in that I *could* work - there are some here who have it so much worse than I ever did. Truth be told, I didn't realize that I felt sick until I wasn't sick anymore. > > > > > > > > How much time off for just AVS? I can assume 4-6 weeks off work with surgery, but is that true for the laparoscopy as > > > > well? > > > > > > > > I had AVS twice. Each time it was done on a Friday, which I took off from work; I was back to work for a half-day the next Monday and full-time thereafter. I was completely unconscious for each AVS procedure and really, the hardest part of the recovery was getting past the nausea and grogginess from the anesthesia. > > > > > > > > I took two weeks off work for my surgery. I felt great immediately upon waking up in the recovery room, and was really anxious to get back to " normal life " - looking back, I probably should have taken things a little slower. I ended up having a setback about 4 weeks post-op where I did something to the incision site - either ripped the stitches, damaged the scar tissue, pulled a muscle, or all of the above, either in yoga class or while doing some lifting/carrying. > > > > > > > > Are you back functioning normally yet? > > > > > > > > As of the first of the year, yes! After the aforementioned setback, I *really* slowed down for a month. That pain took longer to go away than the initial post-op pain, but now I'm pain free and doing everything as normal again. > > > > > > > > Do you lose or gain weight or does it impact that? Seems like it would, given it's connected to cortisol levels, but > > > > ???? > > > > > > > > Weight has been a... challenging aspect of this disease for me. After an entire lifetime of being underweight/really thin/never over 100 pounds, the year I started having symptoms my almost doubled within a year (89 pounds to 173 pounds!) in 2001 0r s0. in early 2003 I was diagnosed with gluten and fructose intolerance, and by default began eating low-carb since that was all I could eat! I lost 50 pounds in 3 months and kept it off, but it was a real struggle to keep my weight in the 120-125 zone. Considering how little I eat and how restricted my diet was, this never made sense to me. I was told that I was insulin resistant and that I would have to struggle with my weight for the rest of my life. > > > > > > > > Interestingly, since the surgery, I've actually been eating more than when I still had the tumor (I was on an extremely low sodium diet and it was really boring and I ate just enough to stay alive!) but even though I'm eating more, I keep losing weight. Right now I'm down to 111, without even trying. At least for me, there was a definite connection between PA and weight, but I don't fully understand what impacted what. > > > > > > > > And what's the rest of your story? How did you go from UCLA dude negating the diagnosis to surgery? Did you just go with the nephrologist? > > > > > > > > The nephrologist was the PA expert, so I trusted his opinion. I got the sense that the endocrinologist was just not up to speed on PA and had a little bit too much ego to allow himself to learn. After the (second) AVS there was no doubt that I had PA. > > > > > > > > Did you have pain on the side where the adenoma was? > > > > > > > > Not that I know of. But looking back to 2001, when I first had symptoms, I used to get a lot of " stomach pain " on my left side only. This ended up being attributed to digestive issues from my then-undiagnosed food intolerances, but I kind of wonder why it was always only on the left. > > > > > > > > > > > > > > > > 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.