Guest guest Posted July 6, 2012 Report Share Posted July 6, 2012 ,Interesting the lesion is gone. I wonder how often it happens and we are not aware of it. My team have been following me for several years for a posterior pituitary adenoma (5 mm). I am on growth hormone injections, have swings in cortisol and occasionally suffer adrenal insufficiency. We have five years of MRI's every six months my MRI in september indicated some "changes." my MRI in may showed it is gone! Picture labs are still off though..Sent from my iPadOn Jul 6, 2012, at 5:44 PM, "Valarie " <val@...> wrote: I hope these images come through. If not, I'll put them in the files. The last two were same day, same time, same saliva. My serum cortisol at 8 a.m. was at the top of the range. One serum test or a 24-hour urine is not sufficient to differentiate what cortisol is doing throughout the day. The first two are same lab. The last two were same day, same time, same saliva but different labs (and ranges). I'm taking Seriphos at 3 p.m. and its calming the 3 - 8 p.m. jitters. I went to Univ of Colorado in 2005. The endo swore I had Cushings and said she'd dig until she got to the bottom of the problem. When the 8 a.m. cortisol and the 24-hour cortisol didn't pan out, she lost interest. Val <image002.png> <image004.png> <image006.png><image008.png> = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2012 Report Share Posted July 6, 2012 Hi Val, What is "3-8 p.m. jitters"? Has anybody done a spot check for cortisol during that timeframe? As you might have guessed, I have been busy researching between doctor appts. and raising my stress fighting with the city over a house I own! I have talked with 2 phsyco docs in addition to my PCP and surgeon. Next week is quiet with only the PCP on Monday but the following week it's 2 more phsyco docs, the doc in charge of endo for clearance for surgery and a normal podiatry appt. Oh yea, VA Disability claim is coming to a head so I had 2 appts. for that and a vascular US in a couple of weeks. When I spoke with the first physchatrist he thought I was "right on" with my assessment on how excess cortisol might be affecting depression and mood disorder. (I am finding this has been very active research item in the last 2 years.) He has referred me to a specialist from Dartmouth, a hospital associated with our local teaching college. With that said, I'm sitting here with 6 studies to discuss with him re. SCS. I also have 3 for the endo in case he doesn't agree with me! They found evidence of my SCS with duirnal cortisols t 11:30 p.m. and midnight and repeated the next night. "His p.m. cortisol diurnals clearly indicate elevated cortisol levels and evidence of cortisol overproduction" was their assessment. Since most doctors don't work t midnight this is a reason SCS is missed! (I did see 2 reports of large groups (150+ and 220+ PTNs) where they found SCS ~24% of the time in unilateral ptns and ~43% of the bilateral ptns! I had the info and was almost ready to report it here when my computer crashed; I'll have to go back and recreate it when I have time!) %points may be off 1 or 2 points, I'm drawing from memory! The other item I'm looking at is "Cyclic Cushing's syndrome". Check this out: http://www.eje-online.org/content/157/3/245.full.pdf and maybe this: http://jcem.endojournals.org/content/90/8/4955.full.pdf (Dr. Nieman is the one in charge of most of the adult cushing's and hyperldosteronism.) I am checking this because I have been noticing some potential signs of CS in the evening. Every night I have two stripes or something on my right leg. They are 3/4 to an inch and go round my leg 2 and 4 inches above my knee. They look like a bruise. Tonight I have a new one starting to show 3 inches below the knee. Maybe I will have to get couple of swabs and start doing my own DXing! (What's that sying about Zebra's! ) When I get all done with this I MIGHT have an opinion why Spironolactone may not be the correct med. for many of us! (Remember the CYP11B1/CYP11B2 story!) More later if my mind doesn't explode! ..... >> I hope these images come through. If not, I'll put them in the files. The> last two were same day, same time, same saliva. My serum cortisol at 8 a.m.> was at the top of the range. One serum test or a 24-hour urine is not> sufficient to differentiate what cortisol is doing throughout the day. The> first two are same lab. The last two were same day, same time, same saliva> but different labs (and ranges). I'm taking Seriphos at 3 p.m. and its> calming the 3 - 8 p.m. jitters.> > > > I went to Univ of Colorado in 2005. The endo swore I had Cushings and said> she'd dig until she got to the bottom of the problem. When the 8 a.m.> cortisol and the 24-hour cortisol didn't pan out, she lost interest.> > > > Val> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2012 Report Share Posted July 6, 2012 If it has anything to do with cortisol a 6a.m. increase would be normal as that is when it becomes highest. It is normally very low late at night to prepare the body for sleep. Are you on Spiro or eplerenone? Here is something that might intrest you: http://cortisolconnection.com/index.php I litterly just found it so you can read long with me and we can compare notes! ..... > > , I'm pretty much an anxious mess but am improving with Lyme treatment. > When I went to U of CO, Mayo and National Jewish in 2008, I was a complete > basket case. The jitters I'm referring to are inner tremor and shakes. I > wake up at about 6 a.m. with the jitters, too. I am unable to go to sleep > or stay asleep without medication. > > > > Please keep me informed on what you find. I would be very, very interested > in a biopsy of some of those rash skin cells. I don't have a clue how to > deal except to continue Lyme treatment, MCB and low salt. Seriphos helps. > My last little shock was a GFR of 55 (4/12) but I was still on quite a bit > of pain med so I'm hoping the next one is okay. The one before my knee > surgery (2/13) was >60. > > > > Val > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of > > > Hi Val, What is " 3-8 p.m. jitters " ? Has anybody done a spot check for > cortisol during that timeframe? As you might have guessed, I have been busy > researching between doctor appts. and raising my stress fighting with the > city over a house I own! I have talked with 2 phsyco docs in addition to > my PCP and surgeon. Next week is quiet with only the PCP on Monday but the > following week it's 2 more phsyco docs, the doc in charge of endo for > clearance for surgery and a normal podiatry appt. Oh yea, VA Disability > claim is coming to a head so I had 2 appts. for that and a vascular US in a > couple of weeks. > > When I spoke with the first physchatrist he thought I was " right on " with my > assessment on how excess cortisol might be affecting depression and mood > disorder. (I am finding this has been very active research item in the > last 2 years.) He has referred me to a specialist from Dartmouth, a > hospital associated with our local teaching college. With that said, I'm > sitting here with 6 studies to discuss with him re. SCS. I also have 3 for > the endo in case he doesn't agree with me! > > They found evidence of my SCS with duirnal cortisols t 11:30 p.m. and > midnight and repeated the next night. " His p.m. cortisol diurnals clearly > indicate elevated cortisol levels and evidence of cortisol overproduction " > was their assessment. Since most doctors don't work t midnight this is a > reason SCS is missed! (I did see 2 reports of large groups (150+ and 220+ > PTNs) where they found SCS ~24% of the time in unilateral ptns and ~43% of > the bilateral ptns! I had the info and was almost ready to report it here > when my computer crashed; I'll have to go back and recreate it when I have > time!) %points may be off 1 or 2 points, I'm drawing from memory! > > The other item I'm looking at is " Cyclic Cushing's syndrome " . Check this > out: > > http://www.eje-online.org/content/157/3/245.full.pdf and maybe this: > > http://jcem.endojournals.org/content/90/8/4955.full.pdf (Dr. Nieman is the > one in charge of most of the adult cushing's and hyperldosteronism.) > > I am checking this because I have been noticing some potential signs of CS > in the evening. Every night I have two stripes or something on my right > leg. They are 3/4 to an inch and go round my leg 2 and 4 inches above my > knee. They look like a bruise. Tonight I have a new one starting to show 3 > inches below the knee. Maybe I will have to get couple of swabs and start > doing my own DXing! (What's that sying about Zebra's! > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/03.gif> ) > > When I get all done with this I MIGHT have an opinion why Spironolactone may > not be the correct med. for many of us! (Remember the CYP11B1/CYP11B2 > story!) <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif> > > More later if my mind doesn't explode! > > . > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > =44882/stime=1341632159/nc1=5191951/nc2=3848644/nc3=5191945> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2012 Report Share Posted July 7, 2012 Val, I also have the inner (and sometimes outer) tremors and shakes! And almost everyday twitching. And the early AM wakeup jitters (every day AM wakeup comes with a dose of racing heart and tremors). Weird. And also I'm unable to sleep through the night and wake up frequently feeling startled. Usually 1 hour after falling asleep I wake up full of anxiety although my mind is clear but the internal wave of adrenaline still causes SOB and racing pulse and BP spikes. Do you also wake up with cramps in legs (calves)? Do you have involuntary breathing? (sometime I get 1 extra inspiration between 2 normal breathing). I will need to look up Lyme seriously. Hope you'll get better soon! tiu > > , I'm pretty much an anxious mess but am improving with Lyme treatment. > When I went to U of CO, Mayo and National Jewish in 2008, I was a complete > basket case. The jitters I'm referring to are inner tremor and shakes. I > wake up at about 6 a.m. with the jitters, too. I am unable to go to sleep > or stay asleep without medication. > > > > Please keep me informed on what you find. I would be very, very interested > in a biopsy of some of those rash skin cells. I don't have a clue how to > deal except to continue Lyme treatment, MCB and low salt. Seriphos helps. > My last little shock was a GFR of 55 (4/12) but I was still on quite a bit > of pain med so I'm hoping the next one is okay. The one before my knee > surgery (2/13) was >60. > > > > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2012 Report Share Posted July 7, 2012 , cyclical cushings is extremely hard to DX because most endos did not even know it exists. Then you'll need multiple days saliva cortisol testing. To make matter worse cyclical/episodic Cushing's can be caused by ectopic ACTH producing tumor. HINT: look up Dr. Theodore Friedman papers on cyclical Cushing's. > > > Hi Val, What is " 3-8 p.m. jitters " ? Has anybody done a spot check for > cortisol during that timeframe? As you might have guessed, I have been > busy researching between doctor appts. and raising my stress fighting > with the city over a house I own! I have talked with 2 phsyco docs in > addition to my PCP and surgeon. Next week is quiet with only the PCP > on Monday but the following week it's 2 more phsyco docs, the doc in > charge of endo for clearance for surgery and a normal podiatry appt. Oh > yea, VA Disability claim is coming to a head so I had 2 appts. for that > and a vascular US in a couple of weeks. > > When I spoke with the first physchatrist he thought I was " right on " > with my assessment on how excess cortisol might be affecting depression > and mood disorder. (I am finding this has been very active research > item in the last 2 years.) He has referred me to a specialist from > Dartmouth, a hospital associated with our local teaching college. With > that said, I'm sitting here with 6 studies to discuss with him re. SCS. > I also have 3 for the endo in case he doesn't agree with me! > > They found evidence of my SCS with duirnal cortisols t 11:30 p.m. and > midnight and repeated the next night. " His p.m. cortisol diurnals > clearly indicate elevated cortisol levels and evidence of cortisol > overproduction " was their assessment. Since most doctors don't work t > midnight this is a reason SCS is missed! (I did see 2 reports of large > groups (150+ and 220+ PTNs) where they found SCS ~24% of the time in > unilateral ptns and ~43% of the bilateral ptns! I had the info and was > almost ready to report it here when my computer crashed; I'll have to > go back and recreate it when I have time!) %points may be off 1 or 2 > points, I'm drawing from memory! > > The other item I'm looking at is " Cyclic Cushing's syndrome " . Check > this out: > > http://www.eje-online.org/content/157/3/245.full.pdf > <http://www.eje-online.org/content/157/3/245.full.pdf> and maybe this: > > http://jcem.endojournals.org/content/90/8/4955.full.pdf > <http://jcem.endojournals.org/content/90/8/4955.full.pdf> (Dr. Nieman > is the one in charge of most of the adult cushing's and > hyperldosteronism.) > > I am checking this because I have been noticing some potential signs of > CS in the evening. Every night I have two stripes or something on my > right leg. They are 3/4 to an inch and go round my leg 2 and 4 inches > above my knee. They look like a bruise. Tonight I have a new one > starting to show 3 inches below the knee. Maybe I will have to get > couple of swabs and start doing my own DXing! (What's that sying about > Zebra's! [] ) > > When I get all done with this I MIGHT have an opinion why Spironolactone > may not be the correct med. for many of us! (Remember the > CYP11B1/CYP11B2 story!) [] > > More later if my mind doesn't explode! > > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2012 Report Share Posted July 7, 2012 It's more like a bruise, 2 above the knee and 1 starting below the knee on right leg (same side as adenoma, and continuious flank and testis pain!) This has been going on for over a week. They start to show late afternoon and are gone in the morning. I may have found a major key this morning: 2,3,7,8-tetrachloro-dibenzo-p-dioxin (TCDD), affectionately known as " Agent Orange " by some of us! I found half dozen studies and the conclusion is consistant: " Restraint stress or TCDD treatment raised the serum level of corticosterone and surpressed the testicular level of steroidogenic acute regulatory (StAR) protein and serum level of testosterone significantly. " Hmm, high cortisol and low testosterone - I can relate to that! I also found a study done by the U. of Texas and the Air Force research lab that studied airmen that were involved in the spraying in Vietnam. " Conclusion: TCDD exposure at general population levels is associated with a decreasing risk of BPH with higher exposure levels. TCDD exposure is also negatively associated with serum testosterone levels. " Maybe that explains a PSA of 0.28 (0-4.0) and testosterone 1.26 (1.95-11.38)! (I was at DaNang and the level of contamination is still 300 times the acceptable level.) I just had an Agent Orange Registery Exam and he didn't say anything about BPH and never checked testosterone or cortisol, that sure builds confidence! Should be an interesting appt. w/PCP Monday morning! Now, this probably won't help you unless you were in Vietnam in the 60's but I had to tell someone! I have to go back and look at your story and then maybe I'll have some more ideas. > > I understand that cortisol is highest in the morning but mine is above the > top of the normal band all the time. Mine doesn't fall enough to allow > sleep. I'm assuming it is that rising morning cortisol that shakes me up at > 6 a.m. I'm on eplerenone, 75 mg. Spiro didn't do too well for me. > > > > I read Talbott's book. Many of the things he recommends are exactly > what my doc recommends. I have found inositol and theanine stop my shakes > more than about anything. I've been hearing about Talbott for years and > assume he's onto something. > > > > Are you still getting the rash around your knees? Is it gone by morning? > > > > Val > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of > > If it has anything to do with cortisol a 6a.m. increase would be normal as > that is when it becomes highest. It is normally very low late at night to > prepare the body for sleep. Are you on Spiro or eplerenone? > > Here is something that might intrest you: > > http://cortisolconnection.com/index.php > > I litterly just found it so you can read long with me and we can compare > notes! > > .... > > . > > http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId= > 44885/stime=1341638171/nc1=5191951/nc2=3848642/nc3=5191950 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Thanks, I did check out Friedman's papers. I'll bet my Endos at NIH have heard of it and I will discuss it with them after checking locally. I am suspecting it due to a pattern of bruising that shows each afternoon and goes away in the morning, I understand abnormal bruising can be a sign of cushing's. BTW, this is new since I returned from NIH, been going on just over a week. I believe ACTH surpressed appropriately so they ruled out the pituitary. My AVS also laterlized to my right adrenal showing both abnormal levels of aldosterone and cortisol. Thanks.... > > > > > > Hi Val, What is " 3-8 p.m. jitters " ? Has anybody done a spot check for > > cortisol during that timeframe? As you might have guessed, I have been > > busy researching between doctor appts. and raising my stress fighting > > with the city over a house I own! I have talked with 2 phsyco docs in > > addition to my PCP and surgeon. Next week is quiet with only the PCP > > on Monday but the following week it's 2 more phsyco docs, the doc in > > charge of endo for clearance for surgery and a normal podiatry appt. Oh > > yea, VA Disability claim is coming to a head so I had 2 appts. for that > > and a vascular US in a couple of weeks. > > > > When I spoke with the first physchatrist he thought I was " right on " > > with my assessment on how excess cortisol might be affecting depression > > and mood disorder. (I am finding this has been very active research > > item in the last 2 years.) He has referred me to a specialist from > > Dartmouth, a hospital associated with our local teaching college. With > > that said, I'm sitting here with 6 studies to discuss with him re. SCS. > > I also have 3 for the endo in case he doesn't agree with me! > > > > They found evidence of my SCS with duirnal cortisols t 11:30 p.m. and > > midnight and repeated the next night. " His p.m. cortisol diurnals > > clearly indicate elevated cortisol levels and evidence of cortisol > > overproduction " was their assessment. Since most doctors don't work t > > midnight this is a reason SCS is missed! (I did see 2 reports of large > > groups (150+ and 220+ PTNs) where they found SCS ~24% of the time in > > unilateral ptns and ~43% of the bilateral ptns! I had the info and was > > almost ready to report it here when my computer crashed; I'll have to > > go back and recreate it when I have time!) %points may be off 1 or 2 > > points, I'm drawing from memory! > > > > The other item I'm looking at is " Cyclic Cushing's syndrome " . Check > > this out: > > > > http://www.eje-online.org/content/157/3/245.full.pdf > > <http://www.eje-online.org/content/157/3/245.full.pdf> and maybe this: > > > > http://jcem.endojournals.org/content/90/8/4955.full.pdf > > <http://jcem.endojournals.org/content/90/8/4955.full.pdf> (Dr. Nieman > > is the one in charge of most of the adult cushing's and > > hyperldosteronism.) > > > > I am checking this because I have been noticing some potential signs of > > CS in the evening. Every night I have two stripes or something on my > > right leg. They are 3/4 to an inch and go round my leg 2 and 4 inches > > above my knee. They look like a bruise. Tonight I have a new one > > starting to show 3 inches below the knee. Maybe I will have to get > > couple of swabs and start doing my own DXing! (What's that sying about > > Zebra's! [] ) > > > > When I get all done with this I MIGHT have an opinion why Spironolactone > > may not be the correct med. for many of us! (Remember the > > CYP11B1/CYP11B2 story!) [] > > > > More later if my mind doesn't explode! > > > > .... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 , cyclical cushings is extremely hard to DX because most endos did not even know it exists. Then you'll need multiple days saliva cortisol testing. To make matter worse cyclical/episodic Cushing's can be caused by ectopic ACTH producing tumor. HINT: look up Dr. Theodore Friedman papers on cyclical Cushing's. > > > Hi Val, What is " 3-8 p.m. jitters " ? Has anybody done a spot check for > cortisol during that timeframe? As you might have guessed, I have been > busy researching between doctor appts. and raising my stress fighting > with the city over a house I own! I have talked with 2 phsyco docs in > addition to my PCP and surgeon. Next week is quiet with only the PCP > on Monday but the following week it's 2 more phsyco docs, the doc in > charge of endo for clearance for surgery and a normal podiatry appt. Oh > yea, VA Disability claim is coming to a head so I had 2 appts. for that > and a vascular US in a couple of weeks. > > When I spoke with the first physchatrist he thought I was " right on " > with my assessment on how excess cortisol might be affecting depression > and mood disorder. (I am finding this has been very active research > item in the last 2 years.) He has referred me to a specialist from > Dartmouth, a hospital associated with our local teaching college. With > that said, I'm sitting here with 6 studies to discuss with him re. SCS. > I also have 3 for the endo in case he doesn't agree with me! > > They found evidence of my SCS with duirnal cortisols t 11:30 p.m. and > midnight and repeated the next night. " His p.m. cortisol diurnals > clearly indicate elevated cortisol levels and evidence of cortisol > overproduction " was their assessment. Since most doctors don't work t > midnight this is a reason SCS is missed! (I did see 2 reports of large > groups (150+ and 220+ PTNs) where they found SCS ~24% of the time in > unilateral ptns and ~43% of the bilateral ptns! I had the info and was > almost ready to report it here when my computer crashed; I'll have to > go back and recreate it when I have time!) %points may be off 1 or 2 > points, I'm drawing from memory! > > The other item I'm looking at is " Cyclic Cushing's syndrome " . Check > this out: > > http://www.eje-online.org/content/157/3/245.full.pdf > <http://www.eje-online.org/content/157/3/245.full.pdf> and maybe this: > > http://jcem.endojournals.org/content/90/8/4955.full.pdf > <http://jcem.endojournals.org/content/90/8/4955.full.pdf> (Dr. Nieman > is the one in charge of most of the adult cushing's and > hyperldosteronism.) > > I am checking this because I have been noticing some potential signs of > CS in the evening. Every night I have two stripes or something on my > right leg. They are 3/4 to an inch and go round my leg 2 and 4 inches > above my knee. They look like a bruise. Tonight I have a new one > starting to show 3 inches below the knee. Maybe I will have to get > couple of swabs and start doing my own DXing! (What's that sying about > Zebra's! [] ) > > When I get all done with this I MIGHT have an opinion why Spironolactone > may not be the correct med. for many of us! (Remember the > CYP11B1/CYP11B2 story!) [] > > More later if my mind doesn't explode! > > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Low K can cause tremors. > > > > , I'm pretty much an anxious mess but am improving with Lyme treatment. > > When I went to U of CO, Mayo and National Jewish in 2008, I was a complete > > basket case. The jitters I'm referring to are inner tremor and shakes. I > > wake up at about 6 a.m. with the jitters, too. I am unable to go to sleep > > or stay asleep without medication. > > > > > > > > Please keep me informed on what you find. I would be very, very interested > > in a biopsy of some of those rash skin cells. I don't have a clue how to > > deal except to continue Lyme treatment, MCB and low salt. Seriphos helps. > > My last little shock was a GFR of 55 (4/12) but I was still on quite a bit > > of pain med so I'm hoping the next one is okay. The one before my knee > > surgery (2/13) was >60. > > > > > > > > Val > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 If you have not done so go to VA web site and read all about AO. Don't think there is any thing there as to possable cushings. > > > > I understand that cortisol is highest in the morning but mine is above the > > top of the normal band all the time. Mine doesn't fall enough to allow > > sleep. I'm assuming it is that rising morning cortisol that shakes me up at > > 6 a.m. I'm on eplerenone, 75 mg. Spiro didn't do too well for me. > > > > > > > > I read Talbott's book. Many of the things he recommends are exactly > > what my doc recommends. I have found inositol and theanine stop my shakes > > more than about anything. I've been hearing about Talbott for years and > > assume he's onto something. > > > > > > > > Are you still getting the rash around your knees? Is it gone by morning? > > > > > > > > Val > > > > > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of > > > > If it has anything to do with cortisol a 6a.m. increase would be normal as > > that is when it becomes highest. It is normally very low late at night to > > prepare the body for sleep. Are you on Spiro or eplerenone? > > > > Here is something that might intrest you: > > > > http://cortisolconnection.com/index.php > > > > I litterly just found it so you can read long with me and we can compare > > notes! > > > > .... > > > > . > > > > http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId= > > 44885/stime=1341638171/nc1=5191951/nc2=3848642/nc3=5191950 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 OA link http://www.publichealth.va.gov/exposures/agentorange/ > > > > > > I understand that cortisol is highest in the morning but mine is above the > > > top of the normal band all the time. Mine doesn't fall enough to allow > > > sleep. I'm assuming it is that rising morning cortisol that shakes me up at > > > 6 a.m. I'm on eplerenone, 75 mg. Spiro didn't do too well for me. > > > > > > > > > > > > I read Talbott's book. Many of the things he recommends are exactly > > > what my doc recommends. I have found inositol and theanine stop my shakes > > > more than about anything. I've been hearing about Talbott for years and > > > assume he's onto something. > > > > > > > > > > > > Are you still getting the rash around your knees? Is it gone by morning? > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of > > > > > > If it has anything to do with cortisol a 6a.m. increase would be normal as > > > that is when it becomes highest. It is normally very low late at night to > > > prepare the body for sleep. Are you on Spiro or eplerenone? > > > > > > Here is something that might intrest you: > > > > > > http://cortisolconnection.com/index.php > > > > > > I litterly just found it so you can read long with me and we can compare > > > notes! > > > > > > .... > > > > > > . > > > > > > http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId= > > > 44885/stime=1341638171/nc1=5191951/nc2=3848642/nc3=5191950 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Been there, Done that, Don't trust them as they are the ones that contaminted me! I am sitting here with study abstracts done in: (year) India(11),Czech R.(09),Korea(08),India(09) and India(10). Oh Yea, there a couple from the U.S. 1 done by U. of Michigan (1990) and another by U. of Texas and USAF Research Lab in Texas(2006). The last 2 don't directly address cortisol but are aimed more at testosterone and are more technical. I don't understand alot of the technical terms but do recognize some terms that I heard at NIH like: 17-hydroxy and P450. Dr. Moraitis was specifically looking at 17-hydroxy issues and I bet he will understand it! (I may have just solved a mystery for him!) Guess we will see! Oh yea, I notice there is a stress factor (think PTSD and MDD) which I am guessing raises the cortisol and then TCDD enhances the experience but what do I know about it - I'm just the lab RAT! Stay tuned! > > >> > > I understand that cortisol is highest in the morning but mine is above the> > > top of the normal band all the time. Mine doesn't fall enough to allow> > > sleep. I'm assuming it is that rising morning cortisol that shakes me up at> > > 6 a.m. I'm on eplerenone, 75 mg. Spiro didn't do too well for me.> > > > > > > > > > > > I read Talbott's book. Many of the things he recommends are exactly> > > what my doc recommends. I have found inositol and theanine stop my shakes> > > more than about anything. I've been hearing about Talbott for years and> > > assume he's onto something.> > > > > > > > > > > > Are you still getting the rash around your knees? Is it gone by morning?> > > > > > > > > > > > Val> > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of > > > > > > If it has anything to do with cortisol a 6a.m. increase would be normal as> > > that is when it becomes highest. It is normally very low late at night to> > > prepare the body for sleep. Are you on Spiro or eplerenone?> > > > > > Here is something that might intrest you:> > > > > > http://cortisolconnection.com/index.php> > > > > > I litterly just found it so you can read long with me and we can compare> > > notes!> > > > > > ....> > > > > > .> > > > > > http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId=> > > 44885/stime=1341638171/nc1=5191951/nc2=3848642/nc3=5191950> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Non't think you have read every thing. Think you find this link relates to you. http://www.publichealth.va.gov/epidemiology/studies/vietnam-army-chemical-corps.\ asp In fact you should start with this link and go to all links from this page. http://www.publichealth.va.gov/exposures/agentorange/ > > > > > > > > I understand that cortisol is highest in the morning but mine is > above the > > > > top of the normal band all the time. Mine doesn't fall enough to > allow > > > > sleep. I'm assuming it is that rising morning cortisol that shakes > me up at > > > > 6 a.m. I'm on eplerenone, 75 mg. Spiro didn't do too well for me. > > > > > > > > > > > > > > > > I read Talbott's book. Many of the things he recommends are > exactly > > > > what my doc recommends. I have found inositol and theanine stop my > shakes > > > > more than about anything. I've been hearing about Talbott for > years and > > > > assume he's onto something. > > > > > > > > > > > > > > > > Are you still getting the rash around your knees? Is it gone by > morning? > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of > > > > > > > > > If it has anything to do with cortisol a 6a.m. increase would be > normal as > > > > that is when it becomes highest. It is normally very low late at > night to > > > > prepare the body for sleep. Are you on Spiro or eplerenone? > > > > > > > > Here is something that might intrest you: > > > > > > > > http://cortisolconnection.com/index.php > > > > > > > > I litterly just found it so you can read long with me and we can > compare > > > > notes! > > > > > > > > .... > > > > > > > > . > > > > > > > > > http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/ms\ > gId= > > > > 44885/stime=1341638171/nc1=5191951/nc2=3848642/nc3=5191950 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 I have reviewed both referenced sites previously but it looks like I need to submit an additional claim. > > > > > > > > > > I understand that cortisol is highest in the morning but mine is > > above the > > > > > top of the normal band all the time. Mine doesn't fall enough to > > allow > > > > > sleep. I'm assuming it is that rising morning cortisol that shakes > > me up at > > > > > 6 a.m. I'm on eplerenone, 75 mg. Spiro didn't do too well for me. > > > > > > > > > > > > > > > > > > > > I read Talbott's book. Many of the things he recommends are > > exactly > > > > > what my doc recommends. I have found inositol and theanine stop my > > shakes > > > > > more than about anything. I've been hearing about Talbott for > > years and > > > > > assume he's onto something. > > > > > > > > > > > > > > > > > > > > Are you still getting the rash around your knees? Is it gone by > > morning? > > > > > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > [mailto:hyperaldosteronism ] On Behalf Of > > > > > > > > > > > > If it has anything to do with cortisol a 6a.m. increase would be > > normal as > > > > > that is when it becomes highest. It is normally very low late at > > night to > > > > > prepare the body for sleep. Are you on Spiro or eplerenone? > > > > > > > > > > Here is something that might intrest you: > > > > > > > > > > http://cortisolconnection.com/index.php > > > > > > > > > > I litterly just found it so you can read long with me and we can > > compare > > > > > notes! > > > > > > > > > > .... > > > > > > > > > > . > > > > > > > > > > > > http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/ms\ > > gId= > > > > > 44885/stime=1341638171/nc1=5191951/nc2=3848642/nc3=5191950 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 , you are confusing the issue - read the references. This is a specific rare condition and ~11% of the time caused by an adrenal adenoma. It is NOT the normal cycling of cortisol you are talking about. > > > > > > Hi Val, What is " 3-8 p.m. jitters " ? Has anybody done a spot check for > > cortisol during that timeframe? As you might have guessed, I have been > > busy researching between doctor appts. and raising my stress fighting > > with the city over a house I own! I have talked with 2 phsyco docs in > > addition to my PCP and surgeon. Next week is quiet with only the PCP > > on Monday but the following week it's 2 more phsyco docs, the doc in > > charge of endo for clearance for surgery and a normal podiatry appt. Oh > > yea, VA Disability claim is coming to a head so I had 2 appts. for that > > and a vascular US in a couple of weeks. > > > > When I spoke with the first physchatrist he thought I was " right on " > > with my assessment on how excess cortisol might be affecting depression > > and mood disorder. (I am finding this has been very active research > > item in the last 2 years.) He has referred me to a specialist from > > Dartmouth, a hospital associated with our local teaching college. With > > that said, I'm sitting here with 6 studies to discuss with him re. SCS. > > I also have 3 for the endo in case he doesn't agree with me! > > > > They found evidence of my SCS with duirnal cortisols t 11:30 p.m. and > > midnight and repeated the next night. " His p.m. cortisol diurnals > > clearly indicate elevated cortisol levels and evidence of cortisol > > overproduction " was their assessment. Since most doctors don't work t > > midnight this is a reason SCS is missed! (I did see 2 reports of large > > groups (150+ and 220+ PTNs) where they found SCS ~24% of the time in > > unilateral ptns and ~43% of the bilateral ptns! I had the info and was > > almost ready to report it here when my computer crashed; I'll have to > > go back and recreate it when I have time!) %points may be off 1 or 2 > > points, I'm drawing from memory! > > > > The other item I'm looking at is " Cyclic Cushing's syndrome " . Check > > this out: > > > > http://www.eje-online.org/content/157/3/245.full.pdf > > <http://www.eje-online.org/content/157/3/245.full.pdf> and maybe this: > > > > http://jcem.endojournals.org/content/90/8/4955.full.pdf > > <http://jcem.endojournals.org/content/90/8/4955.full.pdf> (Dr. Nieman > > is the one in charge of most of the adult cushing's and > > hyperldosteronism.) > > > > I am checking this because I have been noticing some potential signs of > > CS in the evening. Every night I have two stripes or something on my > > right leg. They are 3/4 to an inch and go round my leg 2 and 4 inches > > above my knee. They look like a bruise. Tonight I have a new one > > starting to show 3 inches below the knee. Maybe I will have to get > > couple of swabs and start doing my own DXing! (What's that sying about > > Zebra's! [] ) > > > > When I get all done with this I MIGHT have an opinion why Spironolactone > > may not be the correct med. for many of us! (Remember the > > CYP11B1/CYP11B2 story!) [] > > > > More later if my mind doesn't explode! > > > > .... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 , yeap, cortisol is cyclical every day. But cyclical cushing's is when you have HYPER cycles of high cortisol superimposed over the normal diurnal cortisol (cycles can be weeks, months even years and they repeat). More details here: http://www.eje-online.org/content/157/3/245.full The article says they only found 65 cases in english PubMed since 1960! > > > Cortisol itself is incredibly " cyclical "  - ALL of ours should be cyclical depending on stress, anxiety, sleeping, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Yeap, some very " well respected " dr. still haven't seen the light ... They always told me it's anxiety ... your labs are fine etc. BTW, the latest practice in UK/Europe says that: " Traditional teaching has been to limit investigation for Conn's syndrome to patients who have a low blood potassium, or in whom blood pressure which is moderate to severe (>160/110mmHg) or is difficult to control with medication. However, using these criteria, many patients with Conn's syndrome will not be diagnosed. For example, about 40 per cent of patients with proven Conn's syndrome have normal blood potassium levels. " Read more here: http://www.netdoctor.co.uk/diseases/facts/conns.htm Read again: 40% OF PROVEN Conn's are normokalemic!!!! My personal guess (and I am not a doctor) is that although some, including me are technically within the K reference range (normokalemic) the K-Na balance is so weak that even eating some sweets (which will temporarily push K in intracellular space) will cause enough electrolyte imbalance to cause tremors/twitching/arrythmia etc. and this will get resolved by the time you visit the doctor for lab tests. Thanks for the link, I'll have to go LLMD route. tiu > > I have records clear back to about 2006 (I've been in this group since > 2005). Yes, I've had all that. I went to Dr. Young at Mayo, all set to > give him my history and my interaction with Dr. Grim. He flatly told me all > my symptoms were not of PA. I showed him pages and pages of symptoms from > our group. He said mostly they were not of PA. He said the only symptoms > of PA were those of low K. I guess he's never read the literature. > > Your symptoms all sound like mine. I rarely have calf cramps but do go > through periods of muscle spasms (shoulder/back) that have to be worked out > with massage. I've learned to medicate and supplement to the point where I > can get a night's sleep. > > You should at least get checked (and not by a regular doc at a regular lab). > Look at http://www.ilads.org/ > > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Some tumors self infarct when they outgrow their blood supply.CE Grim MDOn Jul 6, 2012, at 6:05 PM, Kainz wrote: ,Interesting the lesion is gone. I wonder how often it happens and we are not aware of it. My team have been following me for several years for a posterior pituitary adenoma (5 mm). I am on growth hormone injections, have swings in cortisol and occasionally suffer adrenal insufficiency. We have five years of MRI's every six months my MRI in september indicated some "changes." my MRI in may showed it is gone! Picture labs are still off though..Sent from my iPadOn Jul 6, 2012, at 5:44 PM, "Valarie " <val@...> wrote: I hope these images come through. If not, I'll put them in the files. The last two were same day, same time, same saliva. My serum cortisol at 8 a.m. was at the top of the range. One serum test or a 24-hour urine is not sufficient to differentiate what cortisol is doing throughout the day. The first two are same lab. The last two were same day, same time, same saliva but different labs (and ranges). I'm taking Seriphos at 3 p.m. and its calming the 3 - 8 p.m. jitters. I went to Univ of Colorado in 2005. The endo swore I had Cushings and said she'd dig until she got to the bottom of the problem. When the 8 a.m. cortisol and the 24-hour cortisol didn't pan out, she lost interest. Val <image002.png> <image004.png> <image006.png><image008.png> = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 I do not know but would susspect that Lyme's really messes with ACTH DV. As do many drugs and situational stress. So were the DVs done off all meds?CE Grim MDOn Jul 6, 2012, at 5:44 PM, Valarie wrote: I hope these images come through. If not, I'll put them in the files. The last two were same day, same time, same saliva. My serum cortisol at 8 a.m. was at the top of the range. One serum test or a 24-hour urine is not sufficient to differentiate what cortisol is doing throughout the day. The first two are same lab. The last two were same day, same time, same saliva but different labs (and ranges). I'm taking Seriphos at 3 p.m. and its calming the 3 - 8 p.m. jitters. I went to Univ of Colorado in 2005. The endo swore I had Cushings and said she'd dig until she got to the bottom of the problem. When the 8 a.m. cortisol and the 24-hour cortisol didn't pan out, she lost interest. Val <image002.png> <image004.png> <image006.png><image008.png> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 I hope these images come through. If not, I'll put them in the files. The last two were same day, same time, same saliva. My serum cortisol at 8 a.m. was at the top of the range. One serum test or a 24-hour urine is not sufficient to differentiate what cortisol is doing throughout the day. The first two are same lab. The last two were same day, same time, same saliva but different labs (and ranges). I'm taking Seriphos at 3 p.m. and its calming the 3 - 8 p.m. jitters. I went to Univ of Colorado in 2005. The endo swore I had Cushings and said she'd dig until she got to the bottom of the problem. When the 8 a.m. cortisol and the 24-hour cortisol didn't pan out, she lost interest. Val <image002.png> <image004.png> <image006.png> <image008.png> = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 I'm not sure what " subcutaneous " is but I am familir with Ver. Veins, Dad had opertions on them twice. First, these go around the leg, not up and down and there is no sign of a vein that I can see. Also, I have never seen any that come and go on a regular basis. I have a PCP appt. tomorrow morning and will see what she says. > > > > > > > > > > > > Hi Val, What is " 3-8 p.m. jitters " ? Has anybody done a spot > > check for > > > > cortisol during that timeframe? As you might have guessed, I > > have been > > > > busy researching between doctor appts. and raising my stress > > fighting > > > > with the city over a house I own! I have talked with 2 phsyco > > docs in > > > > addition to my PCP and surgeon. Next week is quiet with only the > > PCP > > > > on Monday but the following week it's 2 more phsyco docs, the > > doc in > > > > charge of endo for clearance for surgery and a normal podiatry > > appt. Oh > > > > yea, VA Disability claim is coming to a head so I had 2 appts. > > for that > > > > and a vascular US in a couple of weeks. > > > > > > > > When I spoke with the first physchatrist he thought I was " right > > on " > > > > with my assessment on how excess cortisol might be affecting > > depression > > > > and mood disorder. (I am finding this has been very active > > research > > > > item in the last 2 years.) He has referred me to a specialist from > > > > Dartmouth, a hospital associated with our local teaching > > college. With > > > > that said, I'm sitting here with 6 studies to discuss with him > > re. SCS. > > > > I also have 3 for the endo in case he doesn't agree with me! > > > > > > > > They found evidence of my SCS with duirnal cortisols t 11:30 > > p.m. and > > > > midnight and repeated the next night. " His p.m. cortisol diurnals > > > > clearly indicate elevated cortisol levels and evidence of cortisol > > > > overproduction " was their assessment. Since most doctors don't > > work t > > > > midnight this is a reason SCS is missed! (I did see 2 reports of > > large > > > > groups (150+ and 220+ PTNs) where they found SCS ~24% of the > > time in > > > > unilateral ptns and ~43% of the bilateral ptns! I had the info > > and was > > > > almost ready to report it here when my computer crashed; I'll > > have to > > > > go back and recreate it when I have time!) %points may be off 1 > > or 2 > > > > points, I'm drawing from memory! > > > > > > > > The other item I'm looking at is " Cyclic Cushing's syndrome " . > > Check > > > > this out: > > > > > > > > http://www.eje-online.org/content/157/3/245.full.pdf > > > > <http://www.eje-online.org/content/157/3/245.full.pdf> and maybe > > this: > > > > > > > > http://jcem.endojournals.org/content/90/8/4955.full.pdf > > > > <http://jcem.endojournals.org/content/90/8/4955.full.pdf> (Dr. > > Nieman > > > > is the one in charge of most of the adult cushing's and > > > > hyperldosteronism.) > > > > > > > > I am checking this because I have been noticing some potential > > signs of > > > > CS in the evening. Every night I have two stripes or something > > on my > > > > right leg. They are 3/4 to an inch and go round my leg 2 and 4 > > inches > > > > above my knee. They look like a bruise. Tonight I have a new one > > > > starting to show 3 inches below the knee. Maybe I will have to get > > > > couple of swabs and start doing my own DXing! (What's that sying > > about > > > > Zebra's! [] ) > > > > > > > > When I get all done with this I MIGHT have an opinion why > > Spironolactone > > > > may not be the correct med. for many of us! (Remember the > > > > CYP11B1/CYP11B2 story!) [] > > > > > > > > More later if my mind doesn't explode! > > > > > > > > .... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 I sometimes get brain and legs felling. My k has never tested lower then 3.3. > > > > , I'm pretty much an anxious mess but am improving with Lyme treatment. > > When I went to U of CO, Mayo and National Jewish in 2008, I was a complete > > basket case. The jitters I'm referring to are inner tremor and shakes. I > > wake up at about 6 a.m. with the jitters, too. I am unable to go to sleep > > or stay asleep without medication. > > > > > > > >  > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic > Messages in this topic (15) > > Recent Activity: > > ·        New Members 5 > > Visit Your Group > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Yes, I do pee every time. 5-6 times/night and getting worse. But I am DASHing so it doesn't add up (low Na, no volume expansion so where is the extra peeing coming from)? What about tremors/twitching? tiu > > > > > > > Val, I also have the inner (and sometimes outer) tremors and shakes! > > And almost everyday twitching. And the early AM wakeup jitters > > (every day AM wakeup comes with a dose of racing heart and tremors) > > Weird. > > > > And also I'm unable to sleep through the night and wake up > > frequently feeling startled. > > Usually 1 hour after falling asleep I wake up full of anxiety > > although my mind is clear but the internal wave of adrenaline still > > causes SOB and racing pulse and BP spikes. > > > > Do you also wake up with cramps in legs (calves)? Do you have > > involuntary breathing? > > (sometime I get 1 extra inspiration between 2 normal breathing). > > > > I will need to look up Lyme seriously. > > Hope you'll get better soon! > > tiu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 There is virtually no way I could get any tests without meds. I've been on spiro and then epler since 2008 and the salivas were 2009, 2011 and 2012. In 2005, my ACTH was very high but the ACTH stim test was normal. I've heard often that the ACTH stim test is worthless. Is that true? Oddly, after the ACTH injection, I felt unusually calm. My Lyme doc says they rarely see elevated cortisol; if anything, a very low cortisol. From what I understand, Lyme does mess with many bodily processes. I've had one endocrine problem after another and of course, a knee with no cartilage. When I finally got diagnosed with hypOthyroidism, my antibodies were in the 800 range. Now, they are zero. I think my body mounted a huge antibody response to kill off the Lyme aggressor but got confused and killed my thyroid instead. I have a young (30 yo) friend who contracted Lyme in Florida. Even with a bulls eye rash, she went undiagnosed for over a year. She has the picture to prove it but none of her docs picked up on it. I'm not sure she's going to make it because she had a compromised immune system before she got sick, and now gets IVIG infusions. She's been bedridden for two years and is in and out of the hospital with heart issues, pneumonia, etc. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim I do not know but would susspect that Lyme's really messes with ACTH DV. As do many drugs and situational stress. So were the DVs done off all meds?On Jul 6, 2012, at 5:44 PM, Valarie wrote:I hope these images come through. If not, I'll put them in the files. The last two were same day, same time, same saliva. My serum cortisol at 8 a.m. was at the top of the range. One serum test or a 24-hour urine is not sufficient to differentiate what cortisol is doing throughout the day. The first two are same lab. The last two were same day, same time, same saliva but different labs (and ranges). I'm t aking Seriphos at 3 p.m. and its calming the 3 - 8 p.m. jitters.I went to Univ of Colorado in 2005. The endo swore I had Cushings and said she'd dig until she got to the bottom of the problem. When the 8 a.m. cortisol and the 24-hour cortisol didn't pan out, she lost interest.. Quote Link to comment Share on other sites More sharing options...
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