Guest guest Posted July 6, 2012 Report Share Posted July 6, 2012 , 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! )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 6, 2012 Report Share Posted July 6, 2012 Val,Do you have Lyme Disease? I just spent an hour and a half talking to someone who had her Lyme cured after having had it for 40 yrs. I was interested because I have a cousin from Cape Cod who has had it for 14 years and is in very bad shape. This lady uses a protocol of Dr. Qingcai Zhang. His book is "Lyme Disease and Modern Chinese Medicine". My cousin is talking with her now, can let you know what she thinks after she speaks with her, as I don't have any knowledge about it, I just would like help for my cousin. From: Valarie <val@...> hyperaldosteronism Sent: Friday, July 6, 2012 11:58 PM Subject: RE: Re: Attn - Cortisol , 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! )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 6, 2012 Report Share Posted July 6, 2012 I'd love to hear what she says. I think I am approaching the end of antibiotics but am still not well. I do take some homeopathies. One of them normalized my liver enzymes in one week. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Ann Churchill,Do you have Lyme Disease? I just spent an hour and a half talking to someone who had her Lyme cured after having had it for 40 yrs. I was interested because I have a cousin from Cape Cod who has had it for 14 years and is in very bad shape. This lady uses a protocol of Dr. Qingcai Zhang. His book is " Lyme Disease and Modern Chinese Medicine " . My cousin is talking with her now, can let you know what she thinks after she speaks with her, as I don't have any knowledge about it, I just would like help for my cousin. From: Valarie <val@...> , 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! )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 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.phpI litterly just found it so you can read long with me and we can compare notes!..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2012 Report Share Posted July 7, 2012 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 From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lvasiliu@...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. > > 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 Cortisol itself is incredibly "cyclical" - ALL of ours should be cyclical depending on stress, anxiety, sleeping, whatever. From: lvasiliu@... <lvasiliu@...>Subject: Re: Attn - Cortisolhyperaldosteronism Date: Sunday, July 8, 2012, 1:45 AM , 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 With low K I have not so much true cramps - though sometimes I get those - but more weakness, and for me it's my legs. All of my legs, and describe it on here often as I felt like my brain and legs weren't connecting, I tell them to "walk" and get going and they are just too weak too listen. like just going up even a tiny incline (our driveway) is difficult and stairs near impossible. Seems the low K has weakness as a commonaltiy among us, but K affects any and all body systems so we really do vary in how we feel when ours is low. We're still human Val and sometimes I think and wish some of those, especially the #$$hole docs who were just so arrogant and rude (and who treated us nothing but wrong) , could lose their potassium, or have my headaches, or lay in bed awake with insomnia for a week with their hearts pounding through their chests because the hyperthyroidism on top of the low K is going crazy AND have to still go to work all day, both that they misdiagnosed, or find their professional life in dumps like mine....but then that's not healthy to think like that...but still..... From: Valarie <val@...>Subject: RE: Re: Attn - Cortisolhyperaldosteronism Date: Sunday, July 8, 2012, 12:48 AM 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 From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lvasiliu@...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. > > 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 I read them but some confuse the two. Many many many people who can't lose weight blame it all on cortisol and don't realize cortisol fluctuates very dramatically, but the magazine ads, and articles, do not always mention that when writing about the cortisol connection and when they find it fluctuates, not knowing it does anyway, they think that's it. At it's sales and marketing peak, I had everyone wanting their cortisols checked and had to explain that over and over. But they would see their labs and "highs" and get excited. From: <jclark24p@...>Subject: Re: Attn - Cortisolhyperaldosteronism Date: Sunday, July 8, 2012, 12:19 PM , 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 I am not aware that cortisol falling enables one to go to sleep.CE Grim MDOn Jul 7, 2012, at 10:54 PM, wrote: 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 Can you send pict of stripes?Subcutaneous Vericose Veins?CE Grim MDOn Jul 7, 2012, at 11:14 PM, wrote: 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 Guess they did not read Dr. Conn's article on normokalemic PA from 1965 JAMA. I attach this article FYI and ask someone to put it in our files of Articles by JW Conn. Indeed it was this article that got me into research in PA. I set out to prove him wrong on the prediction of PA being common. In doing research for the last 47 years I have not been able to do so. This is described in my Evolution Article as well. On re-reading today and looking at the microscopic pictures my interpretation is that the pathology is nodular hyperplasia and am contacting the MI group for long term follow up.Note this first pt was a physician. Good reading. Might want to take to those who have taken care of you and stressed that K is not low enough to have PA.CE Grim MDOn Jul 8, 2012, at 2:07 PM, lvasiliu@... wrote: 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 Do you pee n you wake up each time?CE Grim MDOn Jul 7, 2012, at 10:25 PM, lvasiliu@... wrote: 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 8, 2012 Report Share Posted July 8, 2012 Of course what one really needs to know is what is MY own DV of cortisol. Most of us do not have this done before a problem develops. So we really do not now what is normal for you or most individuals.CE Grim MD On Jul 6, 2012, at 10:16 PM, wrote: 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 8, 2012 Report Share Posted July 8, 2012 And here in America having severe HTN and chronic low potassium did not make much of a difference for years as they ignored both in many of us or just added some new medicine to it that didn't do anything anyway. From: lvasiliu@... <lvasiliu@...>Subject: Re: Attn - Cortisolhyperaldosteronism Date: Sunday, July 8, 2012, 4:07 PM 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.htmRead 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 9, 2012 Report Share Posted July 9, 2012 Tie a tourniquet around your upper leg and see if they appear.My beer is that you got the VV gene. Keep us posted. You may want to google VV and look at images.CE Grim MDOn Jul 8, 2012, at 5:57 PM, wrote: 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 9, 2012 Report Share Posted July 9, 2012 It's not just Viet Nam, my husband was expose to it in Korea, during the V.N. war. He was on the DMZ. The government has now admitted its use there too. From: <jclark24p@...> hyperaldosteronism Sent: Sunday, July 8, 2012 1:54 AM Subject: Re: Attn - Cortisol 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...
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