Jo MacRaild

Thank you ladies, congrats on all your continuing hard work. I'd really like to know what A big ACTH response to CRH , but no cortisol increase is indicative of. & if theres any significance in the ACTH response doubling whilst on DDAVP . Thanks, I know the good doctors time is precious, but its one I've never got an answer on, & think I'll be lifting the lid of my box , saying, hang on, before I go..any one know ??

Thats interesting Marnie, at least you've got a sporting chance of getting highs as Dr F measures 17hdxy's. Good luck with the testing, fingers crossed for you. Here they insist on plodding on with uFC's, which the longer this has gone on , the lower the ufc's have got, even zero's despite looking full blown . They must be false negatives . Good to hear Laurel got a break from the keto.. We've also tried drugs & they worked initially, but like Laurel..all came back with a vengence too. so is glucocorticoid hyper sensitivity the same as glucocorticoid resistance ? or are they the opposite of each other ? I know an excess of circulating serum cortisol can overwhelm or block the cortisol receptors, & steroid metabolites jump side ways onto the mineralcortoid receptors. not as simples as most docs think, this stuff is it ?

Following on from the 17 hdxy's...heres an article Den sent me...that states different types of adrenal nodules /tumors do different things & produce non typical responses to testing & affect ufc spillage.. http://jcem.endojournals.org/cgi/content/full/94/8/2930 I'd be very interested in the receptor info. The zero ufc's we keep getting dont fit the clinical symptoms & way over the top steroid metabolites. Metyrapone is a cortisol blocker that works at 11betahydroxy..they tried it here..ended up in ICU..

I hope the publicity causes a public outcry & Nikki gets het funding. disgusting that shes not.

Do I count ? or do you have to be a uS citizen ?

accurately diagnosed and treated within a short period of time music to my ears...lucky lady. Thanks Mary, would be interested to read a full copy, if one pops up, & see what the CRH response was , not a lot, you'd think.. V interesting on the paradoxical response to dex...wonder on the hows on that one..co existing adrenal nodules ? or AVP elicited, or even lower ACTH causing improving edema response to dex from making the lady P ? sounds scarily familiar.

How very sad & unnecessary..my thoughts are with Maries family, The steroids might of been to rid the fluid build up, if it was severe enough, it could of caused the bleed & ridding fluid would also ease & improve the lung function, thankfully worked in another cushie I know..

Thanks, very interesting. what a common problem

Interesting article, thanks Susan. Kok, a lot of adrenal pathology/ disease is notorious for not showing on MRI etc, wonder if disease of the adrenal gland was more widespread than indicated by imaging , when they got in there ? or, as hypercortilism after hyperplasing the adrenals eventually causes tissue self destruct & gland atrophy, with only the nodules remaining, perhaps its a better long term resolution ? I'd love to know why, if anyone finds out.

Sorry cant get that one, I've done a lot of reading around it, as it's a big problem here, & although muscle effect/ function is touched on, most go into the acid based respiratory & endocrine cause stuff. if you search acid based respiratory disorders, & cushings , you have to go quite severe to get at some of the published stuff , theres a lot under respiratory failure & cushings. Real sorry, it can be quite scary to read & experience !! . There is some specific cushings stuff, but sadly a lot of it is grouped generally under obesity & hypoventilation syndrome. Which from our experience is only a little of the equation. Sally, you have fluid holding probs too, dont you ? try looking for more info under disorders of sodium & fluid balance & respiratory compromise/ failure.

Hi Sally, couldn't get at the full article you were after, but this one here's got some good pictures. http://www.ajronline.org/cgi/content/full/183/6/1653 Some folks on the boards do have full access, hope they pop along.

Thanks Mary, kind of blows the only adrenal disease paradoxicaly increases to dex theory right out the water..Poor guy, but glad they worked it out for him.

Sams show has still not been on over here..& Lord have I seen some watching out for it .I'd really like to see it. & Kates too..although I did watch Kates on the site link.