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Jo MacRaild

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Everything posted by Jo MacRaild

  1. 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 ??
  2. 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 ?
  3. 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..
  4. I hope the publicity causes a public outcry & Nikki gets het funding. disgusting that shes not.
  5. 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.
  6. 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..
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. Here, here, to what Dr F & Judy said..or should that be Ahmen !! Hallelujah or all other endo's take a very big note. Thanks for finding & posting. Susan, think it must be pending publication. New England Journal of Medicine ..this was elsewhere on the site F. TC, Zuckerbraun E, Daigle K, S. HK: The Changing Faces of Cushing's Syndrome: Mild and Periodic Cases Makes the Diagnosis More Difficult. Submitted to NEJM.
  13. The receptors are like the switch on for the abnormal tissue or tumor, & the meds chemically block it switching on..so reducing tumor output. The self leveling trying to control or interrupt production on other hormone levels is interesting. It would make sense in the body trying to stay alive & balance wouldn't it ? Do you have low dopamine ? Same here.. Well..I've been told it's low, as prolactin is high..& you produce more dopamine to cut or balance abnormal prolactin production..dont know if they've actually tested D ? or if it's just another presumption of what normal folks should do.. I've oft wonderred on the GH too..If so many endo tumors fire off to Gh, is that why , so many folks have low GH.. makes the HPA axis look very smart if it does !! suppose we'll have to wait for medical science to advance & see whats the actual tumor & whats not..
  14. Great info, thanks Mary..do you know if they have replaced the neuro there yet ?
  15. Aw, never mind, they are looking at other receptors.. but how come a mouse gets, '''moon shaped' face and large neck..Huh ?? no buffalo humps in mice ?? isn't that discriminatory to humans & buffalo's ?
  16. Nicole, there is a standard, but probably not oft done, pre surgery desmo /ACTH pituitary stim test, anyhow, so cant see it would be a problem.. NIH were fascinated with Corries ACTH & sodiums..& tracked them, but in her water load tracks ACTH, but the sodiums go up, when the adrenals switch on, which is ACTH independent.. Have a look at this............. http://www.google.com/search?q=Desmopressi...GL_enGB236GB236
  17. Desmopressins, a medical made up vasopressin, ...theres a lot of stuff out there on Vasopressin, thats your own natural posterior pit hormone for holding in water, & how it can stimulate release of tumor & hyperplasic ACTH..& I think vice versa in cushies... http://jcem.endojournals.org/cgi/content/full/84/6/2195 Great article Mary, thanks.
  18. Thanks Mary, If I can stay up that late I'll listen. I've seen Johns pictures before, But thanks to Donna for putting up the site. I know how much it meant to Corrie last year, to meet another cushie kid. They just sat there staring at each other, in total empathy, I'll ask his Mom if we can post his pics too, the difference is amazing, & it gives such hope to those struggling . Look forward to hearing what Donna has to say. Jo.
  19. Great article Robin, thanks. from my read..it picks up tissue that can potentially emit aldosterone or cortisol , via the precurser CYP enzymes so yes, great for finding rest tissue, & ectopic & metatastic adrenal tissue. ( I didn't know you could get that, well I knew they could spread, but not that the spread tissue was adrenal in origin... ) Not quite sure, on the carcinoid stuff, I got a bit cornfused there.. What a breakthrough, anyone had spect ? or PET ? I know they use octreotide , with PET, as its taken up by tumors that do there thing to GH..& inversely octreotide can treat them. Interesting they're making the jump to treatment suggestions for IMTO too. Hurray for advancing science.
  20. Interesting, no mention of incidentaloma.....surely if it was active, he'd of registered he was having symptoms..p'raps thats why they not too worried about it.. Tv personality, no symptoms & hopefully full negative endocrine work up ?
  21. Hi all, Corries been back on octreotide, AKA sandostatin since January...& she had it briefly last year too. Its similar as in it targets growth hormone analogues.. if any one wants any info just shout. Overall, in her, I'd say its not stopping the cortisol, but its doing a very good job on the side effects. Hard to say really, they wont test it.... it has cut insulin hyperproduction. & thats ''what'' were using it for.. but its also, cut the optic nerve compression, eye droop, headaches , totally initially but back to cyclical now, & body tanning, sweating & full body flushes. HR & BP are more normal, blood volume is improved , fluid gain is normal..& she feels a lot happier.. it's documented to work on extra pituitary & ectopic ACTH, as well as food stimulated cushings , & naughty adrenal nodules expressing angiotensin 11, that really kick off in the heart function & affect the BP badly, as well as the intended acromegaly & carcinoid syndrome. but not how long for..did wonder if it had a use in Nelsons too .. http://www.us.sandostatin.com/index.jsp Heres the octreotide website, if anyones interested, you can tick the box, as a med prof, & get the latest study & usage info..
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