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Medical Forum / Diseases and Disorders / Diabetes / May 2008Ping: Susan
Hi Susan, To your knowledge, is there presently any association currently focused on Cushing/Addison research, like the associations that focus on heart disease, diabetes, MS etc? From reading your posts I am getting the impression that the medical profession is woefully uneducated in matters concerning adrenal disorder. You would make a wonderful advocate for such an organization. This reminds me of a health news letter I received a number of years back that listed the kinds of tests that women should get at particular ages. No where on the list was anything covering thyroid disfunction. I wrote back to the editor of the newsletter suggesting that he add that test to the list because I was finding a number of people who went undiagnosed for so long, even with complaints to their doctors. I finally got lucky and found a doctor who actually listened long enough to my string of what seemed to be unconnected complaints and got the diagnosis I had been certain of for a long time. I vote for Susan as ambassador for all adrenal disfunction. Laura@notmy.com wrote in message ... >Hi Susan, > [quoted text clipped - 19 lines] > >I vote for Susan as ambassador for all adrenal disfunction. I second that vote. Cheri > >I vote for Susan as ambassador for all adrenal disfunction. > > I second that vote. After the ceremony to install her, will there be a reception? With low-carb canapes? Priscilla, checking her engagement calendar > After the ceremony to install her, will there be a reception? With > low-carb canapes? Yum, brie on paper thin granny apple slices for me! In that vein, I made Tom his customary chocolate birthday cake (a day early so his mom could be with us) with peanut butter frosting and it was fabulous, no compromise from full carb. It wasn't LOW carb, it was vastly reduced carb. I made the deep dark chocolate cake recipe from the Hershey's baking book, using xylitol in place of sugar(could've used erythritol, since it was a crumb, not creamy cake) and using carbalose flour with just a tad extra leavening. To make lower carb confectioner's sugar without the intense and unpleasant cooling effect of erythritol in creamy stuff, I used my mini processor to whir some xylitol til it was powder. Frosting was creamy PB, heavy cream, butter, vanilla and the powdered xylitol. My skeptical husband and daughter pronounced it good as regular cake and frosting. I'm really loving carbalose for lack of off flavors, etc. I made very low carb spice muffins last week for moi. Susan > x-no-archive: yes > [quoted text clipped - 21 lines] > I'm really loving carbalose for lack of off flavors, etc. I made very > low carb spice muffins last week for moi. Sounded good up until the peanut butter ;) > Sounded good up until the peanut butter ;) My husband has a BIG Peanut Butter Monkey on his back. :-) Whirring the xylitol into powdered should work for any creamy frosting, without the intense, icky cooling of erythritol. my one hour pp was 103 after a slice this a.m. as an experiment. Susan > x-no-archive: yes > [quoted text clipped - 6 lines] > > my one hour pp was 103 after a slice this a.m. as an experiment. Experimentation is vital in areas such as this. And to sacrifice yourself to test the deep chocolate cake with peanut butter frosting shows us how altruistic you are. Throwing yourself in front of the cake this way! How noble! How -- dare I say it? -- saintly! St. Susan of the pastry! Priscilla, sniggling > Experimentation is vital in areas such as this. And to sacrifice > yourself to test the deep chocolate cake with peanut butter frosting > shows us how altruistic you are. Throwing yourself in front of the cake > this way! How noble! How -- dare I say it? -- saintly! St. Susan of > the pastry! What can I say, I'm a giver. ;-) Susan > Hi Susan, > [quoted text clipped - 19 lines] > > I vote for Susan as ambassador for all adrenal disfunction. Thanks bunches, but I am SO behind the curve on this stuff. I can connect the dots, but endocrinology is so exquisitely complex that the more I learn, the less I know. So many permutations and combinations and contradictory results, certainly in my case. There is csrf.net, and they provide a lot of good info, but their medical board is stacked with some academicians who ignore cases like mine, the majority of Cushing's cases, which are cyclical. My personal endo in Los Angeles, CA is a full time academic researcher who sees patients with complex cases on a limited basis, and he has grants from a variety of sources to study Cushing's and other endocrine disorders, and has a recent book out about thyroid disease. Thyroid, PCOS and DM often have Cushing's as the undiagnosed, unexplored cause, same with vit D deficiency. I rely on the experience, wisdom research dug up by the Cushing's community at cushings-help.com, where all sorts of endocrine disorders are addressed and a lot of research cited and I contribute there what I can. I believe there's also a pituitary network, a pituitary society, but a lot of these define cases as folks who test high cortisol all the time, with stigmata of the disease. I'm thin, have no hump, no violet stretch marks or Cushingoid appearance at all, for example. Doctors are taught that Cushing's is rare, and they consequently ignore it in even the most blatant cases, telling folks to stop eating and to exercise more, and ignoring abnormal test results in the process. It's scary out there. Consensus guidelines are a bane to modern medical practice. Susan > Doctors are taught that Cushing's is rare, and they consequently ignore > it in even the most blatant cases, telling folks to stop eating and to > exercise more, and ignoring abnormal test results in the process. That kind of nonsense is all too common. It took them several months to diagnose me with polymyalgia rheumatica simply because it's most common in older women. I was presenting all the classic symptoms, but because I wasn't an old woman they simply ignored the possibility of that diagnosis. As I later discovered it's actually less common in men of my age than doctors think, because one of the reasons they think it's rare is simply because they think it's rare and so fail to diagnose it. > It's scary out there. Consensus guidelines are a bane to modern medical > practice. It's because most doctors know nothing about maths, including statistics. That's also why they're so at sea trying to understand the paradoxical behaviour of endocrine disorders and eating disorders, because you do need a little mathematical modelling of dynamic processes to understand those. Yet if you look at what the major concerns in shaping the curricula for medical students are you find that junking as much basic maths and science as possible in the interests of cost cutting has been a major pre-occupation for many decades. Modern management methods elevate accountants to the top positions in every organisation and solve every difficult technical problem by escalating it up the management tree until no-one understands the technicalities so they can simply make a financial decision. It's an appealingly simple strategy which works very well indeed on simple problems, such as the price of oil used used to be :-)  SignatureChris Malcolm cam@infirmatics.ed.ac.uk DoD #205 IPAB, Informatics, JCMB, King's Buildings, Edinburgh, EH9 3JZ, UK [http://www.dai.ed.ac.uk/homes/cam/] >> Doctors are taught that Cushing's is rare, and they consequently ignore >> it in even the most blatant cases, telling folks to stop eating and to [quoted text clipped - 29 lines] >It's an appealingly simple strategy which works very well indeed on >simple problems, such as the price of oil used used to be :-) Er, not entirely when you look at the number of companies that have gone to the wall. :( |
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