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judycolby

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Everything posted by judycolby

  1. Well, as long as the meds you take can turn off an ACTH secreting tumor and lower your cortisol but not too low & then keep it in range, he might be right. Are you going to have levels checked? I have always thought that for people with Cushing's the fibro was interrelated. Judy
  2. Does it make any difference that with Cushing's you gain weight even if you hardly eat? Judy
  3. That's so sad. There was a time I would of just thought that was an excuse to get away with something. Now I know that just about anything is possible when things are out of balance. Judy
  4. If yours hasn't shipped yet, maybe they'll cross paths! That is kind of funny. I sometimes wonder if my generation will be around to see any big changes in the testing and dxing of Cushing's. Hopefully if we're not, the next generation will be able to reap the rewards. I also hope that we can find out what the researcher finds. Judy
  5. Jenny, actually, I'm encouraging my kids to adopt. I'm sure Bill's sister has it and we think there's a good chance his mom did too. Judy
  6. I'm sure they'll all give their donation! Just need to talk to the lab about doing the draw and get instructions from Dr. F. Dianne, Dr. F didn't give a name but I'll ask when I email him. While I do find this exciting I have to wonder what can really be done if he does find a link. Maybe that is farther down the road. Judy
  7. Just got an email from Dr. F. He has found an endo in England that would like vials of blood from Bill, Justin & Jess. He is looking for genetic mutations. I think that sounds exciting. I'm sure all three will agree to give up two vials each. Wouldn't it be great if this guy finds something, even if it's not from our blood. Just knowing that someone is looking at genetics is exciting. Judy
  8. I'm so glad we're having "confession" time, makes my family fit right in! Probably what I considered one of the worst was one morning a couple of years ago when I was trying to wake Justin, he drew his fist back and I know he was thinking of decking me. The emotions on his face when he really thought about what he was thinking of doing almost made me cry. That really isn't his personality. Judy eta - Angela, if there is still part of the tumor left, isn't there a good chance you still have Cushing's?
  9. Yep, if something isn't working right and it makes you mad, just hit it and break the whole thing. Judy
  10. Having lived with three people with high cortisol, I'd definitely say the elevated cortisol came first. I wonder at what point someone will figure out that they have some of these things backwards. Judy
  11. Sorry, I can't help you Shell. Mine loaded easily. Judy
  12. I think TLC has started having marathons of Mystery Diagnosis on either Sat. or Sun. Judy
  13. This worries me - for Bill. His bp stays way too high even on several meds. Judy
  14. http://www.skullbaseinstitute.com/papers/c...gs_syndrome.htm Here's the link, did you want the whole article up? Judy Decided to put the whole article up as it isn't very long. And now if other endos would just read and listen!!! The Changing Face of Cushing's Syndrome: Mild and Periodic Cases Makes the Diagnosis More Difficult By Theodore C. F., M.D., PhD, Erik Zuckerbraun M.D., Kimberly Daigle, Hrayr S., M.D., FACS Objective Many of the articles on Cushing's syndrome have examined patients with sustained and severe hypercortisolemia. Because CBG limits the amount of free cortisol (F) in circulation as F production increases, many of the tests used to diagnose Cushing's syndrome, such as UFC or night-time salivary cortisol may not detect a mild increase in F production. Furthermore, the periodic nature of Cushing's syndrome may lead to a normal measurement of F status when a patient is tested during a quiescent phase. Therefore, we determined the usefulness of several tests when performed on multiple occasions in consecutive patients with mild and/or periodic Cushing's syndrome. Methods 24 h UFC and urinary 17OHS, 11 PM salivary F measurements, overnight dexamethasone suppression (DEX) test, evening plasma F and imaging studies was performed between 1 and 6 occasions in 36 consecutive patients with signs and symptoms of hypercortisolemia. 19 of these patients were eventually diagnosed with pituitary Cushing's disease by biochemical testing and their diagnosis was confirmed by positive pathology at the time of surgery and/or post-operative hypo-cortisolism and clinical remission and are included in this analysis. Results 13 of 19 patients had at least 1 elevated UFC, 13 of 15 patients had at least 1 elevated 17-OHS, 12 of 16 patients had at least 1 elevated night-time salivary F, 6 of 12 patients had an elevated evening plasma F and 2 of 14 patients failed to suppress to DEX and 18 of 19 patients had a microadenoma on their pituitary MRI. In contrast, 16 of 19 patients had at least 1 normal UFC, 9 of 14 patients had at least 1 normal 17-OHS, 13 of 16 patients had at least 1 normal night-time salivary F, 6 of 12 patients had a normal evening plasma F and 12 of 14 patients suppressed to DEX. These findings support that the large majority of patients have periodic Cushing's syndrome and that if only 1 test was performed on 1 occasion, most of these patients would be excluded from correct diagnosis. Conclusion We conclude that the great majority of patients presenting to this tertiary Endocrinology clinic had periodic Cushing's syndrome as evident by normal testing on 1 or more occasions. Urinary 17-OHS was at least as sensitive as the more widely used test, UFC. We conclude that there is no single test that can always diagnose Cushing's syndrome and that the diagnosis needs to be made by a careful history and physical coupled with multiple tests assessing hypercortisolism.
  15. My first thought was "They're going to give them hydro!!!!!!!!!!!!!" Maybe they should give them an endo workup instead!! I too would be curious what they find from this. Judy
  16. When I saw this topic, I thought "and she has a surgery date now" You guys do a great job of interviewing. Judy
  17. What's really upsetting is when the doctor is as big as the patient, yet insists that size (overweight) is the cause of all the patients problems. Wonder how the doctor still feels good. Judy
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