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MCF last won the day on December 20 2011

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About MCF

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  1. MCF

    Cushing’s Help is 14 Today!

    Happy birthday to USSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS........................! Thanks, MaryO! <*smooch*>
  2. MCF

    Support This Site! It is EXPENSIVE!

    Darlin, that's why I ALWAYS say, "those who are able" should donate. And I think it goes without saying that MaryO, by absorbing the expenses we don't cover, demonstrates it every year. Lots of us have been financially compromised by illness or unexpected life circumstances and still need the help, we all know it and understand.
  3. MCF

    Support This Site! It is EXPENSIVE!

    The year is almost over and we've contributed only about 1/3 of the costs needed to support this site. There are plenty of folks without the means to contribute, but many folks who can spare a buck or ten. The archives on this site alone are priceless, there's nothing and nowhere that can help us save our own lives the way they have and will. If we keep the site up and running. Thanks to MaryO for not giving up on it and us.
  4. MCF

    Support This Site! It is EXPENSIVE!

    Thanks for the reminder, Robin and thanks MaryO, once again, for these boards and for keeping all this archived information online at great effort and expense. Off to Paypal you a donation right NOW.
  5. MCF

    Truth about cure from surgery.

    Actually, a lot of what's labeled recurrence is failure to attain surgical cure. Criteria and definitions of "cure" are kind of variable from surgeon to surgeon and they have an incentive to paint the rosiest picture of their own success rates. Over the years that I've been reading here and elsewhere, the cure rate from first surgeries is pretty low. That's not due to lack of surgical skill or care choosing surgeons, just the complex nature of HPA axis disorders and the lack of firm borders and definition of pituitary tumors as compared to other types of tumor. Then you have hyperplasia of the pituitary gland or in adrenals that have been overstimulated for years by an overactive pit tumor, still causing symptoms. If someone sees a cortisol rise weeks after pit surgery, it is often labeled recurrence if they had an earlier drop post op. But so many folks are cylical before and after... Conversely, research has demonstrated that folks who *are* cured may not see their cortisol drop until weeks post op, though I doubt any surgeon is failing to count those as cures, too, if they don't require additional surgery.
  6. MCF

    Truth about cure from surgery.

    I don't think the percentage is small at all. http://home.comcast.net/~staticnrg/Cushings/LongTermRemissionRates.pdf "Conclusions The overall remission rate of 56% (35/63) at 9·6 years follow-up is disappointing and merits some re-appraisal of the widely accepted principle that pituitary surgery must be the initial treatment of choice in pituitary-dependent Cushing’s syndrome. Following pituitary surgery, careful ongoing expert endocrine assessment is mandatory as the incidence of relapse increases with time and also with increasing rigour of the endocrine evaluation. A significant number of our patients were shown to have relapsed with a cyclical form of hypercortisolism"
  7. MCF

    High Cortisol and DHEA?

    I also think you should have other androgens, and aldosterone and renin tested. You're high all the time, could be adrenal rather than pituitary if it is Cushing's. The multiple times normal on the tests you listed is highest at midnight, suggesting that you actually do have reversal of diurnal rhythm within consistently high results all day.
  8. The reference ranges take stress into account in awake subjects, where the levels are higher than sleeping ones... if you're high, you're HIGH. It could be very useful to have serum and saliva sampling on a few days at 8 a.m., 4 p.m. and midnight. These are the only times for which there are reference ranges. Doing so would document if/when you have a reversal of normal circadian rhythm, a hallmark of Cushing's.
  9. It would be very useful to discuss the experiences of patients on Korlym recently who are diagnosed with Cushing's, or with recurrence, cyclical or episodic and on Korlym. Specifically, how is the performance of Korlym and the severe adrenal insufficiency being monitored and adjustments made, if at all, in those who gain benefits and mitigate severe adverse reactions with patient initiated dosing experimentation leading to dosing regimens of every 2-3 days and at less than recommended doses? This has allowed folks to remain on the drug, have far fewer complications and gain improved glucose and weight control. As normally rx'ed these folks would have to discontinue the drug. These patients get benefits with less Korlym and with less frequency due to its effects and very long half life. Is any organized monitoring of these post trial, more cyclical cases being undertaken? The company seems to wave off or dismiss these reports yet they are critical to understanding how fully the drug may be used by so many who it otherwise makes too ill. Studying this group may also provide further insights into unpredictable, episodic and cyclical disease, as well.
  10. MCF

    Altered circadian rhythm?

    It sounds as if you had the overnight dexamethasone suppression test, one which has proven to be extremely unreliable in diagnosing Cushing's. In fact, most of the folks I know from here and elsehwere who've gone on to have severe Cushing's have suppressed to normal as you did. The overnight test is a blood draw, not a urine test. I have to echo that using 8 a.m. testing for Cushing's is a new botchup even on these boards, where we've seen lots of reports of failure by doctors to do proper evaluations or to even have a basic understanding of proper testing and diagnostic signs for Cushing's. Yes, you certainly can have Cushing's, or Cushing's and something else. And yes, even those lactose intolerances (mine comes and goes), etc, are all part of a larger picture. They also help to let other folks let you know if their constellation of tests, symptoms and signs have been similar to yours, and if they're ahead of you on the diagnostic curve, that can be instructive and time saving for you.
  11. MCF

    Altered circadian rhythm?

    I think your doctors are overlooking the tissue atrophy and gastric manifestations of hypercortisolemia! For now, if you've had low K and you've been restricting salt, you might try Morton's blended lite salt in some water or sugar free beverage. Salt actually is required to open the channels for potassium to be delivered where it's needed. Sometimes taking K will make my foot and leg cramps worse unless I remember to take some salt with it, even when I've taken time released K. Lite salt is great for this. You need a full endocrine workup, and when you look at those symptom lists, remember that Harrison's Guide says that striae only occur in 67% of cases. A person isn't required to have all the symptoms or stigmata, and some have none. You certainly could have Cushing's or some other HPA axis dysfunction. Many folks have more than one thing going on. I don't think you should cherry pick or edit your out of range findings. Often, even normal results, when taken in context of the abnormals, are informative, too. It's a pattern that helps a *smart* doctor nail things down, not individual results, typically. But don't get me started on just how extremely rare smart, helpful doctors are, particularly endocrinologists. :-/
  12. MCF

    Altered circadian rhythm?

    Tissue atrophy, including mucosal, is typical of steroid excess. In my case, frex, it's led to years of blood in my urine with no bacteria cultured or from my nose when blowing. If you're experiencing hypoglycemia even having protein with all meals and snacks and not high carbs you may be having hormonal cycles... one of the roles of cortisol is to increase glucose production. If you have no meds or conditions contraindicating it, taking some blended (potassium and sodium) lite salt can quickly restore normal heart rate and bp... also, time released potassium chloride (by rx) and SloMag (OTC) can really keep both of those in normal rhythm, too. When I feel low on cortisol is when my bp and hr rise; salt actually lowers them, as do the others I mentioned.
  13. MCF

    Altered circadian rhythm?

    Lots of folks with Cushing's have NO striae... Have you tried cutting grains and sugar from your diet for your IBS? If not, I highly recommend you experiment with that. Your endo is confused or just not carefully reading the literature if she does not recognize diurnal reversal as highly diagnostic vs. a.m. lows. Have you read the testing forums in the archives here, and also the symptoms forum discussions? So much collected experience and wisdom in those archives.
  14. MCF

    Altered circadian rhythm?

    Reversal of diurnal rhythm is certainly a hallmark of Cushing's. Who is ordering your endocrine testing and what does s/he say about your symptoms, signs and results?
  15. I think this could be a great intro for folks who aren't sure if they belong to the club...