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About BDen13

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    Chatty Cushie

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  1. As sad as it is, the fact that big pharma now has something at stake in treating cushing's, there will be a lot more made into increasing awareness and getting doctors more information on properly diagnosing cushing's even in difficult cases than patient advocates could have ever done on their own. My endo is doing about 1-2 speeches on cushing's every month to various conferences, all funded by Corcept and Novartis.
  2. BDen13

    Fast Dexamethasone metabolizer?

    Have you done any other cushing's tests, like a late night salivary cortisol or a 24 hour Urinary free cortisol? Those are usually the first tests used to diagnose cushing's, rather than the dex suppression test.
  3. BDen13

    Truth about cure from surgery.

    I was not talking about reoccurances, I was talking about success rates of initial surgery, which from that report, are around 80%.
  4. BDen13

    Truth about cure from surgery.

    Also it is not true that "most" people require multiple surgeries. Only a small percentage do. I took a month off work but I work from home. I probably would have wanted a few more weeks if i had to go into an office. Wait until after your surgery to order a bracelet. I got an electronic one so I can change it.
  5. BDen13

    Truth about cure from surgery.

    Welcome to the site. Keep in mind that the people who have successful surgery are less likely to become long-term members of this site, so the user base of this site probably gives an unfairly negative representation of those who have had surgery. The fact is that 80% of initial pituitary surgeries are successful. Your tumor is average sized as far as pituitary tumors go but a little bit on the large side when compared with the tumors that typically cause cushing's. Yes, it does keep growing. Recovery will be tough as the cortisol has done a lot of damage to your body over the years. It's hard to build that back up. Do you have a plan for your surgery? It's essential that your surgeon to have done dozens if not hundreds of these surgeries if you want a successful outcome.
  6. BDen13

    confused, worried, what to do

    The only way to recover from cushing's caused by steroid use is to stop using the medication and give your body the time to recover. It can take a few months.
  7. Your 24 hr UFC was in the normal range (from my research it appears that 276 is the upper reference range in nmol for the 24 hour UFC), but at the upper end. You suppressed on the DST, which indicates that you likely don't have adrenal cushing's.
  8. I have found it difficult to run or do things on the elliptical like I used to. I found that cushing's made me pretty weak, so I have been lifting weights. Nothing that heavy. It makes me sore for a day or so after, but I feel a lot better the 3rd or 4th day after and each time I work out I feel more "back to normal". I generally do some calf raises and wall pushups then some sets with 10 lb dumbells then do some squats on the squat machine and then some work on the chest machine. I try to go sort of quickly between sets so that I get a cardio workout without having to do typical "cardio" like jogging or spinning. Also, it's good to have someone who had bronchial carcinoid ectopic cushing's on the site. I often read about them but have yet to talk to one. My endocrinologist strongly suspected it since I had very high ACTH readings and my chest CT revealed an abnormality in my lung. However, IPSS showed that I had cushing's disease and I had successful pituitary surgery in May. If you'd like to share, I'd be interested in knowing about how your tumor was discovered and diagnosed and any labs you happen to have. We're always trying to increase our knowledge-base here.
  9. BDen13

    Pcos or cushings ?

    Do you know what blood test she did? One blood test is not a suitable way to diagnose cushing's syndrome. You need to see an endocrinologist who specializes in cushing's - we have some other members on this site from the UK who can help you with info on how to do that.
  10. BDen13

    High Cortisol and DHEA?

    When I said "blood pressure" the second time, I meant to say blood sugar.
  11. BDen13

    High Cortisol and DHEA?

    You do seem to have a normal diurnal rhythm but your evening and midnight cortisol readings are very high and do indicate cushing's. How is your blood pressure? Have you ever had your blood pressure or blood potassium levels tested? Been getting any recurrent infections lately? Those are some ways cushing's can manifest itself in people who don't gain a lot of weight.
  12. Ask the doctor what else he thinks might be the problem. The tests you have been given are not the proper tests to diagnose cushing's.
  13. Morning testing is not a good diagnostic test for cushing's. Cortisol testing for cushing's needs to be done at night. A cortisol sample taken at 11 AM would generally be a bit lower than one at 8 AM in a normal person, not higher (depending on a number of factors depending on when they woke up, etc.). Your plasma ACTH is quite high but a single high morning plasma ACTH is not indicative of Cushing's on its own. If Cushing's is suspected you need proper testing for it - 24 Hour Urinary Free Cortisol and Mignight Salivary Cortisol and/or Midnight Serum Cortisol.
  14. BDen13

    Altered circadian rhythm?

    If I'm interpreting this correctly and all your blood and salivary tests have been at 8 AM, then no - you haven't been tested properly. The best way to diagnose cushing's is to test late at night. It's very hard to see a microadenoma on an MRI - especially if the correct protocol was not used (I expect it wasn't) and if the reader is not experienced in detecting pituitary microadenomas.
  15. Yep, lack of sexual desire/performance is very common in men with Cushing's. I always think of it this way - Cortisol is a stress hormone - fight or flight stuff. If it's something that helps you survive in that situation, cortisol makes your body focus on that. So it makes your body put on fat rather than muscle, stop bleeding but not heal, have high blood pressure, not hurt much, etc. The last thing your body worries about in that sort of situation is getting it on. I really stress going to an endocrinologist that specializes in cushing's or at least pituitary disorders. Cushing's is a rare disease and most endocrinologists focus their practices largely on diabetes these days and are therefore unable to correctly diagnose it.