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twinkie

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twinkie last won the day on May 28 2011

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About twinkie

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    melly

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    HOT southern Nevada

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  1. Oh duh! I'm a bla-er so steroid is the treatment for me. I forget that's not the case for everyone. Whoops!
  2. Did it mention duocort? It's a time-released tablet of hydrocortisone being tested in Europe. Patients are having fantastic results from it but I'm quite sure we are years away from having it in the states.
  3. Thanks Mary! I began gh 9 months ago and love, love, love the stuff! It is a concern about how it might help tumors grow so this article makes me feel even better. love, melly
  4. Wow hon---you hit that lab out of the ballpark if I'm reading it right! How exactly does your endo know you metabolize dex quickly? My advice would be to find a cushings specialist quickly. There is a helpful doctors tab at the top of the page, or we would be happy to recommend someone. Many of us have had to travel in order to see a specialist who could properly diagnose and treat us. Please keep copies of all your labs, read all you can here and ask any questions you might have. You are not alone. love, melly
  5. It's certainly possible! One does not have to have every symptom to have this disease. I've known gals who were able to get pregnant and have a healthy baby while having cushings. HTH! love, melly
  6. My memory got so bad before surgery that it frightened me. Fortunately, it cleared up after the bla. Hugs! love, melly
  7. Hi Jody and welcome! You are in a good place for support, information and understanding. I would say your tumor is one of the larger ones I've seen here, but I have seen bigger ones. These types of tumors are generally very slow growing. I've been here for over 6 years and from what I've seen, a lot depends on whether you are cyclical or florid. It seems those who are florid have hard, easy to identify and remove tumors while those who are cyclical have snotty-type tumors that can be woven throughout the gland. This makes it difficult to gain a cure. In fact, most doctors I know don't even use the word cure but the word remission instead. I myself, had one pituitary surgery, wasn't cured, and had a bla 4 months later. I am cured. There are several folks here who have only had to have one pit surgery and have gone on to live good lives. But again, doctors don't use the word cure anymore when referring to a cyclical patient. It's good to be informed. It's good to be hopeful. As I said, I have been free of the beast for 4 years now and have never looked back. Best of luck to you and please keep us posted. love, melly
  8. Hi Kathy and welcome! You are in a good place for support, information and understanding. Please don't let your son stop looking for help just because his current doctors don't understand this disease. His feeling is right---cushing's kills. I've been on this board for 6 years now and have seen many wonderful people succomb to this disease, some because they didn't see the right doctors. There is a helpful doctors tab at the top of the page...maybe there is a good one on the island. Otherwise, we will be happy to suggest a doctor who understands cushings. His insurance may or may not cover the doctors who can help him. Please stick around and read all you can and ask any questions you might have. 3 high ufc's plus his symptoms should not be ignored. love, melly
  9. BDen gave good advice. However, there are some folks who feel their cushings began with steroids but never went away after stopping them. I would stop the cream and wait a few months. If your symptoms haven't improved then look for a good endo who understands this disease. Please keep us posted. love, melly
  10. twinkie

    Tumor on Pancreas

    Hi Anna and welcome! You are in a good place for support, information and understanding. No, I've never heard of anyone's tumor being located on the pacreas---but an ectopic tumor can be located anywhere. Please continue to share your husband's story here as ectopic tumors are super-duper rare. Have you done any reading here? Please read all you can; you know what they say, knowledge is power. Has a tumor on your hubs' pituitary been completely ruled out yet? Does his surgeon have oodles and oodles of these types of surgeries under his belt? What is the plan for replacement steroids after surgery? These are some questions I would ask your endo and surgeon. I wish you all the best! Please keep us posted. love, melly
  11. Hi and welcome! Can you show the ranges for the tests? love, melly
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