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twinkie

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Everything posted by twinkie

  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 d
  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
  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. 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 steroid
  11. Hi and welcome! Can you show the ranges for the tests? love, melly
  12. Hi Lou and welcome! You are in a good place for support, information and understanding. No, the labs your doctor ran will not alert you to cushings. You do seem to have several of the symptoms. Please know that one does not have to have every symptom to have this disease. I've even known thin cushies. Your best bet would be to find an endocronologist who understands how to properly test and treat cushings. However, this is easier said than done. There is a helpful doctors list up top or you could ask for recommendations. Or you could read a bit here to find the docs most of us see.
  13. Hi and welcome! I know many folks who have their doctor write an Rx for physical therapy as cushings interferes with muscle growth. How are your cortisol levels now? love, melly
  14. Hi Katie and welcome! I would think that you are not going to lose a significant amount of weight until you are completely off the hydro. HTH! love, melly
  15. Hello Pete and welcome! You are in a good place for support, information and understanding. Your levels are clearly elevated. Everyone's levels will vary with this disease. Are you seeing an endo who understands how to diagnose and treat this disease? love, melly
  16. From what I understand, radiation can take up to 2 years to see results. I know plenty of folks here who had a failed pit surgery plus radiation. The majority of them went on to bilateral-adrenalectomy (bla) in order to get rid of cushings. In fact, after being here 6+ years I don't of one person that was truly helped by radiation. How is your pit function now? What replacement hormones are you taking? love, melly
  17. Hi Steph and welcome! You are in a good place for support, information and understanding. Your symptoms do sound very suspicious for cushings. Please know that cushings cannot be proven or dismissed by only one or two tests---you'll need tons and tons. Please stick around here and read all you can and ask any questions you might have. It can seem strange to actually want this disease, but when you are desperate for answers it is warranted. I prayed and prayed for my pit tumors to be found on mri and congratulate anyone who finds their tumor. Best of luck to you and please keep us
  18. Most cushie men have low testosterone which leads to sexual disfunction. I also whole-heartedly agree with seeing a cushings specialist, not just your run-of-the-mill endo. It matters!
  19. Hello Nat and welcome! You are in a good place for support, information and understanding. Since you and your mother have both had parathyroid disease you both need to be checked for Multiple Endocrine Neoplasia or MEN. Insist on it. Since you have breast discharge I would have your prolactin levels checked. A tumor that grows on the pituitary gland and causes unusual discharge or milk is called a prolactima. Even though you have a hard time putting on weight it is still possible to have cushings. I've know a few skinny cushies. There could be other reasons for the weight loss t
  20. Hi Barbara and welcome! A 2 cm macroadenoma?! Wow! Congrats on getting to surgery. You sure are on a ton of hydro yet it sounds like you need more from the symptoms you are having. Have you had your Igf-1 (growth hormone) checked? What about other hormones? I would imagine a tumor that size would mess things up. How are your electrolytes? Oh, and what brand of hydro are you on? love, melly
  21. twinkie

    Support

    Hi and welcome! You are in a good place for information, support and understanding. Your symptoms do sound very suspicious for cushings. If you want to read stories about cushings I would recommend you read the success stories portion of this site. The only good thing about this disease is that it's curable. However, sometimes it can take multiple surgeries to get there. Please stick around here and read all you can and get copies of all labs. love, melly
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