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Everything posted by Nillie

  1. That is some amazing stuff Cyndie!!! You have inspired me to look into my ancestry as well. Maybe my brother in law (last name is Cushing) is related to you and Harvey too. I should find out. That would be so cool. I am just so impressed by all of you who have searched out ancestors. I am with Melly, I have been so intimidated by the process, I never tried. And, others in my family and relatives have already traced most of it anyway. Now all I have to do is read it!! I do know that my husband's family is related to some Kings in Europe. I will have to ask him which ones as I can't remember. The Bishop in my church encouraged me to look into my ancestry when he heard I was battling Cushing's disease. He said I maybe if I found some things in common with health and other things, it could help heal from the emotional effects. I have some ancestors that kept journals....you guys are getting me excited to read them!!
  2. What are your thoughts on pregnancy after BLA? I am aware of 1 person who had successful delivery after BLA and 1 who was pregnant, but don't know the outcome. I am wondering if these two were just lucky, or if it is very possible as long as adequate steroids are taken. If someone still has very significant osteoporosis and swelling before getting pregnant, could pregnancy compound those issues and make the pregnancy much more difficult or even dangerous since being pregnant puts a lot of weight on the mother (hard for the osteoporatic bones to support) and since a lot of people swell when pregnant, swelling could be even worse and unhealthy as well increasing the persons weight even more? Could toxemia be a higher possibility post BLA due to increased steroids? What other concerns would there be? Thanks!
  3. I second the question above. It seems the PET scan is the last possible tool to use in finding rest tissue. Would like to know how effective a PET scan is in finding rest tissue.
  4. I am excited too! Thanks for putting this together... My question is: After a BLA, if someone has Cushie symptoms come back even though they have lowered their Hydro (and no AI results), what could cause that? Is it possible if a dosage of Hydro is too low that symptoms like weight gain or swelling, central obesity could come back....maybe because the body could be thinking it is in reserve mode with in-adequate replacement and hold on to any food we eat or hold on to cortisol...?? Not sure if my question makes sense. 2nd: Does Cushings possibly cause a problem with a person's metabolic "set" point? If so, could that make it difficult to lose weight even if someone is cured? Thought of another one... After a BLA, how do you know if you are cured? My thinking leads to believe that if you get AI kind of easily with physical or emotional stress or activity and your symptoms are improving - you would be cured. But, if neither of those things are happening and your labs show your replacement doses are correct, does that mean you are not cured? If a person seems to be "cycling" after a BLA, what would cause that?
  5. Wow, thanks for finding this info Lydia. I actually asked a question here once regarding the relationship between UFC and impaired kidney function was. And, this answers it. I have had low GFR's too as well as high BUN/creatinine ratio and symptoms that I believe were kidney related. So, I am no surprised either and it confirms my suspicions. I think Dr. F. said in an interview that kidney problems would lower your UFC. But, I think he was talking people who were actually diagnosed with renal failure. Thanks!
  6. Thanks for sharing this insight. I may be in this boat with ya'll soon, so I am glad to hear this. I take my thyroid split into 3 doses - though I do forget. But, I think I could do this especially with a phone alarm. Good idea!
  7. Done. So, now we just wait for them to call us right?
  8. Finally listened to it tonight! Thanks for doing this for us!! It was a great interview, great job!
  9. Do thyroid meds lower cortisol levels? If so, could this make it difficult for one to show high cortisol in their tests, even if that person has Cushings? Can high cortisol levels in the body (ie. from Cushings) mask hyperthyroid symptoms? If so, in what ways? Can being properly medicated on thyroid meds mask the physical signs of Cushings?
  10. Regarding Hypothyroidism: Does taking iron supplements, and/or topical oestrogel or bio-identical oral HRT, lower the available thyroid hormone meds/utilization in the body (ie. binding to TBG)? Is it possible for hypothyroid symptoms to come back in this scenario if the patient was previously feeling euthyroid with medication? If so, does this show up as lower levels of Free T3 and Free T4 in the blood or does it only show up physiologically in the patient? If this change only shows up as in the patient symptoms and not in blood tests, then what is the treatment protocol? If iron or calcium is taken at a different time than thyroid meds, does that eliminate the potential for lowered utilization of thyroid meds and interactions, even at high doses of these supplements? Can bio-identical progesterone pills or topical progesterone and/or testosterone cream cause the same effects? What other supplements (like calcium?) or other meds, if any, have the potential to bind with thyroid meds and cause less to be utilized in the body? Thanks!
  11. What is the role of Cortisol Binding Globulin in testing and diagnosis of Cushing's Disease? What does a low or low-normal CBG mean and what does a high or high-normal CBG mean in relation to test results of blood cortisol, urine tests (UFC's an d 17-OHC), and saliva.
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