Jump to content


Long-time Board Member
  • Posts

  • Joined

  • Last visited

Everything posted by 3v3

  1. Fascinating information, MCF, thank you for sharing. Although I had my adrenal tumor removed almost 3 years ago, I still have a lot of intestinal issues, allergies, skin issues, fibromyalgia symptoms, and hypothyroid with Hashi's. I am definitely looking into this. I confess I love tomatoes, fruits, veggies, and the "Mediterranean" diet (don't do refined carbs, though, or sweets) and try to eat mostly vegan. Going to have to try this....
  2. Wow. What is an "older" patient? I was 43 when my tumor was finally discovered. I had symptoms for 8 years before I was diagnosed and the adrenal tumor was removed. My doctors all seem to think that I am fine now that the tumor is gone--even though I feel sick and tired all the time. It's hard enough to get doctors to pay attention to Cushing's--I hope some attention will be focused on "post-Cushing's" syndrome. I'm starting to think they believe it is all in my head.
  3. Thinking about this and reading the other comments, one could certainly see this move as part of the "fat shaming" mentality in this country and how the health care industry exploits that in order to avoid treating the real disease. We do the same thing with people who drink and smoke. I have emphysema and have never smoked, but I almost never tell anyone about my emphysema because of the "shame" factor. In my mind, people will assume that I smoke(d) and therefore deserve it. Interesting topic, btw. Are we biased towards skepticism because of our experiences? I know that even now, cured of Cushing's, I do not work out as much as I would like to because of the cost. But if gym memberships are ever covered by insurance, shouldn't it be for everyone, obese or not? I still think my insurance company should pay for some plastic surgery on me. I recovered from Cushing's but my body is changed as a result of the massive weight gain and loss.
  4. In the US, there are very few diseases that will automatically qualify a person for disability. To prove any disease or disorder is a disability, one must show that it prevents the sufferer from any kind of substantial gainful activity, and that it is expected to last more than a year or end in death. It is extremely difficult to prove that any condition is severe enough to meet the requirements. Obesity is a disease, but it is considered curable/treatable, and many obese people have jobs. To give another example, alcoholism is a disease but is not a disability for purposes of insurance or social security payments. The difference this will make is that insurance companies will be encouraged to cover treatments for obesity. For example, reimbursing membership in weight loss programs, or even gym memberships and exercise classes, or coverage for prescription drugs that treat obesity. Currently, weight loss treatments like the lap band require a co-morbid disorder (diabetes, for example) in order to be covered by most insurance plans. I don't know that there is an agenda by the AMA, although I would be interested in hearing everyone's ideas about what the agenda might be. I see this is a good thing for consumers who may have more options under their insurance plans. If the cause of one's obesity is Cushing's, it makes no difference because Cushing's is already a disease (and not a disability according to SSA) and "obesity treatments" are not going to help someone with Cushing's, either, so for us on this forum, it is probably not going to affect us either way. One fear I have, however, is that people like me, who did not seem to have "classic Cushing's" may have been pushed into unnecessary and invasive procedures. I always knew that my weight was NOT due to overeating or lack of exercise, but I was not able to convince my doctor's of that. Personally, I tend to think that obesity is assumed to be the cause of disease, rather than the symptom, far too often.
  5. Well, it seems like you did not suppress...go to the ER and tell them you have abdominal pain and symptoms of appendicitis. That's what I did (although it was true, in my case). The CT scan revealed that I did not have appendicitis--but I did have a mass on my adrenal. Wish I had done that years ago, because it was not the first time I had random flank pain.
  6. I don't recall my DST next day labs actually measuring how much dex was left; just that my cortisol was still the same, meaning I did not suppress. I need to find those papers and see what it says. Have you had an MRI or CT scan of adrenals?
  7. Absolutely possible!! I had very regular periods--heavy, and definitely ovulation. There is no one symptom that all Cushie's have...that's one reason it is so insidious.
  8. I did not have skinny arms, nor especially skinny legs, and I also did not have the striae marks---some people with Cushing's don't even gain a lot of weight. I think you have to find a good, compassionate doctor that is willing to do everything. I actually started to get a little better when seeing an acupuncturist--they can do cortisol points. But shortly after that, my tumor was discovered (by accident) and that was how I was finally dx'd. I really was ready to try anything and everything. I think you have to keep on, change docs, whatever....it is a frustrating journey.
  9. Cortisol numbers should be at their highest at 8 am and lowest around midnight. One problem with the am serum cortisol is that it may be normal for that time of the day, but not dropping as it should. For example, I had an adrenal tumor that was pumping cortisol all the time, whether my body needed it or not. But my am cortisol and 24 hour UFC were normal. To test for an adrenal source, your endocrinologist will probably do a dexamethasone suppression test. If you suppress, it is probably not an adrenal tumor, but it may still be Cushing's. In that case, there are different tests you will be given--for some people the dx is very straightforward and for others, it can be a long process. Do take it seriously, however, until you are satisfied that you have answered the question. I would see an endocrinologist.
  10. Cortisol-producing tumors on the adrenal gland are benign, but they are functional. My primary care wanted to watch & wait on my adrenal tumor, but my endo overruled and had it removed. I would still be suffering from Cushing's if the tumor had not been removed. A dexamethasone suppression test will indicate whether the tumor is producing cortisol on its own schedule. In which case, it needs to come out. Cortisol is very damaging to the organs of the body, so the watch & wait mentality is very risky in my opinion.
  11. 18 weeks post-op tomorrow.Feeling pretty good but no tapering for me yet, kinda bummed about that. But, I am officially 20 lbs. lighter than before surgery. And I do feel a lot better. Just gotta remember that it is baby steps.

  12. 7.5 weeks post op. I lost 9 lbs the first six and have gained 7 of it back in the last week. Want to scream in frustration!

  13. Is the controversy here about diagnosis? Or is it about monitoring? Is the test reliable relative to itself---that is, does it give consistent readings? It seems that if one is using it to monitor fluctuations, and the meter/test method is accurate in reporting changes relative to a baseline reading, then it would be useful. It is like an inaccurate bathroom scale. Mine is always 2 lbs. lower than the one at the doctor's office, but even if it were 20 lbs. off every time, it would not matter, because it still tells me whether I am up or down and by how much, which is what I am looking for... A meter like this would be useful to people who are tapering, and if readings changed from what was expected, could be verified at the doctor's office/lab. Diagnosis is another issue altogether....
  14. Eve, Sugar Land TX. I am just diagnosed (today in fact!) but have struggled with symptoms for about 8 years. Awaiting surgery to remove the right adrenal & its nasty little tumor---and hopefully that will be the first step back to the old me!
  • Create New...