Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Shaw

  1. Shaw


    Unfortunately a 4:30 pm cortisol test can't be used to diagnose or exclude Cushing's. The only useful blood measurement for cortisol would be a midnight one. You really need to do a 24 hour urinary cortisol test.
  2. Shaw

    Please help!!

    That's fantastic! Getting a doctor who will thoroughly test you is one of the hardest parts of the disease. Nobody wants to be sick of have Cushing's but with a lot of us it's gets to a stage where you just know in your gut what's going on and then you have to fight with doctors to get them to listen. I hope testing is quick and the proof comes back right away so you can get back to feeling like a human again.
  3. Shaw

    Feeling frustrated

    If you search the boards and read previous posts you'll find that almost everyone here has dealt with varying lab levels. It's one of the reasons Cushing's is so difficult to diagnose.
  4. Shaw

    Please help!!

    I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.
  5. Shaw

    Please help!!

    It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cushings-patients/ and read old postings from these boards.
  6. I never had a hump but still had Cushing's. Unfortunately your symptoms (and most Cushing's symptoms) can also be caused by other medical conditions so it's important to test everything and if you're concerned about Cushing's I would do some cortisol testing if you haven't already. Have you done any 24 hour urinary free cortisol tests? or had your ACTH checked?
  7. Shaw

    PTSD and Cushings

    Oh boy me too. I was paranoid for the first few years and anxious because I always thought Cushing's was coming back. Luckily I had family and a doctor who understood where I was coming from so I could test anytime I wanted to. It took a long time for me to remember things like women have PMS at times and that has nothing to do with Cushing's. I will say I only worried when I wasn't feeling great, when I feel good it never crosses my mind and these days I'm much better at not worrying or feeling anxiety about it.
  8. Shaw


    I'm in Northern Ontario and damn it's cold here. How nice of you to throw a dinner party with such great tasting food. Real food is so much more delicious than anything that comes from a package.
  9. Shaw


    I used to eat cauliflower toast, it's fantastic! Do people actually enjoy cooked carrots? Yuck.. raw all the way! Where in Canada are you? I'm Canadian!
  10. Shaw


    I absolutely agree with you that diet can help tremendously, especially a low starch one when dealing with Cushing's. I was very strict about my diet and thankfully I didn't have a lot of weight to lose after surgery. My pituitary tumour actually hemorrhaged before surgery so I knew before having the surgery that I wouldn't get a cure from it and would need a BLA so I tweaked my diet a bit more which wasn't difficult, I was in the midst of training for marathons shorty before I was diagnosed and already followed a really healthy diet. I absolutely believe that having good nutrition before and during Cushing's helped my body recover after surgery. I, like many people with Cushing's, are overly sensitive to the idea that a proper diet will fix us as so many doctors initially just say go eat properly and lose weight so I'm glad you clarified that the diet that worked for you is not a cure. I think that anything that can help even one person with Cushing's feel better is worth talking about and trying. There's actually a diet that Dr. F recommends to people or he used to that might be similar to what worked for you. He calls it 3V3NSSF. Here's the link http://www.goodhormonehealth.com/Dr. F.3V3NSSF Diet.pdf Take care!
  11. Shaw


    I had a unsuccessful pituitary surgery then a BLA years ago. I think you might have mixed me up with someone else. I don't make dolls, it's a success if I can sew a button back on. I love that you're using nutrition to help you but that's not a cure by any means for someone who is actively producing too much cortisol from a pituitary, adrenal or ectopic tumour. Yes you can mitigate some of the symptoms (sometimes) with diet but it's not a cure and pushing that belief into a support group for a disease that many have tried to heal through diet can be damaging even though it's with best intentions so I just want to make sure others reading this know that diet alone is not a cure for pituitary, adrenal or ectopic Cushing's. It does however, play a huge role in Food-Dependent Cushing's Syndrome.
  12. Shaw


    I still have my gallbladder. The HPA axis is the hypothalamic–pituitary–adrenal axis. It can get a little complicated so you might just want to google it for a better understanding but basically the organs that make that up the HPA axis (hypothalamu, pituitary gland and adrenal glands) interact and provide feedback which regulate a lot of body processes such as immunity, mood, energy, emotions and most importantly stress response. For example, when someone gets stressed the hypothalmus produces corticotropin-releasing hormone (CRH) which then signals the pituitary gland to produce adrenocorticotropic hormone (ACTH) which then signals the adrenal glands to produce cortisol. Alcohol can trigger the HPA axis and over time, disrupt it which can cause higher cortisol levels. Most of the research out there is based on continuous consumption of alcohol over an extended period of time so you shouldn't t see high cortisol numbers (like Cushing's high) in someone drinking responsibly and abstaining from drinking during testing.
  13. Shaw


    I did, I had a very tolerance when I had Cushing's and I'm not at all a big drinker. I go years without alcohol. It's not too surprising considering how alcohol affects the HPA axis.
  14. Random cortisol is kind of a useless test to test for Cushing's and yes you can have a normal random cortisol result and still have Cushing's.
  15. Here's a section on doctors that people have found helpful http://cushings.invisionzone.com/forum/26-doctors-hospitals-insurance-nih-and-disability I found good endos by reading their reviews on rate my doctor. I didn't find a Cushing's expert where I'm from but found a great doc who was open minded and helped.
  16. The dried urine isn't really going to be helpful for looking into Cushing's. You'd be better off doing a 24 hour urinary cortisol if your doctor will order one.
  17. You said you did a urine test; was that a 24 hour urine test? What can happen with Cushing's is you have high cortisol levels at night but very low ones during the morning/day and if you do a 24 hour urine sometimes these almost cancel each other out and your result is a completely normal urine test.
  18. Top right hand corner there's a box that says "Search..." You can select where you want to go search (All Content, Topics, Members etc). I believe you have to register/create an account. before the search function is visible.
  19. Welcome to the boards! Sorry you have to be here but I hope you'll find answers to any questions you might have. There are a few of us who that still hang out just in case we can be of help and so much information in older posts that is still so relevant. Take care!
  20. I believe it's been posted about quite a bit. Try searching the forums using: Korlym (it's the name of the drug).
  21. My thoughts exactly! Saliva was useless for me during diagnosis but that's just me, I know of many others who owe their diagnosis to spit! I'm thrilled with this cortisol meter because I know it will help SOME people and it just might serve as a building block for a future blood cortisol meter. At least someone out there recognizing the need for immediate cortisol testing.
  22. Greetings to a fellow Canadian! Where in Can. are you from?

    Welcome to the boards!

  23. Not to sure how I feel about Dr. G now. He was the only one who could have spoken up for the women. In Ontario you are judged by your peers and it's their opinion that the Board heavily relies on in making their decision. To win, they would have needed another neurosurgeon that agreed with the patient, clearly Dr. G didn't. Unreal, it is more than obvious she shouldn't have been discharged. Poor family!
  • Create New...