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    • MaryO

      Boards Closing?   04/16/2018

      We've had some version of these boards for 18 years and there have always been other people posting than just me.   I am seriously considering taking them down if no one else is interested.   If you want to see these boards remain, please post something or send me a PM.   Thanks!  

Shaw

ChattyCushie
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Shaw last won the day on February 16

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35 Great Answers

About Shaw

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  1. alcohol

    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.
  2. alcohol

    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!
  3. alcohol

    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!
  4. alcohol

    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.
  5. alcohol

    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.
  6. alcohol

    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.
  7. Normal Random Cortisol

    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.
  8. Hi there ..Not sure if I wrote you .I am fairly new here and dont quite know where to go from here .. I am looking to talk to someone with cushings in my area .. I am 30 min fom ottawa .. I am sure you replied to one of my posts ..please try and contact me .. I am dying from this stupid cushings I am sure that is what I have .

    1. Show previous comments  5 more
    2. lise

      lise

      Thank you Shaw for the encouragement . I cant wait ..Feeling pretty down these days ... Thanks again .

    3. lise

      lise

      Hi Shaw .. I got it finaly diagnosed with cushings sydrom .. Cant wait for the surgery .. 

    4. Shaw

      Shaw

      That's fantastic news! Life without Cushing's is so much more fun, and calm. Hopefully the wait isn't too long. I had surgery within 3 months of getting my diagnosis so it was too bad. I was put on ketoconazole (an anti-fungal medication that lowers cortisol levels) for the 3 months before surgery so that lowered my cortisol levels to closer to normal and I started seeing improvements then. I'm really really excited for you!

  9. 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.
  10. Is Cushings worth looking into?

    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.
  11. Is Cushings worth looking into?

    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.
  12. How to search the boards?

    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.
  13. 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!
  14. I believe it's been posted about quite a bit. Try searching the forums using: Korlym (it's the name of the drug).
  15. Greetings to a fellow Canadian! Where in Can. are you from?

    Welcome to the boards!

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