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Shaw last won the day on June 13 2020

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  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. lise

    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 .

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    2. lise


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

    3. lise


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

    4. 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!

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