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twinkie

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Everything posted by twinkie

  1. Hello and welcome! You are in a good place for support, information and understanding. Your symptoms do sound very suspicious for cushings. Are you still on the pill? An endo with a good understanding of cushings will not allow you to test for it until you've been off bcp for 4 to 6 weeks as the hormones can skew the results. So you'll have to get off the bcp before testing if you want accurate results. Otherwise, BDen 13 had some good advice to offer above. It can be very tricky finding a competant cushings specialist, particularly if you are cyclical. If you are are florid, however, an 8AM serum cortisol could prove useful. Midnight saliva tests, midnight serum cortisol tests and 24 hour urinary free cortisol tests are what you need---and tons of them. Please get copies of all results and read all you can here. love, melly
  2. Hi Ella and welcome! You are in a good place for support, information and understanding. Your symptoms sound very suspicious for cushings. A person can live quite a long time with cyclical cushings---many members come here suspecting they've had the disease for decades before getting proper treatment. I'm so sorry you are suffering so much while having to deal with your mom's cancer. That's a heavy burden for anybody. Do you have insurance? Can you see an endocronologist? Or you could even ask your pcp to run some 24 hour urinary free cortisols with 17-hydroxycorticosteroids. (This is helpful if you are cyclical). Some midnight saliva tests as well as midnight cortisol serums are also very helpful. When you are cyclical, your cortisol is highest when it should be lowest and lowest when it should be highest. This is called loss or lack of diurnal rythym. I wish you all the best! Please keep us posted. love, melly
  3. Glad you could join us, Cindy! Generally, if a person has cyclical cushings, then their morning cortisol will be low when it should be high, and high around midnight when it should be low. If I were you, I would ask your doctor for some midnight serums just to make sure your diurnal rythym isn't flipped. (Low cortisol when it should be high and vice versa). If you display symptoms of cushings then I would insist on being tested for that before allowing your doctor to put you on steroids for addisons. Best of luck to you and keep us posted! love, melly
  4. Hello Cindy and welcome! You are in a good place for support, information and understanding. When you say your cortisol came back abnormal, do you mean it was high or low? Can you remember what time of day the blood was drawn? It's possible for a person to have what's called cyclical cushings where cortisol is sometimes high and sometimes normal or even low. However, the normal labs don't cancel out the high ones...most endos don't get this. If you feel you have this disease then I would suggest you stick around here and read all you can, ask any questions you might have. It takes tons and tons of tests to either rule cushings in or out. Can you get copies of all your results? This is important. When you had your previous mri was it focused on the pituitary or just the brain? Pit. tumors are generally itty-bitty and can be missed easily. I'm not aquainted with cymbalta, but would be curious to see if one of the possible side-affects is lowered cortisol or acth. Your reaction certainly seems consistent with an adrenal crisis. Best of luck to you and please keep us posted! love, melly
  5. Best of luck with surgery Friday! You are both in my prayers.

    love,

    melly

  6. Howdy Sharon! Thanks so much again for the visit in Houston!

    love,

    melly

  7. Hey Anne! I've never left a comment before so here I am. I'll give you a call manana.

  8. Thanks Mary and Jayne! It looks like you put a lot of work into that. I'm curious also to see if you had many people take an interest. Every bit helps!love,melly in nv ETA: Honestly, I wonder what my life would have been like if I had seen a display like that 10 years ago. Way to go Jayne!
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