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Two major test results.

Discussion in 'Gastrointestinal and Urinary' started by ratdog, Sep 24, 2012.

  1. Ema

    Ema Senior Member

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    Were you taking any steroids when the stim test was done? If not, how long had you been off them?

    Didn't Dusty send you documentation on the interpretation of the ACTH stim test results you had done previously? If not, ask her as she has quite a few resources for you to print and take to the doctor.

    I'm not sure what good more testing will do. You've failed nicely multiple times. Given that the testing misses quite a few people with AI, this is really no small feat. Even the Merck manual which is very conservative states:

    "Patients with Addison's disease have low or low-normal values that do not rise above 20 μg/dL at 30 min."

    This is for frank Addison's and does not even come close to optimal or ideal values for what should happen in a healthy person as described on Wikipedia. This is just a minimum standard for hopefully not dying. And you are failing! 18.7 does not mean you are close to "fine". People with a minimum "pass" (low adrenal reserve) would still feel horrible and nonfunctional and you are below that standard...

    Now you just need to find a doctor that understands how to interpret the test and can help you get on top of treatment. Unfortunately most endocrinologists are not well versed in adrenal issues because they are so much less common than diabetes or thyroid issues. The telephone may be your best friend. Ask to speak to the doctor's nurse as they can often help more than the standard receptionist.

    I don't know if you have ME/CFS on top of AI. Certainly it is possible. But AI is completely treatable in ways that ME/CFS is not. I would not trust any doctor that wanted to give you an ME/CFS diagnosis while you still have untreated AI.

    It's also possible that untreated AI has impacted your immune system and opened you up to opportunistic infections that may need to be treated before you start feeling significantly better on steroid replacement. It also possible that you felt worse on HC because it brought low aldosterone levels to the forefront. There are a lot of variables here and that is why you need to find a doctor that can help you through it.

    I understand all too well the difficulties. I went through about 6 doctors before finding one that was experienced and knowledgeable. Unfortunately doctors are not trained to tell you that they don't know or understand your condition and most will just let you swing in the wind before they admit their own deficiencies. You MUST be your own best advocate.

    Ema
  2. ratdog

    ratdog

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    Ema, I need to send you a private message and I do not see that option. I have something I need to tell you and not post for the world to see. How can I do that?
  3. Ema

    Ema Senior Member

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    Just click on my username under my cat picture and you will see the option to "Start a Conversation".

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