Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Monday, July 27, 2015

How to get diagnosed with adrenal insufficiency

Here's a subject that haven't touched on in years.  I'm not going to look back on notes or old posts because my views have probably changed.

If you are here and reading this, you feel that your symptoms fit the profile of adrenal insufficiency.  From what I've seen, you're probably right but need to find an "adrenal specialist" who can give you the diagnostic tests and manage you.

Sadly, "adrenal specialists" don't exist.  Don't fool yourself thinking an endocrinologist will know all about adrenal insufficiency.  He won't.  Sorry to be a buzz kill.  I've had AI for nearly 15 years and have not come across many doctors to whom I'd entrust my management.  Why?  AI is so rare that doctors have very little practical experience managing someone with AI and far less experience establishing a diagnosis.  They have no clue interpreting the one test that is the "gold standard" and completely ignore other diagnostic blood work and clinical symptoms.  Where does that leave you?

Your job is to:

  • Compile ALL of the labs you can get your hands on.  ALL of it.  Yes, I mean ALL.
  • Compile
    • A personal health history with all of the body parts you've had removed, diseases you have, head injuries you've sustained, pregnancy complications
    • A family health history.  Did anyone die of unknown causes?  Family members with other autoimmune diseases?
    • A list of symptoms you have.  LADIES:  Do not mention depression or depression-like symptoms!  Women get pegged with depression because it's an "easy fix".  You'll be given Lexapro and told to go on your way.  You will feel worse on antidepressants and could die of a crisis in the meantime.  Keep the list objective. 
    • Make a list of your meds, doses and times.  Include supplements, antidepressants, birth control and hormone replacement.  
  • Print out this information from medscape:  Addison's Disease  Print all of it.  
  • Request the following tests be done so a clear picture of adrenal function is available to you and your doctor:
    • ACTH stim test with a baseline ACTH* and cortisol
      • If I had to be diagnosed all over again, I'd ask how the test will be interpreted BEFORE the test is done and before the results are in.  You may find that the doctor has no clue about how to interpret the results.  
      • Will the doctor take the other adrenal hormones into account when interpreting?
    • Renin*
    • CMP
    • Anti-Adrenal Antibodies (2 types)
    • Anti-Thyroid Antibodies (2 types)
    • TSH
    • Free T4
    • DHEA-S 
    • Progesterone
    • Testosterone, Free
    • *these tests must have proper protocol followed by the lab or they are invalid.  The lab doesn't usually do them right.  Print out the protocol and be sure they follow it.
    • Find out how and when you can get copies of the results so you can study them BEFORE your appointment with your doctor.  Why would you want to go in to your appointment blindly and without knowledge????  How do you benefit from that?
  • Make copies of all of this for your doctor.  Make sure each bulleted point above is printed on a different paper.
That's it in a nutshell.  I could go on and on but I think this is a good yet overwhelming start for someone who is undiagnosed.  A always, there's a free forum and paid advocacy if you need diagnosis assistance.

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