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, June 8, 2015

Rant: If your lab test results are not accurate, you're screwed. Take responsibility for yourself.

Sadly, your doctor has no clue about the protocols that need to be followed for drawing the blood tests he orders.  He might know what labs to order but what time of day, fasting vs. non fasting, diet, medications that are okay to take before or not and so on.  He definitely doesn't know what tube needs to be used, if the blood needs to be iced and/or centrifuged.  He should not know those things, they are beyond his scope.

Often, your doctor has no clue which labs to order for adrenal insufficiency.  That is another story entirely and I will probably go into depth about it in a book or upcoming blog post.

The phlebotomists, in my experience, run tests the way they have always done them.  Sometimes, they accurately record whether I was fasting or not.  I am not cutting on phlebotomists.    My guess is that the pay is not fabulous and the clients are not always the most pleasant.  It's always cold, crowded and rushed in the labs.  The working conditions are not ideal.  Add to that, a few of the tests we as Addisonian's require, are uncommon.  The phlebotomist probably assumes that the doctor has given the patient direction about time of day, medications and  fasting.  A phlebotomist is not a babysitter, a doctor is not a babysitter.  You need to be responsible for you.

Being responsible for yourself when it comes to health care or getting blood drawn is not something you should assume others will do for you.  It is something you need to do for you.  The United States was ranked 37th in medical care by the WHO in 2014.  HELLO!  Pay attention to as many aspects of your health care as possible (if you are able).  If you are unable to pay attention to protocols and labs, recruit someone from your circle of friend or family who can or hire me to do it.  Start with providing your doctor with accurate symptom information, next get your tests done as accurately as possible.

Think about this.  If the tests you have done are inaccurate, the interpretation will be inaccurate and your diagnosis or medications that the tests are based on will be inaccurate.  After all of the struggles you have gone through to get a doctor to listen to you and run these tests, do you need inaccurate and expensive as well as potentially useless tests done?    The answer is simple.  The answer is, "No!"  Inaccurate testing can be dangerous or even lethal if medications are administered or adjusted based on inaccurate information!

You do not have to be "bold" or "confrontational" (thank you for thinking I am "bold" in the lab.  Usually, I play the dumb girl who cries and hands a paper to the phlebotomist) to have your tests run as accurately as possible.  You or your advocate will need to know the following information:

  • What tests are being run? Get the list from your doctor.
  • What is your doctor attempting to accomplish with the information he receives from the tests he is running?  Is it a baseline test?  Being done out of curiosity?  To adjust current medications?
  • If you want the BEST interpretation possible from your test results, ask how the results will be interpreted BEFORE the test are run.  For example, what is a normal result for an upright renin draw.  Correct answer, middle to upper third of range with a sodium of 139-141.  See Arlt and Allilo's Adrenal Insufficiency published in the Lancet in 2004.  Page 1889.
  • What lab will be running the results?  Call the lab prior to the test to see where they send them or what protocols they follow.
  • Go to the lab's website or use one of these to get a good idea of what protocol will be used.
  • Print off each test protocol.
  • Read it.
  • If something stands out, highlight it.
    • Let's take renin for example
    • Seriously, look at this one.  It's got a lot of stipulations.  They screw it up and it's going to be WRONG and then your doctor will put you on more or less Florinef than you need to be on.  
    • If the renin is not paired with sodium and is done wrong, there's yet another opportunity for misinterpretation of the results by your doctor that could actually kill you.
      • If your renin shows up too high, your doctor will put you on too much Florinef causing you to retain too much sodium, have too little potassium and your blood pressure will sky rocket.  Next, you will be put on unnecessary potassium supplements that will sky rocket your potassium and give you an upset stomach.  High potassium can give you a heart attack that kills you.
      • If your renin shows up too low, your doctor will cut your florinef.  You will be unable to retain sodium properly, your potassium will sky rocket and you could have a heart attack.  You will be orthostatic (dizzy when you stand up).  You will be fatigued from low sodium.  Low sodium over a long period of time causes osteoporosis.
  • Go to the lab the day/morning of the test having fasted if required, be there at the right time (some tests need to be run at certain times of day for proper interpretation-free T4, for example).
  • Bring your protocol sheet from the lab's website.
  • You can very nicely say that you know X test is somewhat uncommon and you've brought the protocol in case she (the phlebotomist) needs it.
  • Observe whether the right tube was used, if the blood was iced or centrifuged.
  • Refuse the test if the phlebotomist refuses to use the tube that the lab specifies.  You are a customer and you are paying for it.  
Starting with the right protocol for your blood tests is the starting point for getting the correct diagnosis as well as correct interpretation of results for adjusting medications.

Tests that need special protocols followed to give accurate results:
  • ACTH
  • Renin
  • Sodium
  • Ionized Calcium
  • free T3 and free T4
  • ADH 

You might think that me suggesting asking the lab to follow proper protocol is pushy and not right.  If you think this, you are destined to always feel that there is "nothing wrong" or you "don't deserve to be treated properly".  Stop being a martyr.  Believe that you deserve to feel well and be believed by your doctor.  Your symptoms are real.  If they weren't, you wouldn't humiliate yourself by going to the doctor and sharing your most intimate details of your bodily functions. You deserve good health care.  Go get it!

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