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, August 24, 2015

Rant: Patience is NOT a virtue when it comes to health care and medical records, it's dumb

Being patient when it comes to your health care is neither a virtue nor is it smart.  For some reason, doctors think they are really cool to withhold your medical testing from you until you show up at their office to review it.  So not cool.

As someone with little to no medical education, how are you to learn and understand what all of your test results mean during the ten minutes you spend with the doctor?  Often, the doctor will pronounce the results as normal if they are not flagged.  Any educated consumer knows lab normal is not necessarily normal.

PUBLIC SERVICE ANNOUNCEMENT:  Below, I'm using lab work as an example of when patience is not a virtue.  You are entitled to copies of MRIs, Xrays, CT scans, radiology reports, etc. Get them.  Get them all.  You never know when you might need them.  If you've had any of these things done, start calling around for copies today.  I'm not exaggerating.  Never give away copies of your results or scans.  Have the office make copies if they want them.

BACK TO THE POINT:  A random cortisol in someone who is undiagnosed is an excellent example of how patience is dumb.  Ranges are often given as 2-20.  You get a random 8 am cortisol of 6 and you're normal.  WRONG!  2 is a good midnight normal cortisol.  22 is a good 8 am cortisol.  According to Arlt and Allilio in Adrenal Insufficiency, an 8 am cortisol of 6 is diagnostic of adrenal insufficiency in and of itself.

You go into the doctor's office and the doctor has very little adrenal insufficiency experience (which is usually the case).  The doctor doesn't know that the lab range for cortisol encompasses midnight as well as morning cortisol.  He tells you that your 8 am cortisol of 6 is "normal" and there is nothing wrong with you.

If you had been impatient, you would have had your test results ahead of time and done some research.  You would have known that an 8 am cortisol of 6 was decidedly not normal and perhaps even close to lethal.  You or your advocate would have whipped out the Arlt and Allilo article and asked about their interpretation vs the doctors.  At that point, the doctor would do one of three things:

1) fire you because you caught him in a position where he didn't feel like the smartest person in the room.
2) passed you on to someone who knew more because he was clearly out of his comfort zone
3) discussed the paper and lab work and pursued the testing recommended in the document

No matter what, having your labs ahead of time would be a much better outcome than if you had been patient.  Being a patient patient usually makes you feel like a dumb hypochondriac.  Despite the symptoms you are going in to have researched, you fall within the "normal" ranges.  You get stuck with the diagnosis of depression, fibromyalgia, IBS or chronic fatigue.  All of these are junk diagnoses.  There is little to no treatment for any of them.  You will get no relief.

What can you do differently?  Within three days of your blood draw, call the lab, check the portal, call the nurse.  In Idaho, if you ask the lab to give you your results, they are legally bound to do so.  In Florida, patients are too stupid to get their results until the doctor says it's OK or five days after testing. Most other states have laws that fall somewhere in between.  You need to research your state's laws and know them.

If you want to get well, you have to aggressively go after your lab work BEFORE you go into the office for your follow up. I often call the nurses station and say, "I'm calling to get copies of my most recent blood work before I forget!  You know how that is!"  They usually make copies and put them at the front desk.  Easy peasy.

So you've got copies of your labs, now what? Hole punch them and put them in a binder.

Look at them.  Is anything obviously flagged?  Is anything very high or very low in the normal range?  If the answer is "Yes" get ye to google.  I actually use www.labtestsonline.org, medscape.com, labcorp.com or questdiagnostics.com.  Only use reputable sources to understand the labs.

Go to forums and ask others if they have had the same results as you.  If they have good back up information, get copies or links to it.

You can understand your test results, it will just take time.  If you don't get your results until you are five minutes into your appointment, how will you have time to fully comprehend your results and what they mean to your health.

As far as lab work goes, patience is a dumb thing to have.  It's not a virtue.  Being impatient is a virtue and it will help you get well or optimize faster.  Being patient will get you a junk diagnosis that can make you feel awful and could, in the case of undiagnosed adrenal insufficiency, kill you.
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