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.

Thursday, October 8, 2015

Rant: Morality (or lack of), ethics (or lack of) and diagnosis (or lack of) in adrenal insufficiency

Is it ethical for a doctor to make a patient wait until 90% of an organ (in this case the adrenals) has failed?  Is there any other organ that we are forced to wait to start treatment?  Picture this:  You dad's had a heart attack and only has 50% function of his heart remaining.  Does the doctor tell your dad to go to a therapist and talk things out because his "depression" is making him tired not the 50% of function he's lost?  Does the doctor tell your dad to come back when he's only got 10% function, intractable diarrhea and huge blood sugar issues or ends up in the emergency room because he can't take care of his day to day life.  Somehow, I doubt it.

Too many times in the last month I've seen people who have adrenal insufficiency but his or her doctor will not be responsible for diagnosing that person with adrenal insufficiency.  It's pathetic, sad and a failure of our medical system.  In my opinion, it's immoral and unethical for a doctor to declare that a patient does not have a disease in which the doctor has no expertise nor comprehension.  Once again, it becomes the undiagnosed patient's fault for showing up at the doctor's office when the doctor can't take the time to understand the disease that's the best fit for the symptoms, history and test results.

These people all had failing ACTH stimulation tests but not quite failed enough for the doctor's barbaric interpretation.  Each and every one of the people I'm talking about basically were denied diagnosis because the doctor was only capable of seeing that one number on the test didn't have an "L" next to it.  They completely ignored the diagnostic symptoms like orthostatic blood pressure, low sodium, high potassium, hypoglycemia, hypercalcemia and hyperpigmentation.  These are generally symptoms that a patient can't fake.  Nausea, vomiting, diarrhea, aching body and joints, debilitating fatigue and lack of immunity to illness are the others that we are assuming to be faking.

I will admit, I have met someone with adrenal insufficiency and Munchhausen's.  Maybe she didn't have AI at all?  She definitely had Munchhausen's.  I knew one woman who didn't actually have AI, was on hydrocortisone for years and then was tapered off drugs for adrenal insufficiency and lives a good life.  The point is that mistakes in diagnosis of adrenal insufficiency are few and far between.

By the time a person gets to a doctor thinking he or she has AI, the person has been told he or, usually she, is depressed, tanning, anorexic, has IBS, has chronic fatigue, has fibromyalgia and/or using too many laxatives when none of this is actually true.  He or she has been through five to ten medical professionals who do not believe that what the patient is showing and telling and presenting to the doctor is true.  As a patient who wants help it's degrading to be told time and time again that we are lying, that the problem is in our head or to be given a junk diagnosis.  We go to doctor after doctor because we want to life a life that means something.  We want to live, period.

I believe a doctor has a moral obligation to believe his or her patient.  I believe a doctor should look at test results with a more critical eye.  I believe a doctor should look further into diseases that fit the problems presented rather than saying, "Let's get you some mental therapy and eat more salt to get your blood pressure up.  Go exercise."  "Have you tried Prozac?"

Is it ethical for a doctor to interpret a lab test for which he had done no research and has no expertise?  How can a doctor look at a test that he doesn't understand and tell you what the results mean?  Blindly reading a lab report that's not marked with "L" in the correct column is something a grade school child can do.  Yet a doctor can look at a person with dark circles under her eyes, weight loss, inability to spend time out of bed when not working and tell her that the most obvious solution to the problem is not valid because the LAB didn't put an "L" in the column.  

Is it ethical for a doctor to ignore the physical symptoms?

Is it ethical for a doctor to allow the lab to do the tests wrong and interpret the results based on improperly executed tests?

Is it ethical to pin a junk diagnosis on someone because the person is not presenting with something the doctor has seen before?

Is it ethical for a doctor to not know that ACTH, DHEA-S, Sodium/Potassium, orthostatic blood pressure, renin and antiadrenal antibodies are integral in determining the full picture and degree of adrenal insufficiency?

Doctors who don't know about adrenals should find their patients doctors who do.  It seems like the right thing to do to be sure that a person is properly evaluated.  It seems like the moral and ethical thing to do.  Death is permanent and death is a side effect of undiagnosed adrenal insufficiency.

No comments: