Rant: Invalidation vs Validation by a doctor

This is a rant about the dichotomy between being validated and being invalidated and how it affects the patient.  I have two completely opposite experiences in which I was a participant although not the person to whom the experiences happened.  It's an interesting place to be, on the outside looking in yet totally invested in each person's outcome.  I feel good, my brain is working.  I am lucky.  It makes the vicarious experience of these situations much more painful and joyful than when I was the one experiencing it myself.  When I was invalidated, it hurt but I was so tired that I didn't care.  When I was validated, I cared but was too tired to feel much beyond sweet relief.

I will start with invalidation.   I am advocating for someone, have access his to medical records and attending doctor's appointments with him.  The simple fact that he has asked for help and will finally see a medical professional was a huge hurdle that we overcame.  

"Yes", I told him, "the slow decline in your quality of life paired with abnormal test results IS A VALID CONCERN.  The unilaterally swollen neck, hip pain so bad that you can't get in and out of the car and other physical symptoms cannot be faked, they are not in your head."

Finally, I found someone in the medical field that I was comfortable with and he was willing to see her.  Victory #1!  She was awesome.  She listened, she heard, she asked questions of him and then asked my opinion.  She ordered a lot of lab work, she asked me if I wanted more things tested.  He ended up having a very comprehensive blood draw that turned up a couple of rheumatological abnormalities.  Sigh of relief.  Yes, something really was clinically wrong.  Both of us felt very satisfied with the visit to the medical professional.  We felt relieved.  We were going to get answers!

We went to the specialist who promptly fixated on the patient's light sleep, hip pain and possibility of depression (Damn, who is sick, hiding it for years and doesn't feel down?!).  He then very unnecessarily gave us the name of a psychiatrist.  INVALIDATION #1 (IT'S ALL IN YOUR HEAD). He ordered more blood tests.  He even mentioned Lyme.  At that point, I whipped out the Igenex.com lab form.  Igenex performs very thorough Lyme testing.  All he had to do was sign it.  He didn't have to interpret it or have any liability.  He refused, instead he chose to run a Lyme test that was for an acute infection (has occurred in the last 4-6 weeks) and one that has a high percentage of false negatives.  INVALIDATION #2 (YOU DON'T KNOW ANYTHING AND I REFUSE TO BELIEVE THAT YOU MIGHT ABOUT ONE THING)

The blood tests turned up yet more abnormal rheumatological results.  Granted, the results were not an emergency but the sub-receptionist told the patient to keep his appointment for a month and a half from the date he called, February 15th!  INVALIDATION #3 (YOU DON'T FEEL AS BAD AS YOU SAY YOU DO, YOU CAN WAIT AND WORRY ABOUT THE SIGNIFICANCE OF THE RESULTS AND FEEL SUPER DUPER CRAPPY FOR THE NEXT SEVEN WEEKS).  We finally spoke to the main receptionist who was kind and caring.  She was validating and thoughtful.  She was helpful throughout.  Basically, she kindly said the doctor didn't think the patient's numbers warranted concern despite the severity of his symptoms.  It didn't appear that the doctor was at all concerned about the painful to confess symptoms, abnormal blood results and increasingly debilitating fatigue.  No referrals (except a psychiatrist, I don't know how a psychiatrist could help with abnormal blood results!?), no suggestions, no nothing except the very vague and disturbing "monitor for future"  What the fuck does that mean?  Nothing if you're not the doctor.  INVALIDATION #4 (YOU ARE SO UNIMPORTANT THAT I WANT YOU TO KNOW YOUR RESULTS WERE ABNORMAL AND THEY MIGHT INDICATE SOMETHING BUT MAYBE, JUST MAYBE, I'LL TELL YOU IN THE FUTURE BUT YOU HAVE TO GUESS WHAT I MEAN BY "MONITOR FOR FUTURE" AND DO WHAT NEEDS TO BE DONE BUT I'M NOT GIVING YOU ANY CLUES!  HA!  HAVE FUN SUCKA!"  

OVERALL EXPERIENCE FROM BEING INVALIDATED OVER AND OVER:  COMPLETELY DEMORALIZING.   So demoralizing, in fact, that the patient feels like avoiding doctors and the medical community all together.  He'd rather live with the increasingly debilitating physical and mental symptoms by further modifying his lifestyle to accommodate the limitations that have become larger and larger over the years than go to yet another doctor who will basically tell him he's crazy (I'd say the patient is magical since he can fabricate test results that are backed by symptoms!).  Even as an outsider to this process, I was invalidated and demoralized.  I have cried more than a few tears over the unnecessary way the patient was treated.  It is even more frustrating for the patient who now doesn't always believe his symptoms are real

VALIDATION STORY

Another friend of mine has been struggling for a few years with odd and seemingly unrelated symptoms.  He came to me because many of his symptoms and some test results pointed to adrenal insufficiency.  Yes, he ended up getting diagnosed with adrenal insufficiency but after months of well managed adrenal insufficiency, he didn't get significantly better.  He finally had some testing done that could indicate a specific disease that generally needs to be diagnosed on clinical symptoms.  This is an over simplification but you get the picture.

He found a specialist in the area of his suspected issue.  This doctor did a "group" appointment.  I think the patient was slightly wary.  The group appointment turned out to be enlightening, informative and very positive.  VALIDATION #1-3 (1)  YES, THERE MIGHT BE SOMETHING WRONG WITH YOU 2)  I WANT YOU TO UNDERSTAND AND BE A PARTICIPANT IN THE PROCESS SO I WILL EXPLAIN THE REASONS WHY THERE MIGHT BE SOMETHING WRONG WITH YOU 3)  HERE ARE SOME HANDOUTS TO TAKE WITH YOU SO YOU CAN READ THEM ON YOUR OWN TIME AND REVIEW THE INFO WE HAVE COVERED IN CASE YOU CAN'T ABSORB IT ALL RIGHT NOW.)  It was followed by a brief one-on-one where the doctor reviewed the symptoms and lab results.  He explained the results and how the correlated with the symptoms and his philosophy of treatment.  VALIDATION #4  (YOU ARE IMPORTANT AND I WANT YOU TO UNDERSTAND WHAT IS GOING ON AND WHY IT IS GOING ON).   The doctor followed up the diagnosis with a written treatment plan VALIDATION #5 (I WANT YOU TO KNOW WHAT IS EXPECTED OF YOU FOR THE NEXT SIX MONTHS.  I WANT YOU TO KNOW YOU WILL FEEL LIKE SHIT BEFORE GETTING BETTER.)

OVERALL EXPERIENCE FROM BEING VALIDATED:  RELIEF, HOPE, BELIEVED, WEIGHT LIFTED.  PRICELESS!!

The doctor tells me I should only be taking 20 mg of hydrocortisone, I feel like I need more. Why?

Doctors have very little experience with adrenal insufficiency.  It's an uncommon disease.  All they can do is use common sense and go by studies.  Studies say two very distinct things about people with adrenal insufficiency.  

• We need 15-25 mg of hydrocortisone to survive see Table 3
• As a whole, we have a very poor quality of life "Despite optimised life-saving glucocorticoid-replacement and mineralocorticoid-replacement therapy, health-related quality of life in adrenal insufficiency is more severely impaired than previously thought."*

I believe whole heartedly that most of us need more than 15 - 25 mg of hydrocortisone a day to feel well.  I will explain why.

·   Recommendations/studies are flawed  

• Recommendations for 15-25 mg of HC/day are based on a male's endogenous cortisol production.  Cortisol basically squirts out of the adrenals and into the blood in healthy MALE people at a rate of about 10-15 mg of HC/day (women are generally excluded from medical studies yet we are forced to use the same data as men).[The amount of endogenous cortisol production varies depending upon the study.  It's generally calculated upon surface area of the body.  I find it hard to believe that I, someone who runs to teach a spin class and runs home (half marathon), walks the dog, cleans the house and then runs around like an idiot just for fun and is 5'2" tall and built like a pony would make the same amount of cortisol as someone who just lays on the couch all day. From Medscape "...equivalent to 5·7 mg/m²/day or approximately 9·9 mg/day" 5 men and 7 women is a pathetic sample size.  I'd also say for the other study used that had 5 pubertal males, it's probably not applicable to me.  Sometimes I smell  like a pubertal boy but as a premenopausal female, I have few similarities. EDITED 11/24/2015 for clarity, my intent was only to give a ballpark figure  for endogenous cortisol production]  Yay for normal people!  Our bodies don’t do that.  Boo!  We have to digest the HC and a lot is lost in first pass metabolism under the best of circumstances.  Bigger is not always better.  Which means, under the best and most ideal of circumstances, we would need a little less than 30 mg of HC to get the equivalent of 15 mg of endogenous production.
• o   FDA allows a 15% variation in strength of meds. See page 5B.  Think about that, you get one brand that’s 15% stronger with one prescription and 15% weaker with the next, you’re going to have very different HC needs!  I wonder what strength HC formulation was used for each study?
• o   We might have digestive issues that prevent us from getting the full “bang for our buck” due to low stomach acid or binders in the meds or celiac or Crohn’s.  Low stomach acid can be caused by under replacement of HC as well.
• o   We might be taking things that interfere with absorption likePPIs.  PPIs are the Devil, if you're on them, talk to your doctor about getting the hell off of them.  Start some probiotics.  Allow your gut to work.
• o   Think about the populations upon which the studies were conducted.  Who has time to sit around in a hospital and get his or her blood tested?  Disabled people, elderly, people who don't do much if you're "doing" you don't have time to participate in an all day study.  These people might not be in the best of health and have a very low expectation of what their meds should do for them.  Most studies about people with AI say that they have a low quality of life.  Great!  The expectation for dosing studies is that you can remain upright on the day of testing.  Who cares if you feel HORRIBLE ALL THE TIME.  You’re upright and have a pulse.  Successful study!!  Not.
• o   If you’re in a hospital getting your blood tested to determine the right amount of HC, are you chasing kids?  Doing laundry?  Hauling stuff from your car to the front door in the snow while making sure kids don’t get hurt?  Walking the dog?  Exercising?  No, you are reading a magazine, eating and chatting.  When was the last time you did that?  Probably about a decade ago!  If you’re in a hospital getting your blood tested all day, you’re going to use less HC than on day or period of your life that you are busy no matter what.
• o   Speaking of periods, I don’t believe there are many studies on women and their physiology.  It’s too complicated and throws too many factors into the mix.  They usually study men or menopausal women and assume women are just men without a penis and balls.
• o   Horrifying dosing schedules in studies.  You wouldn’t believe how they dose HC in the studies and then say it’s too much or too little.  30 mg/day with 20 in the am and 10 before bed.  5 mg, 3x a day.  UGH!  Of course people will report that they feel horrible and over/under replaced!

·  Known inflammatory diseases that are ignored

• o  Have another disease besides adrenal insufficiency?  Your doctor might say,
  "Oh, you're on steroids, you don't need more."  Ummmm, yes, you might.  The steroids we are on as people with AI are sometimes enough to keep us going from day to day but not enough to fight rheumatoid or Lupus inflammation.

Thyroid

• If you're hyperthyroid, you will probably need more HC than someone who is not.  Simple test.  Are you showing signs of being undiagnosed?  You need more HC.
• If you'v recently increased thyroid meds and you're showing signs of adrenal insufficiency like when you were undiagnosed, you need more HC.  You know how you fight that?  When you increase your thyroid meds, take extra HC for a few days.  Easy.
• Thyroid controls metabolism.  If your metabolism is increased, you will become hypoglycemic more quickly.  Your body uses blood sugar to power itself.  The brain needs blood sugar to run it.  Hydrocortisone is used in anabolism or creation of glycogen (EDITED 11/24/2015 for clarity, my intent was not to imply that cortisol breaks anything down)  the  glycogen/blood sugar.  Not enough hydrocortisone=low blood sugar=inability to power the BRAIN (among other organs and muscles)

Unaddressed deficiencies or unoptimized meds

o   Deficiencies, we can only know what we are deficient in if it’s tested and pinpointed. Some people have doctors who REFUSE to test or prescribe hormones in which we are deficient.  DHEA, testosterone, progesterone, thyroid.

o   Sometimes it’s not possible to optimize or treat deficiencies until other things are worked out (think thyroid and DHEA)

o   Hell, doctors sometimes blow us off with routine tests.  My guess is that a)  they have a god complex and if they are presented with something they don't know (DHEA-S needs to be tested) they get mad and instead of being grateful that you want to feel well, see themselves losing a boat payment because you might not be sick anymore.  b)  they are scared to get results that they might have to put some effort into understanding.  It's not cost effective for a doctor to understand one, nondiabetic's situation.  Diabetes is the cash cow.  You, adrenal insufficient patient are a time sucking burden.  No testing means no need to interpret results.   

·     Bottom line

o   It all comes down to what works for you.  You need to be on the lowest possible dose for you.  The dose has to be one that keeps you as asymptomatic as possible.  Your body can’t read the flawed study that says you should take 20 mg of HC/day and be loving it and happy about it!

Monitoring of glucocorticoid-replacement quality is hampered by lack of objective methods of assessment, and is therefore largely based on clinical grounds.

Adrenal Insufficiency, 2003 Arlt and Allilo

*Despite this statement by Arlt and Allilo whom I admire to the moon and back, I think the vast majority of adrenal insufficient patients are NOT optimized.  There are precious few of us who are able to be optimal.  Those of us who are optimized do all the leg work and have doctors who will work with us.

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.