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.