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.

Rant: Bigger is not always better, Part 2

Part 2

Using the data from  Effect of Dose Size on the Pharmacokinetics of Oral Hydrocortisone Suspension by Toothtaker, Craig and Welling.  I've decided to change my hydrocortisone dosing a bit.  I'm reporting on it here so you all know how it goes.  Perhaps theory does not align with practice?

According to Effect of Dose Size, there is a "...nonporportional relationship between circulating hydrocortisone levels and the size of the oral dose."  5 mg of hydrocortisone yields 3.55 mg of cortisol.  10 mg of hydrocortisone yields 5.7 mg of cortisol.  If you'd like to see Part 1 of this post, click here.  

Here's how I'm figuring out my new dosing schedule.  Please do not change your hydrocortisone dosing without first consulting your physician.

1)  2/3 of the daily dose should be before noon based on a 7 AM wake up

2)   I wake up at 5 AM so "noon" is 10 AM for me

3)  1/3 of the daily dose should be after noon and before 4 or 5 PM

4)  Based on a 5 AM wake up, "noon" of 10 AM, 1/3 of my daily dose should be between 10 AM and 2 or 3 PM

5)  I take 45 mg of hydrocortisone per day split 10/10/10/10/5 according to the Effect of Dose Size the yield of my dosing is 26.35 mg [(5.7*4) + 3.55]

6)  To maintain the approximate yield of 26.35 mg per day while lowering the actual oral dosing, I'm going to take 40 mg split in two 10 mg doses and four 5 mg doses for a yield of 25.6 mg cortisol [(5.77*2)+(3.55*4)].  I will be cutting my overall hydrocortisone dose by about 1 mg HC.

7) Schedule will be as follows:

5 AM 10 mg HC

7 AM 5 mg HC

9 AM 10 mg HC

11 AM 5 mg HC

1 PM 5 mg HC 

3 PM 5 mg HC

8)  Next steps for me.  Set phone alarms and label accordingly.  Refill pill containers.

Although the yield for 5 mg doses is higher than for 10 mg doses, I chose to add two 10 mg HC doses because I'm too lazy to take pills 10 or 11 times a day (this includes vitamins and thyroid meds at night) and I only have ten alarms on my phone.  

I will try to post periodically about how this experiment works out.

Rant: Bigger is not always better

Get your mind out of the gutter!  I'm talking about hydrocortisone dosing.

I have hundreds of papers saved, all of which I've thought important at one time or another, most of which I have not read in their entirety.  I came across Effect of Dose Size on the Pharmacokinetics of Oral Hydrocortisone Suspension by Toothtaker, Craig and Welling.  

This is a highly technical study.  I will summarize the high points as I understand them.  Please pull this study and have a read!  Above, I've included a link to the abstract.  

I tend to have a lot of criticisms of studies but this one seemed pretty straight forward.  I'm sure someone with more knowledge of pharmacology could tear this apart.  Read on for my interpretation and quotes from the study.

1. "The elimination half-life was affected by dose size,..."
1. 5 mg 1.2 hours (72 minutes)
2. 10 mg 1.3 hours (78 minutes)
3. 20 mg 1.5 hours (90 minutes)
2. "The drug is absorbed rapidly into the circulation, achieving peak plasma concentrations within 1 hour."
3. "An overall five-fold increase in the tablet dose (10-50 mg) resulted in a 2.1 fold increase in mean C max [peak plasma concentration]..."
4. "A number of explanations was originally proposed to account for the nonporportional relationship between circulating hydrocortisone levels and the size of the oral dose."  The researchers eliminated several reasons and came up with "An increased free fraction during first-pass is likely to permit greater hepatic clearance, and to decrease the systemic availability of unchanged drug."  My interpretation:  your liver can only process so much hydrocortisone at one time.
5. "...the systemic availability of hydrocortisone is..."
1. 5 mg dose 71%  
2. 10 mg dose 57%
3. 20 mg  dose 56%
4. 30 mg  dose 40%
5. 50 mg  dose  40%
6. MY INTERPRETATION
1. You take a 5 mg dose and get 3.55 mg of cortisol out of it*
2. You take a 10 mg dose and get 5.7 mg of cortisol out of it*
3. You take a 20 mg dose and get 11.2 mg of cortisol out of it*
4. You take a 30 mg dose and get 12 mg of cortisol out of it*
5. You take a 50 mg dose and get 20 mg of cortisol out of it*

What can we, people on hydrocortisone, take away from this?  Bigger is not better.  Taking a 50 mg dose of hydrocortisone will NOT give you ten times more cortisol circulating in your blood.  Take smaller doses, more often to get the most out of your hydrocortisone dosing. 

Does your doctor have you on 30 mg of hydrocortisone/day all at once?  If so, you're not getting as much cortisol out of your dose as you could!  According to this study, you're getting about 12 mg of cortisol in your blood all at once instead of spread out through out the day.

In a more efficient scenario of 30 mg of hydrocortisone per day dosed 10/5/5/5/5 you'd be getting 19.9 mg of cortisol in your blood.  HUGE difference!

Many doctors subscribe to "less HC is better" and put patients on stupid, low doses which keep the patients from having any quality of life.  Physicians pay little mind to the pharmokinetics of hydrocortisone.  I can't blame them, it's a pretty obscure bit of science for an obscure disease.   Endogenously produced cortisol is about 10 - 15 mg per day (depending upon the source of reference).  If a doctor is fixated on these numbers and wants you to take an equivalent amount of oral hydrocortisone to the endogenously produced amount, you are screwed.  However, if you are taking 20 mg of oral hydrocortisone in doses of 10/5/5, you are coming in right in the ballpark at 12.87 mg of cortisol available in your blood!  Take 20 mg all at once and you get less, 11.2 mg of cortisol available in the blood.

Once again, physiologic dosing of hydrocortisone is best.  Smaller doses are more efficiently processed by the liver.  Smaller doses don't last as long (5 mg=72 minutes vs 10 mg=78 minutes) but if you are taking smaller doses more often, you won't feel ups and downs.  

How can this information be helpful in other ways?  Perhaps tapering hydrocortisone doses after an illness can be managed by talking smaller doses more often and less cortisol during each day of the taper?  If you don't feel great on the dose of hydrocortisone you're on, there is the possibility that changing the SIZE of your doses could help you feel better.  Taking smaller doses of hydrocortisone more often will provide you with smoother and greater hydrocortisone coverage (better blood sugar, blood pressure and energy).  If you're hyperpigmented and take large doses of HC throughout the day, hmmmmm, maybe that's your problem.  Very little cortisol is in your blood (less than your doctor thinks!) and it's triggering your pituitary to make lots of ACTH which will cause you to be hyperpigmented.  

Bigger is NOT always better!

*under ideal circumstances, your small intestine (where hydrocortisone is absorbed when you take it orally) health may vary

Rant: Let's start a revolution. Don't allow cortisol and ACTH testing to determine your hydrocortisone dosing.

"Treatment surveillance of chronic glucocorticoid

replacement is mainly based on clinical grounds because

no objective assessment has proven to be reliable for

monitoring replacement quality."

"Thus, in the absence of objective variables to measure

replacement quality, the doctor has to rely primarily on

clinical judgment, taking into account signs and

symptoms potentially suggestive of glucocorticoid overreplacement

or under-replacement (table). Underreplacement

bears the risk of incipient crisis and severe impairment of wellbeing."

Adrenal Insufficiency Arlt and Allilio

"Individual dose adaptation and monitoring of glucocorticoid replacement remains challenging as cortisol production is highly variable during the day and further influenced by many factors that activate stress responses like physical activity, pain, infections, psychological stress, low blood glucose, etc. Recommended daily hydrocortisone doses in primary adrenal insufficiency (PAI) are lower than estimated before ranging between 10 and 20 mg.  However, this reflects a mean need during the day and may not cover the need induced by additional stressors. Therefore, patients need to learn how to adapt their dose according to daily needs in a more flexible manner. Furthermore, comedication has to be taken into account...Some authors recommend weight-adjusted hydrocortisone dosing, thrice daily before food, leading to a reduction of intervals with excess cortisol exposure during the day and to reduced interindividual variability of cortisol profiles. This might be helpful when newly starting hydrocortisone replacement. However, other authors showed that there was no correlation of a clinical score assessing quality of replacement therapy with total or body weight-adjusted glucocorticoid dose. This demonstrates that dose finding has to be individually adapted and also requires patient education enabling the patient to correctly and autonomously adapt the hydrocortisone dose. Because of the nonphysiological cortisol profiles achieved by current replacement regimes, to date no reliable laboratory parameter exists for correct assessment of replacement quality. Even the serum cortisol day curves suggested by some authors only give a rough estimate and help to identify largely over- or underreplaced patients but are of limited value in the standard monitoring of glucocorticoid replacement. ^[4] Treatment surveillance is mainly guided by clinical judgment assessing daily performance, subjective health status and signs and symptoms of glucocorticoid over-replacement (weight gain, skin alterations) or under-replacement (fatigue, nausea, myalgia and joint stiffness). Fatigue is, however, a common complaint also under apparently optimized standard replacement conditions. Therefore, an increase in hydrocortisone should timely be reevaluated to avoid overdosing."

What is the Best Long-Term Management Strategy f0r Patients With Primary Adrenal Insufficiency? 

Quinkler and Hahner

More references for your reading pleasure:

Debono, M., Ross, R.J. & Newell-Price, J. (2009) Inadequacies of glucocorticoid replacement and improvements by physiological circadian therapy. European Journal of Endocrinology, 160, 719– 729.

Mah, P.M., Jenkins, R.C., Rostami-Hodjegan, A. et al. (2004) Weight-related dosing, timing and monitoring hydrocortisone replacement therapy in patients with adrenal insufficiency. ClinicalEndocrinology (Oxford), 61, 367–375

Arlt, W., Rosenthal, C., Hahner, S. et al. (2006) Quality of glucocorticoid replacement in adrenal insufficiency: clinical assessment vs. timed serum cortisol measurements. Clinical Endocrinology(Oxford), 64, 384–389.

So your question is, why does my doctor test my ACTH and cortisol?  The answer is simple.  He does no research and has even less comprehension of adrenal insufficiency than you know.

Testing ACTH is expensive and a waste of your blood and time once you've been diagnosed*.  Study after study concludes, "

*There are exceptions to this statement.  If you are secondary, ACTH may need to be tested.  If you are Cushing's and have had a BLA.  If you are primary and hyperpigmented, you may need your ACTH tested.  More than likely, if you're hyperpigmented and primary, you need more HC.

"ACTH cannot be used as

a criterion for glucocorticoid dose adjustment, since in

primary adrenal insufficiency it is invariably high before

the morning dose and rapidly declines with increasing

cortisol concentrations after glucocorticoid ingestion.122,124

Aiming at morning ACTH values continuously within the

normal range would, therefore, lead to chronic overreplacement.

However, in case of reappearance of skin

hyperpigmentation in primary adrenal insufficiency,

concentrations of plasma ACTH should be measured."

 Adrenal Insufficiency Arlt and Allilio

I really have no clue what you can do if your doctor recommends testing cortisol and ACTH except a) refuse b) just don't get the draw c) ask what he's basing his potential conclusions on (yes, easier said than done).  

The most important thing you can do is respect yourself.  Are you still suffering from symptoms of untreated adrenal insufficiency such as nausea, vomiting, diarrhea, fatigue, hyperpigmentation, low blood pressure?  Do you suffer from symptoms of Cushing's like weight gain, insomnia, easy to anger, purple striae, easy bruising and thin skin?  Let your symptoms guide you and your physician.  

Feel like crap and think you're on the "right" dose of HC?

1. Are you dosing your HC physiologically?
2. Does the amount of florinef you take keep your sodium consistently at 140 at 8 am, fasting after 24 hours on a normal sodium diet (2,300 mg)?
3. Is your free T4 1.3 if you're female and 1.4 if you're male?  GET YOUR RESULTS.  NORMAL is not an acceptable answer here.
4. Are you allowed to replace the hormones in which you're deficient like DHEA-S, testosterone, progesterone?

If you feel like crap and the answers to each and every question above is "yes", you need further testing and/or dosing assistance.  Get help.  If the answer is "no" to even one of these questions, work on each one in order with your physician.

In summary, doctors are wasting our blood, our money and our lives by testing cortisol and HC to determine the proper dosing since there are NO standards upon which to base their opinions EXCEPT clinical grounds!  

Let's start a revolution.  

Require your doctor to provide you with proof of why he wants to test your cortisol and/or ACTH to determine your hydrocortisone dosing.  He might fire you but it might be worth it.  You'll find someone who thinks you and your judgement is valuable.  Who knows?  You might feel better if you were allowed to trust yourself and your symptoms that YOU live with 24 hours a day, 7 days a week.

How to get diagnosed with adrenal insufficiency

Here's a subject that haven't touched on in years.  I'm not going to look back on notes or old posts because my views have probably changed.

If you are here and reading this, you feel that your symptoms fit the profile of adrenal insufficiency.  From what I've seen, you're probably right but need to find an "adrenal specialist" who can give you the diagnostic tests and manage you.

Sadly, "adrenal specialists" don't exist.  Don't fool yourself thinking an endocrinologist will know all about adrenal insufficiency.  He won't.  Sorry to be a buzz kill.  I've had AI for nearly 15 years and have not come across many doctors to whom I'd entrust my management.  Why?  AI is so rare that doctors have very little practical experience managing someone with AI and far less experience establishing a diagnosis.  They have no clue interpreting the one test that is the "gold standard" and completely ignore other diagnostic blood work and clinical symptoms.  Where does that leave you?

Your job is to:

• Compile ALL of the labs you can get your hands on.  ALL of it.  Yes, I mean ALL.
• Compile
• A personal health history with all of the body parts you've had removed, diseases you have, head injuries you've sustained, pregnancy complications
• A family health history.  Did anyone die of unknown causes?  Family members with other autoimmune diseases?
• A list of symptoms you have.  LADIES:  Do not mention depression or depression-like symptoms!  Women get pegged with depression because it's an "easy fix".  You'll be given Lexapro and told to go on your way.  You will feel worse on antidepressants and could die of a crisis in the meantime.  Keep the list objective. 
• Make a list of your meds, doses and times.  Include supplements, antidepressants, birth control and hormone replacement.  
• Print out this information from medscape:  Addison's Disease  Print all of it.  
• Request the following tests be done so a clear picture of adrenal function is available to you and your doctor:
• ACTH stim test with a baseline ACTH* and cortisol
• If I had to be diagnosed all over again, I'd ask how the test will be interpreted BEFORE the test is done and before the results are in.  You may find that the doctor has no clue about how to interpret the results.  
• Will the doctor take the other adrenal hormones into account when interpreting?
• Renin*
• CMP
• Anti-Adrenal Antibodies (2 types)
• Anti-Thyroid Antibodies (2 types)
• TSH
• Free T4
• DHEA-S 
• Progesterone
• Testosterone, Free
• *these tests must have proper protocol followed by the lab or they are invalid.  The lab doesn't usually do them right.  Print out the protocol and be sure they follow it.
• Find out how and when you can get copies of the results so you can study them BEFORE your appointment with your doctor.  Why would you want to go in to your appointment blindly and without knowledge????  How do you benefit from that?
• Make copies of all of this for your doctor.  Make sure each bulleted point above is printed on a different paper.

That's it in a nutshell.  I could go on and on but I think this is a good yet overwhelming start for someone who is undiagnosed.  A always, there's a free forum and paid advocacy if you need diagnosis assistance.

How do people with adrenal insufficiency determine if we are on enough or too much hydrocortisone?

One of the comments to my last post, Rant: The prescribing and adherence to low doses of cortisol,  asked the question "How do people with adrenal insufficiency determine if we are on enough or too much hydrocortisone?"  You would think that there was a cut and dry answer to this question.  There is no blood test for cortisol. There are no accepted guidelines to determine the correct amount of cortisol in the blood taking into account the many factors that can affect cortisol assimilation into the blood:

• Circadian rhythm of cortisol (at what time should what serum cortisol number be achieved?)
• At what time would this number be achieved depending upon a person's individual metabolism of the cortisol?
• Does gender matter for cortisol?  Place in the woman's cycle?  Post menopausal?
• HRT or estrogen replacement has effects on cortisol binding proteins
• How do the comorbid conditions affect a person's need for a higher or lower cortisol number?
• Does a person's digestive issue affect the amount of cortisol needed to attain a specific amount of cortisol in the blood? 

There are many more factors to consider.  The factors are technical.  What it comes down to is, what is a realistic way to determine if we are taking enough cortisol?  Yes, symptoms or lack of determine the "right" amount of hydrocortisone replacement.

Symptoms of adrenal insufficiency and under replacement of hydrocortisone:

• Hyperpigmentation
• Low blood pressure/orthostatic hypotension
• Nausea/vomiting/diarrhea
• Poor immunity, particularly with lung involvement
• Low blood sugar
• Fatigue
• Depression or crying at Hallmark commercials
• Serum indications 
• Elevated serum calcium
• Low sodium/high potassium
• Low lymphocytes
• High esinophils
• Low WBC
• High hematocrit

If you are not taking enough hydrocortisone, you will suffer from a few of the symptoms of adrenal insufficiency (see the list above).  You do not have to have each and every one of the symptoms to say, "Hmmmmm, I might not be on enough cortsiol!"  We all have different comorbid conditions and different physiologies that cause us to have different symptoms from one another.  I have only included the serum indicators for those of you who can't believe your symptoms.  Maybe you need to have someone else tell you (like a lab) that what you are feeling is valid.  The "serum indications" list is for you.

What can you do now that you've determined that you might not be on enough HC?

• Get your doctor's permission to make changes to your dosing strategy
• discuss timing
• discuss dosing
• discuss your symptoms
• discuss what constitutes a successful/failure of a trial
• discuss length of trial
• Get a journal where you record
• symptoms
• sleep
• medications, doses and times
• Set up a dosing schedule, see this rant for tips  Really, how hard is it? (An Addison's rant)

• Keep in mind you can only metabolize a certain amount of cortisol from hydrocortisone at one time.  5 mg and 10 mg doses are the most readily assimilated. 
• 2/3 of your dose should be before noon
• You will probably need to take your HC more often than you are now.  Separate doses by 2 or 3 hours
• Take your HC consistently
• Don't cut your trial short based on a one-off reaction.  Remember this quote, "

  “Once is happenstance. Twice is coincidence. Three times is enemy action"― Ian Fleming

The nice thing about hydrocortisone is that it's short acting.  Dosing is reversible.  If you decide to change your dose of HC (WITH YOUR DOCTOR'S PERMISSION) and it seems like too much, you can take less later in the day and the next day.  You don't have to stick with a dose that doesn't work for you.  Easy!

Symptoms of over replacement of hydrocortisone:

• Immediate
• Feeling jittery
• Anxiety
• Overstimulated
• Easily angered/frustrated
• Long term
• Weight gain that's inappropriate to food intake/exercise
• Purple striae
• Insomnia
• High blood sugar
• Moon face/buffalo hump

Symptoms of correct replacement of hydrocortisone:

• Fatigue that's appropriate to your activity level
• Sleeping well
• Appropriate digestion with regard to your other diseases
• Consistently good blood sugar
• Consistently good blood pressure
• Good mood
• Good immunity
• When I'm feeling really well, I think, "Are these meds actually doing anything?  Are they placebos?"  For me, this is a sign that my meds are balanced well!!!

Other posts that might be helpful.

• Rant: The Goldilocks Principle
• Rant: Occam's Razor
• Rant: Martyrdom won't get you well. Putting on your big girl panties will.
• Rant: Why is adrenal insufficiency mismanaged?

Rant: The prescribing and adherence to low doses of cortisol

People who are diagnosed with adrenal insufficiency should be taking the lowest possible dose of hydrocortisone (HC) possible.  Fact.  What is the lowest possible dose?  It all depends upon your physiology, your diagnosed and undiagnosed comorbid conditions and the amounts of other hormones you are on.

How does your doctor determine how much HC you should be on?  Pathetically enough, he basically pulls a number out of his ass with no regard for your quality of life or clinical symptoms.  He likes to err on the side of a lower dose and very poor quality of life.  The generally recommended guidelines in medical literature are about 15-25 mg of HC per day without any regard to activity level, binding globulins, other hormones you are taking that affect cortisol metabolism or the other diseases you have.  

I know of very, very few people who can function well on 15 mg of hydrocortisone a day.  I know of only a few.  Some have decent quality of life.  Some do not but prefer to suffer from all of the symptoms of under replacment:  bronzing, nausea, vomiting, low bp, fatigue, hypoglycemia.  In addition, cortisol is needed for bone growth.  Not enough cortisol INCREASES your risk of osteoporosis so if you think you're doing yourself favors by suffering through the symptoms of under replacement to make your doctor happy, you are actually a martyr and a little suicidal.  

The average replacement dose is about 20 mg of HC per day.  The recommendation is based on nearly nothing.  There is no monitor for cortisol that's widely available to the public.  There are no guidelines for cortisol numbers based on the dose, patient's metabolism, comorbid conditions and time of the last dose.  The 20 mg of HC number was collected in a hospital setting on people who sat around all day getting blood drawn.  When's the last time you sat around all day, chatting, reading magazines and waiting to have blood drawn?  Most of us don't have that sedate or stress free of a life and need more cortisol to mow the lawn, take care of kids, work full time, fight with our spouses and exercise. 

If you find that you need more than 20 mg of HC per day to function well, don't let your doctor tell you you will be over replaced with cortisol if you take more.  Some of us have active lifestyles, stressful lifestyles and/or thyroid (GH too) replaced at too high of a dose for someone who only has a fixed amount of cortisol in her system.  Know the symptoms of over replacement.  Tell your doctor what they are and which ones you don't have from deviating from his recommendations.

It is far more dangerous for you to be under replaced than properly replaced.  You are unable to store glycogen in your liver if you do not have enough hydrocortisone.  If you do not have glycogen stored in your liver, you will more easily become hypoglycemic.  Hypoglycemia is when you don't have much sugar in your blood.  The sugar in your blood feeds your brain and muscles.  You can die from severe hypoglycemia.  

If your doctor is only prescribing the bare minimum of hydrocortisone, how do you keep a small stash in your wallet, gym bag, desk or purse?  What do you do if you vomit and need to triple your HC dose?  How do you increase your HC for exercise?  Heaven forbid you get a fever and need to double or triple for days in a row?  If you're willing to share your strategies on this, I'd love to hear them.

Rant: "Normal" cortisol results and cortisol testing.

"Treatment surveillance of chronic glucocorticoid replacement is mainly based on clinical grounds because no objective assessment has proven to be reliable for monitoring replacement quality. ACTH cannot be used as a criterion for glucocorticoid dose adjustment, since in primary adrenal insufficiency it is invariably high before the morning dose and rapidly declines with increasing cortisol concentrations after glucocorticoid ingestion.122,124 Aiming at morning ACTH values continuously within the normal range would, therefore, lead to chronic overreplacement."

 Arlt, W., & Allolio, B. (2003). Adrenal Insufficiency. Lancet, 361, 1888

It is clear in the adrenal insufficiency literature that cortisol ranges are useless for determining a patient's cortisol replacement needs yet uneducated, poorly read doctors continue to ask their patients to submit and pay for cortisol and ACTH testing to determine the patient's replacement needs.  There are no reference ranges for cortisol replacement!  How can any determinations be safely made by your physician if there is no data?

A doctor will ask you to get a morning cortisol test and sometimes ACTH.  Did he tell you how much HC to take?  Did he tell you when to take it?  Does he have literature to determine what the proper numbers should be based on dosage of HC and timing of the dose (the answer to this is NO because it does not exist.  If you have access to this literature and I am wrong, PLEASE post a link in the comments.  I want to be wrong about this.)

The way you feel and your symptoms have to determine cortisol replacement.  Doctors constantly want us to take lower and lower doses of HC but the medical literature says replacement needs to be based on "clinical grounds".  The Arlt and Allolio quote is just one of many reinforcing this position.
A well meaning doctor might ask you to pay for an ACTH serum test to help you determine your cortisol replacement.  He's misinformed.  ACTH is a poor indicator of cortisol replacement and getting this test done can actually harm you if the results are interpreted incorrectly...and they will be interpreted incorrectly.  Your doctor might suggest you start taking less HC or more without taking your "clinical grounds".  Duh!  Are you constantly nauseous, have diarrhea, hypoglycemia and/or low blood pressure but your ACTH draw is low?  Does your doctor want to lower your HC dose based on the ACTH result but not want to pay attention to the fact that 1)  ACTH can't be used to determine HC replacement  2)  it has to be done under specific lab conditions and it probably wasn't  3)  it has to be done first thing in the morning  4) ACTH is pulsitile and fragile so even under the best of circumstances, it can still have an abnormally low result.

Enough about the futility of the meaninglessness of ACTH results.  On to the dangerous misinterpretation of cortisol testing in the undiagnosed.

Doctors will often randomly test cortisol in the undiagnosed yet have NO CLUE as to what the results should be.  They look and see if the lab flags the result as "High" or "Low".  This is one of the most misleading and dangerous things an uneducated doctor can do.  The range is usually 2-20 (give or take, depending upon the lab).  Anything that falls within that range is considered "normal".

Let's look at the "normal" range more closely.

A morning cortisol (8 am) should be somewhere around 20 with the person being asymptomatic for adrenal insufficiency.  An 8 am cortisol of 15 or lower (in someone who is undiagnosed) is a reason to run an ACTH stim test.  Let's just use a little common sense here. A decent morning cortisol should be 16-20ish based on the fact that a cortisol of 15 or lower is grounds to run an ACTH stim test.

A midnight cortisol should be 2-4.

If you have an 8 am cortisol of 12 and a doctor who doesn't know that the cortisol reference range is 2 at midnight and 20 at 8 am.  You're screwed and dismissed as normal despite all of your other symptoms that correspond with adrenal insufficiency.  You are a victim of the "normal" reference range.

Get copies of all of your labs.  Study them.  Learn what they mean.  Search out health forums (mine is free) and get help.  I can provide assistance and guidance if you want to pay for it.  If you suspect you have adrenal insufficiency, you are probably right.  It's hard to convince a physician who only sees "normal" numbers.  All of the numbers need to be taken into account, so do symptoms and past labs.

Rant: Reference ranges can be meaningless (Alternate title: Ma'am your results are normal! You are actually depressed.")

You read that right, reference ranges can be meaningless or even misleading to your healthcare practitioner.  For people with adrenal insufficiency, reference ranges that apply to "normal" populations do not apply to us.  Reference ranges themselves are ridiculously flawed as well.  Applying flawed ranges from the wrong population to people with adrenal insufficiency is a terrible idea for people whose major symptom is fatigue.

On the other hand, I'm not saying to totally and completely disregard reference ranges either.  The numbers you get and where you fall within the reference range, when paired with symptoms and other tests that should be run with one another can be worth their weight in gold.  The numbers can point you in a direction for research that's specific to your condition.

Thyroid as a classic example

• It's suggested that each lab that runs TSH testing establish it's own, standardized ranges due to differences in assay performance.  Often, they don't.  The doctor who interprets your labs does not know whether or not the lab has done this.
• TSH normal lab ranges vary from .5 to about 4.5 yet 80% of the US population has a TSH of around 1.5.  When you're on thyroid replacement, TSH is a useless indicator of replacement status since the thyroid feedback loop is interrupted by thyroid replacement medications.
• TSH is often run on its own.  In populations such as the adrenal insufficient population, TSH can be useless or misleading.  TSH can look "low" as in outside of the lab range.  Usually, low TSH makes it look as if someone is hyperthyroid.  In AI populations, any number of problems can exist.  One of the most misleading, a pituitary or hypothalamic deficiency/autoimmune issue/adenoma which keeps a person from releasing TSH.  TSH stimulates the thyroid to make the bioavailable hormones.  If the thyroid is not getting enough TSH, not enough thyroid hormone will be released by the thyroid and the person will be hypothyroid.  A doctor will only half the picture will lead the patient on an expensive, unnecessary, complicated journey.  Everything could have been figured out quickly by running the pair of numbers that are a good indicator of thyroid status for a person NOT on replacement thyroid hormones:
• TSH
• free T4
• You may ask, "Why free T4? My doctor runs Total T4, isn't that good enough?"  Nope.  Let's talk reference ranges.  Your total T4 can be well within the normal range but the free (bioavailable) portion, the part that controls your metabolism and regulates how you feel, is affected by binding proteins.  When you have adrenal insufficiency, you may be deficient or over replaced on other hormones which affect how much bioavailable thyroid is available to your body.  If you're replacing estrogen, you HAVE to get free T4 tested!  Estrogen changes the binding proteins so that more thyroid is bound to proteins (so your Total T4 looks "normal") but you will be symptomatic for thyroid issues because very, very little is "free" or available to keep your metabolism working.
• The "normal" free T4 range is often .9 to 1.7.  Doctors refuse to acknowledge your symptoms if your frees are within the "normal" range.  Most women with AI feel best at a certain free T4 and men at another (anecdotal evidence).  This is probably because people with AI have a fixed amount of cortisol with which to process thyroid hormone.  Some doctors seem to consider it a crime against humanity for people on thyroid replacement to desire to have a midrange free T4.  I don't understand why.  Why have a reference range if you can't shoot for a sweet spot within it where you're asymptomatic?
• Thyroid has a circadian rhythm, "normal" ranges have been determined for a morning blood draw.  How many times has your doctor shuffled you off to the lab in his office right after your appointment in the afternoon.  Afternoon thyroid blood draws are flawed and the ranges used by the lab are useless.

Thyroid is just one example of the many ways reference ranges can be meaningless.  Labs need to be run the same way every time so you can compare apples to apples.  They need to be paired with other labs to have any meaning what so ever.  Reference ranges have to be evaluated in light of the comorbid conditions of the patient and medications that are being taken by the patient, when they were taken and in what dosage.

Don't despair if you feel awful and your test results are "normal".  Keep collecting your results, keep trying to understand them keep asking for help.  What I've found is that with more comprehension of the tests I've had done to me, the more I understand that "normal" results were completely and totally abnormal.  When I've felt terrible and had "normal" results, I was told I was depressed.  No, I wasn't depressed, I was dying.

Watch for Part 2 of this rant.  "Normal" cortisol results and cortisol testing.

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.

Next:

• Go to the lab's website or use one of these to get a good idea of what protocol will be used.
• Labcorp.com Test Menu
• Quest Diagnostics Test Menu
• Hire Addison's Support Advocacy to do this for you.  Shameless plug.
• 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!

Rant: Prednisone is often a bad choice for people with adrenal insufficiency

I think we've all been told that we could take prednisone instead of hydrocortisone to manage our adrenal insufficiency.  "It lasts longer!  You don't have to take it as often!  You can take less!"  Yes, Yes.  No.  Sure prednisone lasts longer and you don't have to take a longer acting steroid as often but do you know why your doctor is telling you to take it as opposed to hydrocortisone?  Because he thinks you're in capable of taking hydrocortisone as often as you would need to so that you have proper steroid coverage and you'll end up in the ER.

For the record, there are a few people for whom prednisone will work better than hydrocortisone.  They may actually be noncompliant and take ownership of it.  They may have other inflammatory conditions that are helped by pred's long lasting effects.  Physiologically, it just may work better for a very small portion of people.  If you are one of these people, go for it.

Why is prednisone a problem?  It has a much longer half-life than hydrocortisone.  Hydrocortisone is bioidentical to cortisone, the hormone that the adrenals are supposed to release.  Hydrocortisone is converted to cortisol in the liver.  Cortisol in is a hormone that interacts with multiple other hormones in the body.  The ebb and flow of it helps release hormones, metabolize some as well as keep your blood pressure and blood sugar up.  Cortisol has a much shorter half-life than prednisone.  When you mess with half-lives, you're messing with the circadian rhythm.  When you mess with the circadian rhythm, how can you expect to optimize your health?  You can't.

Prednisone is also undetectable in a cortisol blood test.  Its chemical structure is different than cortisol.  Some doctors loooooove to test cortisol but forget that prednisone is undetectable in the blood draw.  They are puzzled at why an 8 am cortisol test would be so low when a patient had recently taken his or her daily dose of prednisone before the test.  They jump to the conclusion that the patient is not taking her prednisone as specified or is not on enough steroid.  In the case of the latter, the patient is then instructed to take more steroid (when it might not be justified by symptoms) which leads to over replacement, insomnia, ill health and a greater possibility of osteoporosis and type two diabetes.  Too much steroid of any kind can cause the problems listed.

Prednisone is so long acting that it does not ebb and flow the way hydrocortisone does.  You might think that's great.  It's not.  Your body is designed to have ebbs and flows.  For example if the steroid in your blood is not low at night when you are sleeping, growth hormone will not be released and you will have insomnia.  When growth hormone is not released consistently, you will be fatter, more fatigued, have less sex drive and less muscle mass.  None of those things contribute to optimal health.  This is just one example of how one hormone is affected by steroids.  There are many, many others.

Prednisone has little to no mineralocorticoid properties.  Mineralocorticoid properties help you retain sodium.  If you are in the hospital with a knee replacement surgery, on large doses of hydrocortisone (which has mineralocorticoid properties), have high sodium, low potassium and high blood pressure, prednisone is probably a good alternative to hydrocortisone for a short time.  On a day to day basis, you're probably better off with the hormone Mother Nature intended for you, cortisol.  A little mineralocorticoid goes a long way to helping you maintain your sodium potassium balance.  Often, if a doctor cares so little about a patient's quality of life that he prescribes prednisone, he's often uneducated about how to evaluate a patient's mineralocorticoid status (renin, electrolytes, orthostatic blood pressure reading).  If someone has low sodium (also called hyponatremia) constantly, osteoporosis will ensue.  Evaluation of a patient's need for Florinef (the mineralocorticoid of choice) is vital regardless of whether the patient is primary or secondary so that hyponatremia can be avoided.

Taking less prednisone than hydrocortisone is just a weird concept.  5 mg of pred is equivalent to about 20-25 mg of hydrocortisone but the predinsone is more potent at that dose.  I guess if you are a math person and lower numbers are better than higher ones, pred might be for you.  What I'm saying is that the number does not matter so taking "less" of a more potent drug and "more" of a less potent drug is just a silly concept for a doctor to present to a patient.  What matters is that a patient uses the lowest possible dose of a steroid while avoiding under replacement symptoms.

So, let's review.  Prednisone can mess with your circadian rhythm,release of hormones and metabolism of other hormones.  Prednisone has no mineralocorticoid properties.  Sure, you take smaller number of milligrams of it but you should be taking an amount that's similar to your hydrocortisone dose.  To me, it does not seem worth it to take prednisone once a day and have it last for only 8 - 12 hours from the time you take it so that you can be a "compliant" patient that feels like shit.

For you, prednisone might work.  If so, that's cool.  If you are saying to yourself, "I feel fatigued all the time, I'm gaining weight inappropriately, my blood pressure stinks, my blood sugar is through the roof, I sleep poorly and have terrible muscle mass" you might consider switching to an equivalent amount of hydrocortisone that's taken physiologically and see if it works differently or better for you.  If you go to your doctor and ask to be switched from prednisone to hydrocortisone, bring the conversion calculator with you!  It's amazing how often doctors switch someone from 6 mg (equivalent to 24-30 mg of hydrocortisone depending upon the calculator) of prednisone to 15 mg of hydrocortisone for no reason other than that's what they decided.  There is no logic to cutting someone's steroid dose in half and thinking that the experiment didn't work.  The doctor is setting you up to fail and feel miserable.  Take an equivalent dose when you switch.  You can always taper the dose down slowly over the course of time if that's an issue but start at an equivalent dose.  You will need to try the hydrocortisone for about two weeks to get yourself into a rhythm and comfortable with the dosing.  Don't do it for one day and say it doesn't work.

If prednisone is working great for you, terrific.  No need to comment and tell me how wrong I am about all of this.  I am happy for you!  For most people, hydrocortisone taken physiologically is the best choice.  If you are on prednisone and it's not working well for you, please consider discussing changing your steroid to hydrocortisone.  You deserve to live the best life possible.  When you have adrenal insufficiency, living the best life possible starts with hydrocortisone and physiological dosing.

Rant: The Goldilocks Principle

Yes SueC, this is for you.  I hope it makes sense and helps you and others get their meds right.

You all know the story of Goldilocks, right?  She breaks into the bear's house and ransacks it, beds are too big or too small, food is too hot or too cold.  Eventually, she finds stuff that's "just right" for her.  The same holds true for lab ranges and meds.

Taking extra hydrocortisone or thyroid meds is not better for you despite the focus of our culture on "more is better".  Too much hydrocortisone will lead to long term problems like insomnia, weight gain, high blood pressure, etc.  Too much thyroid meds will make you hyperthyroid and, if you have adrenal insufficiency, make you need more hydrocortisone or you will feel hypothyroid.

Confusing, right?  And what the hell does it have to do with Goldilocks?  Well, you'll never feel optimal if your meds are over or under replaced.  You'll feel well if they are "just right".  Contributing to the confusion is that there is no reliable way to test for proper cortisol replacement.  Adding to that, doctors are frequently telling patients to get by on the lowest possible dose of hydrocortisone that they can get away with or they will end up with osteoporosis, fat and criticized by said doctor.  Very often I'm seeing people guilted into surviving each day on 15-20 mg of HC/day despite symptoms that they are completely and totally under replaced.  Their lives suffer, their families suffer and their bodies are ravaged by frequent illness, nausea, exhaustion and malaise.

Let's break this down into bite sized parts and assume you've been diagnosed with adrenal insufficiency.

• How do you feel and what are your symptoms?  
• Low HC?  Low BP?  Nausea?  Weight loss?  Fatigue?
• High HC?  Irritable?  Higher BP?  Weight gain?  Trouble sleeping?
• Just right, you function like a normal person!
• Has your thyroid been tested properly?  And you will say yes to this.  Most likely, the answer is no.  If your doctor solely tests TSH, you're screwed unless you are ridiculously out of the range.  If you're secondary and your TSH is low or low normal and your doctor doesn't put secondary hypothyroidism together with low or low normal TSH, you're totally screwed.
• Proper testing of thyroid is testing the FREE T4, the bioavailiable portion.  
• If your Free T4 is too low, your TSH might be normal, might not (making it an invalid way to determine thyroid status).  Low Free T4 will cause you sleep issues, hair falling out, eyebrow thinning on the outer third, inappropriate weight gain, infertility and constipation.  
• If your Free T4 is too high, most likely your TSH will be suppressed and you'll feel shitty.  Your degree of shitty depends upon how you replace your cortisol.
• All of this leads to the discussion of "high", "low" and "just right" Free T4.  The current lab range for Free T4 is plain old dumb and quite unhealthy.  A Free T4 of 1.3 for a woman and Free T4 of 1.4 in a man with adrenal insufficiency tends to be optimal.  The range is .9 to 1.8.  HUGE, considering where optimal is.  YOUR DOCTOR WILL NOT KNOW THIS.  You ask, why?  Because your doctor often just goes by lab ranges and is not highly educated about thyroid, if it's in range, he will think you're AWESOME despite symptoms to the contrary.  SYMPTOMS, SYMPTOMS, SYMPTOMS coupled with labs are the very best way to figure out what needs to be fixed with your thyroid.
• How do you get your thyroid "just right" if your Free T4 is not 1.3/1.4 and you want to try it?  Beg to change your meds so that you can try being in the middle of the range as your doctor's most likely is.  His wife's Free T4 is probably mid range too.  Ask what it will hurt to get that number to mid range?  The answer is, there is no downside to having a mid range Free T4.  If he gives you an answer, it's bullshit unless you've got Lyme or some other oddball thing wrong with you.  99% of the time, mid range Free T4 is optimal.
• Let's say your Free T4 is "just right" and you're dosing your HC physiologically.  How do you feel?  What are your symptoms?  See the first bullet point.  Very often, people are under replaced with their hydrocortisone because their doctor has a hard on for 20 mg of hydrocortisone being the magic number.  Let me tell you, it's not.  You and only you (with your doctor's blessing) can determine the right dose of hydrocortisone.  It might be a low number and it might be a high number.  If you go by symptoms, the number doesn't really matter (unless you're taking 50 mg of HC or more every day).  HC dosing is NOT WEIGHT BASED.  That's total bullshit and I'm living proof of that.  I'm small and getting smaller on what some would consider a high dose of hydrocortisone.

Don't let your doctor bully you or God Complex you into thinking everything is "just right" when it's "too high" or "too low".  Shoot for optimal, it's not unreasonable to want your hormones mid range (JUST LIKE HIS ARE).  You deserve it and it's not a ridiculous request.  Compromised quality of life, frequent exhaustion, hospital visits are NOT a part of adrenal insufficiency unless you allow your doctor to bully you into believing it.  The previous symptoms are that you are regularly skimping on hydrocortisone.  If your HC is right, you're much less likely to be sick and/or tired.

If you have any questions about this post, please post to my forum www.addisonssupport.com.