"As for sickness: Are we not almost tempted to ask whether we could get along without it?" Nietzsche

As for adrenal insufficiency and hypothyroidsm, could I get along without them?  The simple answer is, "yes".  More complex answer is, that I wouldn't be who I am now without them.  Chronic illness forces you (if you want to be healthy) to eat well, sleep well, maintain a degree of fitness, learn about your condition and to advocate for yourself.  After you're done doing all of your pills for the week or month, all of the above items are nearly a full time job.  We are forced to be efficient with our time so we can fit it all in.  Our social networks change, to be healthy we have to socialize with others who have similar conditions so that we can find knowledge and experience.  Doctors simply are incapable of understanding and comprehending what it takes for us to be healthy physically.  Often, they are such poor advocates for us, they make us feel worse physically by neglecting to know anything about adrenal insufficiency.  Hell, sometimes they attempt to kill us by withholding emergency injection kits or will not allow us to have enough steroids on a daily basis to live a decent life.  They have no clue about comorbid conditions and then have the nerve to tell us we are hysterical or depressed.  (You all know how I feel about most physicians.  I'll stop.)

My point is that I and probably you are not who we would be without our sickness.  I constantly fear dying either by a doctor's mistake or by my own stupidity.  For this reason, I live every day to its fullest.  I set my goals high.  I do stupid things that would make for good stories if I die doing them.

Yes, I could get along without sickness but I wouldn't be who I am today. I don't think I would want to challenge myself as much physically, mentally and emotionally if I knew I had time and knew my body was going to hold up.  Would I live each day with the fear of death like I do now?  Probably not.  Would I get as much accomplished if I didn't have sickness?  No, I'd think I had time.  I don't and you probably don't either.  Get out and do while you can.

Another thing I could not get along without are the friends I have made and become reacquainted with along this 16 year journey.   I love you all and appreciate you.  I thank you for being here for me when I need you, when I need a sounding board, when I just need to vent and for a kick in the ass when you think it's appropriate.  Without sickness, I would not have you.  I could not get along without each and every one of you.  You are the voices in my head when I need help (Wanda!).  Sometimes you're the voice on the other end of the phone when I need my husband talked through giving me a shot at the peak of a hurricane (Ashley!).

Thanks to you all for reading this and for being part of my life, many of you for lots of years.  Love and hugs to you all!  Happy and healthy 2018 to everyone.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

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.

Rant: Many doctors do not know the first thing about adrenal insufficiency nor hypothyroidism. Caveat Emptor.

At the request of my new DO, I went to see an endocrinologist.  Because I want to keep this DO, he's highly recommended, I went against my instincts and saw the endo that he said he would hypothetically have his wife or daughter see.

No surprise, I walked into the waiting room to be greeted by a multitude of Type II diabetics.  Type II diabetics are the bread and butter of most endocrinologists.  For this reason, the endocrinologists know the most about...you guessed it...diabetes.

The doctor promptly met in me at the appointed time.  I was encouraged by this.  We talked for a minute and he asked to see my test results from my diagnosis.  mistake on my part.  My diagnosis was not text book depending upon what information was used to determine this.  At 30 minutes, I stimmed to 16.  That's a failure of the ACTH stim test if you use the 30 minute reading.  I stimmed higher than 18 for the 60 minute reading which this doctor declared a "pass".  I asked why a 90% failure of the adrenals was used to determine the need for replacement steroids and what would have happened to me if I had been in an accident at that time in my life where I had an obvious 80+% failure of my adrenals.  His reply, "That's just the criteria that was established a very long time ago and that's what I use!  You didn't have adrenal insufficiency! Now you have iatrogenic (that's doctor induced (yes, no shit Sherlock)) adrenal insufficiency."

I showed him my insulin tolerance test.  The baseline was high and he declared that because of that number alone, the test didn't matter.  He could not explain to me why the cortisol went down when my body was stressed with insulin nor could he explain why I went unconscious from low blood sugar.  I can tell you why and I don't have a medical degree. Cortisol is used to synthesize glycogen.  Glycogen is released when the body is stressed as in the case of an insulin tolerance test.  When the body has no glycogen stores due to long term, untreated adrenal insufficiency, it will do what it can to keep the blood sugar up, like, duh, use the cortisol to synthesize glycogen.  If there's no glycogen, the person will a) have lower and lower cortisol readings as time progresses b) go hypoglycemic.  BINGO.  I did both.  A diabetes doctor didn't understand the insulin tolerance test, sigh.

He saw my thyroid results where my TSH was 3.6, within the lab range but high if you consider 85% of the US population has a TSH of 1.5 or so.  I didn't have hypothyroidism either according to him!  I asked why the American Association of Clinical Endocrinologists recommend keeping the TSH at 1-2.  He said that I would have to use the same lab as the AACE to find a TSH of 3.6.  At this point, I collected everything I had and got up to leave.

I am healthy.  I am very healthy.  I have AI and hypothyroidism yet run ultramarathons.  I blew out my shoulder and had reconstructive surgery and can still to pull ups. I have streaked walking for five years and running for three.  I teach spin classes.  I rarely get colds.  Since I've quit drinking, nausea occurs infrequently.  He claimed he could not take me on a a patient since he did not agree with my 15 year old diagnosis.  From a visual perspective, it's quite obvious that I'm not over replaced on steroids nor on thyroid medication.  My life went from illness and struggle to good health yet this man thought my diagnoses were wrong.  On a positive note, he said he would recommend to my DO to continue to prescribe my medications to me.  Except testosterone.  I would need an OB/GYN for that.  WTF?! An endocrinologist who has no understanding of the adrenals.  60% of a woman's testosterone is produced in the adrenals.  My adrenals don't work.  Testosterone is not an OB/GYN issue in my case.  Complete and utter lack of understanding of the adrenal glands by a medical professional.

Here is what I learned from seeing an endocrinologist:

• Never give a doctor information that won't help with your current situation unless they are absolutely positively textbook failures.  For example, I should not have brought ANY medical records that were more than a year old.
• When a doctor shows his absolute, positive lack of interest in clinical symptoms paired with lack of understanding of basic endocrinology (IE not knowing the AACE guideline and, worse yet, not understanding them in the slightest), RUN.  
• When a doctor only uses only one lab range (incorrectly, I might add) to determine a diagnosis, he's neither intuitive nor caring.  He doesn't care about alleviating symptoms nor helping you feel better.  He wants to be right.
• I will try to never see an endocrinologist again unless he or she has a proven track record with AI.  I'm sure I can see an anti-aging doctor who would be tickled pink to have a healthy middle aged woman as a client.
• I came out of the office, mad and hurt.  I doubted myself and my diagnosis as a result of the things that were said to me and the misinformation that he tried to spread.  I felt horrible for those who have not studied adrenal insufficiency and hypothyroidism the way that I have.  The doubts they might have would be overwhelming.
• MOST IMPORTANTLY, I NEED TO MAKE A DIFFERENCE IN THE MEDICAL COMMUNITY.  I NEED TO FIND A WAY TO EDUCATE THEM SO THAT THEY DON'T KEEP TRYING TO MAKE US FEEL TERRIBLE ABOUT OURSELVES, OUR DIAGNOSES AND THE SYMPTOMS THAT WERE VERY REAL AND DEBILITATING.  THE SYMPTOMS THAT WE HAD AND THE AWFUL LIVES WE USED TO LIVE THAT WERE ALLEVIATED BY PROPER TREATMENT COUNT FOR SOMETHING.  ALLEVIATION OF SYMPTOMS IS AN INDICATION OF PROPER DIAGNOSIS AND MANAGEMENT OF OUR DISEASES!
• More than anything, I would love to see a doctor who listens and will talk to me.  I would like a doctor who can trust his own eyes and my current lab work.  I am healthy.  I want to stay that way.  What's so hard about working with a patient to help him or her achieve her greatest potential?  I suppose it's not cost effective to spend time with a patient, listen and discuss things only to have a healthy patient who will only see you once a year?  It's a much better business model for a doctor to be all knowing and keep your business coming in throughout the year.

Rant: Think your surgeon knows what he's doing with hydrocortisone dosing for surgery, think again

http://www.asaabstracts.com/strands/asaabstracts/abstract.htm;jsessionid=B8A9D5FA13A9A47553678ED64622BC4A?year=2015&index=16&absnum=2911

A1219 October 24, 2015 1:00:00 PM - 3:00:00 PM Room Hall B2-Area C

Survey of Pediatric Anesthesiologists Regarding the Use of Peri-operative High Dose Steroids for Children With Adrenal Insufficiency

Hardave S. Gill, M.D., Kristine Urmson, M.D., FRCPC, Jennifer O'Brien, Not Applicable University of Saskatchewan, Saskatoon, Saskatchewan, Canada

Disclosures: H.S. Gill: None. K. Urmson: None. J. O'Brien: None.

Background: Adrenal insufficiency is a disorder of the adrenal glands where they do not produce enough of certain hormones, mainly cortisol and aldosterone. Management of patients with adrenal insufficiency presenting for surgery in regards to steroid supplementation remains unclear. Congenital adrenal hyperplasia (CAH), one form of adrenal insufficiency, is a disorder involving a deficiency of an enzyme involved in the synthesis of cortisol, aldosterone, or both. Current guidelines are clear that high dose steroids are recommended for children with CAH undergoing anesthesia. High dose steroids have potential risks such as bradycardia, hypotension and asystole, increased risk of infection, blood glucose disorders, liver & gastrointestinal effects, and psychiatric syndromes. Given the risks identified, it is important to examine if current recommendations reflect clinical practice in providing optimal care for patients. Methods: Local research ethics board approval was obtained prior to study commencement. A cross-sectional survey was distributed following pretesting and pilot-testing. Invitation to participate in the survey was distributed via the Canadian Pediatric Anesthesia Society members’ email list. The initial email invitation was followed with two additional invitations to complete the survey. Responses were analyzed using standard tabulations. Results: 55% of respondents would not provide stress-dose steroids for a cystoscopy and 21% would not do so for a laparotomy, despite the Endocrine Society Clinical Guidelines on CAH. See Table 1. Discussion: Our results demonstrate variation in clinical anesthetic practice regarding stress dose steroids in children with CAH undergoing anesthesia. Even when guidelines are provided, many respondents indicated they would not follow them. Our data also highlight that the decision to provide stress dose steroids is related to the proposed procedure. Finally, given the significant variation of practice, a need for future research is identified with an eye to change current practice recommendations.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rant: Emergency jewelry

My panties are in a bunch.  Maybe TMI but I think everyone needs to know that from the start of this rant.  I will not mention organization names nor will I recommend that you change the wording on your emergency jewelry.  Hear what I have to say and make your own decisions.

A major organization as well as a major manufacturer of emergency jewelry recommends the following wording on bracelets:

ADRENAL INSUFFICIENCY

NEEDS STRESS DOSE CORTICOSTEROIDS

WTF?!  How can a person get help from a Good Samaritan or anyone else for that matter with this information?  An EMT or paramedic might have the capability of looking up "ADRENAL INSUFFICIENCY" to help him/her decode the "NEEDS STRESS DOSE CORTICOSTEROIDS".  Even if they can, you're still hosed.  EMTs in most states are not permitted to inject you with your own injection kit even if you have it on your nearly dead corpse.  I believe paramedics are allowed to give shots.  Most doctors don't exactly know what "ADRENAL INSUFFICIENCY" entails let alone the proper emergency protocol.  A passer by who finds you on the street might think, "Adrenal insufficiency, didn't JFK have that?"  It will mean nothing more to them beyond that or they might think you don't make adrenaline (a reasonable assumption).

Let's take a look at the vague and dangerous nature of 

"NEEDS STRESS DOSE CORTICOSTEROIDS".  

Here is a scenario:You have adrenal insufficiency and you carry your injection kit in your purse.  You are wearing your emergency bracelet with the recommended wording.  You are driving a car and your friend is sitting next to you.  Someone runs a red light and hits your car.  You are drifting in and out of consciousness.  Your friend looks at your bracelet and knows you need a shot if you're in an emergency situation.  She rifles through your bag to find the "CORTICOSTEROIDS" but all she can find is Solu-Cortef!  She nervously makes the jump in reasoning and decides to give you the shot.  Crap!  How much is "STRESS DOSE"?  Under what conditions should she give you the shot?  She's mistakenly afraid the medicine in the syringe will kill you if she gives it to you under the wrong circumstances or in the wrong amount.  She decides to wait until the ambulance arrives to have them give you a shot.  They arrive and refuse on legal grounds,, EMTs in your state are not allowed to give injections.  Now, you've been without cortisol and unconscious for twenty minutes and still need to be transported to the hospital.  You arrive at the hospital twenty to thirty minutes after the accident.  In this time, your blood pressure is plummeting, blood sugar is plummeting, potassium is rising to dangerous levels and your body is shutting down.  You are admitted to the ER.  ER docs don't see "ADRENAL INSUFFICIENCY" very often and will have to look up the emergency protocol since they know that "CORTICOSTEROIDS" is a wide category of steroids.  They pick Solu-Medrol since it's on hand and give you plenty of that.  Sure, Solu-Medrol will be OK but it takes much longer to kick in.  It does not contain enough mineralocorticoid properties to get your BP up.  The ER docs gave you a "STRESS DOSE CORTICOSTEROIDS" and do whatever they do to get BP up.  The ER docs think they did everything right but since there are no mineralocorticoids in Solu-Medrol, your potassium gets dangerously high and you're at risk for a heart attack.

Perhaps this scenario is riddled with inaccuracies.  Perhaps not each and everyone of these things would happen to one person.  With my experience with health care, most of these things probably could happen depending upon the circumstances.  Do you really want to risk it??

If the emergency jewelry had been specific and accurate in its instructions, your friend would have given you the shot and kept your BP up, BS up and your ICE person would know what was going on.  The friend could have someone to talk to and reassure her that she was taking the right steps.  Your other injuries would have been attended to sooner and more efficiently and your ICE person could be at the hospital waiting for you.

Here's what I like on my bracelet:

ADRENAL INSUFFICIENCY

UNCONSCIOUS OR VOMITING

100 MG SOLU-CORTEF IM

ICE PXXX XXXXX

307-xxx-xxxx

• The disease is clearly stated
• The situations where I would not be able to talk, spelled out
• Exact amount of the type of med I need made clear for those who will find my injection kit and know I need it used on me.  
• ICE=In Case of Emergency, my husband's name and number

So, you're going to say, "All the info someone would need is in my injection kit."  Well, do you really think that if you need a shot NOW, someone's going to sort through your injection kit and its literature to determine what's important and what's not?  No, that's not realistic. What if they can't even find the injection kit?  What if they don't know that it exists and they need to find it?  If they call the ICE number, the ICE person could give instructions  

All the information that someone, anyone, would need to save your life should be clear and unambiguous.  If the Good Samaritans are scared or cautious about helping you, at the very least, they might call the ICE person who could help them through your crisis or get that person to come give you the shot.

Clearly stating what you need in an emergency situation on your medical emergency jewelry is your responsibility.  If you are fine with the calculated risk of the ambiguous instructions, "NEEDS STRESS DOSE OF CORTICOSTEROIDS".  Don't go changing!  I take a lot of calculated risks and this is NOT one of them.  I don't need to die or worse yet, get brain damage from low blood sugar, because someone didn't have the tools to help me.  I feel that better wording on the emergency jewelry is a necessity in my life and worth deviating from the "recommended" wording so I can stay alive in the event of a crisis or emergency or accident.

Rant: Cortisol dosing is flexible, death is irreversible

If you are conscious, not nauseous and can wait twenty minutes for the pills to kick in, swallow your pills.  Take an emergency dose of 100 mg of hydrocortisone or even more.  Some of the effectiveness of hydrocortisone is lost when you digest it and process it to go from oral to the blood.

Why?

Injecting cortisol, especially if you do it regularly, can lead to avascular necrosis of the hip and shoulder joints.  If it's unnecessary to inject steroids, don't.

If you need hydrocortisone quickly and you are not nauseous, put the pills under your tongue and let them dissolve.  This is called taking hydrocortisone sublingually. The hydrocortisone will get into your bloodstream quickly.  Rinse  your mouth and brush your teeth to avoid getting thrush of the mouth.

If you are nauseous, have vomited twice, feel faint, have dangerously low blood pressure, have been in an accident, are losing blood or have had an emergency, give yourself (or have someone else) give you the damned shot.   

Realistically, what are the risks of injecting 100 mg Solu-Cortef?  Your blood sugar might go high.  You can and have done that by drinking soda*.  You might be a little jittery.  You might get irritable.  I can guaranty you that if you think you need a shot and did it, you were irritable in the first place.  No one (except Drama Queens and people with Munchhausen's) injects for fun.  If you feel like you're in a bad enough place to consider a shot, just do it.  You don't want to end up dead.

Let's get back to taking hydrocortisone (HC) orally.  I think many of us, myself included, try to hold out on taking extra HC when we're not feeling well.  There's that guilt factor of "what if I'm taking too much" as well as the stupid brainfog which makes you think, "Oh, it's not so bad."  These are very stupid reasons for not taking enough HC when you need it.  If you think either of these stupid thoughts while simultaneously thinking about whether you should take more HC.  Go get the HC and take 10 mg.  If it's too much, skip, delay or make your next dose smaller.

What is the #1 risk of a crisis?  Death.  Death is irreversible.  What can keep you from a crisis?  Hydrocortisone or Solu-Cortef.  If you take too much, it will be more or less out of your system in eight hours.  Cortisol dosing is flexible.  You can make mistakes and learn from them.  You can make changes from minute to minute and day to day.

Be kind to your body.  Give it the raw materials it needs to keep you from crisis.  Don't skimp on cortisol because you're not sure if you're sick enough for more.



*Dave, you said "big slab of chocolate cake"

Rant: Get a prescription for 100 mL Solu-Cortef Acto-Vial and needles if you don't have one! TODAY!!!!!!!!!!!

If you've been diagnosed with adrenal insufficiency, you MUST have a 100 mL Acto-Vial of Solu-Cortef and the appropriate needles.  If your doctor refuses to prescribe this for you, he is the biggest idiot on the planet.  Without functioning adrenals, YOU WILL DIE if you go into crisis and it's untreated.  Sure, you might think, "I'll just call 911."  DON'T BE STUPID.  EMTs in most states do not carry Solu-Cortef and can't give you a shot you give them.

Have Solu-Cortef on hand.

Inject before going to the ER or calling 911.

If your doctor won't prescribe 100 mL of Solu-Cortef, ask him what the hell he thinks you will do with it that's nefarious.  Shoot up for fun?  Yeah, everyone wants to get fat and irritated.  Not.  Basically, he thinks you're an idiot or he's a freaking idiot and knows nothing about adrenal insufficiency.   Print out the abstract below or better yet, get a copy of the paper in its entirety, and give it to him and ask for a prescription.

If you don't have a prescription, email this to his office today and ask for one.

Adrenal crisis in treated Addison’s disease: a predictable but under-managed event
Katherine White and Wiebke Arlt1
Addison’s Disease Self-Help Group, PO Box 1083, Guildford GU1 9HX and 1School of Clinical and Experimental Medicine, Centre for Endocrinology, Diabetes and Metabolism, University of Birmingham College of Medical and Dental Sciences, Edgbaston, Birmingham B15 2TT, UK (Correspondence should be addressed to K White; Email: kgwhite@addisons.org.uk)

Abstract
Context: Adrenal crisis is a life-threatening event that occurs regularly in Addison’s patients receiving standard replacement therapy. Patient reports suggest that it is an underestimated and undermanaged event.
Objective: To assess the frequency of adrenal crisis in diagnosed patients and to understand the factors contributing to the risks of adrenal crisis.
Design: We conducted a postal survey of Addison’s patients in four countries, UK (nZ485), Canada
(nZ148), Australia (nZ123) and New Zealand (nZ85) in 2003, asking about patients’ experiences of
adrenal crisis and their demographic characteristics. In 2006, a shorter follow-up survey was
conducted in the UK (nZ261).
Method: The frequency and causes of adrenal crisis were compared across both surveys. Demographic data from the 2003 survey were analysed to establish the main variables associated with an elevated risk of crisis.
Results: Around 8% of diagnosed cases can be expected to need hospital treatment for adrenal crisis
annually. Exposure to gastric infection is the single most important factor predicting the likelihood of
adrenal crisis. Concomitant diabetes and/or asthma increase the frequency of adrenal crises reported
by patients.
Conclusion: The endocrinologist has a responsibility to ensure that Addison’s patients have adequate
access to life-saving emergency injection materials and repeated, practical training sessions in how to
use them,while the general practitioner plays a vital role as in arranging prompt emergency admissions.
European Journal of Endocrinology 162 115–120

Even better, get a prescription for 8 mg Zofran ODT so that you can avoid nausea and the inability to swallow pills orally.  If your doctor won't prescribe a few of these to someone for whom vomiting can be life threatening (depleting sodium, putting potassium over range and then giving you a heart attack) he's really, really dumb or really, really hates you.  In either case, find a doctor who wants you to live.  This statement is right from the abstract above "Exposure to gastric infection is the single most important factor predicting the likelihood of adrenal crisis."

Review
GET PRESCRIPTIONS FOR THE FOLLOWING:

• 100 mL Solu-Cortef Acto-Vial
• Needles (depends upon your state)
• 8 mg Zofran ODT.  Make sure it's ODT!

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: It's not OK to have a poor quality of life with adrenal insufficiency

Every study I've read regarding adrenal insufficiency (AI) and quality of life (QOL) states that we all feel like shit and that's the status quo.  Our doctors might (but probably don't) read these studies and believe them.  Most doctor's experience with AI patients is that they are elderly, on long term steroids or transplantation recipients.  These are people who generally don't feel well because of other issues and may be on huge doses of steroids to further exacerbate their poor QOL.  Your doctor probably has decided that people on steroids feel terrible.  You will have to live with feeling terrible.  Get a therapist to feel better.

No, not true.  Living with feeling terrible or getting a therapist is not the whole answer to feeling better.  Learning about AI and how your doctor is failing you is the best way to feel better.  A therapist may help you adjust mentally to AI.

Generally (yes, you might be the exception), undiagnosed AI is a slow slide toward death.  Symptoms of AI are so subtle that we look healthy (tan!  thin!  low blood pressure!) and very lazy until we are in a hospital bed with people wondering what went wrong.  If your medical care is even moderately decent, you will be given 100 mg of Solu-Cortef and saline IV until you are hydrated, BP comes up and color returns to your face.  You will be discharged with  a prescription for 20 mg of hydrocortisone per day and instructions to take 10 mg morning and night.  Find a good endocrinologist.  For the first time in months or years, you will actually feel OK, barely nauseous, no diarrhea for the first time in who knows how long.  You might even want to eat.  Coming from feeling like death warmed over, the improvement once you are put on hydrocortisone is incredible.

For most doctors and patients, this improvement will be enough to maintain treatment with 20 mg of HC per day.  Once the patient is able to reenter life, bad shit happens.  All the signs of under replacement are ignored.  Nausea, vomiting, diarrhea, low blood pressure, low blood sugar and overwhelming fatigue are completely acceptable because your doctor said taking 20 mg of HC per day was what you needed to do.

Here's where you or an advocate for you comes in.  It's NOT OK TO FEEL AWFUL AND SUFFER FROM THE SAME SYMPTOMS OF ADRENAL INSUFFICIENCY THAT YOU DID BEFORE BEING DIAGNOSED BUT TO A LESSER EXTENT.

1. If you are showing symptoms of under replacement, you are under replaced.  It's unnecessary and much more dangerous to be under replaced consistently than slightly over replaced once in a while.
2. A lot of doctors do not know that the adrenals produce more than cortisol.  Other hormones need to be replaced in addition to cortisol.  Your body wouldn't have made them in the first place if it didn't need them for something!  Yes, women, you need testosterone.  Do you like having a heart muscle that beats?  Testosterone keeps your heart muscle and bones strong.
3. Make sure your Florinef dose is right.  Low sodium is a major factor in osteoporosis (and low BP).  Hyponatremia-induced osteoporosis  All these years that your doctor has tried to guilt and shame you into taking less and less HC to avoid osteoporosis is misguided and probably detrimental.  Make your doctor focus on sodium.
4. Do you have other diseases?  Have you even been tested properly?  Probably not.

Unfortunately, it's too hard for many people to take responsibility for their health.  I do know how hard and stressful it can be to find a doctor. Research is time consuming.  The hardest part of feeling well is believing that you actually deserve to feel well.  Adjusting to a crappy new normal is fine if you are happy with it.  Don't be happy with crappy quality of life  Adjust to a new normal that feels good most of the time.  Take enough meds to live life well.  Research.  Learn.  Get your test results.  Don't settle for feeling like shit.  It's not OK.  

Shameless self-promotion coming up.  Join the FREE Addison's Support Forum if you can't seem to get better on your own or want support or want to talk about the frustrations of adrenal insufficiency.  If you don't want to be on a semi-private forum, I offer my advocacy services to help you understand adrenal insufficiency, help you understand your results and/or help your doctor have the information she needs to treat you properly.