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 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?