Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Monday, July 27, 2015

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.

Friday, July 24, 2015

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.




Monday, July 20, 2015

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.