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.

Wednesday, November 18, 2015

The doctor tells me I should only be taking 20 mg of hydrocortisone, I feel like I need more. Why?

Doctors have very little experience with adrenal insufficiency.  It's an uncommon disease.  All they can do is use common sense and go by studies.  Studies say two very distinct things about people with adrenal insufficiency.  

I believe whole heartedly that most of us need more than 15 - 25 mg of hydrocortisone a day to feel well.  I will explain why.

·   Recommendations/studies are flawed  
  • Recommendations for 15-25 mg of HC/day are based on a male's endogenous cortisol production.  Cortisol basically squirts out of the adrenals and into the blood in healthy MALE people at a rate of about 10-15 mg of HC/day (women are generally excluded from medical studies yet we are forced to use the same data as men).[The amount of endogenous cortisol production varies depending upon the study.  It's generally calculated upon surface area of the body.  I find it hard to believe that I, someone who runs to teach a spin class and runs home (half marathon), walks the dog, cleans the house and then runs around like an idiot just for fun and is 5'2" tall and built like a pony would make the same amount of cortisol as someone who just lays on the couch all day. From Medscape "...equivalent to 5·7 mg/m2/day or approximately 9·9 mg/day" 5 men and 7 women is a pathetic sample size.  I'd also say for the other study used that had 5 pubertal males, it's probably not applicable to me.  Sometimes I smell  like a pubertal boy but as a premenopausal female, I have few similarities. EDITED 11/24/2015 for clarity, my intent was only to give a ballpark figure  for endogenous cortisol production]  Yay for normal people!  Our bodies don’t do that.  Boo!  We have to digest the HC and a lot is lost in first pass metabolism under the best of circumstances.  Bigger is not always better.  Which means, under the best and most ideal of circumstances, we would need a little less than 30 mg of HC to get the equivalent of 15 mg of endogenous production.
  • o   FDA allows a 15% variation in strength of meds. See page 5B.  Think about that, you get one brand that’s 15% stronger with one prescription and 15% weaker with the next, you’re going to have very different HC needs!  I wonder what strength HC formulation was used for each study?
  • o   We might have digestive issues that prevent us from getting the full “bang for our buck” due to low stomach acid or binders in the meds or celiac or Crohn’s.  Low stomach acid can be caused by under replacement of HC as well.
  • o   We might be taking things that interfere with absorption likePPIs.  PPIs are the Devil, if you're on them, talk to your doctor about getting the hell off of them.  Start some probiotics.  Allow your gut to work.
  • o   Think about the populations upon which the studies were conducted.  Who has time to sit around in a hospital and get his or her blood tested?  Disabled people, elderly, people who don't do much if you're "doing" you don't have time to participate in an all day study.  These people might not be in the best of health and have a very low expectation of what their meds should do for them.  Most studies about people with AI say that they have a low quality of life.  Great!  The expectation for dosing studies is that you can remain upright on the day of testing.  Who cares if you feel HORRIBLE ALL THE TIME.  You’re upright and have a pulse.  Successful study!!  Not.
  • o   If you’re in a hospital getting your blood tested to determine the right amount of HC, are you chasing kids?  Doing laundry?  Hauling stuff from your car to the front door in the snow while making sure kids don’t get hurt?  Walking the dog?  Exercising?  No, you are reading a magazine, eating and chatting.  When was the last time you did that?  Probably about a decade ago!  If you’re in a hospital getting your blood tested all day, you’re going to use less HC than on day or period of your life that you are busy no matter what.
  • o   Speaking of periods, I don’t believe there are many studies on women and their physiology.  It’s too complicated and throws too many factors into the mix.  They usually study men or menopausal women and assume women are just men without a penis and balls.
  • o   Horrifying dosing schedules in studies.  You wouldn’t believe how they dose HC in the studies and then say it’s too much or too little.  30 mg/day with 20 in the am and 10 before bed.  5 mg, 3x a day.  UGH!  Of course people will report that they feel horrible and over/under replaced!

·  Known inflammatory diseases that are ignored
  • o  Have another disease besides adrenal insufficiency?  Your doctor might say,
    "Oh, you're on steroids, you don't need more."  Ummmm, yes, you might.  The steroids we are on as people with AI are sometimes enough to keep us going from day to day but not enough to fight rheumatoid or Lupus inflammation.
  • If you're hyperthyroid, you will probably need more HC than someone who is not.  Simple test.  Are you showing signs of being undiagnosed?  You need more HC.
  • If you'v recently increased thyroid meds and you're showing signs of adrenal insufficiency like when you were undiagnosed, you need more HC.  You know how you fight that?  When you increase your thyroid meds, take extra HC for a few days.  Easy.
  • Thyroid controls metabolism.  If your metabolism is increased, you will become hypoglycemic more quickly.  Your body uses blood sugar to power itself.  The brain needs blood sugar to run it.  Hydrocortisone is used in anabolism or creation of glycogen (EDITED 11/24/2015 for clarity, my intent was not to imply that cortisol breaks anything down)  the  glycogen/blood sugar.  Not enough hydrocortisone=low blood sugar=inability to power the BRAIN (among other organs and muscles)

Unaddressed deficiencies or unoptimized meds
o   Deficiencies, we can only know what we are deficient in if it’s tested and pinpointed. Some people have doctors who REFUSE to test or prescribe hormones in which we are deficient.  DHEA, testosterone, progesterone, thyroid.
o   Sometimes it’s not possible to optimize or treat deficiencies until other things are worked out (think thyroid and DHEA)
o   Hell, doctors sometimes blow us off with routine tests.  My guess is that a)  they have a god complex and if they are presented with something they don't know (DHEA-S needs to be tested) they get mad and instead of being grateful that you want to feel well, see themselves losing a boat payment because you might not be sick anymore.  b)  they are scared to get results that they might have to put some effort into understanding.  It's not cost effective for a doctor to understand one, nondiabetic's situation.  Diabetes is the cash cow.  You, adrenal insufficient patient are a time sucking burden.  No testing means no need to interpret results.   

·     Bottom line
o   It all comes down to what works for you.  You need to be on the lowest possible dose for you.  The dose has to be one that keeps you as asymptomatic as possible.  Your body can’t read the flawed study that says you should take 20 mg of HC/day and be loving it and happy about it!

Monitoring of glucocorticoid-replacement quality is hampered by lack of objective methods of assessment, and is therefore largely based on clinical grounds.
Adrenal Insufficiency, 2003 Arlt and Allilo

*Despite this statement by Arlt and Allilo whom I admire to the moon and back, I think the vast majority of adrenal insufficient patients are NOT optimized.  There are precious few of us who are able to be optimal.  Those of us who are optimized do all the leg work and have doctors who will work with us.

Thursday, October 8, 2015

Rant: Morality (or lack of), ethics (or lack of) and diagnosis (or lack of) in adrenal insufficiency

Is it ethical for a doctor to make a patient wait until 90% of an organ (in this case the adrenals) has failed?  Is there any other organ that we are forced to wait to start treatment?  Picture this:  You dad's had a heart attack and only has 50% function of his heart remaining.  Does the doctor tell your dad to go to a therapist and talk things out because his "depression" is making him tired not the 50% of function he's lost?  Does the doctor tell your dad to come back when he's only got 10% function, intractable diarrhea and huge blood sugar issues or ends up in the emergency room because he can't take care of his day to day life.  Somehow, I doubt it.

Too many times in the last month I've seen people who have adrenal insufficiency but his or her doctor will not be responsible for diagnosing that person with adrenal insufficiency.  It's pathetic, sad and a failure of our medical system.  In my opinion, it's immoral and unethical for a doctor to declare that a patient does not have a disease in which the doctor has no expertise nor comprehension.  Once again, it becomes the undiagnosed patient's fault for showing up at the doctor's office when the doctor can't take the time to understand the disease that's the best fit for the symptoms, history and test results.

These people all had failing ACTH stimulation tests but not quite failed enough for the doctor's barbaric interpretation.  Each and every one of the people I'm talking about basically were denied diagnosis because the doctor was only capable of seeing that one number on the test didn't have an "L" next to it.  They completely ignored the diagnostic symptoms like orthostatic blood pressure, low sodium, high potassium, hypoglycemia, hypercalcemia and hyperpigmentation.  These are generally symptoms that a patient can't fake.  Nausea, vomiting, diarrhea, aching body and joints, debilitating fatigue and lack of immunity to illness are the others that we are assuming to be faking.

I will admit, I have met someone with adrenal insufficiency and Munchhausen's.  Maybe she didn't have AI at all?  She definitely had Munchhausen's.  I knew one woman who didn't actually have AI, was on hydrocortisone for years and then was tapered off drugs for adrenal insufficiency and lives a good life.  The point is that mistakes in diagnosis of adrenal insufficiency are few and far between.

By the time a person gets to a doctor thinking he or she has AI, the person has been told he or, usually she, is depressed, tanning, anorexic, has IBS, has chronic fatigue, has fibromyalgia and/or using too many laxatives when none of this is actually true.  He or she has been through five to ten medical professionals who do not believe that what the patient is showing and telling and presenting to the doctor is true.  As a patient who wants help it's degrading to be told time and time again that we are lying, that the problem is in our head or to be given a junk diagnosis.  We go to doctor after doctor because we want to life a life that means something.  We want to live, period.

I believe a doctor has a moral obligation to believe his or her patient.  I believe a doctor should look at test results with a more critical eye.  I believe a doctor should look further into diseases that fit the problems presented rather than saying, "Let's get you some mental therapy and eat more salt to get your blood pressure up.  Go exercise."  "Have you tried Prozac?"

Is it ethical for a doctor to interpret a lab test for which he had done no research and has no expertise?  How can a doctor look at a test that he doesn't understand and tell you what the results mean?  Blindly reading a lab report that's not marked with "L" in the correct column is something a grade school child can do.  Yet a doctor can look at a person with dark circles under her eyes, weight loss, inability to spend time out of bed when not working and tell her that the most obvious solution to the problem is not valid because the LAB didn't put an "L" in the column.  

Is it ethical for a doctor to ignore the physical symptoms?

Is it ethical for a doctor to allow the lab to do the tests wrong and interpret the results based on improperly executed tests?

Is it ethical to pin a junk diagnosis on someone because the person is not presenting with something the doctor has seen before?

Is it ethical for a doctor to not know that ACTH, DHEA-S, Sodium/Potassium, orthostatic blood pressure, renin and antiadrenal antibodies are integral in determining the full picture and degree of adrenal insufficiency?

Doctors who don't know about adrenals should find their patients doctors who do.  It seems like the right thing to do to be sure that a person is properly evaluated.  It seems like the moral and ethical thing to do.  Death is permanent and death is a side effect of undiagnosed adrenal insufficiency.

Monday, September 21, 2015

Rant: Bigger is not always better, Part 2

Part 2

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

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

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

2)   I wake up at 5 AM so "noon" is 10 AM for me
3)  1/3 of the daily dose should be after noon and before 4 or 5 PM
4)  Based on a 5 AM wake up, "noon" of 10 AM, 1/3 of my daily dose should be between 10 AM and 2 or 3 PM
5)  I take 45 mg of hydrocortisone per day split 10/10/10/10/5 according to the Effect of Dose Size the yield of my dosing is 26.35 mg [(5.7*4) + 3.55]
6)  To maintain the approximate yield of 26.35 mg per day while lowering the actual oral dosing, I'm going to take 40 mg split in two 10 mg doses and four 5 mg doses for a yield of 25.6 mg cortisol [(5.77*2)+(3.55*4)].  I will be cutting my overall hydrocortisone dose by about 1 mg HC.
7) Schedule will be as follows:
5 AM 10 mg HC
7 AM 5 mg HC
9 AM 10 mg HC
11 AM 5 mg HC
1 PM 5 mg HC 
3 PM 5 mg HC
8)  Next steps for me.  Set phone alarms and label accordingly.  Refill pill containers.

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

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

Friday, September 18, 2015

Rant: Bigger is not always better

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

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

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

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

  1. "The elimination half-life was affected by dose size,..."
    1. 5 mg 1.2 hours (72 minutes)
    2. 10 mg 1.3 hours (78 minutes)
    3. 20 mg 1.5 hours (90 minutes)
  2. "The drug is absorbed rapidly into the circulation, achieving peak plasma concentrations within 1 hour."
  3. "An overall five-fold increase in the tablet dose (10-50 mg) resulted in a 2.1 fold increase in mean C max [peak plasma concentration]..."
  4. "A number of explanations was originally proposed to account for the nonporportional relationship between circulating hydrocortisone levels and the size of the oral dose."  The researchers eliminated several reasons and came up with "An increased free fraction during first-pass is likely to permit greater hepatic clearance, and to decrease the systemic availability of unchanged drug."  My interpretation:  your liver can only process so much hydrocortisone at one time.
  5. "...the systemic availability of hydrocortisone is..."
    1. 5 mg dose 71%  
    2. 10 mg dose 57%
    3. 20 mg  dose 56%
    4. 30 mg  dose 40%
    5. 50 mg  dose  40%
    1. You take a 5 mg dose and get 3.55 mg of cortisol out of it*
    2. You take a 10 mg dose and get 5.7 mg of cortisol out of it*
    3. You take a 20 mg dose and get 11.2 mg of cortisol out of it*
    4. You take a 30 mg dose and get 12 mg of cortisol out of it*
    5. You take a 50 mg dose and get 20 mg of cortisol out of it*
What can we, people on hydrocortisone, take away from this?  Bigger is not better.  Taking a 50 mg dose of hydrocortisone will NOT give you ten times more cortisol circulating in your blood.  Take smaller doses, more often to get the most out of your hydrocortisone dosing. 

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

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

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

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

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

Bigger is NOT always better!

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

Tuesday, September 8, 2015

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.

Monday, August 31, 2015

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 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.
  • 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;jsessionid=B8A9D5FA13A9A47553678ED64622BC4A?year=2015&index=16&absnum=2911

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.

Monday, August 24, 2015

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,, or  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.

Monday, August 17, 2015

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:


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 

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:


  • 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.

Monday, August 10, 2015

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.


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"

Monday, August 3, 2015

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:

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."


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

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.