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.