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, 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.

Why?

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

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

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

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

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

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

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



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

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: 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!

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.