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 23, 2016

Worst treatment plan ever

I just met with a client.  An intelligent, lovely, young woman who is struggling with many physical symptoms.  She has been attempting to improve her quality of life for five years.  She has seen ten or more doctors.  In an effort to discover what was wrong, she went to a very well respected medical institution.  She presents with nearly every symptom of adrenal insufficiency and was diagnosed with POTS.  Her 9 am cortisol was 8.  She was given Florinef and the information below.


When I read this "treatment plan", I cried.  I cried for her and I cried for me and I cried for all of you (don't get the wrong idea, I didn't sob for hours.  It was a few tears for each of us) who have been mistreated by physicians who have "great" reputations and very little knowledge.  

This woman was nearly at the point of "definitive adrenal insufficiency" with her cortisol results but was not given an ACTH stimulation test.  She was told to meditate and read for 20 minutes a day.  This was in 2015, we are nearly to 2017.  So much life wasted because a doctor only looked at lab ranges and had no idea about the circadian rhythm of cortisol in the human body.  No amount of reading inspirational crap nor meditation has ever been documented to cure adrenal insufficiency.  Worst treatment plan ever.

Saturday, October 8, 2016

Why you need an injection kit-if you don't have one, read the bottom of this post

Image result for Injection actovial

The other day, I had a real life experience that reminded me why people with adrenal insufficiency need an injection kit.  Negligent doctors will not prescribe Solu-Cortef and the needles (in some states, prescriptions are needed for the needles).  It is standard protocol and life saving to have an injection kit on hand at all times.
 "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."  Adrenal crisis in treated Addison's Disease: a predictable but under-managed event, Katherine White and Wiebke Arlt
Here is what happened to me.  I went to sleep on Thursday night after spending some of the day in preparation for the approaching hurricane.  Not a big deal, I was not stressed about the hurricane nor the preparations.  I awoke twenty minutes later and thought, "OH SHIT, I'M GOING TO THROW UP."  I have not thrown up for four years, since I quit drinking.  I knew this was serious.  I immediately put an 8 mg Zofran ODT in my mouth and grabbed a throw up bowl.  I threw up immediately.  I knew it was not over.  My husband got my injection kit and began studying the directions.  In the mean time, I contacted a fellow adrenal insufficient person and then threw up a couple more times.  Stupidly, I was uncertain as to whether I needed the injection or not.  The answer was a resounding, "Yes!"  I hate shots so I tried to put HC under my tongue but it didn't make me stop throwing up.
 "...gastroenteritis is a particular dangerous cause of adrenal crisis, oral hydrocortisone is frequently insufficient to reverse impending adrenal crisis, current education of patients is often not sufficiently effective, unwillingness to call for help...carries a huge risk, and at a certain point in time damage from adrenal crisis will become irreversible no longer responding to medical measures."  Adrenal Crisis, Bruno Allolio
Here is where things went wrong:
1)  My husband didn't know what to do and felt the need to do everything perfectly as opposed to quickly.  He was VERY slow to give the shot
2)  I was hesitant to receive a shot despite its lifesaving qualities
3)  I had several Acto-Vials that were expired and/or battered.  It took several tries to find a vial that would work properly

I was given the shot by my husband with coaching from the AI friend.  Her advice, "Just stick her now!"  I didn't feel better immediately but the vomiting did stop after about an hour.

This is the part I want you to read if you have adrenal insufficiency and don't have an injection kit.

Hurricane Matthew was to take a direct hit on Vero Beach, Florida 2:00 to 4:00 am.  I began the vomitfest at about 11:00 pm.  If I had not had an injection kit, there was no way in hell that my husband could have gotten me to the hospital nor was there any way for EMTs to come to my house.  I could have died waiting for the opportunity for things to clear up enough and roads to be open.

If your doctor has put you in the position of dying by refusing to prescribe an injection kit, find a new doctor or find the White and Arlt study that I quoted above and take it to your doctor.  Don't die just so your doctor can be "right" that you do not need an injection kit.  You do need an injection kit.  It could save your life.

An injection kit should include:

  1. 100 mL Solu-Cortef Acto-Vial
  2. 21 gauge needle
  3. 25 gauge needle (length will depend upon how much fat you have on your leg)
  4. Zofran ODT (I can't stress the ODT enough)  ODT, ODT, ODT
  5. Alcohol pads
  6. NADF emergency crisis form
  7. Instructions on how to give the shot are vital.  I like the NZ Addison's injection directions
  8. A few hydrocortisone pills and some salt pills




Monday, August 8, 2016

RANT: Diagnosed but not treated is malpractice and trying to kill people

This is going to be short and sweet.

Recently, someone came to me and told me they were diagnosed with primary adrenal insufficiency but sent home to wait for the results of more blood work.

THIS IS BULLSHIT!

Symptoms, low sodium, high potassium, a random cortisol draw of less than 1 (it was not 8 am but it was NOT midnight either) and hyperpigmentation.

The proper protocol would have been to draw blood and test all basic adrenal hormones (give an ACTH stim test immediately if available) give a bolus of Solu-Cortef, send the person home with a prescription for hydrocortisone to be taken in divided doses and a somewhat high dose for the first week or so, a prescription for Solu-Cortef and Zofran and the NADF emergency protocol.

I'm actually laughing while I write this.  Doctors have NO CLUE.  They will send any other person home on massive doses of steroids for almost no reason but not send someone who might DIE or become BRAIN DAMAGED from low blood sugar due to lack of cortisol home with nothing.  Undiagnosed people can also have a HEART ATTACK from the classic symptom of low sodium and high potassium.  On two occasions over the last year, my husband (who does not have AI) was sent home with as much steroid as I would take in a month "as an experiment" "let's see if things improve".  He couldn't sleep and felt worse.  Experiment over.  In someone who is symptomatic for AI and has test results to indicate AI is a possibility, a week of steroids will NOT HURT.  If nothing else, the trial will alleviate the symptoms, keep the person alive and the experiment will have been a success.

Is there any disease that presents with low cortisol, hyperpigmentation, low sodium/high potassium and weight loss that's helped by physiological doses of steroids?  I think not.

A doctor who does not send a person home with the following is comitting malpractice:

  • A bolus shot of Solu-Cortef
  • Rehydration
  • A prescription of HC and instructions on how to take it
  • Emergency instructions from the NADF
  • Prescription for Solu-Cortef and Zofran and instructions on how to use it
  • A follow up appointment three days later to go over blood work
How can I/we get this life saving information out to doctors?  Most never have a patient with AI.  Why should they learn anything?  Thinking along those same lines, why would they not reach out to a physican who can help the patient quickly and better?