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.
Showing posts with label Crisis protocol. Show all posts
Showing posts with label Crisis protocol. Show all posts

Monday, August 31, 2015

Rant: Think your surgeon knows what he's doing with hydrocortisone dosing for surgery, think again



http://www.asaabstracts.com/strands/asaabstracts/abstract.htm;jsessionid=B8A9D5FA13A9A47553678ED64622BC4A?year=2015&index=16&absnum=2911

A1219
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 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:


ADRENAL INSUFFICIENCY
NEEDS STRESS DOSE CORTICOSTEROIDS


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 
"NEEDS STRESS DOSE CORTICOSTEROIDS".  

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:

ADRENAL INSUFFICIENCY
UNCONSCIOUS OR VOMITING
100 MG SOLU-CORTEF IM
ICE PXXX XXXXX
307-xxx-xxxx

  • 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.

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 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.








Monday, November 12, 2012

How to handle and Addison's emergency

This post assumes you already have an emergency injection kit at your disposal.


  • Know your "low" cortisol symptoms, know what they are well ahead of time!
  • If you feel like you are faint or about to vomit, GIVE YOURSELF AN INJECTION
  • Make sure you take spare HC and meds with you, hospitals are not known for giving HC on time if you have to stay overnight.  They will wait until rounds to give you your morning HC which could lead to unnecessary low blood sugar and low cortisol symptoms.  Take your own HC as needed
  • Call 911 or get a ride to the ER 
  • Be sure to take your NADF emergency protocol so the ER knows what to do (most have absolutely no clue, really)
  • Insist on IV fluids, antinausea meds and get more Solu-Cortef if needed

Notice what I'm saying here, you must inject before going to the emergency room.

Why?

You must inject prior to going to the ER because the delay between the call to 911 and when you finally see a doctor could be too long.  The vast majority of ambulances in the US are unable to carry Solu-Cortef.  They are unable to inject you even if you have it laying on your chest with directions.  Because an Addison's crisis is so little known and so little understood, the gravity of your situation will most likely go unnoticed.  YOU CAN DIE.

What happens if I give myself an injection unnecessarily?

Most likely, if you're thinking you need an injection, you need it.  It won't be unnecessary.  If you really don't need it and you're doing it for fun, you will end up out one injection kit, with temporary high blood sugar and you'll probably feel irritable.  If you do it all the time, inject when not needed, you will probably end up with type 2 diabetes and needing a hip or shoulder replacement.  You'd have to have a really stupid doctor to prescribe so many injection kits and not look at the cause of your needing injections all the time (whether it's mental or physical).

To shoot or not to shoot?

If at all possible, take your HC orally.  There's NO REASON to inject yourself before a dental procedure or stressful trip to the bank.  If you break a bone and don't feel nauseous (or whatever), TAKE YOUR HC ORALLY.  Frequently injecting HC can lead to hip and shoulder join necrosis.

Bottom line:  Inject on the way to the ER or as you're waiting for the ambulance.

Sunday, November 4, 2012

Rant: Why is adrenal insufficiency mismanaged?

It's been so long since I've ranted.  Hold on to your hat!

So many people, especially the undiagnosed and newly diagnosed ask me, "Why didn't my doctor know what tests to do?  Why didn't he* tell me X, Y or Z?"

It's incredibly simple.  Your doctor doesn't know.  Your doc doesn't know the tests, how to interpret them, what other hormones to check for or how to instruct you to take your meds.**

How could your know anything about AI?  The incidence of AI in the general population is 40-60 cases of AI per million.  That's not many people.  The chances of your doctor having any experience with AI are very small.  More than likely, your doctor might have had someone who became secondary because of steroid treatment for a different disorder (like lupus) or because of an organ transplant.  Let's give your doctor the benefit of the doubt, he's got FIVE AI patients out of hundreds of other patients.  FIVE.  How much time can he spend researching and reading about AI?  Why would he?  He learned a little blurb in med school, give the patient steroids once or twice a day, they will have a poor quality of life but they will live.  If your quality of life is slightly above poor, he's not going to try to do more.  You are ahead of the curve why should your doctor do more?!!  Numerous studies say that people with AI have poor quality of life.  If your quality of life is poor, well, that's what happens with AI and it's acceptable.  Why do more?

How to avoid being a mismanaged AI patient.

This is going to be so boring for some of you.  Sorry.


  • Learn about AI Adrenal Insufficiency & Addison's Owner's Manual
  • Insist on an injection kit.  If your doctor won't give it to you, he wants you dead and you need to find a different doctor.  IN MOST STATES, EMTS AND PARAMEDICS ARE NOT PERMITTED TO CARRY OR INJECT THE LIFE SAVING SOLU-CORTEF.  
  • Join a forum that fits your needs and provides support.
  • Replace all missing hormones in the appropriate order.
  • Test and retest for comorbid conditions.
  • Lose weight if you are fat and stop drinking all types of soda (OK, that's my personal bias)
  • Get 30 minutes of exercise every day of the week to maintain some semblance of health, get more exercise if you want to be healthier.

So you've done everything above.

Now you know your shit.  You've got the AI info down, you know what your hormone status is.  You need to educate your doctor.  Be kind, be thoughtful, hand him info to put in your "file".  If you take the nice approach and this dude is totally unwilling to discuss the benefits of physiologic dosing, DHEA, or the basics that will keep you from keeling over, stop right there and either fire him or back out of the room.  Get another doctor who treats you like a living, breathing, intelligent human.

Next!

  • Let's say you've found a good doctor.  
  • Make sure you get copies of ALL of your radiology reports and blood work.  Put them in a neat binder by date.
  • Read about AI, read, read.  Use reputable sources (medscape, pubmed, scholar.google.com).  Share the info on a forum. LEARN.  

IF YOU ARE THE EXPERT, YOU WILL SUCCEED!


*I'm not sexist.  Just using one pronoun instead of he/she.
**I'm SURE someone out there has a super fab doc that knows EVERYTHING and has done EVERYTHING right.  Please post his name, address and phone number in the comments section.  The very competent AI docs are few and far between.  If you're not comfortable posting publicly, post on my forum at www.addisonssupport.com or addisonssupport@googlegroups.com.

Sunday, May 2, 2010

Crisis

"Hydrocortisone is Life" Babs

If you've got Addison's, the above statement is absolutely, positively no exaggeration.

In my story about Fran dying from complications of Addison's, I mentioned crisis. Erin asked this question in the comments:


So do you Addison's folks think these "stomach bugs" people get are actually bugs/viruses? Or are they triggered/originate from heading into an Addison's crisis? I've done a ton of reading about people's experiences with crisis, and "stomach bug" seems to be the most common beginning of a crisis. Just wondering if it's actually a bug, or if it's just the first symptom of the crisis.
It got me thinking about the Addison's crisis. We act as if, wham-bam-thank-you-ma'am, we go into crisis with no warning what so ever. One minute perky and happy, the next minute passed out on the floor needing an ambulance. Realistically, I think the truth is somewhere in between.

In my case, my crisis was preceded by a migraine, too much alcohol, a two week stomach ache that I ignored or thinking that herbs and positive thinking (as opposed to antibiotics) were going to cure the feeling of peeing glass that was actually a kidney infection.

In each and every case, I knew a crisis was coming and probably didn't abide by the mantra, "Hydrocortisone is Life" and worked well within the detrimental boundaries of "Steroid Guilt". All it got me was an Addison's crisis and an expensive trip to the ER. I think if I had been rational, I would have doubled or tripled my HC as recommended by my mentor Wanda on several of the above occasions, and avoided the trauma and expense of the ER.

Signs of under replacement that can lead to a crisis:
  • nausea and/or vomiting
  • weakness
  • heavy arms and legs
  • fatigue
  • low blood pressure/head rushes upon standing
  • salt craving
  • joint and muscle pain
  • headache
  • craving salt
When you're not feeling well for any reason, stop being tough or worried about taking too much steroid. Double up and avoid a crisis and trip to the ER. If you can't hold down fluids, give yourself the damned shot and head to the Emergency Room!!

Thursday, April 8, 2010

Dying from "Addison's Complications" rant

I'm not actually sure what I'm going to say here. I've been pondering writing this post for about three months now. I'm really, really annoyed at certain organizations posting obituaries and saying "died from complications of Addison's" and giving no specific information. It terrifies me to think I could die from "Addison's complications" and not have any idea what these complications might be or how to avoid them.
I feel like the organizations and families of people who have died from "Addison's complications" are doing the Addison's community a HUGE disservice by frightening us when they could be enlightening and educating us, sparing other Addisonian's from untimely death or being frightened of these "complications".
A brief digression, I was on an Addison's Yahoo board and saw this quote,

"When I was first diagnosed with AD, my boss (a woman) said, "So you've got a disease that makes you tan and lose weight. And you want to fix this?""
I immediately emailed the poster, Fran Segerson, for permission to use the quote and wrote this post. I could tell she was a spunky, fun woman from our exchange!

Later in the summer, I read Frans obituary in an newsletter. When I eventually put together that the quote was from her and she was dead, I contacted her family to ask what had happened. Her daughter was kind enough to respond with the information below (she gave me permission to share the information) that helped clear up the ambiguous "complications" explanation.

"It appears Mom passed from Addison's complications. She was fine and then got a stomach bug while on vacation in Spain and i think she knew she needed to go to the hospital but didn't want to get in the way with the rest of her travelling party so she stayed back and probably just got really dehydrated. We unfortunately aren't going to know exactly what happened until they finish the results of her autopsy. They say it will take at least 2 years. It's so hard to not know but after discussion with her traveling companions and from living with her- i think it was what i stated. Sorry for your loss- i know mom was a great friend to everyone and a resource for lots of other Addisonians. Best of luck. Patti Wohl"
Also from Patti: Absolutely , use whatever is helpful... I moved back in about 5 years ago because when she did need help it seemed to be escalating faster than when she was younger. In fact the last few times she needed to go to the ER she got so dehydrated so quickly she started to lose her rational thought and it became a struggle to get her there, once hydrated she would thank me for getting her there and she would be back to her 30 year old energy and atitude for life( she was 63 but no one could have told her that)! My sister never saw her in distress and had no idea it could get that bad. Her doctor here is convinced that she passed from a coronary event brought on by dehydration. She had no heart issues at all. My mother would be so proud of you for doing what you are doing. She had said several times early on that she felt so alone with the Addisons but since the email groups ect.... She felt like an important part of a vital community.

April 22nd is the first anniversary of Fran's death. I think there's something that all Addisonian's can learn from her death, dehydration is dangerous and can kill you, go to the hospital when you need to, keep your injection kit in working order and don't be afraid to use it because too much cortisol is better than too little in an emergency (that's my contribution to the lesson).

Wednesday, March 17, 2010

Want more of your medical care! Yet another rant...

Have a good doctor for your family and your chronic conditions?

What makes a good doctor? A person that:
  • Looks at you and sees you
  • Cares when they ask, "How are you today?"
  • Is respectful
  • Educates him/herself about your uncommon condition
  • Listens to your concerns
  • Will dialog about your medical concerns
  • Is not too cool to look at information that you bring
  • Trusts your intuition about your body
  • Asks kindly if you think you you are depressed and trusts your answer
  • Will order reasonable blood work for your condition and other potential comorbid conditions to rule the conditions in or out or to establish baselines
What makes a bad doctor? A person who:
  • Has knowledge of your condition from thirty year old research and vague thirty year old medical school remembrances of the one hour during one semester where he/she learned that JFK had Addison's and how it was treated then
  • Refuses to write your scripts for slightly more med than you need so you can have extra in your purse
  • Refuses to write you a script for solucortef actovial if you have Addison's because, apparently, he enjoys being sued for malpractice!
  • Is an ass
  • Makes you feel like a hypochondriac
  • Refuses basic blood work
  • Makes you feel guilty about getting copies of your labs
  • Thinks you're crazy for bringing in enlightening information about your condition
  • Doesn't trust your judgement or intuition
When many of us go into the doctor's office, it's intimidating. We're left in a tiny, smelly, often windowless room for entirely too long with nothing to do but search through the drawers and steal pretty colored rubber gloves. Oh, did I say that out loud? We know that once the doctor comes into the room, he/she is already thinking about how fast he/she can get out of the room and on to the next patient. We might have lots of concerns, questions, symptoms to share, script requests and blood work requests. We've got to be organized when we go into the office. Here's a good game plan:

1. Make a list of your meds and supplements, quantities and times you are taking your meds. Ask for prescription refills now!
2. Make a list of your questions.
3. Make a list of your symptoms.
4. Make a list of the blood work you would like to have done.
5. Bring a copy of this paper to your doctor that he/she can keep.
6. If you have information you want to share with your doctor, make sure it's from reputable sources (journal articles or abstracts) so you doctor will take it seriously. Highlight important stuff. GIVE DOCTOR COPIES and request that they be put into your file.
7. When you get your blood drawn, INSIST THAT YOUR LAB WORK GET FAXED OR MAILED TO YOUR HOME BEFORE THE BLOOD IS DRAWN. It's vital to get your lab work results BEFORE you go to your follow up. It's vital to have copies of ALL of your lab work for as far back as you can get it. We're not dummies even if we don't have medical degrees. You will care enough to see trends in blood work that your doctor might not have time to see. I for one, diagnosed my Addison's and hypothyroid before a doctor caught on. I'm more aware of the comorbid conditions to Addison's than many doctors and can watch my blood work for signs of the next disease that I will collect.

Please be proactive. Please insist on respect. Please get copies of your labs. Be a knowledgeable consumer. You deserve to be healthy and live every day to the fullest. You can't do that if you can't get out of bed!

Sunday, February 21, 2010

Steroid guilt

There's a subset of people with Addison's Disease who are VERY hesitant to increase our steroids despite our body giving us clear signals that we need more steroids. I like to call this "Steroid guilt". I most certainly a sufferer of this STUPIDITY.

I think the more athletic Addisonian's tend to suffer the worst from this. We are used to putting our body through good pain and getting good results. We have conditioned ourselves to overlook the symptoms below, often until it's too late and we're really sick.

Those of us who suffer with steroid guilt will refuse to see these adrenal insufficiency symptoms as signs of needing to increase:
  • low blood pressure
  • nausea
  • vomiting
  • being cold to the bone and having a hard time warming up
  • heavy arms and legs
  • chills
  • diarrhea, especially bloody
  • inappropriate fatigue
  • extended injury
  • frequent colds
  • frequent trips to the ER
We will go on about our days complaining of a persistent stomach ache or being cold, giving no thought to increasing our steroids or blowing someone off who suggests it.

Why do we do this?

I think it's because it's been drilled into us that we
a) will get fat if we increase our steroids
b) will get osteoporosis
c) need to be on the lowest amount of steroids possible at all times
d) we've seen others pop HC like candy, who suffer from Cushingoid symptoms, take waaaaay too much HC way too often. We don't want to be like them.

We completely disrespect our body by ignoring the fact that if we had working adrenals and have any of the above symptoms, our body would make extra cortisol. We force our body to work harder and be under stress longer and not heal as well because we are stubborn and feel guilty. It's stupid. I have done this over and over. I am committing to treating my body much better and listening to it calling to me with the symptoms I listed above.

You know what can happen if we ignore our body's cry for steroids, we can end up with vomiting and have to go to the hospital to get IV fluids and IV steroids (and it costs a lot of money!), we can end up with the diagnosis of IBS because we're not giving our intestines what they need to work properly, we can end up with cold after cold that might turn into pneumonia

You that don't take enough meds, you know who you are!

Think twice about complaining about the persistent nausea! Try increasing your steroids for a day.

Don't keep wondering why your BP is so low for days on end, don't attribute it to something else, try increasing your steroids for a few days!

Hear me complaining about nausea, low bp, being tired, don't hesitate to tell me to increase my steroids.

You get the picture! If you DO increase your steroids, you can ALWAYS drop back down to normal levels immediately. If you increase your steroids and you show signs of over replacement, drop back down immediately. However, if you increase your steroids and your symptoms go away you know you've done the right thing and perhaps you're training yourself better for the future. You may be potentially avoiding a trip to the ER.

This is too long. I hope someone has read and heard and will listen.

Wednesday, January 20, 2010

Dying from "Addison's Complications" rant

I'm not actually sure what I'm going to say here. I've been pondering writing this post for about three months now. I'm really, really annoyed at certain organizations posting obituaries and saying "died from complications of Addison's" and giving no specific information. It terrifies me to think I could die from "Addison's complications" and not have any idea what these complications might be or how to avoid them.
I feel like the organizations and families of people who have died from "Addison's complications" are doing the Addison's community a HUGE disservice by frightening us when they could be enlightening and educating us, sparing other Addisonian's from untimely death or being frightened of these "complications".
A brief digression, I was on an Addison's Yahoo board and saw this quote,

"When I was first diagnosed with AD, my boss (a woman) said, "So you've got a disease that makes you tan and lose weight. And you want to fix this?""
I immediately emailed the poster, Fran Segerson, for permission to use the quote and wrote this post. I could tell she was a spunky, fun woman from our exchange!

Later in the summer, I read Frans obituary in an newsletter. When I eventually put together that the quote was from her and she was dead, I contacted her family to ask what had happened. Her daughter was kind enough to respond with the information below (she gave me permission to share the information) that helped clear up the ambiguous "complications" explanation.

"It appears Mom passed from Addison's complications. She was fine and then got a stomach bug while on vacation in Spain and i think she knew she needed to go to the hospital but didn't want to get in the way with the rest of her travelling party so she stayed back and probably just got really dehydrated. We unfortunately aren't going to know exactly what happened until they finish the results of her autopsy. They say it will take at least 2 years. It's so hard to not know but after discussion with her traveling companions and from living with her- i think it was what i stated. Sorry for your loss- i know mom was a great friend to everyone and a resource for lots of other Addisonians. Best of luck. Patti Wohl"
Also from Patti: Absolutely , use whatever is helpful... I moved back in about 5 years ago because when she did need help it seemed to be escalating faster than when she was younger. In fact the last few times she needed to go to the ER she got so dehydrated so quickly she started to lose her rational thought and it became a struggle to get her there, once hydrated she would thank me for getting her there and she would be back to her 30 year old energy and atitude for life( she was 63 but no one could have told her that)! My sister never saw her in distress and had no idea it could get that bad. Her doctor here is convinced that she passed from a coronary event brought on by dehydration. She had no heart issues at all. My mother would be so proud of you for doing what you are doing. She had said several times early on that she felt so alone with the Addisons but since the email groups ect.... She felt like an important part of a vital community.

April 22nd is the first anniversary of Fran's death. I think there's something that all Addisonian's can learn from her death, dehydration is dangerous and can kill you, go to the hospital when you need to, keep your injection kit in working order and don't be afraid to use it because too much cortisol is better than too little in an emergency (that's my contribution to the lesson).

Sunday, March 15, 2009

What does sick look like?


A suggested topic from Sue...

What does sick look like? I know this differs for all of us. I'll tell you what sick looks like for me.

Usually sick looks like my usual day to day life. The difference is that I might appear irritated or depressed to those who aren't expecting sick Dusty.

If others look closer or listen, they will notice that I don't answer "How are you?" or to those closer to me I'll answer that question with, "A little tired today." TRANSLATION: You don't want to hear what crap I feel like today, it would be a real downer for you if I answered this question honestly, besides, you're probably not listening and don't really care anyway." Let's get real, most people don't want to hear it if you don't feel well so we minimize or avoid the question all together.

When sick translates to irritation with others around us, it's usually something they interpret because your behavior is so different from normal behavior. For example, you're usually opinionated and passionate about something. When you don't feel well, you don't care. When asked a question, you might reply, "I don't care." For some crazy reason, that response is interpreted as irritation or bitchiness because it's such a different answer than you usually give.

You might appear depressed because you're using what little energy you have to get through the day, go through the motions, take care of your family, keep your job. As a result, you might not talk much, you might hide yourself in your office completing projects that you can do sitting down.

Physically, what does sick look like? If you're not flat on your back on the couch or in the bed and you feel sick, you're up and about trying to take care of business. You might not have had the energy to take a shower, you've got big, dark circles under your eyes that those closest to you can't see but acquaintances in public places seem to love to point out. Maybe you don't eat or can't eat because you don't feel well. You might find yourself staring blankly at your computer screen at work. Wondering what the hell you're doing sitting up. Basically, you might spend the day trying to look and act normal when every fiber of your being wishes you were in bed and/or had someone to take care of you.

Sick looks like you and me. Sick appears healthy at times. Sometimes you're the only one who can see the signs of the sickness. On days like this, it's hard as hell to look in the mirror and see that sick face looking back at you, pale with circles under the eyes, the ghost of you looking at you in the mirror. For me, I fantasize about what life would be like if I didn't have the diseases I have. I wish I had a cook, a housekeeper, a nanny, a personal assistant, a valet, a nurse, someone to feed me and bathe me. Then I realize, I've got to keep my wishes, tears and complaints about being tired to myself and keep on truckin'.











Friday, March 13, 2009

Regular tired versus Addison's tired

There's been a lot of discussion about being tired on a Yahoo Addison's board where I lurk and Diane emailed me and asked me about being tired so I thought I'd write about it here.

This is what runs through my mind when I'm really tired:

I look at the clock and do the calculations, 5 pm, only 3 hours until I can hop in bed and 4 hours until I can reasonably fall asleep. I question myself, "Is this regular tired or Addison's tired?" My temper is short, my eyes burn, my body aches, all I want to do is close my eyes and sleep instead of driving to pick up my son. Is it possible for a person to fall asleep driving at 5 pm? No. I'll be ok. Do I take more Hydrocortisone? No, I'll wait, maybe I'm just regular tired. I get home and take care of more boring tasks, I'm cold to the bone, take a shower that only burns my skin but doesn't get rid of the cold I feel deep down inside. It's 6:00 pm, should I take more Hydrocortisone? No, I'll eat dinner first, maybe that's it. I didn't do anything but sit in front of a computer all day, how can I be so tired? I look at the clock and it's 7:20 pm. Only 40 minutes before I can get in bed and 1:40 before I can reasonably go to sleep. Time to clean up the kitchen, oh crap, how I'm I going to get through this? The nausea hits and I cave in to taking extra Hydrocortisone. Crap, I already take 25 mg of Hydrocortisone a day and I'm small. Will I get fat, will I have trouble sleeping, will I get osteoporosis? I pop the 5 mg of HC reluctantly and wish it would kick in faster. Finish cleaning the kitchen and straightening the house. I get into bed and feel huge relief. I can't screw much up from here with my malfunctioning brain, the electric blanket will eventually get rid of the cold that I've been suffering through for the last few hours. I'm too tired to reach over the bed for the remote, I'll watch whatever's on. An hour until I can fall asleep. If I fall asleep now, will I wake up with a migraine from screwing up my sleep patterns? I'll stay awake for an hour more. Ahhhh reality TV is on and is about my speed since reading is an impossibility because I can't concentrate. I can't plan out the next day because my brain can't think clearly. I drift off to sleep, hoping tomorrow will be better, that I will not be so tired...


The above example is how I feel at 5 pm about 50% of the time these days. Perhaps it's the weather, the time of year or the stupid daylight saving time that prevents me from starting my day until an hour later, makes my day start in pitch blackness and wastes an hour of daylight by making the daylight be in the evening when I'm too tired to enjoy it.

Sometimes, though only 2 or 3 days a month, I'm so tired that if I had the flexibility to stay in bed and sleep all day, I would. For so many reasons, this is not practical for me. I usually end up feeling like I have the flu, sitting at the computer, wishing that 8 pm wasn't in 12 hours. Sometimes I put my head down on my desk and cry because I'm so tired.

Addison's tired is such a different tired than regular tired. Many times with regular tired, you feel satisfied that you've done something to "deserve" being tired. There's a reason for it, you've pulled weeds in your garden, finished a big project or played with your kids. Addison's tired leaves you feeling cheated, scared and sick. I always wonder if I will pull out of Addison's tired. Will it be intractable this time? Addison's tired feels like a tired that will never and can never go away. Addison's tired hurts. Your brain doesn't work, your muscles and joints hurt, maybe you cry easily or anger easily. You don't feel like you. Hell, sometimes I can't even make simple decisions. I stare at the person asking the simple question and wonder when the words will come out of my mouth and what I'm going to say. It's like my whole body, mind and soul has short circuited. I feel like an idiot. I try not to go out in public when I'm like this.

The day after the Addison's tired I try to evaluate what might have caused the tired. Sometimes I'll look at my pill case and see that I've missed half my meds or I'll vacuum the floor and find my pills on the floor, have I gotten enough sleep over the last couple of weeks, am I eating OK and often enough. Maybe I was supposed to start my progesterone and didn't. Usually, there's no noticeable reason except my body occasionally breaks down and tells me, "NO!"

Addison's tired sucks, it hurts. Often, for me, taking extra HC doesn't even work. I just have to cry, feel sorry for myself, stay out of public, don't answer the phone, hope the work that I've done on the computer isn't crap and hope I won't have to redo all of it.

Mostly I hope that the tiredness, fatigue and exhaustion will pass. I hope I'm not getting some other disease. I hope that I won't have to spend money on doctor visits or start taking more meds and tests. I always hope that tomorrow will be better.

Wednesday, February 25, 2009

Injectable Solucortef reminder


Upon inspecting my Solucortef emergency injection kit, I realized the Solucortef that I've been carrying around, counting on having  for an emergency, was in no shape to be used AND out of date.

If you've got Addison's, you need an emergency injection kit with injectable steroids.  If your doctor tells you that you don't need it, your doctor doesn't care about you and you should get another doctor.  MOST AMBULANCES DO NOT CARRY INJECTABLE STEROIDS.  Check with your local hospital to see if they do.  Even if they do, there's no guarantee they'll know to inject you or have the permission to do so.

If your doc won't prescribe injectable steroids, ask why.  Is he or she concerned that you'll want to "shoot up" all the time?  Big whoop if you did it once when you didn't need to (like you're going to).  Most people I know don't want to get ravenously hungry and have trouble sleeping and possibly have hallucinations for fun.  I doubt there's anyone who will shoot HC for fun.  More importantly, do you travel by car?  Are you physically capable of vomiting?  Do you travel out of state?  Out of the country?  Hike?  Ride a bike?  Go camping?  Live in a state where ambulances don't carry injectable steroids (most of them in the US)?  If you answered yes to even one of these questions, you need to have an emergency injection kit.

My injection kit was both out of date and was useless due to how much I had carried it around.  I would recommend if you've got an out of date Acto-vial, try it out.  I was extremely surprised at how difficult it was to pop the Acto-vial and mix the powdered HC with the fluid.  It was a good learning experience.  I'm glad I wasn't in an emergency situation when I was trying this out.

What I carry for emergencies.  If you have more adipose tissue on your thigh than 1" of needle will get through, you might need a longer needle.

Please inspect your emergency injection kit.  
  • See if your needles and alcohol pads are in good condition.
  • Is you Solu-Cortef expired?  Has it been exposed to extreme heat or cold?
  • Is your emergency information up to date?
  • Are your injection directions legible?
  • Do you have a basic idea of how to give yourself a shot if you need to?  If not, review!

Thursday, April 10, 2008

FOR EMERGENCIES/EXTREME STRESS SITUATIONS (TO AVOID OR CORRECT ADDISONIAN CRISIS) Conditions which must be treated immediately: • severe injury of any type • blood loss • fluid and/or electrolyte loss • infection • severe vomiting • diarrhea. Treatment protocol prior to Emergency Room arrival: • Give Hydrocortisone 100 mg. IM (intramuscularly) in thigh or gluteus muscle. • Patient then should be immediately admitted to the nearest Emergency Room, where adrenal crisis treatment should begin promptly. • If transportation to emergency medical facility is impossible, treat patient on site as listed below. Protocol for treatment of adrenal crisis in emergency room: 1.) I.V. hydrocortisone. 2.) Administer I.V. isotonic saline. 3.) Continue I.V. hydrocortisone until oral medication is tolerated. For further details, call Dr._______________________________________ Specialty:___________________________ Office Phone:______________________ Emergency Pager or Exchange #:_____________________________ Address_______________________________________________________ City____________________________ State________ Zip______________ Patient Name________________________Home Phone:_________________ Address_________________________________________________________ City_______________________________State____________Zip___________ MEDICAL CONDITIONS MEDICATION DOSAGES Emergency contact #1:_____________________Relationship to patient:______________ Home phone:______________ Work:______________ Cell:_______________ Emergency contact #2:_____________________Relationship to patient:______________ Home phone:______________ Work:______________ Cell:_______________ For more information, contact: National Adrenal Diseases Foundation, 505 Northern Blvd., Great Neck, NY 11021 Phone: (516) 487-4992 E-mail: nadfmail@aol.com Website: www.medhelp.org/nadf
April 9, 2008

Dear Medical Director,

My name is Justine Hardman and I will be participating in the Desert RATS 50 on April 19, 2008. I have Addison’s disease. If I become unconscious or unresponsive, I will need immediate treatment. Attached is my emergency protocol.

I will an injection kit and emergency protocol in the outside pocket of my running backpack. I wear a medic alert bracelet on my right wrist at all times during the race and keep a medic alert card with my injection kit.

Although I do not anticipate any problems, I would like for you and your personnel to be informed of my protocol should the need arise.

Please contact me if you need more information or if you need me to check in with the medical personnel prior to the race.



Justine Hardman

Wednesday, January 2, 2008

Addison's Emergency Injection Kit - DON'T LEAVE HOME WITHOUT IT!

Explanation of Adrenal Crisis - on emedicine.com, you will need to sign up for a FREE account to view this EXCELLENT explanation of an Adrenal Crisis. You need an emergency injection kit to pull you out an Adrenal Crisis.

Who needs an injection kit?
  • ANYONE who has been diagnosed with Addison's disease. If your doctor says you don't need an injection kit, he is sadly, sadly mistaken. Most ambulances DO NOT carry Hydrocortisone and/or will make you wait until you get admitted to the Emergency Room to be injected. Check with your local ambulance crew to see if they carry and will administer Hydrocortisone. Idaho, Montana, Utah and Colorado are a few states that do not carry or administer Hydrocortisone to Addisonian's in crisis.
  • Emergency Medical Response by state, complements of CARES
Why does a person need an injection kit?
  • Vomiting - vomiting more than twice is cause for an injection. Dehydration is dangerous for Addisonian's.
  • Accidents - see above.
  • Back country travel - often if you are hiking or biking in the back country, transportation to medical services is a long, long way away.
  • Foreign travel - you need to be prepared if you are in a foreign country. You need to be responsible for your own health at all times especially if you're in a foreign country.
What is in an injection kit?
  • A basic kit could contain the following
    • A needle (I've got a 21 Gauge 1 inch - your doctor can recommend the best needle for you
    • 250 mg Solucortef (I've got 250 mg because I am often far from medical help and my doctor thought that would be a better choice for my circumstances). I keep mine in its original box
    • Alcohol swabs - inexpensive and can be purchased from pharmacy
    • Instructions on how to give an emergency injection sealed in a zip-loc bag
    • MedicAlert card
    • Addison's crisis emergency protocol
    • A letter from my doctor that says: "This is a letter stating that (YOUR NAME HERE) (Date of Birth HERE) is a patient of mine who has Addison's disease. She must carry in her possession a supply of Solu-Cortef and syringes while traveling. Please accommodate her in this regard."
    • Peptobismol, Hydrocortisone pills, salt pills (all optional but I like to carry them with me)
  • These are the contents of my basic emergency kit


A close up of the Solu-Cortef



This is what my basic kit looks like all wrapped up in a snack size zip-loc bag (6.5 inches x 3.5 inches and 2 ounces)



  • The deluxe kit could contain
    • All of the above items
    • Rubber gloves, plastic wrap and a trash bag
    • Mole skin, minipads, various bandaids, athletic tape & toilet paper
    • Tweezers, safety pins, razor
    • A light source, matches and lighter
    • Pills: Immodium, Hydrocortisone, Zofran, pain killers
    • Sunscreen stick
All the junk in the deluxe kit




Deluxe kit all packed up. 7 inches x 4.5 inches x 1.5 inches and 8 ounces


Last but not least the MedicAlert bracelet
  • All Addisonian's need a MedicAlert bracelet (or similar). I've been told the necklaces are not a good idea because if you are laying on your back, the pendant slides around to the back and can be undetected by emergency crews
Both of these pendants were ordered from MedicAlert. I sewed the pendant on a watch band (above) because the "active band" from MedicAlert has a clasp that opens easily when you're being active. I also put the pendant on the second one because I liked my beads better than the MedicAlert choices.

Wednesday, September 19, 2007

Important Addison's Links