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 24, 2015

Rant: Patience is NOT a virtue when it comes to health care and medical records, it's dumb

Being patient when it comes to your health care is neither a virtue nor is it smart.  For some reason, doctors think they are really cool to withhold your medical testing from you until you show up at their office to review it.  So not cool.

As someone with little to no medical education, how are you to learn and understand what all of your test results mean during the ten minutes you spend with the doctor?  Often, the doctor will pronounce the results as normal if they are not flagged.  Any educated consumer knows lab normal is not necessarily normal.

PUBLIC SERVICE ANNOUNCEMENT:  Below, I'm using lab work as an example of when patience is not a virtue.  You are entitled to copies of MRIs, Xrays, CT scans, radiology reports, etc. Get them.  Get them all.  You never know when you might need them.  If you've had any of these things done, start calling around for copies today.  I'm not exaggerating.  Never give away copies of your results or scans.  Have the office make copies if they want them.

BACK TO THE POINT:  A random cortisol in someone who is undiagnosed is an excellent example of how patience is dumb.  Ranges are often given as 2-20.  You get a random 8 am cortisol of 6 and you're normal.  WRONG!  2 is a good midnight normal cortisol.  22 is a good 8 am cortisol.  According to Arlt and Allilio in Adrenal Insufficiency, an 8 am cortisol of 6 is diagnostic of adrenal insufficiency in and of itself.

You go into the doctor's office and the doctor has very little adrenal insufficiency experience (which is usually the case).  The doctor doesn't know that the lab range for cortisol encompasses midnight as well as morning cortisol.  He tells you that your 8 am cortisol of 6 is "normal" and there is nothing wrong with you.

If you had been impatient, you would have had your test results ahead of time and done some research.  You would have known that an 8 am cortisol of 6 was decidedly not normal and perhaps even close to lethal.  You or your advocate would have whipped out the Arlt and Allilo article and asked about their interpretation vs the doctors.  At that point, the doctor would do one of three things:

1) fire you because you caught him in a position where he didn't feel like the smartest person in the room.
2) passed you on to someone who knew more because he was clearly out of his comfort zone
3) discussed the paper and lab work and pursued the testing recommended in the document

No matter what, having your labs ahead of time would be a much better outcome than if you had been patient.  Being a patient patient usually makes you feel like a dumb hypochondriac.  Despite the symptoms you are going in to have researched, you fall within the "normal" ranges.  You get stuck with the diagnosis of depression, fibromyalgia, IBS or chronic fatigue.  All of these are junk diagnoses.  There is little to no treatment for any of them.  You will get no relief.

What can you do differently?  Within three days of your blood draw, call the lab, check the portal, call the nurse.  In Idaho, if you ask the lab to give you your results, they are legally bound to do so.  In Florida, patients are too stupid to get their results until the doctor says it's OK or five days after testing. Most other states have laws that fall somewhere in between.  You need to research your state's laws and know them.

If you want to get well, you have to aggressively go after your lab work BEFORE you go into the office for your follow up. I often call the nurses station and say, "I'm calling to get copies of my most recent blood work before I forget!  You know how that is!"  They usually make copies and put them at the front desk.  Easy peasy.

So you've got copies of your labs, now what? Hole punch them and put them in a binder.

Look at them.  Is anything obviously flagged?  Is anything very high or very low in the normal range?  If the answer is "Yes" get ye to google.  I actually use www.labtestsonline.org, medscape.com, labcorp.com or questdiagnostics.com.  Only use reputable sources to understand the labs.

Go to forums and ask others if they have had the same results as you.  If they have good back up information, get copies or links to it.

You can understand your test results, it will just take time.  If you don't get your results until you are five minutes into your appointment, how will you have time to fully comprehend your results and what they mean to your health.

As far as lab work goes, patience is a dumb thing to have.  It's not a virtue.  Being impatient is a virtue and it will help you get well or optimize faster.  Being patient will get you a junk diagnosis that can make you feel awful and could, in the case of undiagnosed adrenal insufficiency, kill you.

Monday, August 17, 2015

Rant: Emergency jewelry

My panties are in a bunch.  Maybe TMI but I think everyone needs to know that from the start of this rant.  I will not mention organization names nor will I recommend that you change the wording on your emergency jewelry.  Hear what I have to say and make your own decisions.

A major organization as well as a major manufacturer of emergency jewelry recommends the following wording on bracelets:


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"