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.

Training Because I Can! becomes Addison's Support Advocacy Blog

I started this blog in 2007 with the intent of chronicling my training for the Vineman full triathlon (2 miles swimming, 100+ miles biking and a marathon) with Addison's.  In the years since the Vineman, this blog had become a place for me to post pictures, rant about adrenal insufficiency, discuss exercise and ultrarunning, post pictures about birds and whine about my shoulder and various ailments.   My life has changed and now I've basically devoted my life to helping improve the lives of people with adrenal insufficiency.

I've decided to make this blog about adrenal insufficiency only.  My website www.adddisonssupport.com has been streamlined.  The forum is still free and available to anyone who applies and writes one sentence in his or her "application".  I am available for a fee as a consultant to help you get diagnosed, optimized or educated.  I can also be hired to be an advocate who attends your doctor appointments with you virtually or in person.  In the next couple of years, I hope to write a book or two (Thank you, Dave C for the kick in the pants) to help guide care of people with adrenal insufficiency.  There are only a few experts who specialize in adrenal insufficiency, my hope is that you can become an expert on your diseases and help your physician become one as well so that you can live the best, healthiest life possible.

Thanks to everyone who followed "Training Because I Can!" to read about my running adventures, birds or just to hear me whine.  I hope you enjoy "Addison's Support Advocacy Blog" in a different but more important way.

March 2014 in pictures

March 2014 was a busy month.  I won't bore you with details.  Birds, trip to NJ and Route 40 Romp.

This little, wild bird and his girlfriend were adopted this month.  Charlie has an amazing capacity to escape his cage.

I love church signs.

I'm stunned that anyone would get a tattoo that looks like a giant penis on his leg.

Bob took me flying again.  This is Sanibel, Florida.

I have a jog stroller so that I can eventually run something really long self supported.  On this day, I took my bird for a walk.  He didn't like it.

We went to NJ for a wedding.  The church was beautiful.  God didn't strike me dead!

My sister-in-law's dog, Lola.  Lola's ears get in her food so they get pulled back for meal time.

I worked a trade show in Orlando.  During my break, I did my mile.  First time I've done my mile in pearls.

This was a hardware trade show, not a XXX trade show.  Get your minds out of the gutter.  This is foam to fill cracks in walls!

A Florida Scrub Jay

February 2014 in pictures

Random stuff...LOST Relay...birds

Funny!

Bob, my friend and mentor, took me flying.

My bird was very hungry.

During an early morning run, I had the privilege of seeing Manta Rays in the Peace River.  So graceful and so beautiful.

LOST Relay

Lake Okeechobee Scenic Trail 118 miles but I only did half

I changed up meds and had great success.  Success=feel good, stay up all night without falling asleep, no nausea.  Scott and I ran around Lake Okeechobee

Me actually running during the LOST Relay.

Scott, my relay partner, looking bad ass.

Lake Okeechobee

Sue Anger is amazing.  She organizes volunteers for lots of Florida races.  She's really good at it too.

It got cold during the LOST race.  

I amused myself by wearing this outfit to the finish.  

This was on the bike path during the LOST race.  It cracked me up.

BIRDS

CC, a moluccan cockatoo, the sweetest bird you can imagine.

I braved getting Sam out and as I walked by, he repaid me by sneak biting me

One of our Super Star volunteers and Schmutzy, a Quaker.

January 2014 in pictures

January 2014 was busy.  We decided we were going to move and picked Vero Beach.  We are building so the house won't be done until the end of 2014.  My best and longest lasting friend, Nancy, came down from NJ to visit me.  We went "camping" in the Keys.

Reading and relaxing on Bahia Honda Key

Pelican getting dinner

Sunset on Bahia Honda Key

Sunrise on Bahia Honda Key

Changing bird water

Macaw bite through a sweat shirt

After effect of macaw bite (between my ring finger and middle finger).  BTW, macaws don't bite all that much.  I was being stupid with the hand bite.  I'm also trying to be braver so I am being bitten more.

Ummmmm, OK.  Sounds like fun to me.

Brilliant sunrise!

Clever sign at a local wildlife sanctuary.  http://www.octagonwildlife.org

Despite this woman's apparent attention to rules of the road, she pulled out right in front of a big truck.  People ride these scooters around on the road all the time here.

December 2013 in pictures

Not much to say about December of 2013.  Birds, birds, birds and Ancient Oaks 100.

I cleaned this parakeet's eye.  Yes, you read that right.

Cracker Jack, who has been adopted, started trusting me.

I ended up getting her out.  Look how relaxed and comfortable!!

This is my 21 year old boyfriend, TC.  He's a Military Macaw.  I adore him.

Florida is a different world! 

One of two bobcats in my neighborhood that afternoon.  Sorry for the poor quality of the picture.

RaceTrac only has one employee.

Random find during a run.

This was the biggest truck I've ever seen.  This guy must be built like a Ken doll to need something like this.

ANCIENT OAKS 100

I completed Ancient Oaks in 29ish hours (can't remember).  The important part is that I was happy and not nauseous the whole time.  I also only slept one hour, another victory!

The start

Mike Baker and me.  Poor Mike, I told him we'd start out walking.  We didn't.

Most of the trail looked like this.  Beautiful!

The roots were like this.  Tricky at night.

The one and only hill of the whole course.  14 feet high and named Mt. Mahoney.

So much to do, so little time

I've been thinking about writing a blog post for a long time.  I sat down last November and wrote two months worth.  I haven't written any since.  This is going to be long.  Sorry.  It's a self indulgent post so that I can remember things when I look back.  Skip what's boring.  I've broken this out into Summary, Addison's Stuff, Running and Upcoming Race.

I think I'm on a kick so there might be weeks of pictures on this blog to follow if I can get my butt in gear and make some blog posts today.

Summary:  I've been doing a lot of bird stuff because I love it and I'm the Treasurer on the Board of Parrot Outreach Society  ("like" us on Facebook!).

Look at this sweet baby, she's not actually a baby, she's 18. CC is a Moluccan Cockatoo who needs a home.

I've been running as much as possible.  Usually running to the Parrot Outreach Center so that I can combine commute time with my run.  Efficiency and all that shit. For someone who has no job, I am always busy doing something.  Too much time with the birds, perhaps?  Well, that's okay because I love those homeless birds, even the mean ones.

We are moving to Vero Beach, Florida in the fall or early winter.  We are building a house there.  

Paul is working hard and bringing home the bacon.  He's running, doing crossfit and dreaming daily about our new home in Vero.  Dolly, the miniature schnauzer, and Keiko, the Senegal parrot, are doing well.  Dolly is running my mile with me three or so days a week and walking .5 the other days.  Dolly is 12 so she's doing awesome and staying active!  Keiko has been with us for a year now.  I adore him and he adores me.  He makes me smile every day.  I am doing well.  Feeling mostly good.

Addison's stuff:  I went for my yearly check up and got blood work.  Turns out some things are off.  I am, once again, over range with my Free T4 for someone with adrenal insufficiency.  This would explain some things that are going on that I won't discuss in this company.  My FT4 has been high before and I felt totally different but I was also 1) drinking alcohol very regularly 2) not taking enough hydrocortisone.  I haven't had a drink in eight months and I am taking hydrocortisone liberally so I am actually feeling the effects of being hyper (with adrenal insufficiency, if you are hyperthyroid and not taking enough cortisol [hydrocortisone] you will feel both hyper and hypothyroid at the same time).  Anyway, I'm working on that and hope it doesn't affect my run this weekend.

Running:  The running has been good.  I got two new pairs of shoes for Christmas (thank you Paul and Mom and Duane!).  My old ones were worn through to the insole and hurt my feet and legs.  I know you minimalist people think shoes with no cushion are the bomb, I think they don't work for me.  I like a tiny bit of tread too.  Shoes with tread and a little bit of padding make all the difference in my running comfort.  The training has been going well for the most part.   Weight lifting has been sporadic at best and my running always suffers for two weeks post event but I've been getting out regularly.  My mile a day running streak is still in tact after two years and  at least walking one mile a day, four years.

Old, ouch! Sorry for the bird food and poo stuck in them.

NEW! Pretty and comfy.

In December, I did Ancient Oaks again and completed the 100 miles in 27:48 (?) and felt great!  In February, I used the same training, eating and med tactics and completed about 60 miles at Lake Okeechobee Scenic Trail as part of a relay team with Scott K. from Vol State.  In both cases, I felt great, ate and drank and had the same med strategy.  In both cases, I stayed up almost all night!!!!!!  I slept on and off through labor with my son when I was twenty years younger so staying up all night was a huge accomplishment.  The days following both, I was not terribly sore either.  Another accomplishment.  I will apply the same strategies in my upcoming race, the Route 40 Romp (R 40 R).  

Upcoming Race:  The Route 40 Romp (R 40 R) goes from Yankeetown, on the Pacific side of Florida, to Ormond Beach, on the Atlantic side of Florida mostly via Route 40.  It is 116 miles.  I will have a "crew" named Marilyn.  Marilyn and I met at Ancient Oaks in 2012.  She generously and selflessly offered to crew me at this race when Kathleen T told her I was going to push a baby stroller to hold my supplies.  This race has long stretches without water so a crew is necessary to keep you from dehydrating.  I am overjoyed and overwhelmed by Marilyn's enthusiasm and generosity.  I'm stunned that an acquaintance would give up her weekend to take care of me in such a self-serving, self-centered endeavor.   I am thankful and humbled.  My husband has paced me before but I've never been crewed.  This will be a new experience for me.  

The race is tomorrow, Saturday, March 22 at 7:30 am.  I have a med plan in place that is similar to the ones I've used in the last two races.  Food and clothing is ready.  I am nervous as hell.  I've been awake before 5 am three days this week because of the hyperthyroid and the anxiety over this race.  It's one thing to go 100 miles, to me it's quite another to tack on another 16 miles.  I need to trust that I can do it.  

This is getting too long.  I will put my med plan into a different post.  

A quick thank you to my husband who allows me to work with the birds, keep the house clean, take care of the pets and run.  Thank you to all of my wonderful friends who support me in so many ways.  Thank you to Marilyn for offering to take care of me for the weekend.

XXXOOO to all