Rant: "Believe one who has proved it."

Believe one who has proved it. Believe an expert.

Virgil, Aeneid

Roman epic poet (70 BC - 19 BC) 

Here is a post where I'm going to sound like more of an asshole than usual.  I've seen many adrenal insufficiency forums over the last decade.  Many of them moderated by sick people with adrenal insufficiency.  The forums are also populated by the sick.

My forum is different (www.addisonssupport.com).  I am well.  I am active.  I study about adrenal insufficiency.  I can point you toward medical references.  Many of the people on my forum are well and active or have the desire to be well and active and are very well educated.  Despite this, there are people who have visited my forum and then gone to another with a sick or uneducated mod and sick and uneducated participants.  I am not offended but don't understand it.  These same people suffer frequent crises, are often on disability and have very dramatic lives.  They often come to me in a frenzy, wondering why the awful, uneducated advice from other forums or from uneducated doctors doesn't work.  I digress.

Once again, I have to say that when you have adrenal insufficiency and/or thyroid problems YOU have to work with and educate your doctor.  It is your responsibility.  Your doctor has about 15 minutes to spend with you every year or so.  You are totally fooling yourself if you think your doctor is spending one minute outside of your visit learning about adrenal insufficiency or normal lab ranges associated with adrenal insufficiency. Hell, about 75% of the time they don't have any clue what needs to be tested (LEARN and let them know!).

How this applies to "Believe one who has proved it."  Although I'm not working right now, I have a very, very busy life.  I'm proud of what I'm able to accomplish despite chronic illnesses.  I do more than people who are eating their healthy bodies into permanent illness.  Why am I able to do so much?  I follow my own guidelines.  I practice what I preach.  I am healthy.  I am well.  I am active.  Sometimes the adrenal insufficiency is a huge pain in the ass.  Sometimes I'm mad about it.  Most of the time, it's no big deal.  

Want to be healthy?  Print out what I've written recently.  Research what I've written.  Talk to your doctor about it.  Optimize your health.  You deserve it.  You need to be well.  Life is shit when you feel bad.  No one should live like that. 

You can come to my forum www.addisonssupport.com for free advice on your specific situation.  If you want personalized assistance in advocating for yourself (for a fee), please shoot me an email at contact@addisonssupport.com.  I can do email, phone, Skype or assist you on site.

Don't follow or listen to sick people who don't emulate the life you'd like to live!!!!!!!!!!!!  STUDY, LEARN, ADVOCATE FOR YOURSELF!  Running ultras is not for everyone.  I don't give a flying crap if you don't want to emulate what I do.  Find trustworthy info and fly with it.  Get your life back.

June 2013 in pictures

Well, I'm catching up.  I will keep trying to catch up since these pictures are entirely selfish and I love looking back on them.  They are also for Wanda and Heather specifically.  I'll try to keep the words to a minimum.

Wood stork, ibis and ducks a stone's throw from I-75 

One day, I got bold and got Cracker Jack out.  She's BEAUTIFUL

I see this sign on the way home from the birds.  Cracks me up EVERY time

How appropriate.  Both Heather and I had homes that could have been aptly titled "Pink Hell" before we renovated

Smooth Move?  Really?  There's a laxative tea with the same name

I could qualify for this camp

The hat I wore for Vol State.  Peace River in the background

One of the local department stores got flooded. 

Beach day in Fort Myers!

Zane, Gracie, Harrison and Max celebrating Grandpa Chuck's birthday.  Grandpa Chuck LOVED buying TP

Cool mushrooms

My sister, Nicci, Grandma Margie (101 years old) and my son Zane (Margie's great grandson)

My new experiment

My boy at the 24th Telluride Bluegrass Festival, fifteen years ago.  Where does the time go?

Rant: The Goldilocks Principle

Yes SueC, this is for you.  I hope it makes sense and helps you and others get their meds right.

You all know the story of Goldilocks, right?  She breaks into the bear's house and ransacks it, beds are too big or too small, food is too hot or too cold.  Eventually, she finds stuff that's "just right" for her.  The same holds true for lab ranges and meds.

Taking extra hydrocortisone or thyroid meds is not better for you despite the focus of our culture on "more is better".  Too much hydrocortisone will lead to long term problems like insomnia, weight gain, high blood pressure, etc.  Too much thyroid meds will make you hyperthyroid and, if you have adrenal insufficiency, make you need more hydrocortisone or you will feel hypothyroid.

Confusing, right?  And what the hell does it have to do with Goldilocks?  Well, you'll never feel optimal if your meds are over or under replaced.  You'll feel well if they are "just right".  Contributing to the confusion is that there is no reliable way to test for proper cortisol replacement.  Adding to that, doctors are frequently telling patients to get by on the lowest possible dose of hydrocortisone that they can get away with or they will end up with osteoporosis, fat and criticized by said doctor.  Very often I'm seeing people guilted into surviving each day on 15-20 mg of HC/day despite symptoms that they are completely and totally under replaced.  Their lives suffer, their families suffer and their bodies are ravaged by frequent illness, nausea, exhaustion and malaise.

Let's break this down into bite sized parts and assume you've been diagnosed with adrenal insufficiency.

• How do you feel and what are your symptoms?  
• Low HC?  Low BP?  Nausea?  Weight loss?  Fatigue?
• High HC?  Irritable?  Higher BP?  Weight gain?  Trouble sleeping?
• Just right, you function like a normal person!
• Has your thyroid been tested properly?  And you will say yes to this.  Most likely, the answer is no.  If your doctor solely tests TSH, you're screwed unless you are ridiculously out of the range.  If you're secondary and your TSH is low or low normal and your doctor doesn't put secondary hypothyroidism together with low or low normal TSH, you're totally screwed.
• Proper testing of thyroid is testing the FREE T4, the bioavailiable portion.  
• If your Free T4 is too low, your TSH might be normal, might not (making it an invalid way to determine thyroid status).  Low Free T4 will cause you sleep issues, hair falling out, eyebrow thinning on the outer third, inappropriate weight gain, infertility and constipation.  
• If your Free T4 is too high, most likely your TSH will be suppressed and you'll feel shitty.  Your degree of shitty depends upon how you replace your cortisol.
• All of this leads to the discussion of "high", "low" and "just right" Free T4.  The current lab range for Free T4 is plain old dumb and quite unhealthy.  A Free T4 of 1.3 for a woman and Free T4 of 1.4 in a man with adrenal insufficiency tends to be optimal.  The range is .9 to 1.8.  HUGE, considering where optimal is.  YOUR DOCTOR WILL NOT KNOW THIS.  You ask, why?  Because your doctor often just goes by lab ranges and is not highly educated about thyroid, if it's in range, he will think you're AWESOME despite symptoms to the contrary.  SYMPTOMS, SYMPTOMS, SYMPTOMS coupled with labs are the very best way to figure out what needs to be fixed with your thyroid.
• How do you get your thyroid "just right" if your Free T4 is not 1.3/1.4 and you want to try it?  Beg to change your meds so that you can try being in the middle of the range as your doctor's most likely is.  His wife's Free T4 is probably mid range too.  Ask what it will hurt to get that number to mid range?  The answer is, there is no downside to having a mid range Free T4.  If he gives you an answer, it's bullshit unless you've got Lyme or some other oddball thing wrong with you.  99% of the time, mid range Free T4 is optimal.
• Let's say your Free T4 is "just right" and you're dosing your HC physiologically.  How do you feel?  What are your symptoms?  See the first bullet point.  Very often, people are under replaced with their hydrocortisone because their doctor has a hard on for 20 mg of hydrocortisone being the magic number.  Let me tell you, it's not.  You and only you (with your doctor's blessing) can determine the right dose of hydrocortisone.  It might be a low number and it might be a high number.  If you go by symptoms, the number doesn't really matter (unless you're taking 50 mg of HC or more every day).  HC dosing is NOT WEIGHT BASED.  That's total bullshit and I'm living proof of that.  I'm small and getting smaller on what some would consider a high dose of hydrocortisone.

Don't let your doctor bully you or God Complex you into thinking everything is "just right" when it's "too high" or "too low".  Shoot for optimal, it's not unreasonable to want your hormones mid range (JUST LIKE HIS ARE).  You deserve it and it's not a ridiculous request.  Compromised quality of life, frequent exhaustion, hospital visits are NOT a part of adrenal insufficiency unless you allow your doctor to bully you into believing it.  The previous symptoms are that you are regularly skimping on hydrocortisone.  If your HC is right, you're much less likely to be sick and/or tired.

If you have any questions about this post, please post to my forum www.addisonssupport.com.