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.

Thursday, October 10, 2013

Rant: Occam's Razor

I've been in a mood lately about adrenal insufficiency stuff, so much so that I've stopped checking and responding to my forum.  It's entirely too frustrating to see some people whining about the same things over and over again.  I respond with the same suggestions over and over again.  Often, they ignore my suggestions and keep whining.  ANNOYING!  Why are you coming to my forum or emailing me questions if you don't listen to the suggestions??  Here's my theory, the solutions I offer are simply too easy and involve too much personal responsibility and accountability.

Occam's Razor is the theory where,  "... the hypothesis with the fewest assumptions should be selected."   Thank you Wikipedia.  It's exhausting to see so many people jump to crazy conclusions ("I'm dying" "There must be something else wrong with me" "I need expensive supplements" "I need a fancy dancy Addison's specialist" [this does not exist by the way so give up on it]) when they haven't even done the basics to get themselves well.  You heard me right, get themselves well.

There are NO doctors who are Addison's specialists.  NONE.  NOT ONE.  I can't even tell you how many people I know who say their doctor is a specialist in adrenal issues but this same doctor can't even test properly for AI related deficiencies and meds. This is where Occam's Razor comes in.  Make fewer assumptions.  Know your shit.  Understand your condition.  Carry documentation (REAL DOCUMENTATION from medical journals) with you to a doctor's appointment so you can provide proof and educate your doctor if he/she questions you.  You've eliminated the variable of the stupid, uninformed doctor who is willing to mislead you because he/she doesn't have time to study up on the one patient in hundreds with special needs.  [Please note:  I never expect a doctor to know about AI because they just don't have time.  I do expect ME to know what I need to know about AI and present it in a coherent fashion.  What pisses me off is the doctor who is uninformed and puts a patient at risk by telling them things like, "You don't need an injection kit."  "Never take more than 20 mg/day of HC." "Prednisone is better for you because you only have to take it once a day." "I will not test X."]

YOU need to know what tests you need to get the best treatment and the protocol needed to do the tests.  Your doctor does not know.  Insist on these tests being done every six months.  Without these tests, you can't possibly know if you're on track.  DHEA-S, RENIN, ELECTROLYTES, FREE T3, FREE T4, Total and Free Testosterone, Progesterone (women).  All of these things need to be supplemented if deficient.  Conversely, a doctor who tells you to get ACTH and cortisol tested is...well...uneducated.  Adjusting hydrocortisone by ACTH is, according to Arlt and Allilo, a good way to get completely over replaced.  Cortisol, what does testing that tell you?  Pretty much nothing especially if the doctor doesn't tell you when and how much of a dose of HC to take prior and how long to wait before the draw.  If he/she tells you to get the draw before your meds, what the hell does that tell you?  It tells me your doctor is not bright.  You've been diagnosed with AI, you will make little to no cortisol and have little or no residual cortisol in your body from your last dose.  Perhaps the doctor is making money off that draw and is milking you.  I don't know.  GET YOUR TEST RESULTS.

When you get your labs back, you and your doctor need to figure out if your meds are right and if you need to add or remove any.  This is where a lot of people love to throw their hands up and let doctors take over.  Don't.  You need to have the same hormones that his wife and mother and daughter probably make.  You don't need to be deficient, you don't need to over replace.  You just need to have the right amount.  Testosterone and DHEA are two examples of hormones that are vitally important to well being and BONE AND MUSCLE HEALTH in women as well as men but doctors shy away from prescribing it.  Tell me, if testosterone helps you build muscle and you have none, how do you keep your heart healthy and strong?  The answer is, you can't.  


HOW OCCAM'S RAZOR APPLIES TO AI

  1. EDUCATE YOURSELF ABOUT YOUR CONDITION
  2. GET PROPER TESTING AND AVOID UNNECESSARY TESTING THAT SOME DOCTORS USE TO NEEDLESSLY CHANGE MEDS.  Get your test results.
  3. REPLACE HORMONES THAT NEED TO BE REPLACED.  REPLACE THEM AROUND MIDRANGE.  Not too much, not too little.  Don't be scared of androgens
  4. TAKE YOUR MEDS PHYSIOLOGICALLY.  If you don't know what this means, you have a lot of studying to do and probably feel like shit.
  5. Eat regularly, sleep regularly, exercise if you can and do it regularly
  6. IF YOU STILL FEEL CRAPPY AFTER REPLACING ALL BASIC HORMONES AND GETTING THYROID WHERE IT NEEDS TO BE, THERE'S PROBABLY SOMETHING ELSE WRONG.  Get tested for comorbid conditions.

There are so very few people I know who have done #1-6 and still feel unwell.  Those I do know whom I know have tried the above steps and still feel awful have Lyme as tested by www.igenex.com (NOT THE INACCURATE WESTERN BLOT).  For these people, the issue is not lack of trying, it's that their problem is more complicated.

OTHER WAYS TO KEEP IT SIMPLE WITH AI
  1. Start out simple.  Use the easiest, cheapest formulation first.  Use inexpensive supplements that have been proven to work.  Get a baseline before taking them.  Test a few months later.  You will know if the cheap stuff works.  Getting compounded DHEA or progesterone right off the bat is the biggest waste of money I've ever heard of
  2. Ladies.  If you're deficient in testo AND you can get your doc to prescribe it, get it compounded.  The proper dosage for women is .2% If your doctor prescribes pills, patch or shots, run the hell out of his office.  He's retarded and has a burning desire to make you feel like a greasy, stinky, broken out teen age boy.  He hates you and wants you to feel more than awful and complicate your recovery.  He also has no understanding of how to prescribe women's hormones
  3. Exercise (if you are physically capable) regularly.  Exercise means different things to different people.  If exercise means moving your arms during TV commercials, do it.  Commit to it daily.  Exercise has a way of improving mental and physical well being.  BTW, if exercise means doing marathons, train your freaking heart out
  4. Sleep.  Sleep regularly, practice good sleep hygeine.
  5. Eat.  Eat well and regularly.  Eat protein with each meal.  Protein is good for people with AI.  I'm not saying eat tons of protein, just eat some protein with each meal
  6. Take probiotics
  7. Don't rely on quick fixes, there are none


12 comments:

Pip said...

Amen to this! I agree 100%!

Unknown said...

This might be your best post ever. Thank you!

Unknown said...

Thanks Gals!

Heather, thank you, that means so much coming from you!

Unknown said...

Love this! Thank you!

Anonymous said...

Your Right Dusty, & I Don't Blame You, I Know I am Guilty Of This & I apologize but because of your guidance, I Finally Got The Compounded Testosterone & Estrogen That I have been trying to get forever. Finally my doctor is working with me. I have come a long way thanks to your group. I feel so much better because of you. I Don't Whine But I am guilty of repeating myself & I am sorry for that. Sure do miss you on the forum.

Unknown said...

Thanks Amber!

Unknown said...

Pamm,thanks for your post. More than anything, I want you to get better.

Unknown said...

I was just diagnosed last week with AI by an endochronologist after not responding to a brain surgery like i should have. All of this is brand new and we really did not get a lot of information. Still waiting to hear if it is primary or secondary. I do understand your ref. to physiological dosing but admittadly have a lot more to learn. I am an ultramarathon runner and thought that was the end of that by the way they were talking. I plan on atacking this just like i do going into a 24 hour race. If you dont put in the work, your not going to get results. Right now i am overwhelmed and not sure what my next move is. I dont go back to the endo until Dec. 5th. Meanwhile they are telling me, whatever you do don't get sick and if you exercise start very slowly. They just really didnt explain the dosing of the hydrocortison. Right now i am truggling with the dose as it has me pretty nauseated. I plan on reading and rereading your post. Thank you for the information.
Adam

Matthew @ Lasik for Your Surgeon said...

Yeah, people and their fears...

Unknown said...

Hi Adam, Please come join us at www.addisonssupport.com forum.

There's no reason you can't be your own best advocate and do ultras again. Hell, I'm a no talent and did an 8.5 day 314 mile race...

Anonymous said...

Such a great post! I've been away from it for a while, and thought of you while I was looking for a whisper of inspiration. Found. Thank you.
Darcie Plunkett
NY

Unknown said...

Thanks Darcie!