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.

Wednesday, October 30, 2013

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


HollyM said...

Very good reading! I'm still working on finding the right balance of cortef and synthroid for myself. I was pleasantly surprised yesterday to hear my new young doctor suggest my thyroid was a little low.bshe was looking at the T4 which other doctors had not understood at first.

Unknown said...

Thanks Holly! I hope your doctor is checking FREE T4. T4 can be highly or loosely bound to TBG, making the bioavailable (FREE) portion appear quite different and you will have symptoms that conflict with the TOTAL T4 numbers.