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, June 8, 2015

Rant: If your lab test results are not accurate, you're screwed. Take responsibility for yourself.

Sadly, your doctor has no clue about the protocols that need to be followed for drawing the blood tests he orders.  He might know what labs to order but what time of day, fasting vs. non fasting, diet, medications that are okay to take before or not and so on.  He definitely doesn't know what tube needs to be used, if the blood needs to be iced and/or centrifuged.  He should not know those things, they are beyond his scope.

Often, your doctor has no clue which labs to order for adrenal insufficiency.  That is another story entirely and I will probably go into depth about it in a book or upcoming blog post.

The phlebotomists, in my experience, run tests the way they have always done them.  Sometimes, they accurately record whether I was fasting or not.  I am not cutting on phlebotomists.    My guess is that the pay is not fabulous and the clients are not always the most pleasant.  It's always cold, crowded and rushed in the labs.  The working conditions are not ideal.  Add to that, a few of the tests we as Addisonian's require, are uncommon.  The phlebotomist probably assumes that the doctor has given the patient direction about time of day, medications and  fasting.  A phlebotomist is not a babysitter, a doctor is not a babysitter.  You need to be responsible for you.

Being responsible for yourself when it comes to health care or getting blood drawn is not something you should assume others will do for you.  It is something you need to do for you.  The United States was ranked 37th in medical care by the WHO in 2014.  HELLO!  Pay attention to as many aspects of your health care as possible (if you are able).  If you are unable to pay attention to protocols and labs, recruit someone from your circle of friend or family who can or hire me to do it.  Start with providing your doctor with accurate symptom information, next get your tests done as accurately as possible.

Think about this.  If the tests you have done are inaccurate, the interpretation will be inaccurate and your diagnosis or medications that the tests are based on will be inaccurate.  After all of the struggles you have gone through to get a doctor to listen to you and run these tests, do you need inaccurate and expensive as well as potentially useless tests done?    The answer is simple.  The answer is, "No!"  Inaccurate testing can be dangerous or even lethal if medications are administered or adjusted based on inaccurate information!

You do not have to be "bold" or "confrontational" (thank you for thinking I am "bold" in the lab.  Usually, I play the dumb girl who cries and hands a paper to the phlebotomist) to have your tests run as accurately as possible.  You or your advocate will need to know the following information:

  • What tests are being run? Get the list from your doctor.
  • What is your doctor attempting to accomplish with the information he receives from the tests he is running?  Is it a baseline test?  Being done out of curiosity?  To adjust current medications?
  • If you want the BEST interpretation possible from your test results, ask how the results will be interpreted BEFORE the test are run.  For example, what is a normal result for an upright renin draw.  Correct answer, middle to upper third of range with a sodium of 139-141.  See Arlt and Allilo's Adrenal Insufficiency published in the Lancet in 2004.  Page 1889.
  • What lab will be running the results?  Call the lab prior to the test to see where they send them or what protocols they follow.
Next:
  • Go to the lab's website or use one of these to get a good idea of what protocol will be used.
  • Print off each test protocol.
  • Read it.
  • If something stands out, highlight it.
    • Let's take renin for example
    • Seriously, look at this one.  It's got a lot of stipulations.  They screw it up and it's going to be WRONG and then your doctor will put you on more or less Florinef than you need to be on.  
    • If the renin is not paired with sodium and is done wrong, there's yet another opportunity for misinterpretation of the results by your doctor that could actually kill you.
      • If your renin shows up too high, your doctor will put you on too much Florinef causing you to retain too much sodium, have too little potassium and your blood pressure will sky rocket.  Next, you will be put on unnecessary potassium supplements that will sky rocket your potassium and give you an upset stomach.  High potassium can give you a heart attack that kills you.
      • If your renin shows up too low, your doctor will cut your florinef.  You will be unable to retain sodium properly, your potassium will sky rocket and you could have a heart attack.  You will be orthostatic (dizzy when you stand up).  You will be fatigued from low sodium.  Low sodium over a long period of time causes osteoporosis.
  • Go to the lab the day/morning of the test having fasted if required, be there at the right time (some tests need to be run at certain times of day for proper interpretation-free T4, for example).
  • Bring your protocol sheet from the lab's website.
  • You can very nicely say that you know X test is somewhat uncommon and you've brought the protocol in case she (the phlebotomist) needs it.
  • Observe whether the right tube was used, if the blood was iced or centrifuged.
  • Refuse the test if the phlebotomist refuses to use the tube that the lab specifies.  You are a customer and you are paying for it.  
Starting with the right protocol for your blood tests is the starting point for getting the correct diagnosis as well as correct interpretation of results for adjusting medications.


Tests that need special protocols followed to give accurate results:
  • ACTH
  • Renin
  • Sodium
  • Ionized Calcium
  • free T3 and free T4
  • ADH 

You might think that me suggesting asking the lab to follow proper protocol is pushy and not right.  If you think this, you are destined to always feel that there is "nothing wrong" or you "don't deserve to be treated properly".  Stop being a martyr.  Believe that you deserve to feel well and be believed by your doctor.  Your symptoms are real.  If they weren't, you wouldn't humiliate yourself by going to the doctor and sharing your most intimate details of your bodily functions. You deserve good health care.  Go get it!


Thursday, June 4, 2015

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.

Monday, June 1, 2015

Rant: Prednisone is often a bad choice for people with adrenal insufficiency

I think we've all been told that we could take prednisone instead of hydrocortisone to manage our adrenal insufficiency.  "It lasts longer!  You don't have to take it as often!  You can take less!"  Yes, Yes.  No.  Sure prednisone lasts longer and you don't have to take a longer acting steroid as often but do you know why your doctor is telling you to take it as opposed to hydrocortisone?  Because he thinks you're in capable of taking hydrocortisone as often as you would need to so that you have proper steroid coverage and you'll end up in the ER.

For the record, there are a few people for whom prednisone will work better than hydrocortisone.  They may actually be noncompliant and take ownership of it.  They may have other inflammatory conditions that are helped by pred's long lasting effects.  Physiologically, it just may work better for a very small portion of people.  If you are one of these people, go for it.

Why is prednisone a problem?  It has a much longer half-life than hydrocortisone.  Hydrocortisone is bioidentical to cortisone, the hormone that the adrenals are supposed to release.  Hydrocortisone is converted to cortisol in the liver.  Cortisol in is a hormone that interacts with multiple other hormones in the body.  The ebb and flow of it helps release hormones, metabolize some as well as keep your blood pressure and blood sugar up.  Cortisol has a much shorter half-life than prednisone.  When you mess with half-lives, you're messing with the circadian rhythm.  When you mess with the circadian rhythm, how can you expect to optimize your health?  You can't.

Prednisone is also undetectable in a cortisol blood test.  Its chemical structure is different than cortisol.  Some doctors loooooove to test cortisol but forget that prednisone is undetectable in the blood draw.  They are puzzled at why an 8 am cortisol test would be so low when a patient had recently taken his or her daily dose of prednisone before the test.  They jump to the conclusion that the patient is not taking her prednisone as specified or is not on enough steroid.  In the case of the latter, the patient is then instructed to take more steroid (when it might not be justified by symptoms) which leads to over replacement, insomnia, ill health and a greater possibility of osteoporosis and type two diabetes.  Too much steroid of any kind can cause the problems listed.

Prednisone is so long acting that it does not ebb and flow the way hydrocortisone does.  You might think that's great.  It's not.  Your body is designed to have ebbs and flows.  For example if the steroid in your blood is not low at night when you are sleeping, growth hormone will not be released and you will have insomnia.  When growth hormone is not released consistently, you will be fatter, more fatigued, have less sex drive and less muscle mass.  None of those things contribute to optimal health.  This is just one example of how one hormone is affected by steroids.  There are many, many others.

Prednisone has little to no mineralocorticoid properties.  Mineralocorticoid properties help you retain sodium.  If you are in the hospital with a knee replacement surgery, on large doses of hydrocortisone (which has mineralocorticoid properties), have high sodium, low potassium and high blood pressure, prednisone is probably a good alternative to hydrocortisone for a short time.  On a day to day basis, you're probably better off with the hormone Mother Nature intended for you, cortisol.  A little mineralocorticoid goes a long way to helping you maintain your sodium potassium balance.  Often, if a doctor cares so little about a patient's quality of life that he prescribes prednisone, he's often uneducated about how to evaluate a patient's mineralocorticoid status (renin, electrolytes, orthostatic blood pressure reading).  If someone has low sodium (also called hyponatremia) constantly, osteoporosis will ensue.  Evaluation of a patient's need for Florinef (the mineralocorticoid of choice) is vital regardless of whether the patient is primary or secondary so that hyponatremia can be avoided.

Taking less prednisone than hydrocortisone is just a weird concept.  5 mg of pred is equivalent to about 20-25 mg of hydrocortisone but the predinsone is more potent at that dose.  I guess if you are a math person and lower numbers are better than higher ones, pred might be for you.  What I'm saying is that the number does not matter so taking "less" of a more potent drug and "more" of a less potent drug is just a silly concept for a doctor to present to a patient.  What matters is that a patient uses the lowest possible dose of a steroid while avoiding under replacement symptoms.

So, let's review.  Prednisone can mess with your circadian rhythm,release of hormones and metabolism of other hormones.  Prednisone has no mineralocorticoid properties.  Sure, you take smaller number of milligrams of it but you should be taking an amount that's similar to your hydrocortisone dose.  To me, it does not seem worth it to take prednisone once a day and have it last for only 8 - 12 hours from the time you take it so that you can be a "compliant" patient that feels like shit.

For you, prednisone might work.  If so, that's cool.  If you are saying to yourself, "I feel fatigued all the time, I'm gaining weight inappropriately, my blood pressure stinks, my blood sugar is through the roof, I sleep poorly and have terrible muscle mass" you might consider switching to an equivalent amount of hydrocortisone that's taken physiologically and see if it works differently or better for you.  If you go to your doctor and ask to be switched from prednisone to hydrocortisone, bring the conversion calculator with you!  It's amazing how often doctors switch someone from 6 mg (equivalent to 24-30 mg of hydrocortisone depending upon the calculator) of prednisone to 15 mg of hydrocortisone for no reason other than that's what they decided.  There is no logic to cutting someone's steroid dose in half and thinking that the experiment didn't work.  The doctor is setting you up to fail and feel miserable.  Take an equivalent dose when you switch.  You can always taper the dose down slowly over the course of time if that's an issue but start at an equivalent dose.  You will need to try the hydrocortisone for about two weeks to get yourself into a rhythm and comfortable with the dosing.  Don't do it for one day and say it doesn't work.

If prednisone is working great for you, terrific.  No need to comment and tell me how wrong I am about all of this.  I am happy for you!  For most people, hydrocortisone taken physiologically is the best choice.  If you are on prednisone and it's not working well for you, please consider discussing changing your steroid to hydrocortisone.  You deserve to live the best life possible.  When you have adrenal insufficiency, living the best life possible starts with hydrocortisone and physiological dosing.