Rant: The prescribing and adherence to low doses of cortisol

People who are diagnosed with adrenal insufficiency should be taking the lowest possible dose of hydrocortisone (HC) possible.  Fact.  What is the lowest possible dose?  It all depends upon your physiology, your diagnosed and undiagnosed comorbid conditions and the amounts of other hormones you are on.

How does your doctor determine how much HC you should be on?  Pathetically enough, he basically pulls a number out of his ass with no regard for your quality of life or clinical symptoms.  He likes to err on the side of a lower dose and very poor quality of life.  The generally recommended guidelines in medical literature are about 15-25 mg of HC per day without any regard to activity level, binding globulins, other hormones you are taking that affect cortisol metabolism or the other diseases you have.  

I know of very, very few people who can function well on 15 mg of hydrocortisone a day.  I know of only a few.  Some have decent quality of life.  Some do not but prefer to suffer from all of the symptoms of under replacment:  bronzing, nausea, vomiting, low bp, fatigue, hypoglycemia.  In addition, cortisol is needed for bone growth.  Not enough cortisol INCREASES your risk of osteoporosis so if you think you're doing yourself favors by suffering through the symptoms of under replacement to make your doctor happy, you are actually a martyr and a little suicidal.  

The average replacement dose is about 20 mg of HC per day.  The recommendation is based on nearly nothing.  There is no monitor for cortisol that's widely available to the public.  There are no guidelines for cortisol numbers based on the dose, patient's metabolism, comorbid conditions and time of the last dose.  The 20 mg of HC number was collected in a hospital setting on people who sat around all day getting blood drawn.  When's the last time you sat around all day, chatting, reading magazines and waiting to have blood drawn?  Most of us don't have that sedate or stress free of a life and need more cortisol to mow the lawn, take care of kids, work full time, fight with our spouses and exercise. 

If you find that you need more than 20 mg of HC per day to function well, don't let your doctor tell you you will be over replaced with cortisol if you take more.  Some of us have active lifestyles, stressful lifestyles and/or thyroid (GH too) replaced at too high of a dose for someone who only has a fixed amount of cortisol in her system.  Know the symptoms of over replacement.  Tell your doctor what they are and which ones you don't have from deviating from his recommendations.

It is far more dangerous for you to be under replaced than properly replaced.  You are unable to store glycogen in your liver if you do not have enough hydrocortisone.  If you do not have glycogen stored in your liver, you will more easily become hypoglycemic.  Hypoglycemia is when you don't have much sugar in your blood.  The sugar in your blood feeds your brain and muscles.  You can die from severe hypoglycemia.  

If your doctor is only prescribing the bare minimum of hydrocortisone, how do you keep a small stash in your wallet, gym bag, desk or purse?  What do you do if you vomit and need to triple your HC dose?  How do you increase your HC for exercise?  Heaven forbid you get a fever and need to double or triple for days in a row?  If you're willing to share your strategies on this, I'd love to hear them.

Rant: "Normal" cortisol results and cortisol testing.

"Treatment surveillance of chronic glucocorticoid replacement is mainly based on clinical grounds because no objective assessment has proven to be reliable for monitoring replacement quality. ACTH cannot be used as a criterion for glucocorticoid dose adjustment, since in primary adrenal insufficiency it is invariably high before the morning dose and rapidly declines with increasing cortisol concentrations after glucocorticoid ingestion.122,124 Aiming at morning ACTH values continuously within the normal range would, therefore, lead to chronic overreplacement."

 Arlt, W., & Allolio, B. (2003). Adrenal Insufficiency. Lancet, 361, 1888

It is clear in the adrenal insufficiency literature that cortisol ranges are useless for determining a patient's cortisol replacement needs yet uneducated, poorly read doctors continue to ask their patients to submit and pay for cortisol and ACTH testing to determine the patient's replacement needs.  There are no reference ranges for cortisol replacement!  How can any determinations be safely made by your physician if there is no data?

A doctor will ask you to get a morning cortisol test and sometimes ACTH.  Did he tell you how much HC to take?  Did he tell you when to take it?  Does he have literature to determine what the proper numbers should be based on dosage of HC and timing of the dose (the answer to this is NO because it does not exist.  If you have access to this literature and I am wrong, PLEASE post a link in the comments.  I want to be wrong about this.)

The way you feel and your symptoms have to determine cortisol replacement.  Doctors constantly want us to take lower and lower doses of HC but the medical literature says replacement needs to be based on "clinical grounds".  The Arlt and Allolio quote is just one of many reinforcing this position.
A well meaning doctor might ask you to pay for an ACTH serum test to help you determine your cortisol replacement.  He's misinformed.  ACTH is a poor indicator of cortisol replacement and getting this test done can actually harm you if the results are interpreted incorrectly...and they will be interpreted incorrectly.  Your doctor might suggest you start taking less HC or more without taking your "clinical grounds".  Duh!  Are you constantly nauseous, have diarrhea, hypoglycemia and/or low blood pressure but your ACTH draw is low?  Does your doctor want to lower your HC dose based on the ACTH result but not want to pay attention to the fact that 1)  ACTH can't be used to determine HC replacement  2)  it has to be done under specific lab conditions and it probably wasn't  3)  it has to be done first thing in the morning  4) ACTH is pulsitile and fragile so even under the best of circumstances, it can still have an abnormally low result.

Enough about the futility of the meaninglessness of ACTH results.  On to the dangerous misinterpretation of cortisol testing in the undiagnosed.

Doctors will often randomly test cortisol in the undiagnosed yet have NO CLUE as to what the results should be.  They look and see if the lab flags the result as "High" or "Low".  This is one of the most misleading and dangerous things an uneducated doctor can do.  The range is usually 2-20 (give or take, depending upon the lab).  Anything that falls within that range is considered "normal".

Let's look at the "normal" range more closely.

A morning cortisol (8 am) should be somewhere around 20 with the person being asymptomatic for adrenal insufficiency.  An 8 am cortisol of 15 or lower (in someone who is undiagnosed) is a reason to run an ACTH stim test.  Let's just use a little common sense here. A decent morning cortisol should be 16-20ish based on the fact that a cortisol of 15 or lower is grounds to run an ACTH stim test.

A midnight cortisol should be 2-4.

If you have an 8 am cortisol of 12 and a doctor who doesn't know that the cortisol reference range is 2 at midnight and 20 at 8 am.  You're screwed and dismissed as normal despite all of your other symptoms that correspond with adrenal insufficiency.  You are a victim of the "normal" reference range.

Get copies of all of your labs.  Study them.  Learn what they mean.  Search out health forums (mine is free) and get help.  I can provide assistance and guidance if you want to pay for it.  If you suspect you have adrenal insufficiency, you are probably right.  It's hard to convince a physician who only sees "normal" numbers.  All of the numbers need to be taken into account, so do symptoms and past labs.

Rant: Reference ranges can be meaningless (Alternate title: Ma'am your results are normal! You are actually depressed.")

You read that right, reference ranges can be meaningless or even misleading to your healthcare practitioner.  For people with adrenal insufficiency, reference ranges that apply to "normal" populations do not apply to us.  Reference ranges themselves are ridiculously flawed as well.  Applying flawed ranges from the wrong population to people with adrenal insufficiency is a terrible idea for people whose major symptom is fatigue.

On the other hand, I'm not saying to totally and completely disregard reference ranges either.  The numbers you get and where you fall within the reference range, when paired with symptoms and other tests that should be run with one another can be worth their weight in gold.  The numbers can point you in a direction for research that's specific to your condition.

Thyroid as a classic example

• It's suggested that each lab that runs TSH testing establish it's own, standardized ranges due to differences in assay performance.  Often, they don't.  The doctor who interprets your labs does not know whether or not the lab has done this.
• TSH normal lab ranges vary from .5 to about 4.5 yet 80% of the US population has a TSH of around 1.5.  When you're on thyroid replacement, TSH is a useless indicator of replacement status since the thyroid feedback loop is interrupted by thyroid replacement medications.
• TSH is often run on its own.  In populations such as the adrenal insufficient population, TSH can be useless or misleading.  TSH can look "low" as in outside of the lab range.  Usually, low TSH makes it look as if someone is hyperthyroid.  In AI populations, any number of problems can exist.  One of the most misleading, a pituitary or hypothalamic deficiency/autoimmune issue/adenoma which keeps a person from releasing TSH.  TSH stimulates the thyroid to make the bioavailable hormones.  If the thyroid is not getting enough TSH, not enough thyroid hormone will be released by the thyroid and the person will be hypothyroid.  A doctor will only half the picture will lead the patient on an expensive, unnecessary, complicated journey.  Everything could have been figured out quickly by running the pair of numbers that are a good indicator of thyroid status for a person NOT on replacement thyroid hormones:
• TSH
• free T4
• You may ask, "Why free T4? My doctor runs Total T4, isn't that good enough?"  Nope.  Let's talk reference ranges.  Your total T4 can be well within the normal range but the free (bioavailable) portion, the part that controls your metabolism and regulates how you feel, is affected by binding proteins.  When you have adrenal insufficiency, you may be deficient or over replaced on other hormones which affect how much bioavailable thyroid is available to your body.  If you're replacing estrogen, you HAVE to get free T4 tested!  Estrogen changes the binding proteins so that more thyroid is bound to proteins (so your Total T4 looks "normal") but you will be symptomatic for thyroid issues because very, very little is "free" or available to keep your metabolism working.
• The "normal" free T4 range is often .9 to 1.7.  Doctors refuse to acknowledge your symptoms if your frees are within the "normal" range.  Most women with AI feel best at a certain free T4 and men at another (anecdotal evidence).  This is probably because people with AI have a fixed amount of cortisol with which to process thyroid hormone.  Some doctors seem to consider it a crime against humanity for people on thyroid replacement to desire to have a midrange free T4.  I don't understand why.  Why have a reference range if you can't shoot for a sweet spot within it where you're asymptomatic?
• Thyroid has a circadian rhythm, "normal" ranges have been determined for a morning blood draw.  How many times has your doctor shuffled you off to the lab in his office right after your appointment in the afternoon.  Afternoon thyroid blood draws are flawed and the ranges used by the lab are useless.

Thyroid is just one example of the many ways reference ranges can be meaningless.  Labs need to be run the same way every time so you can compare apples to apples.  They need to be paired with other labs to have any meaning what so ever.  Reference ranges have to be evaluated in light of the comorbid conditions of the patient and medications that are being taken by the patient, when they were taken and in what dosage.

Don't despair if you feel awful and your test results are "normal".  Keep collecting your results, keep trying to understand them keep asking for help.  What I've found is that with more comprehension of the tests I've had done to me, the more I understand that "normal" results were completely and totally abnormal.  When I've felt terrible and had "normal" results, I was told I was depressed.  No, I wasn't depressed, I was dying.

Watch for Part 2 of this rant.  "Normal" cortisol results and cortisol testing.