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5:25pm February 23, 2014

The important difference between ‘adrenal fatigue’ and adrenal insufficiency.

I’m becoming very concerned about this after having been diagnosed with adrenal insufficiency (probably related to a faulty pituitary gland) on the basis of very low cortisol levels in blood tests (less than 1) and an ACTH stimulation test, as well as symptoms, some of which are pretty severe.  

Here’s what The Endocrine Society (an international society of endocrinologists and other professionals dealing with endocrinology and hormone-related health issues) has to say about the difference between ‘adrenal fatigue’ and actual adrenal insufficiency:

What’s the difference between adrenal fatigue and adrenal insufficiency?

While adrenal fatigue is not accepted by most doctors, adrenal insufficiency is a real medical condition that occurs when our adrenal glands cannot produce enough hormones. Adrenal insufficiency is caused by damage to the adrenal glands or a problem with the pituitary gland—a pea-sized gland in the brain that tells the adrenals to produce cortisol.

A person with adrenal insufficiency may be dehydrated, confused, or losing weight. He or she may feel weak, tired, or dizzy, and have low blood pressure. Other symptoms include stomach pain, nausea, vomiting, and diarrhea.

Adrenal insufficiency is diagnosed through blood tests, and can be treated with medications that replace the hormones the adrenals would normally make.

This is from their fact sheet on adrenal fatigue posted on the Hormone Health Network website, which is a site for public education about hormone-related health issues.  You can get a printable PDF here.

Adrenal fatigue is basically a diagnosis promoted by quacks to sell various dodgy ’health supplements’.  It’s also promoted by people whose expertise is simply not in the field of endocrinology and they don’t know better.  But either way, the diagnosis can be dangerous because it prevents people from getting help for whatever is really causing their symptoms, and may cause people to take treatments that are harmful to their health.

Here’s what the fact sheet says about it:

What is “adrenal fatigue”?

The term “adrenal fatigue” has been used to explain a group of symptoms that are said to occur in people who are under long-term mental, emotional, or physical stress. Supporters of adrenal fatigue say that you may be more likely to develop this condition if, for example, you have a stressful job; are a shift worker, working student, or single parent; or if you abuse alcohol or drugs.

Symptoms said to be due to adrenal fatigue include tiredness, trouble falling asleep at night or waking up in the morning, salt and sugar craving, and needing stimulants like caffeine to get through the day. These symptoms are common and non-specific, meaning they can be found in many diseases. They also can occur as part of a normal, busy life.

No scientific proof exists to support adrenal fatigue as a true medical condition. Doctors are concerned that if you are told you have this condition, the real cause of your symptoms may not be found and treated correctly. Also, treatment for adrenal fatigue may be expensive, since insurance companies are unlikely to cover the costs.

And here’s what it says to do if you’ve been diagnosed with it or told that you might have it:

What should you do if you have been told you have adrenal fatigue?

Doctors urge you not to waste precious time accepting an unproven diagnosis such as “adrenal fatigue” if you feel tired, weak, or depressed. If you have these symptoms, you may have adrenal insufficiency, depression, obstructive sleep apnea, or other health problems. Getting a real diagnosis is very important to help you feel better and overcome your health problem.

Note that I’m not saying, and neither are they saying, that being diagnosed with adrenal fatigue means that your symptoms aren’t real.  It may actually be that you have adrenal insufficiency – in which case you’re not getting proper treatment for a disease that could kill you if you went into adrenal crisis.  It may be some other disease.  And sometimes your symptoms may not even be severe enough to be a disease at all, depending on how overzealous the quack is (many will find a diagnosis for everyone who walks through their door with any complaint at all).

Why am I so concerned about this?  When I was younger, I was the victim of quackery myself.  I wasn’t misdiagnosed with adrenal fatigue (although I vaguely remember someone suggesting it as a possibility), but I was misdiagnosed with 'systemic candida overgrowth’.  There are a lot of parallels between the two misdiagnoses:

1.  Each one is correlated to a real disease and sounds a lot like the name of a real disease, but itself is either a misdiagnosis or not a real disease at all.  

(Systemic candidaisis is a severe fungal infection caused by having a severe immunodeficiency such as AIDS, that can lead to sepsis and is very serious.   As diagnosed by quacks, it’s an illness that explains every symptom under the sun and can be contracted by just about everybody.)

2.  In each case, the real disease is much more dangerous than the false diagnosis.

3.  In each case, the real disease has genuine tests that can be carried out to see if you find it.  And in each case, the false disease has false tests that lend an aura of legitimacy, but actually are carried out by either sending the test to a lab that is paid to falsify your results while sounding very official, or is a genuine test that the doctor is misinterpreting the results of (for instance everyone has candida in their body, so the presence of candida isn’t actually cause for alarm unless there’s evidence of an infection).

4.  In each case, the treatments for the false disease can do serious harm in many cases.  Or they can expose someone who doesn’t have a disease, to potential side-effects that are only worth it if you have the disease that the treatments really treat.

5.  In each case, many of the treatments for the false disease would not treat the real disease even if you had it.  So if you really do have the real disease, being diagnosed and treated by a quack is unlikely to do you any good.

6.  In each case, being diagnosed with the false disease means that you’re not getting treatment for the real cause of your symptoms.  If you have something real, that means you will suffer and (if your actual disease is dangerous) possibly even put your life at risk or die, all because you’re getting treatment for the wrong disease.

7.  In each case, quacks will deliberately lead you to distrust doctors who could actually find out what’s wrong with you.  While there are genuine reasons to potentially distrust the medical profession (they have been shown by their own research to frequently discriminate against women, people of color, disabled people, poor people, trans people, and people with mental illness, or even people they suspect of being any of these things, just for starters), quacks are even less trustworthy, they’re out to get your money and nothing more.

8.  In each case – and this is really unfortunate… if you go in to a real doctor and tell them “I have [insert quack diagnosis here]” the real doctor is far less likely to take you seriously and find out what your real condition is.  Many doctors are biased into thinking that if you’ve been misdiagnosed with something by a quack, then you couldn’t possibly have any genuine symptoms or diseases to worry about.  This is horrible, because it just compounds the injury done by the quacks.  But I know many people it’s happened to.  Instead of attacking the quack’s credibility, many doctors attack the patient’s credibility… which sends patients back into the waiting arms of the quacks, who frequently make a big show of “listening to patients” and “taking them seriously” so they can get the money out of us in the end.

Something else to be aware of…

…sometimes real life mimics the quack explanations for things, even when the things aren’t real.  For instance, I had a huge amount of stress in my life, to the point I constantly felt a feeling of adrenaline coursing through me.  I mean that in terms of the colloquial use of the word adrenaline, I have no idea what was actually going on.  And then one day that feeling just went away, right at the same time that I experienced a catastrophic health crash that I never recovered from.  We now think it’s possible that what I felt when that change happened was a drastic shift in the amount of cortisol I was producing.  But that doesn’t mean that the stress I was feeling for all those years, caused the adrenal insufficiency.  The adrenal insufficiency appears to be caused by something wrong with my pituitary gland, not my adrenal glands, just for starters.

So just because the story of your illness lines up with the story a quack tells for why you have an illness, it doesn’t mean it’s true.  There are plenty of  people with adrenal insufficiency who never had the history of severe stressiness that I had.  (And plenty who do.  I mean, people tend to either have a lot of stress, or not, and both types of people get adrenal insufficiency.  And when you stop making enough cortisol, your physiological reactions to stress change and feel different.)  Just because two things happen, doesn’t mean they’re necessarily related.  

In fact, I’ve been kind of afraid to tell my doctors this history (although I did tell them), lest they think that I believe I have 'adrenal fatigue’ or something.  The main reason I told them was not because I thought it was the cause, but because I thought it might pinpoint the time that things started getting noticeably worse.

Also, occasionally a previously-thought false diagnosis gets elevated to the status of a real diagnosis, but most of the time quacks exploit that remote possibility to promote diagnoses that will never, ever be considered real.

By the way, this is not an attempt to draw lines in the sand and say “I have a real thing and you don’t,” like it’s some kind of status game.  I’ve seen people do that with illnesses and it’s a shitty thing to do.  Because of my own history with quackery, I’m genuinely concerned about this issue.

[Please also note that I’m talking about physical, medical illnesses that have physical means of diagnosing and testing them.  The process of understanding and identifying psychiatric conditions is so totally different than the process of understanding and identifying physical conditions, that there is no comparison.  (And in fact attempts to make psychiatric conditions fit the standards given to physical conditions often fail, because they’re not the same and the process of coming up with the diagnoses isn’t the same, even when psychiatric conditions have a physical component.)  So please don’t apply any of what I’m saying to people who decide they have a psychiatric condition – because that’s an area where people who do their research really can often understand and evaluate themselves at least as well, or as poorly, as a doctor can, and where doctors vastly disagree with each other over definitions and terms because pretty much anyone with a theory can get published.  It’s just not the same, at all, and arguments directly comparing the two don’t take any of the different circumstances surrounding the two into account.  Until and unless there are genuine neurological or physiological tests that reliably tell you exactly what psychiatric diagnosis a person has, then you can’t make these comparisons.  And that may never even be possible.  So please don’t use what I say to pick on people with mental illness.]

So back to what I was saying…

When a made-up medical diagnosis is similar to a real diagnosis, two groups of people suffer.  The people diagnosed with the made-up diagnosis suffer from being given ineffective and potentially dangerous treatments, and from not getting real answers as to what is going on with them (which can also be dangerous, especially if their real condition is life-threatening).  The people diagnosed with the real diagnosis suffer because the presence of the false diagnosis makes people assume that this is what we have, and blow off what can be serious concerns.  This isn’t limited to adrenal insufficiency, it can also happen with other conditions mispromoted by quacks, such as systemic candida and celiac disease.  And there are also people who have the real diagnosis, who are misdiagnosed with the false version of the diagnosis, who simply don’t get proper treatment for what they actually have, and get treated as illegitimate when they might actually have the real thing, so they suffer a double whammy.  

So these false medical diagnoses do harm to me and other people with the real version, as well as equal harm to people who are misdiagnosed with them.  Be careful whenever you encounter a diagnosis that someone claims “almost everyone has”, or that is accounted for by a long list of vague symptoms that could be symptoms of many different diseases, or could even sometimes be interpreted to happen in people without a disease.