Content warning: potentially distressing descriptions of medical procedures and symptoms, medical negligence.
You may or may not have already read that I used to suffer from a condition called “Hypoadrenalism,” an illness which prevents your adrenal glands from properly producing the hormone cortisol. This can have many different causes which we will discuss in greater detail below.
Hypoadrenalism is relatively rare, and one of the hardest things about my recovery was the complete lack of awareness from those around me about how hard the diagnostic process was and just how vital cortisol is for living a normal life. (Think comments like “you have low cortisol? you must be really calm!” or “lucky you, I’ve heard having low cortisol levels helps you stay slim!”). So instead of continuing to be bitter and twisted about it, I’ve decided to share and dispel what I have found to be the most common misconceptions about cortisol.
Disclaimer: This is not medical advice. The scientific information shared about the nature of cortisol and its associated diagnostic procedures are for educational purposes only and are accurate as of the time of posting.
Myth no.1 – Cortisol is “bad”
Cortisol seems to get its bad wrap from being a “stress” hormone. The negative impact of higher cortisol levels due to chronic stress has received a fair bit of media coverage in recent years. While this is definitely a problem in some people’s lives, cortisol is an important hormone like any other and is responsible for the stability of many bodily functions.
When it is present in the right quantities, it gives you the energy you need to cope with the normal stresses of life. It also helps you recover from stress faster by re-regulating vitals like heart rate and blood pressure after the stress has passed.
Perhaps most importantly, cortisol allows your body to deal with the physiological stresses of illness or physical exertion, for example, fighting off a cold or going for a run. In fact, it is essential in aiding your immune system in protecting you from things like viruses and bacteria and in facilitating normal activity levels throughout the day.
Myth no. 2 – Cortisol is only present in the body during stress
While cortisol does rise in response to physiological or emotional stress, it also fluctuates throughout the day. In healthy people, cortisol levels naturally rise in the early hours of the morning and peak within an hour of waking up, facilitating the normal changes that happen in the body when we transition from asleep to awake. Cortisol levels then fall gradually during the day and become very low during the night. This pattern follows our circadian rhythm and is important for a healthy sleep cycle.
Myth no. 3 – You want your cortisol levels to be as low as possible
Now this is where I really get up on my soapbox.
While the average person may benefit from lowering their day to day stress levels and therefore their day to day cortisol levels, this misconception is harmful for those who suffer with various forms of Hypoadrenalism. People with cortisol levels that are abnormally low at rest OR cortisol levels that do not rise adequately in response physiological stress will likely experience rapid weight loss, long-lasting illnesses (or the exacerbation of existing co-morbidities), muscle pain and weakness, intense fatigue, confusion and memory loss, nausea and vomiting, and an inability to maintain stable blood sugar and blood pressure. While the level of impact depends on the severity of each person’s case, Hypoadrenalism does have the capacity to be fatal, especially when it is left undiagnosed or improperly treated.
Myth no. 4 – Abnormally low cortisol levels are the result of poor lifestyle choices
THIS. IS. WRONG.
Poor lifestyle choices may be the cause of many problems, but Hypoadrenalism is not one of them. Not only may people with Hypoadrenalism be unable to exercise safely, but they may actually require more calories than normal to maintain their weight, as well as excess salt and sugar to maintain safe blood sugar and blood pressure levels. This may lead to the incorrect assumption that their symptoms are being caused by making “poor” choices. Professional treatment is essential for getting back to a regular life, diet and exercise regime. DO NOT tell your friend with Hypoadrenalism that they will feel better if they workout more and eat differently!
In reality, there are several types of Hypoadrenalism which are caused by different underlying health problems. The most well-known is Addison’s Disease, the primary type of Hypoadrenalism, caused by an auto-immune problem which impairs the ability of the adrenal glands to produce cortisol.
There is also secondary Hypoadrenalism, which can be caused by problems with the pituitary gland, a gland which produces another hormone called ACTH that is responsible for stimulating the adrenal glands to produce cortisol.
There are also situations where long-term steroid use (for example from asthma inhalers, nasal sprays, prednisone tablets etc.) can cause HPA axis suppression. The HPA axis is the feedback loop between the Hypothalamus (part of the brain), pituitary gland and adrenal glands. When this feedback loop is disrupted the body may be unable to produce cortisol at normal levels.
Although this type of Hypoadrenalism is usually temporary, the recovery time varies wildly and it can take years for some people to make a full recovery, especially if they had to wait a long time to be diagnosed and treated. This type has faced resistance from some members of the medical community. However, several quality studies exist that demonstrate the reality of this illness, examples of which will be linked below.
There are also a few other circumstances where rare illnesses such as tuberculosis can lead to Hypoadrenalism, more information about these will also be linked.
Myth no. 5 – Hypoadrenalism can be EASILY diagnosed with a simple blood test
Assuming that you can make an educated guess as to which type of Hypoadrenalism you may have (and your doctor believes you), getting properly tested is no mean feat. Unfortunately, in my experience, many doctors are not educated on how to accurately test for each type of Hypoadrenalism.
The A.M Cortisol Test (or Cortisol Level Test) is usually the first port of call. It tests your peak resting cortisol and ACTH levels first thing in the morning. It requires fasting, withdrawing from certain medications, getting to a testing centre by 8am and ensuring that no stressful or emotional events happen on the way there. There were times that I was dismissed after inaccurate test results as doctors were not properly informed about the careful conditions required. They seemed especially unaware that things like asthma inhalers and the contraceptive pill could skew results.
If your cortisol IS below a certain threshold after this test you may already be able to start treatment. However, you will likely need further testing to determine the specific cause of your Hypoadrenalism.
This may include the ACTH Stimulation test (also known as the Short Synacthen Test) in which your cortisol levels are measured before and after an injection of ACTH. This determines whether or not your adrenal glands respond to a rise in the ACTH hormone in a normal way and can be useful in diagnosing certain types of Hypoadrenalism. However, the gold-standard in assessing the functioning of the full HPA axis is the much more challenging Insulin Tolerance Test (or Insulin Induced Hypoglycaemia Test).
The Insulin Tolerance Test is very important as it reveals how your adrenal and pituitary glands perform in a situation of simulated physiological stress by simultaneously measuring your level of cortisol, ACTH and Human Growth Hormone (produced by the pituitary gland). This not only indicates whether or not your cortisol levels can adequately rise to keep you safe and healthy in the event of something like an illness or accident but also helps determine which part of the HPA axis is the primary cause of your illness.
Sadly, some clinics are not even aware of this test, and even when it is available, it is rarely performed due to the need for hospital admission and the presence of multiple doctors. You again fast and withdraw from medications, but are then injected with short-acting insulin while doctors take repeated samples of your blood until your blood glucose levels drop low enough for your body to recognise the situation as an emergency. This can cause some distressing symptoms. In my case, I experienced blindness, slurred speech and the sensation that my body was disintegrating. The forced hypoglycaemia also has the potential to deplete the glycogens stored in your liver, causing intense fatigue and confusion that can continue into the following days. (I myself had to be rescued from a car yard the next day after I got lost on my way to school.)
Please note that despite its extremely unpleasant nature, this test IS safe. Your blood glucose levels are monitored continuously and multiple doctors are always present, including one who’s sole purpose is to be ready to inject you with dextrose if needed. You will find a link below that outlines a more detailed summary of the safety precautions undertaken by hospitals.
There is so much more to say about the difficulties that people with Hypoadrenalism face, but I hope that this post has given you some insight into the importance of healthy cortisol levels and safeguarded you against some of the misinformation that is often circulated about this complex issue. In the future, I intend to write more about how Hypoadrenalism is treated and my personal experience with Hypoadrenalism from HPA axis suppression. However, as I suffered memory loss, dissociation and psychological trauma at the time, it’s taking me some time to piece together my story and decide how I want it to be told. In the meantime, if you or a loved one are suffering from/might be suffering from low cortisol, please take a look at the links below which give further information about the topics discussed in today’s post. You are also welcome to contact me if you have any questions, I care deeply about helping people through this difficult situation in anyway I can.
P.S – I would eventually like to edit this article to include information about how certain psychiatric conditions (such as Major Depressive Disorder and Bipolar Disorder) can sometimes affect cortisol levels. I would particularly like to add an explanation as to how the Insulin Tolerance Test can be used to differentiate between low cortisol levels caused by mental health conditions and low cortisol caused by the body’s inability to produce or signal the production of cortisol.
Unfortunately, despite having a clear memory of reading about this, I have been unable to find the original source I viewed. If you are knowledgeable about this topic or are aware of the location of reputable scientific articles about this please Contact me .
Explanations of the role of cortisol and the symptoms that may occur when cortisol is too low or too high:
WebMD – https://www.webmd.com/a-to-z-guides/what-is-cortisol#1
You and Your Hormones – https://www.yourhormones.info/hormones/cortisol/
Explanation of the link between cortisol and circadian rhythm (and the importance of healthy cortisol levels for good sleep patterns):
Healthline – https://www.healthline.com/health/cortisol-and-sleep
Causes of hypoadrenalism (including rare causes):
Net Doctor – https://www.netdoctor.co.uk/conditions/liver-kidney-and-urinary-system/a3030/hypoadrenalism-underactivity-of-the-adrenal-glands/
Studies demonstrating the link between long term steroid use and HPA axis suppression:
The Journal of Allergy and Clinical Immunology – https://www.jacionline.org/article/S0091-6749(98)70157-5/fulltext
The Journal of Clinical Endocrinology & Metabolism in Oxford Academic – https://academic.oup.com/jcem/article/100/6/2171/2829580
National Centre for Biotechnology Information – https://www.ncbi.nlm.nih.gov/books/NBK279156/
The BMC Pulmonary Medicine Journal – https://bmcpulmmed.biomedcentral.com/articles/10.1186/1471-2466-8-1
The A.M Cortisol Test:
UCSF Health – https://www.ucsfhealth.org/medical-tests/003693
The ACTH Stimulation Test:
Lab Tests Online – https://labtestsonline.org/tests/acth-stimulation-test
NHS Foundation Trust – https://www.gloshospitals.nhs.uk/our-services/services-we-offer/pathology/tests-and-investigations/short-synacthen-test-sst/
The Insulin Tolerance Test:
ScienceDirect – https://www.sciencedirect.com/topics/medicine-and-dentistry/insulin-tolerance-test
Archives of Disease in Childhood – https://adc.bmj.com/content/87/4/354 (outlines appropriate safety protocols)
The impact of hypoglycaemia on cognition:
American Diabetes Association – https://care.diabetesjournals.org/content/36/10/3240
ScienceDirect – https://care.diabetesjournals.org/content/36/10/3240
(Despite having discussed the impact of hypoglycaemia from the Insulin Tolerance Test with an Endocrinologist in 2014, I have only been able to find reputable articles about the impact of hypoglycaemia in a general context. However, I believe the information contained here is equally relevant to this specific situation.)