To celebrate #ALifetimeOfHormoneHealth, we are sharing Benedict’s story of coming to terms with adrenal insufficiency, and what it means for him to be dependent on replacement steroid medication. In sharing his experiences, Benedict hopes to raise awareness of the complex role of cortisol in daily life, and the difficulties of mimicking a natural hormone pattern with replacement medication.
Benedict’s story
The first thing to get my head around was that I would have to take hormone replacements for the rest of my life. This alone was a lot to take in. I initially thought I would just have to take them for a short while, like a course of antibiotics, but I soon learnt that this was forever! At the time, swallowing tablets was difficult for me. I remember being given vitamins and cod liver oil tablets as a child and having such great difficulty taking them, that I pretended to take them and then dispose of them. I soon got used to taking hormone replacements though; I had to, as they are essential for my survival.
Cortisol replacement: A delicate balance
Cortisol replacement is incredibly complex and cannot fully mimic the body’s usual cortisol production. It’s a fine balancing act; too little, a deficiency and the body cannot function, which can lead to death. Too much, even a small amount, risks a host of side effects. Normally, the body regulates cortisol minute-by-minute, second-by-second. Both the hypothalamus and pituitary can sense whether the blood has the appropriate amount of cortisol circulating. If there’s too much or too little cortisol, these glands respectively change the amount that gets released into the bloodstream. This is what is referred to as a negative feedback loop.
Naturally, cortisol production in the body begins to build at around 3 am, and peaks at around 7-9 am, giving us that get-up-and-go when we wake up. There is then a further mini-peak around midday and by evening time, levels have tailed off. This is known as the circadian rhythm. Unfortunately, conventional hydrocortisone replacement cannot reproduce this, so it’s easy to inadvertently under or overreplace, and could at least in part explain why patients with adrenal insufficiency suffer from a poor health-related quality of life, with an increased risk of mortality, sleep disturbances, impaired psychological well being and also, at even slightly too high doses, significant weight gain and obesity, worsening of cardiovascular risk factors and defects in bone turnover. It’s hard to replicate Mother Nature and my replacement is crude in comparison. I used to take hydrocortisone three times a day, on waking at around 8.30 am, at lunch time and in the early evening, producing three unnatural peaks of the hormone in my system, rather than the normal steady secretion.
In his story, Benedict shares his in-depth learnings from living with adrenal insufficiency for many years. To find out more about how Benedict navigates this tricky cortisol balancing act, read his full story below.
There are so many rare conditions. Mine is just one. I believe the reason why this happened to me, my purpose in life, is to create awareness, so my condition is more understood, so those living with rare and hidden disabilities can live their lives without hostility and fear, so patients like me don’t risk losing their lives. If my rare condition becomes just slightly less rare by more people being aware of it’s existence and seriousness, then I feel my life has been an accomplishment, more than I could ever have dreamt.