Lots of people have similar questions, so i thought I’d write answers- sometimes I don’t explain it very well in conversations! It’s written so that non-patients/family can hopefully understand.
What is Adrenal Insufficiency?
Adrenal Insufficiency is a condition where the adrenal glands don’t produce any or enough of the stress hormone cortisol. Cortisol is required to stay alive and provides energy. It’s usually higher in the morning and decreases as the day goes on. The adrenal glands produce more cortisol to help combat ‘stressful’ situations the body encounters. You might have heard of ‘fight or flight’ reactions- cortisol plays a huge role in this.
Primary Adrenal Insufficiency (Addison’s Disease) is where the adrenal glands themselves don’t function. Secondary Adrenal Insufficiency is where something else is stopping the adrenal glands from functioning, for example, messages from the pituitary gland not reaching the adrenal gland telling it to produce cortisol.
Some patients take their replacement and can maintain normal lives. Others have symptoms including: nausea, pain, dizziness, fogginess, fatigue, poor memory, low blood sugar, problems sleeping, weight gain, anxiety, shaking, sweating, emotional outburtsts, irritability… In some cases of Secondary Adrenal Insufficiency, the adrenal glands can ‘wake up’ and start producing cortisol again. Each patient is different- the endocrine system is complex.
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How is it treated?
Patients see a consultant called an Endocrinologist and are prescribed replacements for cortisol, commonly known as steroids. There are a few different treatment options, depending on whether you have primary or secondary, and any other conditions which led up to diagnosis. Mine is Hydrocortisone, which I take 3 times a day: 10mg at 8.30am, 5mg at 12.30pm and 5mg at 5pm. This is my baseline dose, each dose lasts about 4-6 hours and taking them at the right times is really important. Notice how the morning one is the biggest dose? That mimics the idea that cortisol should be higher in the morning.
Stress dosing is doubling the dose- so 20mg/10mg/10mg for me. I do this when my body needs extra help to fight whatever is causing a stress on it.
Updosing is when I encounter a one off stressful event, which might not require the full stress dose. In this case, I wouldn’t double my doses, I’d keep my baseline but maybe add another 5mg in to see if that helps.
When would you stress dose/updose?
The most common things I stress dose for are infection, high temperature, injury, vomiting/diarrhoea or emotional upset. I would also need to stress dose for minor surgeries or dental work and long haul flights. Anything requiring anaesthetic or invasive procedures would require supervision at a hospital and possibly IV hydrocortisone treatment.
I would consider an updose on days where I’ve ‘done too much’ and I’m struggling to manage symptoms e.g. physical or emotional exertion. I’ve also updosed for short haul flights, minor dental work or for situations which I know I’d find stressful, to cover me just in case. It’s a bit of a guessing game- ‘normal’ people might feel stressed or anxious several times a week, but their body compensates by making cortisol. I have to try to preempt my ‘stress’ a bit so that I can take my medication- life doesn’t always give you a 20 minute warning to prepare though!
Once the ‘stress’ is over, you need to taper back down to your baseline dose (which is never pleasant). It’s best to be at your baseline as much as you can. Imagine being on a rollercoaster and constantly going up and down and how sick you’d feel. If you’re consistently adding in doses or stress dosing, that’s what it feels like. It’s also not good to have too much cortisol in your system- this can lead to Cushings Disease. It’s a tough balancing act to get right.
What’s an Adrenal Crisis?
Adrenal Crisis happens when the body hasn’t made enough cortisol and/or it hasn’t been replaced by medications. It’s life threatening and can happen quite quickly, for example, after a car accident or when someone experiences shock. Sometimes it can happen because the patient is fighting an underlying ‘stress’ they weren’t aware of e.g. infection. The symptoms of an Adrenal Crisis are:
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If in doubt, but particularly if the patient is unconscious, ring 999 stating ‘adrenal crisis’ and administer an emergency injection. You have to assemble it, mix the saline and powder, draw it up and inject into the thigh. Mine looks like this:
Not all ambulances carry Hydrocortisone, which is why the emergency injection is important (even if it is a bit fiddly!). Patients should get themselves Red Flagged by the ambulance service and wear medical ID to alert people that they need an injection if unconscious. Once at hospital, treatment and/or observations would start, normally including IV fluids and Hydrocortisone along with other appropriate treatments depending on the patient.
Photo: Great Ormond Street Hospital
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