‘You’re absorbing steroids for your asthma well is the good news. But your short synacthen test shows you have Hypoadrenalism, so you will need to keep taking Prednisolone every day and see an Endocrinologist’. And then to the nurse ‘7.5mg Prednisolone stat’.
That was my diagnosis of Secondary Hypoadrenalism or Secondary Adrenal Insufficiency. Hypo-what? End….? I couldn’t even say half of the words, let alone remember them. And back on steroids? That wasn’t the point of 2 weeks in hospital! The only thing I’d really registered was that he’d said ‘stat’, which, from my hours of Grey’s Anatomy watching, meant ‘quickly please!’.
It felt a bit like I’d been abandoned and I had to learn a lot of the stuff I know now from experience, or from reading medical journals and support groups on Facebook (a real life-line!). Now it seems pretty obvious, but it was a steep, difficult learning curve and I quickly learnt that I knew more than my GP. Here are 10 practical things I’ve learnt based on my experience which I wish my Doctor had actually said when diagnosing me. NB: this is not a replacement for your Doctor’s advice!
- Take your replacement (mine is Hydrocortisone, changed soon after diagnosis) at the same times every day. It’s annoying having to live by this but you will feel so much better. My doctor told me ’10/5/5mg 3 times a day’ so I was doing it at meal times, which aren’t always at the exact same time. Work out a schedule which suits you, every 4-6 hours (if on hydrocortisone) to keep in line with a normal circadian rhythm, even if it means getting up early at weekends. Keeping ahead of symptoms works better than trying to get on top of them.
- Cortisol is like a bank. It doesn’t replenish itself over night like lives on the X-Box. Your steroids act as a deposit into it but if you’ve been ‘robbed’, you have to make extra deposits to make up the difference in balance. Deposits could be: stress dosing, sleep, rest or, for me, carbohydrates.
- Follow your stress dosing Sick Day Rules but pay attention to your body. If you’ve not been given the Sick Day Rules (I wasn’t), ask for them. Everyone responds to ‘stress’ differently, so why would illness be any different? Don’t get confused though- you’ll likely feel nauseous and fatigued with an illness normally, that doesn’t necessarily mean you need to stress dose, that could just be part of the illness- adrenal insufficiency is great isn’t it ;)?
- The most useful thing I read was: if you feel overly sick, tired, have headaches, dizzy, have stomach ache etc take 5mg or 10mg more. An updose (one off dose) won’t do you any harm in the short term. Not dosing enough could kill you. This works well for things where you don’t need a full stress (double/triple)dose. Eg a filling at the dentist or a short haul flight- 5mg half an hour before usually covers me enough.
- Rapid tapers don’t always work. A lot of sick day rules say ‘return to normal/baseline dose the next day’. If I do that I crash and burn spectacularly and can’t get out of bed for a few days (read: sitting up to eat is too tiring). I find a taper of 5mg every 3 days works well for me. If on the third day I feel really rough, I’ll leave tapering another 5mg for a few more days.
- Not all Health Care Professionals have heard of or know how to treat AI. Or they might think they do, but not every patient fits the ‘textbook’ symptoms. So if something you’re told doesn’t make sense to you, it’s ok to ask for a second opinion (from someone more senior). A good trick is to ask doctors to repeat their advice or repeat it back to them and see if they say the same thing a second time. Chances are, if they’re unsure, their advice will change and they’ll contradict themselves.
- Get to know your symptoms and be your own advocate. You shouldn’t be left waiting if you go to A&E, even for triage. Remember the point above, you might have to be firm or forceful. Lab results (like random cortisol, potassium and sodium) can take an hour, and an hour is enough time to kill you if you’re having a crisis and don’t get the right treatment.
- Make sure you’ve covered yourself for emergencies. Buy a medical ID bracelet and write your name and something along the lines of ‘adrenal insufficiency, requires emergency injection/solu-cortef’ on it. Carry your emergency injection with you. Get yourself Red Flagged by your local ambulance service so that they prioritise ambulances carrying hydrocortisone and a quick call out. You have to do this every year and it can be done by emailing the local service.
- Carry extra oral hydrocortisone all the time. It’s handy for unexpected updosing but if you end up in hospital, they never have it on the wards and often don’t appreciate the time sensitivity of it. So it’s useful to have your own so you can tell your nurse ‘I’m having this now’ if you really have to (nurses tend to ‘get it’ more than doctors, so make friends with them!).
- Use your smartphone. Use the health app on your iPhone (the one with a heart icon) to put your medical info in as an alert. This can be accessed by paramedics even when your phone is locked. The same app can be used to record symptoms, medications and vitals (BP/HR/Blood Glucose), which comes in handy when you’re asked to keep a diary. I’ve also got a photo album on my phone called ‘Doctor’s Notes’ which has all of my letters from Consultants and protocols. If there’s a problem or someone needs information, I can just show them on my phone.
Photo: AIUnited (AIU)