Today I had an appointment at the hospital endocrinology unit to attend an education session with one of the endocrinology nurses in relation to Adrenal Insufficiency and self-injecting hydrocortisone. Due to years of corticosteroid use to treat my rheumatoid arthritis, my adrenals no longer work. This means that when my body is under stress, unlike a normal person with functioning adrenals, I can’t produce enough cortisol to cover me through a crisis (emotional or physical). This can lead to an Adrenal Crisis and death.
If not treated correctly, something as simple as a minor bout of gastro can quickly become a life-threatening illness for me. And it has done, in the past. I have landed in the ER four times in the last 18 months due to adrenal insufficiency / crisis. And Adrenal Crisis was a significant contributor to my almost dying after my hysterectomy.
So, this session was pretty important!
It basically covered what to do if I have a minor illness, what to do if I have vomiting and/or diarrhoea, and I was taught how to self-inject hydrocortisone.
The basic rules are as follows:
Stress dosing when ill
In the event of illness, I need to stress dose. If I have a fever, a virus, an infection or anything like that, the rule of thumb is to double my regular dose. Currently I’m on 15mg of prednisolone daily. If I were ill, I would double that to 30mg, and do so for 3-5 days.
If I’m not improving after 3 days, I need to see my GP for help, possibly antibiotics, or general review. The GP will check my blood pressure, blood sugar and hydration. If my blood pressure falls, or I get too dehydrated, or hypoglycaemic, I’ll need to go to hospital.
Diarrhoea and vomiting
If I have diarrhoea and/or vomiting, not only will I not be getting my usual dose of prednisolone, but I won’t be getting the stress dose either. This can lead to an adrenal crisis, and death if not treated, so I need to give myself an injection of hydrocortisone and then present to the hospital ER. At the ER I need to tell them I have Adrenal Insufficiency and need to be treated with hydrocortisone.
The endocrine nurse said its very important they don’t leave me waiting, because the hydrocortisone shot that I give myself only gives me 6 hours coverage, and then I’ll be back to square one, and at risk of Adrenal Crisis. She said if they triage nurse doesn’t realise the seriousness of AI, and keeps me waiting, to tell her I need urgent treatment with hydrocortisone.
Adrenal Insufficiency is often overlooked and misunderstood. Many medical professionals don’t realise how serious a condition it is. She told me to make them listen, because my life could be at stake.
Quite sobering, but having experienced Adrenal Crisis, I don’t ever want to go through that again, if I can help it.
It wasn’t difficult for me, having self-injected many rheumatoid arthritis medications, including methotrexate. It’s a simple process to prepare the solution, draw up the needle and inject into the thigh. Or its simple when I’m well…it could be much more difficult if I’m mid AI crisis.
For that reason, she told me to teach my kids how to inject me, should I be too weak, or even passed out. She did say that if I’m passed out to call an ambulance, but if they were confident, they could inject me while waiting for the ambulance. Not all ambulances carry hydrocortisone injections, only intensive care ambulances do. In an adrenal crisis, time is critical.
The little kit she gave me is very cute. I don’t have to carry it with me at all times, like I do my Epipen, but I do need to take it with me if I travel, take a weekend away or even a brief holiday.
She checked that I had a medic alert bracelet, and was pleased that I do.
She stressed again that awareness of the seriousness of Adrenal Insufficiency is improving in the medical community, but many doctors are still ignorant. She advised me that if I need surgery I need to talk to the anesthetist and get hydrocortisone coverage for the surgery and the post-op period.
I told her briefly about my surgery where, despite my telling the anesthetist about my adrenal insufficiency and the last thing I said to him before I was put out was “don’t forget about the steroid cover”, and still he didn’t give me any hydrocortisone and I nearly died.
The nurse was very sympathetic. She told me its far from the first time she’d heard that story, and to always make sure that someone is looking out for me. Because if I wake up in adrenal crisis, I’ll be too sick to tell them what I need. She said some doctors, surgeons, anesthetists were incredibly arrogant, and don’t like to be told. But its my LIFE that’s at stake, so don’t be shy.
And that was it. She was a lovely nurse, and she told me to call or come back in anytime if I wasn’t sure. And to make an appointment for my kids to be given the same education session as I was, if I felt they needed it, or wanted it.
She also gave me some more information on Adrenal Insufficiency, and I’ll write some more aritcles about it. As my little bit towards raising awareness about AI.