Thread by @WeAreDisabled

I’ve been asked to give a little insight into my lived experience with #Addisons disease, something I share with, amongst others, #JaneAusten, and JFK.

it’s not actually that easy, as Addison’s is just one part of my weird endocrine tapestry.

But here follows a thread.

I haven’t always had Addison’s disease. For sure, I’ve had adrenal insufficiency as part of a pan-hypopituitary disorder. My pituitary is supposed to be telling other parts of my endocrine system to produce certain hormones but it isn’t.

So I’m on HRT for thyroid…

…corticosteroids, and sex hormones. Unfortunately, whilst I’ve got a good team in place now, clinical management hasn’t always been perfect.

I was over-medicated with corticosteroids for a sufficient time that my adrenals stopped working properly.

A general physician…

…sent me off for a short Synacthen test, which determines whether the adrenals will produce cortisol in response to hormonal stimulation.

The answer was no. I had developed iatrogenic Addison’s disease - as the result of inapporpriate treatment.

This means I will always be reliant on taking corticosteroids, as my body isn’t going to recover enough to do it itself.

The amount of medication required is not constant, and varies depending upon what stresses the body is undergoing at any particular time.

If I get sick, I have to take more. If I KNOW that my body is going to undergo trauma - like surgery - there are protocols to be followed to try to ensure that I don’t get sick.

For my two recent eye surgeries, this meant giving myself intramuscular hydrocortisone jabs…

…prior to the surgery.

These injections are something I have to carry; if I have an accident, or suddenly get sick, say with food poisoning, then I need to make up and inject.

Which, i have to say, can be tricky as, if already sick, higher functions start to shut down…

…and the process of mixing and drawing up the injection can become really hard! So when I travel, I tend to have one already mixed up, and in a fridge pack, to get round this issue.

I think I’ve covered most of it, happy to take questions.

Right now, after two surgeries in six days, I am chewing through supplemental oral hydrocortisone like it’s going out of fashion. Saw my GP yesterday, but he said it’s OK; I need what I need.

I have previously, when overmedicated, gone the other way into Cushing’s, which is another bundle of fun. This has made me a bit TOO conservative about medicating in the past, which has been to my detriment.

It’s a fiddly balancing act, and a right PITA!