A few people have been asking if I have the test results back since I banged on about it so much (lol), which I do! I had to go to my GP nurse for an asthma review but got a letter front my endocrinologist bringing my appointment early from late March to early January the same morning, so knew something had shown up as a ‘needs to be dealt with urgently’. So I persuaded her to look up the results while I was there!
She didn’t know what they meant so I explained adrenal insufficiency and the ins and the outs. Basically my ACTH level came back as ‘untraceable’.
Briefly, like I explained to her, ACTH is the boss hormone that comes from the pituitary gland. It pulses at various points in the day so it’s not a steady stream of hormone, but there will be some floating around in your system all of the time. It’s highest in the morning. ACTH is what tells the adrenal glands to make cortisol, controls your thyroid, manages other hormones like growth hormone… it does a lot. Once these glands have got enough ACTH to do their thing, it feeds back to the pituitary gland and says ‘enough now’.
The nurse had a little bit of a panic when I explained to her the role of cortisol. You don’t die from having low ACTH, but you do die from not having enough cortisol which is stimulated by ACTH. We already know I don’t make cortisol, so the life threatening consequences of not having ACTH are dealt with. But the nurse was pretty worried, so there was a bizarre 5 minutes where I was soothing her and explaining that as I’d had this probably for 3 years anyway, another 3 weeks until I see the endo wouldn’t be harmful.
She was also confused because I was actually quite pleased with this result. There’s a reason for me still feeling to shocking!! And blood work means there might (and I say this hesitantly) be some treatment options. Obviously I need to wait and see what my endo says because he’s the expert, but I know a bit from the last 3 years of research.
Essentially, I have a pituitary problem because I don’t produce ACTH. However now we need to work out if the whole pituitary has shut down or just ACTH production. There are a few potential scenarios:
– I have no hormones coming from my pituitary and have hypopituitarism. This is another rare illness and would put me in the secondary adrenal insufficiency category.
– some of my pituitary hormones work and some don’t. So we’d need to work out which ones.
– my other pituitary hormones work and my ACTH doesn’t. Having been on steroids for cortisol replacement, my pituitary might have decided it doesn’t need to make ACTH anymore and stopped production. The only way to convince it to start again would be to stop steroids. But then I’d die. So my pituitary isn’t going to make ACTH again by itself either way.
You’d think I’d want only one of my hormones to not work and the rest of the gland to work fine. That works for most medical problems, but actually, things would work a lot easier for me if the whole gland didn’t work anymore. While bits of my Endocrine system still work, my body is constantly fighting itself to try and right itself and adding in hormones with tablets is never going to get the balance just right. So the tablets confuse the glands and the hormones even though I need take them to survive. It’s a bit like trying to push together 2 repelling magnets- they push against each other and try to right themselves but while you’re pushing them, they’re never going to attract.
It’s said that someone with an Endocrine disorder which is uncontrolled like mine has the same amount of hormones zipping around as a woman in active labor. Feeling that out of control all the time isn’t pleasant, so if there’s anything that someone can help me with to make me feel less unbalanced, it’s something to be excited about. Never mind if there’s anything that can be done to alleviate my physical symptoms!
So I got bad test results but it came as a bit of a relief really. I’d been feeling terrible anyway, but now there’s a blood result backing up how sick I feel and also says that I was right to keep insisting they test me for it for 3 years!