I did what every patient isn’t supposed to do and I consulted Dr Google. Which I think is fine if you have something like a headache which suddenly becomes a brain tumour from just a few clicks, but as a rare disease patient, I probably would have died by now had I not gone on Google and tried to piece things together. For example, here is where my research paid off where some of my doctors were wrong and I had to work hard to persuade them:
- My blood pressure can go up not down in adrenal crisis
- I put on more weight when my steroid dose is too low rather than when it’s too high
- If my steroid dose isn’t adequate, I can’t sleep, not because it’s too high
- Sometimes I need extra HC at night
- My body compensates for a lack of cortisol by giving me adrenaline rushes. Which cause huge problems.
- My body gives me an asthma attack as one of the pre-cursors to adrenal crisis. Treat the AI first and the asthma attack stops…
There are a few more examples but you get the idea. Something I’ve been banging on for ages about is my ‘I need to eat’ feeling and everyone’s been a bit stumped.
Basically, I feel terrible eg sweating, shaking, feeling sick, fatigued, dizzy, out of it, headache, stomach ache, but my blood sugar is ‘fine’. But if I eat, I feel better. So then I got told to check my blood sugar and keep a diary, which is when I noticed that my blood sugar starts to go up when I feel ill and then goes back down again as soon as I eat.
Which is not supposed to happen and I got told that by every doctor I told it to. What’s supposed to happen is you eat, your blood sugar rises, insulin kicks in and brings it back down to normal about 90 minutes after. They said I wasn’t recording it right, that I didn’t measure it properly, basically anything to do with me getting it wrong.
I did a few experiments. The more I ate, the faster it came down. Sometimes it wouldn’t go up at all after eating which is very odd. Then last month my new endo diagnosed me with reactive hypoglycaemia. Which means my body over produces insulin when I eat certain things and it makes my blood sugar drop fast. Aha! Progress! I knew I was right…
That didn’t explain the whole ‘why does my blood sugar go up when I don’t feel well’ thing. It’s never dangerously high, we’re talking about anything over 6.2 and I start to feel horrible, which is normal range, so medically, no one really cared about it until recently. But I feel terrible, and I feel awful most of the time anyway, so getting rid of the 10+ episodes of whatever it is every week would be nice.
So I went on google, and painstakingly did some research. I haven’t actually run this past my endo yet so I could be completely wrong, but since I started thinking about it this way, it’s got a tad easier to predict. Which is definitely a win!
Also bear in mind that I found the colouring in diagrams aspect of biology much more interesting than the actual science behind it when I was at school. Obviously regretting that decision now, even if I did have pretty notes.
- When your fight or flight system kicks in, your body releases a bunch of hormones so you can run away from the bear chasing you. I don’t make cortisol and my insulin production is messed up but I do still make other adrenal hormones like adrenaline.
- These hormones make your liver (I think?) dump a whole load of glucose in your blood from stores which makes your blood sugar rise. To the average human, this would only happen in a stressful situation, but because I’m currently not stable, standing up waiting for the kettle to boil is a ‘stressful’ situation for me on some days. So my blood sugar rises but not for any obvious reason.
- Once you’ve got yourself out of danger, your body releases insulin to bring your blood sugar down to a normal level. Except I don’t make cortisol, which is one of the hormones which encourages this to happen. And I’m also insulin resistant and reactive hypoglycaemic and everything is totally confused by now in my body. So I think my insulin doesn’t get triggered or is triggered too late.
- Which means my body has a kind of ‘going into shock’ moment and I feel terrible. But if I eat something, it goes ‘foooooood, we know what to do now, we need to make some insulin!’ And that’s when my blood sugar starts to come down. And the reactive hypoglycaemia bit means it comes down fairly sharpish.
I’ve also noticed that when I’m eating a lot and it’s not making me feel better, if I take more hydrocortisone, I’m suddenly not hungry anymore and I don’t feel as terrible. So clearly there is a link there too. Plus a lot of these episodes are at night when I don’t take HC and my cortisol is at its lowest.
I reckon, if my science is accurate, I could be onto something here. Problem is, I’m told to avoid eating carbs and taking updoses of HC where possible. So someone needs to decide what they’d like me to do when I have these episodes because I’ve been told off for both in the past. At the moment I’m making it up and doing what I need to avoid hospital, but that’s clearly not a long term solution!
If anyone has any thoughts, different science or experience I’d be interested to hear too! 🙂