Stopping Hydrocortisone for tests

I've got my repeat synacthen test in the morning, which meant taking a reduced dose of hydrocortisone for my morning and lunchtime ones and taking none for my evening one tonight and none tomorrow morning. It's because the test measures how much cortisol you make, and taking Hydrocortisone would give it a false reading. Realistically, having been on it is going to give it a slightly skewed reading anyway, so reducing and stopping it for 24 hours before is a compromise.

I also have to stop my steroid inhalers for my asthma, which I think most people can empathise with more because everyone knows that breathing is important and not being able to breathe is scary. Truth is, most asthmatics, including me even when I was at my absolute worst, will be able to withhold their inhaler for one dose for testing without too many issues. You can't leave the house and maybe couldn't do much but it would be ok. And you've always got your reliever to fall back on. With cortisol, even if I didn't get out of bed, I wouldn't survive much longer than 24 hours without it and have to be really careful doing even basic things so as not to set off a crisis. So I'm going to explain what it feels like to stop hydrocortisone, because a reduction in cortisol is something that most people won't experience ever!

The first thing I notice, which reminds me of pre diagnosis days, is I have this overwhelming feeling that I have to lie down and put my head down. It's fatigue based, but it's an instinct more than a feeling. I *have* to put my head down. It feels like being on a boat, kind of waves. In fact, it's like being underwater and hearing voices out of the water.

I feel unwell a lot of the time anyway, but this is a whole other level. It's mainly 'weird' more than anything. I've permanently got that feeling you have before you throw up, where you feel everything kind of drop away and you get clammy and hot and shaky.

My head feels really foggy. Like just having woken up and disorientated but all the time. I can't work out if I've imagined some things or if they're real because I recall everything with the same haziness you remember dreams.

I get these waves of nausea but not actually being sick. I had a cold last week which seems to have come back a bit, which sometimes happens after I stress dose for illness if I taper too quickly. So I've got a bit of a cough and sore throat, but that could also be because I've missed my inhalers and allergy spray. When I breathe in I get pins and needles in my hands and feet. All my muscles feel achey like I've got the flu and things keep cramping. So far I've only had a slight headache and no stomach ache *touch wood*- that head and stomach ache are by far the worst symptoms I have. My skin feels like it's on fire and I want to pull it off.

I'm not happy about the test because I feel grotty but I was super happy with my endo preparing me for the test on Friday. He asked me what dose I could manage on today and if I could withhold entirely tomorrow morning. In other countries, they swap you onto a different steroid, Dex, for the test because it doesn't affect cortisol readings but they don't do that here- usually you just get told to withhold meds and get on with it, so it was nice my endo took the time to ask me how I felt about it all! It'll all be over by this time tomorrow and my normal dosing schedule will be back in place.


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