Blood tests

I ended up at the AEC yesterday and my consultant has run a load of bloods to see if I have any markers for the new biologics, but he says he’s not holding out much hope because I’m currently on steroids, had got down to 25mg but yesterday put me back up to 40mg 😔. One of the bloods they took was a cortisol test that has been sent to Birmingham, I’m a bit baffled as to why they’ve done this as I have permanent adrenal insufficiency which they’re aware of - just wondering why they’d be checking cortisol 🤷🏼‍♀️

[Lysistrata Administrator Community Ambassador]

It's frustrating when they don't tell you why!

As someone who also has adrenal insufficiency, I'm a bit baffled too - especially if it was just done at a random time of day when you were on steroids. I'm not quite sure what that's going to tell them if it's a standard cortisol test?

My specialist asthma clinic has done this, even though I'm under endocrinology for the AI. They randomly ordered a cortisol blood test at about 11.30am when I was there anyway for asthma. It came back normal - as you'd hope, since I'd taken my hydrocortisone that day as usual! The comment I got from the asthma nurse next time I saw her was 'I don't know why you're on hydrocortisone when your cortisol level is fine'. 🤦🤦🤦

At this point I found out that she'd done the test the time before without telling me, at a random time of day, on steroids, and I was internally rolling my eyes. Maybe they should leave that to the endo dept if they don't know how to test for AI properly or interpret the results - if the endo nurse wants to know what's up she doesn't test like that!

I'll give your cons the benefit of the doubt - maybe it was a specific test they wanted to do if they sent it elsewhere, and it somehow didn't matter what time it was done or that you were on pred? But still would be nice if they told you!

Sorry not to be more helpful. Crossing fingers for biologics!

[Hidden in reply to Lysistrata]

Thanks - it’s really annoying and I know I should have asked! Just seems a pointless test when I had taken 25mg of prednisolone on Friday and they took the bloods at 7:30pm so not sure what they’ll get from it - I would imagine it will come back possibly with high levels of cortisol 🤷🏼‍♀️

I struggle with my asthma team when it comes to my AI - they seem to think the hydrocortisone I take covers my asthma, even though my Endocrinologist has written to them to say they still need to treat asthma flares and that my AI is permanent - they’re always saying now we don’t want you on a high dose for too long because of the effect of your adrenal glands 🙈. I agree they should leave that side of things to the endocrine team.

I had the usual on Friday, you’re not wheezing are you sure it’s your asthma! I’m sure they say it on purpose! Then my usual consultant said to prescribe 10 days of doxycycline alongside 10 days of 40mg pred but was only given pred as another doctor said bloods were fine, white cell count, neutrophils and CRP are always high so again baffled as they’re usually worse with pred.

Hopefully something will show for biologics, this year as well as usual Hayfever symptoms I’ve got a tight throat and I’m itchy all over!!! Sorry I’ve started to moan!

[Lysistrata Administrator Community Ambassador in reply to Hidden]

Moaning is fair enough, it's really frustrating! And asthma teams often seem to think they can handle endo stuff when they can't. At that level of pred I don't even see the point in testing at any time of day!

Almost every time I'm admitted the ward team will screw up the hydro, though in my case they usually don't give me enough for adrenals. My asthma doesn't respond to pred which they seem unable to grasp, then if they do I get the well you don't need steroids at all then. No, I still need them for my adrenals, it's a separate issue. I much prefer it when the endo team is doing the ward cover as they get it usually and they're often better with the asthma as well!!

Does sound like your asthma team are just being dozy about cortisol testing, but at least you sound like your endo is good! Hoping the asthma team are persistent with bios for you. The no wheeze thing is so tedious. I swear my consultant thinks no one he sees ever has asthma as there's always a reason he says it's something else, even with people who have what he considers 'proper' asthma (ie eosinophilic/allergic ie not me).

[Hidden in reply to Lysistrata]

Endocrine consultant said to ignore anything asthma team say about Adrenal Insufficiency - the cortisol reading came back as 86 and he said why on earth they tested knowing you’re on prednisolone I have no idea!

I’m hoping my bloods will show something, but I’m one of the awkward ones who despite being symptomatic and having what seems like a million triggers, nothing ever shows up in my bloods. I was on bricanyl 24hrs a day but asked to come off due to the side effects and they keep saying they’re running out of options, just wish they’d do something instead of pred all the time.

Thanks for listening to my moans! x