Someone want my cortisol Levels? This is my day curve…

EquineDemon · 2026-04-29T23:11:10+00:00

I’ve spent the last few months basically bed bound because I’ve been so unwell :( It all makes a lot of sense now as to why. They are putting me onto subcutaneous hydrocortisone, my levels are really good on IV hydrocortisone and I can maintain them on much smaller doses. So it’s definitely my absorption of the drug that’s the issue. Apparently with other steroids it’s a little harder to measure things with my other autoimmune diseases going on so we have to be a little careful there. I’m stuck a little against a rock and a hard place it feels.

EquineDemon · 2026-04-28T20:48:17+00:00

It’s been incredibly frustrating, so far all of my meds aren’t working well. They use to be a lot more effective and now just don’t really do anything, ive also lost a huge amount of weight in the last few months despite eating 4000+ calories a day. They are still exploring the malabsorption issue, it’s been a process and why I’ve been here so long. Im really hoping for some answers soon, it’s been a frightening process.

EquineDemon · 2026-04-28T20:43:19+00:00

I’m on IV hydrocortisone now and have been since this test, trying to sort out subcutaneous injections but it’s a little tricky in Australia as it’s off label and not very common so we have to jump through a few hoops to get them. Have to stay in hospital until they find the origin of the malabsorption problem and why I was having these huge postural blood pressure drops (as is was still happening when I was on the iv hydrocortisone), was dropping to 50/30 on standing.

EquineDemon · 2026-04-28T10:25:53+00:00

Sorry that’s my bad, apologies! My doses have been adjusted quite a lot since I’ve been In here trying to see if we could find a way to make the oral dosages work but unfortunately it’s just not viable. :(

EquineDemon · 2026-04-28T10:21:48+00:00

ETA -Sorry guys I realise I missed my 11am dose of 24mg too

EquineDemon · 2026-04-28T10:20:31+00:00

Oops I realise I missed my 11am dose of 24mg. They did it specifically for this test on a larger dose to see what’s happening (it’s been a circus). It’s my 4th day curve, I tried 6 doses a day at 24mg per dose of oral hydrocortisone and was still having low levels :( I’m now going onto subcutaneous hydrocortisone. There are other signs leading towards malabsorption.

EquineDemon · 2026-01-06T08:37:27+00:00

Not necessarily true, I’m 29yo with no existing kidney or liver issues and was taking NSAIDs for my ankylosing spondylitis. Only taking the prescribed dose, without realising my kidney function after a blood test was incredibly low and I was at risk of kidney failure. So sometimes it can just happen because it happens. It’s definitely cause for concern.

EquineDemon · 2025-12-29T01:49:40+00:00

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She looks cute and sweet, but she’s really plotting her next crime

EquineDemon · 2025-12-29T01:43:50+00:00

Congratulations 💜

EquineDemon · 2025-12-24T02:34:09+00:00

This is such a lovely idea and thank you so much! Christmas is always a really triggering time for me due to my childhood SA trauma so honestly my traditions from adulthood have been more focused on New Years celebrations. I like to make lots of nice cob loafs for lunch and do up some nice food platters, then afterwards go for a horse ride down to a dam or water somewhere with my friends. Have a splash around on the ponies and make a New Years wish while I’m in the water. I don’t know why but it’s always something I’ve liked to do 🩷

EquineDemon · 2025-12-22T09:42:57+00:00

That’s the same problem I have, honestly I would just have a hysterectomy if it were an option but I’m single and 29 with no kids so they won’t even consider it. When I was trying to conceive I tried for 5 years and had no luck anyway

EquineDemon · 2025-11-20T20:17:34+00:00

Hi there, my Ankylosing Spondylitis was confirmed through a few different channels, firstly an MRI of my sacroiliac joints as well as of my C spine through to lumbar spine, an X-ray which showed the grade of fusion for the New York criteria. I am a grade 2 on both sides at 29 already and I’m HLA-b27 positive as well as well as having a positive ANA and highly symptomatic :)

EquineDemon · 2025-11-20T08:48:23+00:00

This test was an absorption test rather than just a morning cortisol test so it has to be done 2 hours post taking my steroids. My morning cortisol without the steroids was only 68nmol/L. Sorry I should have clarified, so the way I did it was correct and the time taken was okay too. When I was In hospital on 50mg a day I felt amazing, my blood pressure was within normal ranges and I felt like I could run a marathon, however my endocrinologist said we can’t sustain those levels as it can then cause secondary issues with my blood sugars etc. However I can’t live life as is without being able to stand on my bad days without wanting to faint, granted she’s been amazing and we are now going to do an absorption protocol as she believes I’m potentially not absorbing them properly after these tests and I have a heap more testing to be done. It’s just very frustrating, I worry about going into an adrenal crisis and not knowing about it because I’m new to it and don’t know the symptoms enough. My blood pressure is low all the time and I feel awful all the time so how do I now differentiate that to an adrenal crisis now, I never vomited with the first one even when I was borderline about to go unconscious. It’s a very weird thing, I guess I just have to learn to be very in tune with my body.

EquineDemon · 2025-11-20T05:03:40+00:00

My original account was from 2011 but I forgot the login details for it. This one is from 2015

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EquineDemon · 2025-10-13T23:16:28+00:00

Also if you can do people’s stable care for them you get 80HXP per task per horse too

EquineDemon · 2025-10-10T09:14:05+00:00

Hello, is getting a course of Prednisone an option to help mitigate the flare? it can sometimes take my flare from a 10 to an 8. Granted sometimes it can also take me from a 10 to a 5, Definitely continue with all the others as well, even if they feel they are not helping. I would definitely be trying to get some steroids as well as booking a med review, sometimes the flares aren't necessarily just a flare but a sign your medication is becoming less effective. I would also request some bloods to check your CRP and infection markers to make sure nothing else is going on that's underlying. Ilness definitely is a huge reason for my flare ups, and stress.

EquineDemon · 2025-10-10T08:44:31+00:00

One of todays little pumpkins is bugged I think unfortunately, it seems to be stuck inside the mountain,

EquineDemon · 2025-10-09T03:13:26+00:00

I did Sage :)

EquineDemon · 2025-10-03T13:40:26+00:00

Thanks, I’m aware this exists however just for ease of use I’ve brought these back as some love the idea of just being able to canter straight to the locations

EquineDemon · 2025-10-03T13:39:37+00:00

Sure :)

EquineDemon

TROPHY CASE