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Autoimmune disease

Adrenal insufficiency

7 replies

RenegadeMasterx · 15/11/2021 11:05

Morning all, last week I was diagnosed with adrenal insufficiency and I have to have a cortisol test (or something along those lines where they inject serum and take bloods) done next week to determine if it's Addison's disease or something different. I am currently taking 10mg hydrocortisone at 8am, and again at 4pm. I am really concerned about it, I have hypothyroidism which I've been struggling with for 10 years.. never been very well controlled. I'm feeling really tired and just bleh. Has anyone had the cortisol serum test done? Was it ok? I'm worried about it, got to go alone due to bloody covid. I'm also worried about what's causing the insufficiency, if it isn't Addison's disease, what else could it be? Confused

OP posts:
HelloKittySkittles · 15/11/2021 12:05

Short synacthen test? I’ve had 2 around a decade apart and both were fine despite ongoing awful symptoms. One was intravenous and one was intramuscular injection. How was your adrenal insufficiency diagnosed?
The stuff they inject stings a little bit but it’s not unbearable or anything and only takes a few seconds, the waiting around for the second blood test is more annoying, make sure you take a book or something. I also have hypothyroidism btw, no clue what it could be if not Addison’s though. Good luck, I hope the results are okay & any ongoing treatment makes you feel a little better Flowers
www.gloshospitals.nhs.uk/our-services/services-we-offer/pathology/tests-and-investigations/short-synacthen-test-sst/

Summerofcontent · 15/11/2021 19:38

Do you have Facebook?
I belong to a wonderful group called
UK Addison's disease and ai info and support group.
Most of the people there have adrenal insufficiency with various different causes and can help with your questions.

I have had Addison's for over 20 years.
I'm going to guess that as you're taking hydrocortisone already you've had a 9am blood test which came back with a level lower than 80.

They should take a blood test for ACTH when you have your sst. That will tell them whether you have primary or secondary adrenal insufficiency.

Initially I wouldn't worry about whether it's primary or secondary as the treatment is the same, it's just the cause which is different.

I follow circadian dosing with my hydrocortisone but in your position I would take 10mg first thing, ideally 30 minutes before getting up.
Then 5mg at lunchtime and 5mg at tea time

This is just scratching the surface of information which is available
If you have any other questions please ask

jegg · 25/11/2021 01:46

@Summerofcontent

Do you have Facebook?
I belong to a wonderful group called
UK Addison's disease and ai info and support group.
Most of the people there have adrenal insufficiency with various different causes and can help with your questions.

I have had Addison's for over 20 years.
I'm going to guess that as you're taking hydrocortisone already you've had a 9am blood test which came back with a level lower than 80.

They should take a blood test for ACTH when you have your sst. That will tell them whether you have primary or secondary adrenal insufficiency.

Initially I wouldn't worry about whether it's primary or secondary as the treatment is the same, it's just the cause which is different.

I follow circadian dosing with my hydrocortisone but in your position I would take 10mg first thing, ideally 30 minutes before getting up.
Then 5mg at lunchtime and 5mg at tea time

This is just scratching the surface of information which is available
If you have any other questions please ask

Hi Renegade, hope your short synacthen test went ok? It’s all rather overwhelming to start with I know but I hope your endocrinologists have been able to answer some of your questions now. x

I’ve had adrenal insufficiency for 5 years now.
Summerofcontent, interested how your circadian dosing works? I take 5mg in am and 4mg at noon and evening (reduced gradually from 10/5/5 few years ago, based on day curves)
However am still always tired and never feel particularly well, I get on with it but wonder if playing with my dose timings might help
Summerofcontent · 29/11/2021 19:05

@jegg

Are you primary or secondary?

Do you take a total of 15mg? 5mg 3 times a day?

I'm primary and take 22.5mg, split as follows

3am - 2.5mg
7am - 10am
11am - 5mg
3pm - 2.5mg
7pm - 2.5mg



With your total I'd probably try

2.5mg between 3am and 4am
5mg on waking
5mg at lunchtime
2.5mg at tea time


Natural cortisol production starts ramping up at around 4am ready for waking up. Not taking your first dose until you get up means you're playing catch up from the start.

I'm always happy to answer questions if you have any

Flossie44 · 01/12/2021 14:01

My dd has secondary adrenal insufficiency caused by steroid use. She’s 13 now and was diagnosed 11 years ago. She takes hydrocortisone 4x a day.
I agree with the others, if that morning dose is delayed at all, the rest of the day seems to be a struggle.

Strangely my dd has just been diagnosed with hypothyroidism too.

jeggles · 01/12/2021 14:37

@summerofcontent Thanks for the info :) waking up at 3am sounds brutal but you’re right, it would be a better mimic of natural cortisol production, so maybe I should give it a go anyway! I have secondary AI, caused by surgery to remove an ACTH producing pituitary tumour (aka Cushing’s disease). My total dose is 13mg taking 5 on waking, 4 at noon and 4 in the early evening. Bit of a faff splitting the tablets and weighing for the correct dose but I’m used to it now and I was getting peaks too high with more. My morning cortisol after 5mg still reaches 600 ish which is higher than I would like but I feel unwell on less so I’ve stuck with it.

I had a short synacthen test recently to assess for any HPA recovery but was still insufficient . Hilariously I had an allergic response to synacthen of all things- bloody annoying if I ever need to have another test 😂

I think I’ve come to terms with the fact that regardless of what we do with our replacement regimes tiredness is probably here to stay at least to some degree 🤷‍♀️
I am going to see if I can wake at 4am ish to take a little dose though to see if this improves things. I’m TTC and if I can improve my energy levels before becoming a mum that can only be a good thing!

Also
Merry 1st of December! 🎄

Summerofcontent · 01/12/2021 18:36

@jeggles to be honest, once you get used to it, the alarm going at 3/4am is just enough to rouse to take the tablet then back to sleep.

Some mornings I don't even remember taking it. I just know I have because it's not on the bedside table

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