adrenal crisis experiences

[Sparklyjenson]

Good morning,

There is no obvious forum for me to post this question to, so I thought I would start with this group since I know some members have addisons and experience with adrenal insufficiency.

For those who have experienced an adrenal crisis, did it impact your stomach and back, and if so what kind of pain was it? Did it feel like labour pains or the worst period cramps ever? I’ve googled but can only find reference to the vague term abdominal pain. That could mean anything.

Reason for asking…

I am trying to work out what caused me to be very unwell last November and wonder if it was an adrenal crisis. Completely out of the blue, terrible lower abdominal and back pain came on, I had a racing heart rate and I was sick. I was taken to hospital in an ambulance after 2 hrs of rolling about the floor at work and given morphine. A cause was never found (lots of gynae, UTI and kidney tests). I was off work for a month - zero energy, felt sick all the time, low level stomach and back pain.

Having just been diagnosed with another autoimmune condition (PA to add to my thyroid and psoriasis) I’m now wondering if that episode could have been caused by my immune system attacking my adrenals.

The hospital or GP afterwards didn’t test for potassium, sodium or cortisol unfortunately.

[Hedgeree]

Hi Sparklyjension,

Have you seen this site before?

addisonsdisease.org.uk/what...

Best wishes.

[Sparklyjenson in reply to Hedgeree]

Thanks Hedgeree, I have seen that website - it’s very good and one of the places that made me consider the episode could have been an adrenal crisis. The website only refers to ‘stomach pains’ which is very unspecific. I am wondering if any one else has suffered from those stomach pains and if they usually happen in a particular part of the stomach e.g. if it’s usually in the top tummy then my lower abdominal cramps would not have fitted the pattern.

[Hedgeree in reply to Sparklyjenson]

Yes it is a good site.

As you said there are a few members on the forum that hopefully can give you their experiences.

I had an episode myself that only in retrospect then I became aware of Addison's and other adrenal insufficiency. I broke my arm during lockdown after falling. I felt ok it was only when I was triaged outside the walk in by phone. When I was allowed in they couldn't take my blood pressure as it was too low, I felt very whoosy and sleepy and heart went weird. Kidney area pain. I ended up in A&E where I recovered after being left in a cubicle. I think it was possibly delayed shock in my case. I wasn't in any pain with my broken limb so declined pain relief but had surgery for the break a few days later.

If you're under an endo ask them about tests, 9am cortisol, ACTH etc.

Best wishes.

Edited; You could also do a saliva and dhea test yourself. This would give you an idea of your cortisol levels during 24 hour period.

[Sparklyjenson in reply to Hedgeree]

Thank you Hedgeree.

Your hospital incident sounds scary. I hope with treatment you haven’t had any more issues. I am not under an endo as my go treats my hypo but I could ask for a referral. I think I might do the home tests first. I’m wary of asking gp for too many things at once and I’m about to have the b12 injections conversation (dreading that!)

[Josephineinamachine]

hallo I had these pains and after tests diagnosed with diverticulosis disease. Can cause extreme lower abdominal and low back pain when it flares…

[Sparklyjenson in reply to Josephineinamachine]

Hi, thanks for responding. Do you only get pains during a flare up or do you get lower level symptoms more regularly?

[Josephineinamachine in reply to Sparklyjenson]

hi only during a flare up - it’s a bit like IBS but a beefed up version of it I’d say. And can last for quite some time.

[caledoniancat]

HI Sparklyjenson, my daughter has Addison's disease, she has experienced several Addidonian crises. Normally, she does experience low back pain, pain down her legs, vomiting, dizziness, brain fog, increased heart rate but deteriorates really quickly. She recognises the symptoms now, so has to self inject self with hydrocortisone, followed by sleep. The covid/flu vaccination was the cause of the most recent crisis (despite double dosing with hydro before the covid/ flu jags). It is normally recommended to go to hospital after self injecting but unless you go in an ambulance you end up waiting 4+hrs

[caledoniancat]

Sshould have added that if she didn't self inject, she would pass out, so would need immediate medical attention, really serious situation.

[Sparklyjenson in reply to caledoniancat]

thank you for taking the time to reply.

I’m so sorry to hear about your daughter. It must be very worrying, especially when you know the jags are a trigger but she needs them anyway. Your description of her symptoms sounds very like what happened to me. When I told the paramedics I was going to pass out they gave me morphine which got rid of the pain and slowed my heart rate. But morphine isn’t a replacement for hydrocortisone, so I don’t know why that would have worked if my adrenals were the problem.

If you don’t mind me asking, how quickly does your daughter need an injection after the symptoms start before she would pass out and how long does it take for her to feel normal after a crisis episode?

PS great username!

[caledoniancat in reply to Sparklyjenson]

Hi, apologies for delay in responding, thought I should check with my daughter first. She normally starts to feel unwell a few hours before injecting but also said that in retrospect she usually believes she should have injected earlier. It's when she gets to the vomiting stage and feels like she has barbed wire in her head that she injects but sometimes that's a bit late because she then needs help with preparing and drawing up the syringe and is unable to stand unassisted. Unfortunately, there is no pre-prepared 'EpiPen' for Addison's yet but there is some research going on to develop it. I know some Addisonians go into crisis very, very quickly particularly if they also have other autoimmune conditions, some keep a prepared syringe in the fridge. How soon my daughter recovers depends on the cause. If it is an infection it can take several days of higher hydrocortisone dosing after self injecting and then gradually tapering off. With the recent covid/ flu vaccination it took around 24-36hrs to recover. When she was first diagnosed (after crisis) she was in hospital for 5 days recovering followed by more recovery time at home.

[Sparklyjenson]

Oh my goodness it sounds so frightening.

Thank you so much for taking the time to speak to your daughter to find an answer to my questions. It’s so kind of you.