Adrenal Insufficiency can be a scary and life changing diagnosis. When I was first diagnosed, I was not given much information and I was not warned about adrenal crisis, something which can and has sadly killed some of my friends which the condition.
There was much I needed to learn and my knowledge has grown by researching and talking to others with Adrenal Insufficiency.
Most importantly I have learnt through my own personal experience of becoming low in cortisol and needing to go to hospital to prevent or stop an Adrenal Crisis.
What Causes an Adrenal Crisis?
Adrenal Crisis is the state that the body goes into when the body is too low in Cortisol. Cortisol is the "Stress hormone" produced by the adrenal glands. When you have Adrenal Insufficiency the adrenal glands either don't produce any cortisol or only a small amount insufficient to meet the requirements of the body.
Addisonian Crisis and Low Cortisol
Some people are diagnosed with Primary Adrenal Insufficiency known as Addison's Disease and others have Secondary Adrenal Insufficiency.
At the end of the day, the cause of the illness may not be the same, yet the symptoms of becoming adrenally low are the same and if nothing is done to stop adrenal crisis symptoms then the patient will eventually die.
Adrenal Crisis Symptoms
When I start experiencing low cortisol symptoms I have certain specific symptoms which tell my body that I am low.
I then double up on my medication, however if this is not sufficient and I feel myself heading towards and Adrenal Crisis, I will have an emergency injection and need to go to the hospital immediately .
Here is a list of the main TYPES OF ADRENAL CRISIS SYMPTOMS you may feel when heading towards an Adrenal Crisis.
- Headache and Dizziness.
- Low Back Pain.
- Stabbing pain in the legs.
- Stabbing in the abdomen and stomach area.
- Pale Skin /Shivering.
- Severe Vomiting/Diarrhoea
- Lethargy/Listlessness
- Loss of Appetite
- Neurological problems such as being unable to concentrate and think straight
I find this a problem as when I am in the most need of medication and heading towards an Adrenal crisis, I can struggle to think and work out what I need in terms of medication and this can delay my treatment.
Luckily I have my husband around a lot and he knows what to do if I'm unable to work out that I am unable to recognise my signs of adrenal crisis.
More Adrenal Crisis Symptoms
- Confusion
- Low blood Sugar - Hypoglycemia
- Low Blood Pressure.
(For everyone this is different but for me my usual blood pressure is 130/80 when it drops to around 100/60 I know there is a problem (for me) and then it goes downhill from there. )
- Seizures
- Cardiovascular Collapse
- Shock type symptoms
I think for everyone this can be a little different and certain symptoms may be more present.
In particular if you have primary AI, your potassium and salt levels may be more out of wack than someone with secondary who does not have issues with Fludrocortisone in addition to Cortisol problems.
However I am diagnosed with Secondary AI and I have had times in hospital where my potassium has been really low.
Signs of Adrenal Crisis
When I am on the edge of an adrenal crisis and I know I'm headed downhill, I will go to the A and E. I will often be given emergency Cortisol via IV and have my blood levels checked.
The doctors rarely check my Cortisol because it will be sky high having had an emergency injection but my blood sugars, blood pressure and heart will be checked.
Usually I may stay in hospital a few days to recover. This is when I catch my symptoms early on and for me, when the problem is caused by a secondary stressor such as an infection or illness.
Acute Adrenal Crisis
At times and often is the case with Adrenal Insufficiency, someone might simply collapse and go into an adrenal crisis with no warning. This is the most scariest situation for myself.
An acute Adrenal Crisis happened to me when I was under a lot of stress and worry after my child was rushed to A and E having stood on a nail.
I was not mentally stressed but the body naturally goes into fight, flight mode and whilst checking my daughter into the hospital, I just crashed.
Luckily I was in the right place, the A and E and they dealt with things quickly.
Suffering acute adrenal crisis symptoms also happened to me once in a supermarket.
I was pushing a trolley and suddenly someone crashed there trolley into me, it gave my body such a shock, I collapsed within minutes and had to get an emergency ambulance to treat me.
Adrenal Crisis Following Dental Treatment
I once began to head into an adrenal crisis after having a biopsy done and once after dental treatment. I had doubled my medication but on these occasions it was not enough.
These are my experiences and everyone will be different but the key is to always have an emergency injection at hand and to go to hospital when in doubt.
Other times, my health has simply gone downhill over time and I have felt..right it's time to go get help.
Every time I go to hospital, I am told I did the right thing.
For me the sooner I get cortisol and fluids the sooner I go home.
I have never gone into a full fledged crisis where i've gone into cardiac arrest.
Doctors have always treated my symptoms before getting to that stage.
Some say..well then you did not have a Adrenal crisis but thats not the case. I was in a crisis and it luckily did not get to the end stage.
Can You Die From Adrenal Crisis?
In short the answer is yes and the more information and knowledge a patient with the condition has, the better equipped they are to deal with low cortisol symptoms which lead to addisonian crisis.
I wanted to share my experience as it would have been good to read this myself when first diagnosed to understand better what was happening to my body each and every time I ended up in hospital.
I have been in hospital with Adrenal Insufficiency over 22 times in 3 years and I feel I am an expert on my own symptoms and now I know what to do.
However I still do get confusion when it happens and that can cause me to become unsure and doubt, so it is important for me to have my husband to help me decide whether I simply need to double up and rest or if it's time to head to the emergency services.
I've been told to always go to A and E if I'm in a crisis, if I have the runs continuous or can not stop vomiting and then if you are dizzy and low in BP or blood sugar and feel like collapsing. Just go. It is better to be safe than sorry.
Like I say, every 3-4 months I hear of a friend or someone who didn't survive a crisis. Adrenal Crisis is a real and sure thing and must be treated promptly by the emergency services.
This is so interesting and scary to read...
You are amazing dealing with what you do.
Thanks Kim. It's difficult and some symptoms i get each day like headaches and stabbing pains and feeling dizzy and sick. It's tough but something I and lots of others have to learn to deal with. It would be amazing if one day they had better technology and could monitor cortisol levels like blood sugar. Now that would be amazing.
You are the first person I have ever read about the stabbing pains. I'm so glad to have found your blog. I'm newly diagnosed with secondary Addison's from Sheehans hypopituitarism. I've battled with symptoms for 4 years without diagnosis. 2 years ago random stabbing pains on my outer thigh caused me to cave with pain, I'd grab with both hands the area but there was nothing to be seen. The pain would last a few seconds then disappear for a few minutes then return again. Each return was slightly less painful and the cycle would last about 12-15mins. Dr's had no idea and neither did I. Even now when I have been reading tonnes of info about this rare condition I have not found any reference or reason for the stabbing pains. Do you know WHY the stabbing pains occur?
It's one of the symptoms I always get when I am low in cortisol and heading towards a crisis. I assume it's because low cortisol makes my body weak and my muscles hurt and stab ..but the worst pain is in the adrenal area.
Just curious - isn't this called Addison's disease? Or is there a difference between what you call adrenal crisis and Addison's?
There are three types of Adrenal Insufficiency, primary which is also Addison's disease caused by direct failure of adrenal gland , secondary Adrenal Insufficiency which is caused by issues with Pituatry gland in brain which results in Adrenal glands failing to work and then tertiary caused by issues in another part of brain.
They all result in adrenal crisis but the cause is different although adrenal crisis and addison's crisis is very similar and can be identical. With secondary I don't have a problem making fludrocortisone so my BP and potassium and salt levels may not drop as bad as someone with addisons crisis but i'm still in adrenal crisis and at risk of dying. Hope that explains it.
Angela, I wasn't told anything by my first doctors either on when to stress dose, or how to recognize a crisis. As a result, I often ended up in the hospital when I probably could have stayed home if I had an injection handy. I always have three or four injections at hand now. My Hubby is also very good at noticing crisis symptoms, and never doubts my decision regarding giving myself a shot, calling the ambulance or taking me to the hospital. Good article, and I hope you are feeling well today!
Maureen (Mo)
Thanks Maureen. It is scary at the start and later on. Glad you have emergency meds though!
Hello ino this is a bit late,my new born has just been diagnosed with congenital adrenal hyperplasia and your telling me all these symtoms of adrenal crisis but I don't feel what he feels, and I'm very scared that I might miss something. He's condition is under control at the moment but sometimes I can think he's poorly when he's not dooes anybody know what to look for in a new born baby when having an adrenal crisis
I wish I could help more. I think they will slowly get worse and you will know if they are in crisis, it is the stages beforehand that will be harder to recognise but looking for irritability or diaorreah or unusual crying may be a sign?
Angela, I was referred to an Endo consultant who has agreed to send me for an adrenal function test, but said that he didn't feel my cortisol was low enough for Addison's. As I am writing this I am laid up in bed after spending most of the night and day with vomiting and diarrhea, I have a full pain in my lower back and dragging pain in legs, it could just be a bug, but do you think i should get checked out for Adrenal crisis?
Hi Donna,
Are you able to check your blood pressure? It would be a good idea to maybe check it and if it's low it could be a sign of adrenal symptoms. I had the same issue and it wasn't until i went into a crisis that i was finally diagnosed... from my own experience they can say maybe your cortisol is not low enough but... there are two forms of AI, primary and secondary and I have secondary which means I do make some cortisol where as addisons have zilch!
Please be aware how serious an adrenaline crisis can be,I have just lost my only sister after a crisis and she only had a tummy bug! She went into cardiac arrest and we as a family are all devastated! She was 64 years old and never reached retirement! I'm gutted as her sister that we were never told how serious her condition was over the years she has lived with it. We were only told not to leave her at home to long during any illness and now she is gone!
Who do you see to get a diagnoses for Adrenal issues? I’m in Canada and I’m struggling with many of these symptoms but no doc I’ve ever seen - regular GP and rheumatologist has ever suggested Adrenal function.
you need to see an Endocrinologist.
Just recently had my first 2nd crash.
I find the hospitals have no idea what is going on.
I had another crash while in hospital with blood pressure 83/50, they did nothing. My husband
Grabbed my cortisol out of my bag and gave it to me.
Then we were advised by head nurse, that he could not give me my own medication.