My Life With Adrenal Insufficiency

Waking Up With Low Cortisol In The Middle Of The Night

waking up low in cortisol due to adrenal insufficiency

Waking Up With Low Cortisol In The Middle Of The Night

Two nights ago I woke up about 4am with really low cortisol. I suffer from a life threatening illness called Adrenal Insufficiency and as a result my body is unable to produce cortisol which is a life saving stress hormone.

So what happened and how did I know I was low in Cortisol?

Well for me I get a number of symptoms often and regular when my Cortisol levels are used up faster than I replace them with my medication. When I am low in cortisol I  can suffer from brain fog, dizziness, stabbing pains, weak muscles, fatigue, low blood pressure and much more.

Yesterday, I woke up at 4am and tried to lift my arms. I realised I could not do it. I automatically felt afraid and scared. Telling your body to move and being unable to follow through is a scary feeling and can be quite upsetting.

I immediately woke my husband and asked him to give me some emergency medication. John gave me a bolus through my adrenal pump to help restore my cortisol to the correct level before I headed into an Adrenal Crisis.

Managing my Adrenal Insufficiency is something I am still learning to do five years after diagnosis and my cortisol needs can vary from day to day and hour to hour.

It’s something I am learning to do but at this point I could not lift my arms or treat myself as I was too weak, so I needed assistance.

Why Was my Cortisol Levels low?

There are so many reasons cortisol levels can drop low. The reality is the body is always under stress and in a healthy normal person, the brain and adrenal glands would naturally respond and produce the amount of cortisol needed each minute, hour and day according to stress on the body.

Trying to replace my Cortisol requirements with cortisol medication is incredibly hard at times and I during times of sickness or added stress I do need sometimes a double or even triple dose of hydrocortisone medication. In extreme situations, I will need an emergency injection and need to go to hospital for treatment.

Whenever I become unwell, which is often, I have to check for certain things. I always ask myself has something unusually stressful happened? I check the body for skin infections. I breath and pause and try to notice any pain in my body.

I suffer from pain on a daily basis so that is something I am used to, however I am still and check each part of my body for unusual stabbing or throbbing such as a headache.

I guess for everyday healthy people noticing a new headache or a stabbing pain would be very easy but for someone who is chronically unwell it can be hard to notice a new symptom when your always suffering.

A Virus, Infection and Emergency

My husband currently has the flu and my daughter had a virus a week or so ago, therefore there is a chance my body is fighting a virus inside. In this scenario my Cortisol needs will seriously increase, even when I have not yet presented with a viral infection.

Sometimes the body fights off a virus which never presents and other times it may be building up over a week or so and whilst a healthy person will never notice, my body reacts due to not having enough cortisol to deal with the added stress.

The second thing I discovered is a new skin infection, yet again! Cortisol is a steroid and whilst it is a life saving and necessary medication, it also weakens the immune system and in particular my skin and I can easily get a new skin infection every week. I often do and I am continuously prescribed cream from my doctor for these situations.

It does not matter how clean I am, the skin will become infected under my breast or in other places and my cortisol needs will shoot up. Skin infections require me to triple dose as they really do tend to drain me of Cortisol.

So this week as I fight a potential virus in my system and fight a new skin infection, I have been triple dosing on my medication. However I still woke up heading towards adrenal crisis with stabbing pain and too weak to move.

It was scary and I needed urgent medication.

So what happened?  The answer is a family emergency. Casper our dog had an accident. I had found him bleeding and we had to deal with it urgently. Although I was concerned as any dog owner would be, I was not stressed out or anything but the body does naturally go into a fight or flight mode and cortisol is used up faster in unusual situations.

Casper was treated and everything worked out okay but my cortisol levels clearly were not. My body must have used more cortisol than I had expected and therefore I woke 8 hours later unable to move and heading in a bad direction.

Replacing My Cortisol Hydrocortisone

I had an emergency bolus on hydrocortisone and waited several hours. Eventually after a few hours I could lift my arms and legs again. However I had a major headache, fatigue, stabbing pains throughout my legs and felt exhausted.

I still felt low in cortisol and gave myself an extra 5mg of medication at 8am and then went to bed for the morning.

Managing adrenal insufficiency sure is hard to do at times and this was no exception. I am glad I have had five years experience and that I can deal with these situations even if I need the help of another to give me medication at times.

I am grateful I was able to prevent an adrenal crisis and that I can recover at home in bed. This type of situation can happen a lot. For me every week and it’s a constant cycle of getting the levels right and then getting low and then recovering but at least I know what to do now and don’t have to spend half my life in hospital anymore.

It’s so hard living with Adrenal Insufficiency and other Chronic illness conditions and even the simplest of things like someone crashing into me with their trolley at a supermarket has sent me into crisis. I just have to be careful and the reality is I need someone to be with me a lot of the time in case I go into crisis and can’t deal with it myself.

I’m glad I could share this with you and hope it helps others to understand Adrenal Insufficiency a little better.

Angela x

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