Coping With Adrenal Insufficiency What I Have Learnt After Four Years
Next month will be my fourth anniversary of being diagnosed with Secondary Adrenal Insufficiency. Adrenal Insufficiency is a serious life threatening illness where the body fails to make enough of the essential hormone cortisol, a hormone which deals with any stresses placed on the body.
Cortisol deals with all types of stresses from a sudden shock when the door slams closed, to the stress of standing and walking around, the stress of an emotional situation or something more serious such as an infection. Without the right amount of cortisol in the blood stream, the body can suffer symptoms of low cortisol and go into an adrenal crisis which if left untreated will lead to death.
Today I wanted to share my own experience of how I work out when I need more cortisol medication and how infections affect my adrenal insufficiency. I hope this helps someone else in a similar situation or helps inform medics to understand this better. I also wanted to share this for anyone newly diagnosed with Adrenal Insufficiency as it can be a difficult condition to come to terms with and understand. Recognising symptoms takes time and can be different for each individual.
My Symptoms of low cortisol
There are many different symptoms of low cortisol. For me they come in stages and recognising these symptoms is key for me in treating my condition before I end up needing to go to hospital due to an adrenal crisis. Recognising and figuring out your symptoms can be really hard to do especially when you have other conditions and due to the fact low cortisol can make it very difficult to concentrate and therefore work out what’s going on and what you need. It is a battle but after almost four years I am getting much better at recognising when I get unwell.
After talking to many people with my illness, I have come to realise that the primary symptoms of low cortisol can differ from each patient but here are my symptoms in the order that they usually come for me.
At the start:
When I get low in cortisol, my first symptoms are usually brain fog and difficulty concentrating. I know something is not quite right but find it hard to work out what’s wrong. I will feel very tired and need to sleep.
(With this I know I need to double up my medication and take a little extra cortisol – often for me 2.5- 5mg extra medication followed by plenty of rest) This will either help me to improve or if I need more medication I won’t improve or will get worse. You can’t measure cortisol levels without going for a blood test at a medical centre or the hospital so it is always a guessing game which is difficult. For me no matter how much extra medicine I take whether it be the smallest amount or a lot more cortisol, I am always wired after taking extra medication and therefore I struggle to sleep at night.
My next set of symptoms as my cortisol levels worsen are as follows. I begin to feel dizzy and lightheaded. This is due to my blood pressure dropping. I feel nausea and sick and usually start telling my husband I feel unwell and sick. I get a little whiny and repeat myself a lot. I want to throw up but I don’t. It’s just a feeling. I then feel weak. I cannot stand without feeling like my muscles are jelly. I feel like I am about to collapse. If I stand and try to walk then my knees buckle and I may fall to the ground. I will need help to get up the stairs or help to go to the bathroom. I just need to sleep and rest and I have serious pain throughout my body, especially in my legs and arms. Sometimes my speech goes funny and I can’t get the words out. I may try to speak and it just sounds like a moaning sound as I can’t get the right words out without serious effort.
I will at this stage need pain relief for the body pain and more fluids to help me with my blood pressure.
If I get to this stage, I will need to emergency bolus. I will take between 5-10mg extra medication and remain on a double dose of medication for 2-3 days until my symptoms have gone. Sometimes I don’t have a clue what has caused my body to use up my cortisol faster than usual. It could be a virus brewing in my body, an infection I don’t know about or emotional stress. I will check my skin for possible infections and try to rule out any obvious causes. Unfortunately the treatment for low cortisol (natural steroids) is hydrocortisone a steroid and this can affect the skin, meaning more infections and also lower immunity so more viruses and bugs.
If my symptoms don’t improve I will go into what I call my pre- adrenal crisis stage, This is where my symptoms get dangerous. I will have a severe stabbing pain in my adrenal area under my chest. This is my tell tale sign that I need an emergency injection and a visit to the A and E department. I will be unable to walk or stand. My blood pressure will worsen, I will have sudden and severe diarrhoea and sometimes vomiting.
For some adrenal insufficient’s, there is always vomiting but for me my main symptoms pre crisis is the diarrhoea, blood pressure issues and stabbing pains. Many I have spoken to do vomit at this stage but for me I find it difficult to do this even when I feel nausea and want to vomit. I was like this during pregnancy. I had morning sickness but could never actually vomit, so it may just be the way my body is.
When I get to this stage I will need emergency cortisol in the form of a 100mg hydrocortisone injection which my husband can give me in my thigh or an IV of hydrocortisone given by the hospital. I will also need fluids at the hospital and depending on how low my blood pressure is and how severe my symptoms I may need a few days in hospital. Sometimes in these circumstances there will be an underlying cause for my illness such as food poisoning an infection or another illness. I may need to be in hospital until that illness has cleared up and my cortisol levels are improved.
When I am serious enough that I am admitted to hospital I usually need 100mg of hydrocortisone every 6 hours until I start to get better. Once my blood pressure is okay and I feel improved (my symptoms go away) I am reduced to a double dose of medication and need to remain on this for usually a week after leaving the hospital. I am usually fatigued and exhausted and it can take about a month after a hospital stay to feel back to my usual unwell self.
Monitoring Cortisol At Home
Keeping on top of my cortisol levels is something I have to do every day. I can suddenly feel unwell or it can happen slowly and I will worsen over time. My husband really does help me to monitor my condition and although many don’t understand why John would need to be with me so much and ask “why my husband does not go to work full time” the reality is he stays close by to help monitor my health and help me manage my illness.
I do have a few other health conditions which can make it more tricky to work out what is affecting me. I have low Iron, asthma, human growth hormone deficiency and chronic fatigue, although I am sure the fatigue is due to my adrenal insufficiency and iron issues.
I am learning to recognise my symptoms better. I am treating it better but I do need to up-dose a lot. I find myself increasing my medicine every few days or at least once or twice a week. This can make me feel extra hungry, wired and unable to sleep. My biggest problem is that I get infections so so easily and can easily catch a new virus. I have to check my body for skin infections daily. They can appear suddenly and I may be unaware of them.
For me infections are the one thing which makes me unwell the fastest and can send me straight to the second or final stage of my low cortisol symptoms. In fact I currently have an infection the size of my palm and am on antibiotics. Last night I was dizzy and unable to stand. John helped me to take extra meds and double up and I fell asleep. Now 12 hours later I am wired and unable to sleep. My brain is functioning well and I can type but I am in pain and too weak to walk around.
My daughter asked for eggs on toast this morning. She said, “can I have eggs on toast mum or are you too tired today”. That’s sad for me. I would love to get up and make Sylvia eggs on toast. Instead we will have to settle for cereal which as a 9 year old she can make for herself. We have plenty of snack food, fruit and sandwich items in the fridge and tonight my husband will cook a nice meal for the family and each day until I feel well enough to do it together once more.
Having adrenal insufficiency is something I would not wish on my worst enemy. If you are newly diagnosed, you will have either primary or secondary Adrenal Insufficiency. If it’s secondary there is a chance it can be reversed before your adrenal glands stop producing cortisol altogether. For me, It took months to be seen by specialists and by the time I was seen it was too late. If you have secondary AI, try to get seen as soon as possible and ask if it is possible to try and reverse your low cortisol levels back to normal before it’s too late. I didn’t get the chance. I wish I had.
The first three years for me were the hardest. Learning to recognise symptoms and manage this is particularly hard and to be honest I have got much better at this in the past year especially since I went on an adrenal pump which for me is the best method for delivering my daily cortisol needs to my blood stream. However it is catch 22 as an adrenal pump can cause stomach infections from time to time which can cause low cortisol. It’s not an easy condition to manage but with time you will get better at this.
I do think getting a diagnosis of Adrenal Insufficiency is likely to cause a lot of anxieties and worry and the stress of not knowing your symptoms and learning to cope and manage can all make the condition more worse. With time it get’s easier management wise but can still be difficult mentally to learn to live a new normal.
Thanks for sharing your symptoms, I haven’t dealt with this personally but now know what to look for.
your welcome. I know it will help others and has done by some personal messages i have read.
Travel Blogger says
I didn’t know much about this disorder, but it sounds so frustrating and debilitating. I am sorry you have to go through this. Thank you for sharing. It may just help someone else with the same disorder.
yes it has. I have had several emails and messages from people who this has helped already and so it is worth writing about. I wish someone had written about it when i became unwell.
kelly reci says
Adrenal Insufficiency??? never heard of this before, Im very interested with this topic, I would like to know more about it!
Well I have plenty of posts on the subject if you would like to read about my experiences.
Gareth Torrance (@marketing_punk) says
I have never heard about this before… Thank you for sharing it, as it means I know what symptoms to look out for in case it affects my daughter in the future 🙂
Your most welcome. It’s not common so when people do get this condition it can often take several years to figure out.
Christine Cox says
I never knew about this prior to reading your story. I am so glad that you shared your experiences and what you do to control your situations. I really do like reading things like this because you never know what life will bring for you and your family and it is always good to have this knowledge!
Cindy Gordon says
Wow, bless your heart. It sounds like you handle it with a positive attitude and that’s amazing.
Our Family World says
Thank you for raising awareness about Adrenal Insufficiency. It must be such a horrible experience to go through all of that. I wish you well and hope that you feel better everyday.
thanks. I appreciate your comments.
elizabeth o says
Your post and personal details about Adrenal Insufficiency were every enlightening. I was also impressed by the way you have managed your condition and the lessons here are helpful to all with chronic conditions of any kind. Much appreciated learning.
Thanks. It is difficult but a learning curve and something I can hopefully help others with in the same situation.
Annemarie LeBlanc says
That is a lot you have to go through! I also have chronic illness, I am diabetic, but i have not had any bad episodes of hyper or hypoglycemia. Thank you for sharing your story.
Martha Rafferty says
I was given my test results today from my SST test last week that confirmed that post my pituitary surgery that I am SAI. Apparently they are so low it is unlikely the adrenals will wake up. We shall see when we check in again in 6-12 months. Id looked into it all before as prep in case of this but it is different to find out that it is the case. I should be asleep right now. I feel my normal nausea and eye ache / sinus squeeze, i dont know if you get that with your fatigue?
Anyway these posts will be helpful to me if for nothing else but to share with others who will expect me to be better from cushings post op, instead weve mostly swapped to something different!
On the positive side the swap happened before cushings gave me diabetes / bp issues 🙂
Thanks for sharing and id like to know more about your pump…shall see if youve done a diff post about that 🙂
your welcome. It s tough when the pituitary is playing up. Yes you fix cushings you have AI, you fix Ai , you have cushings.
Julie syl says
I never heard about Adrenal Insufficiency. Thank you for this post, now I will be aware about this disorder. I hope you’ll always get better and well.
That’s good. The more people who are aware of this the better!
Elaine Livingstone says
A good informative post for those of us just coming to terms with a diagnosis. In my grandson what worries me most is the fact I cannot see or hear this condition unlike a lot of his others that have outward warning signs
thanks. It can be a worry. Especially if it’s a child with the condition.