Please note: I am not a medical professional and this post is based on my experience. Contact a medical professional if you have any concerns about your own health.
Good morning and happy Monday! I hope you all had an amazing weekend!
If you follow me on social media you will have seen that earlier this year I was diagnosed with Secondary Adrenal Insufficiency. It wasn’t entirely unexpected, as I had been on steroids non-stop for over 11 years, as well as various courses before that. I do want to share my experience though as I did have a little bit of a fight on my hands when coming off the steroids and people should know how it should be done safely.
Background
So I have been on and off steroids for my entire life due to my rheumatoid arthritis, uveitis and Crohn’s Disease. I had to start a course of prednisilone 12 years ago when I was pregnant with Riley. Unfortunately, due to my various conditions, I have never been off them since, and have been on varying doses of it ever since. The conversation began a few years ago about reducing the steroids and I was warned that having been on them for so long, this may be difficult and would be a slow process.
At the time I was on 15mg and it was agreed I would reduce by 1mg every 4 weeks and would check in when I was down to 10mg. This all went well and I was told that the next phase would be slower and potentially more tricky. When you drop below the 7mg mark, your body’s adrenal gland as to kick in and produce cortisol itself, which before this, the steroids was artificially providing for me. From this point I started taking 10mg and 9mg on alternate days, and every 4 weeks I would drop 1mg on each day.
At this point I asked about being referred to endocrinology who could monitor this process, but was told it would be fine. In 2021 I had my panproctocolectomy surgery and was given a boost of IV steroids during surgery and through the first few days, before they reduced me gently back down to my then current dose of 8mg and 7mg on alternate days. By this point I had had numerous conversations with doctors about the possible risks associated with reducing the steroids after being on them so long and really felt they were happy to let me continue managing it at home alone, as per their instructions with no real follow up. Following my post-surgery checks, I spoke with my surgeon about these concerns and luckily, she was totally understanding and put in a referral to endocrinology there and then, saying that it needed monitoring very closely as the condition that can be caused, if my body has become reliant on the steroids, can be dangerous.
Diagnosis
And that is the condition they found me to have – adrenal insufficiency. But first – the testing process.
My endocrinologist was great and we came up with a plan to reduce me down to 5mg of prednisilone so I was able to have the AI tests.
I was then given a blood test which had to be done early in the morning, before taking my steroids that day. I was told I had failed that blood test and needed the more in depth testing for a more accurate picture of what was going on.
For this, I was admitted tot he day case unit and again, had to not take that day’s steroids until after the test was complete. They took some blood and then gave me an injection that is supposed to stimulate your adrenal gland. This made me feel a little sick in the first few minutes, which they had warned me about. After an hour they then took some more blood – this turned into a bit of a palaver with them unable to get anything from my right arm. After numerous attempts in my left, they ended up going in the original place where they had got blood first thing. The staff were all lovely, I was given tea and biscuits during the morning and was able to curl up on a big chair and read my book for a while!
The following morning my endocrinologist called me and said that I had failed the test and I did, in fact, have adrenal insufficiency.
The Plan
We discussed the plan moving forward. I was switched from prednisilone to hydrocortisone. This is another type of steroid and the reason for the switch is that there are often less side effects with this medication. However, it acts a lot quicker, so I have to take it more regularly through the day to keep my levels up. My dose was changed after a few weeks, to three times a day as I was really struggling in the late afternoon with severe fatigue, and then the amount was increased as they felt I may not be absorbing enough of the medication, possibly due to my ileostomy. I now take 25mg in three doses – when I wake up, lunch time and between 4 and 5pm.
I also had to attend an ‘education’ appointment to learn more about the condition. As your body needs higher dose of cortisol when you are unwell and experiencing physical symptoms related to stress, I have to double the normal dose I take for at least three days. I also have to carry an injection around with me in case of adrenal crisis and was taught how to administer this and what to do next – essentially call an ambulance and get into hospital.
What Is Adrenal Insufficiency?
Adrenal insufficiency is a condition in which the adrenal glands do not produce adequate amounts of steroid hormones. The adrenal glands, also referred to as adrenal cortex normally secretes glucocorticoids (primarily cortisol), mineralocorticoids (primarily aldosterone), and androgens. These hormones are important in regulating blood pressure, electrolytes, and metabolism as a whole. Deficiency of these hormones leads to symptoms ranging from abdominal pain, vomiting, muscle weakness and fatigue, low blood pressure, depression, mood and personality changes (in mild cases) to organ failure and shock (in severe cases). Adrenal crisis may occur if a person having adrenal insufficiency experiences stresses, such as an accident, injury, surgery, or severe infection; this is a life-threatening medical condition resulting from severe deficiency of cortisol in the body. Death may quickly follow.
Secondary adrenal insufficiency is caused by impairment of the pituitary gland, resulting in a lack of adrenocorticotropic hormone (ACTH) production and subsequent decreased adrenal stimulation. Since the adrenal glands are not directly affected, the effect on mineralocorticoid production is minimal, as ACTH primarily affects glucocorticoid production
This isn’t my first rodeo, being diagnosed with a chronic and dangerous condition. However, while we had anticipated the result, I found that following the confirmation of the diagnosis and learning more about the condition and what it can do, I did experience a dip in my mood. I have previously talked about grief following a diagnosis and definitely felt I was going through something similar. I have a good friend who lives with this condition and it was great to talk to him and get some advice. He also pointed me in the direction of a support group on Facebook.
So far I am doing ok – I haven’t gone into adrenal crisis so far although was pretty close on a couple of occasions. I have had to double my dose on a few occasions due to illness etc. There is the potential that I will still be able to decrease and be steroid free in time, but due to requiring steroid eye drops, injections and medication for my various conditions, this is unlikely for me. I feel more in control with how to manage my steroids now and the initial grief of another diagnosis has mostly passed. The thought of a crisis does worry me, but as with my other conditions – living scared of a flare or crisis doesn’t benefit me and I need to enjoy the good days, rather than constantly be worrying.
If you have any questions please pop them in the comments below and I will try my best to answer them. Have a great week,
The Spoonie Mummy 
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