Ruth's Story: Tertiary Adrenal Insufficiency

Meet ADHSG member Ruth, a retired Academic Clinical Psychologist with a diagnosis of tertiary adrenal insufficiency (TAI).  As well as sharing her story, she has also taken a look at the scientific evidence for tertiary adrenal insufficiency, which we link to from this article. She hopes to help others out there who have the same diagnosis, understand their condition.

Context: A brief explanation of Tertiary Adrenal Insufficiency

Tertiary adrenal insufficiency is one of the 3 types of adrenal insufficiency. Visit our 'What is Addison's disease and adrenal insufficiency' webpage to learn more.

Primary Adrenal Insufficiency (Addison's disease)

Also known as Addison’s disease, it was first identified by Dr Thomas Addison in the 1850s. It is most commonly an autoimmune condition, where the body mistakenly attacks and destroys the cells of the adrenal glands, preventing them from functioning properly. The exact cause of this autoimmune attack is still unknown. In Addison’s disease, the adrenal glands are unable to produce the hormones: cortisol, aldosterone and DHEA.

Secondary Adrenal Insufficiency (SAI)

Secondary adrenal insufficiency is caused by a problem within the part of the brain that ‘controls’ the adrenal glands (the pituitary gland). There are several different reasons why the pituitary gland might not work as it should. Underproduction of a hormone called ACTH (adrenocorticotropic hormone), leads to reduced cortisol secretion from the adrenal glands.

Tertiary Adrenal Insufficiency

Tertiary adrenal insufficiency can occur as a result of taking long-term steroid medication for other conditions, for example, asthma, skin or joint conditions. The balance between hormones produced by the hypothalamus in the brain, the pituitary gland and the adrenal glands is affected, and stopping the glucocorticoid medication may cause adrenal insufficiency.

Ruth's Pathway to Diagnosis

I was diagnosed with asthma in my early teens and it was well controlled until my late 30’s, when I experienced a very significant asthma attack.  After that, throughout my 40’s, I was very unwell and was under the care of the local severe and brittle asthma service for many years.

For over 10 years I was prescribed the inhaler Seretide (Fluticasone propionate), an inhaled glucocorticoid (GC). In addition, I was often prescribed short courses of high dose prednisolone (an oral glucocorticoid) and rescue antibiotics when I experienced frequent chest infections several times a year. On numerous occasions, the chest infections would become pneumonia, the worst episode being in 2015 where I spent a week in hospital. This pattern of serious illness impacted my life very significantly and throughout this time, the respiratory team tried to understand why I became so poorly, so frequently. 

I was tested for numerous disorders and allergies, but could never get to a point where my Seretide inhaler could be reduced. I was aware that this concerned them, as they frequently commented that the dose I was on was very high, but my adrenal function was never discussed or investigated.

During the Covid-19 pandemic, I was advised to isolate and I worked from home. Interestingly, my health improved, and following a telephone appointment with my respiratory consultant in December 2020, I was discharged from the hospital, despite the fact that I was still taking a high dose of Seretide.

As Covid-19 restrictions lifted, I unfortunately started to experience chest symptoms again, including a persistent, productive cough, and I was eventually re-referred to the hospital as a new patient. This was particularly frustrating as I had been a long-term respiratory patient in the past, and I was advised that the wait would be over a year, so I decided to seek a private opinion and I was diagnosed with Bronchiectasis, a long-term lung condition caused by repeated chest infections. I understand that the option of a private opinion is not possible for everyone!

Soon after this new diagnosis, I went into hospital for a total hip replacement. The operation went well, but I was extremely unwell during the initial recovery period, experiencing severe vomiting and dangerously low blood pressure. There was no clear reason for this, and although it meant an extra night in hospital, I was soon home and recovering well, although slowly, from my operation. 

A few weeks after my surgery, I attended my first appointment with a new NHS respiratory consultant. He took a fresh look at my history, all my tests and scans over the years and listened to my experiences of my chest infections, pneumonia and asthma, and the post-operative symptoms following my hip replacement. He asked a question that changed my life.

I wonder if your adrenal glands are working properly?

Until this point, no one had ever mentioned my adrenal glands.  In fact, I didn’t really know where they were!  He asked me to return to the hospital the following morning, before 9am, to have my cortisol levels checked. I agreed, of course, completely unaware of the huge change in my life that was just around the corner. 

The day after my blood test the consultant rang me. This in itself was rather unusual and I remember this conversation so clearly. He informed me that my cortisol levels were very low, he suspected I had adrenal insufficiency caused by the Seretide, and he would be sending me hydrocortisone tablets in the post from the hospital pharmacy. He explained I must start taking them immediately and not stop under any circumstances. I remember he then talked me through the sick day rules, although I struggled to take in any further information, and he informed me that I would need to come back into the hospital for further tests to confirm his suspected diagnosis. 

Diagnosis - a revelation

I was absolutely stunned. 

When the hydrocortisone arrived, I confess that I hesitated for a while before taking my first dose as I really didn’t fully understand the situation and had no idea how the medication would affect me. But within 24 hours I started to feel different. I had energy - I could shower without feeling tired, I wasn’t falling asleep every afternoon. As time progressed, I realised how, for the last 10 or 15 years, I had been living with a pervasive fatigue that I hadn’t been aware of or fully understood.  

Alongside the hydrocortisone treatment, my new consultant removed the Seretide, and prescribed me alternative asthma inhalers, and referred me for breathing tests. He also confirmed my diagnosis of Bronchiectasis, and prescribed me 6 weeks of antibiotics. 

It is true to say that, since that first meeting with my new consultant, my life has changed. He referred me to the wonderful nurse-led Endocrinology clinic who carried out my Short Synacthen Test, and I was formally diagnosed with Tertiary Adrenal Insufficiency (TAI) in January 2024. My scores for my SST were extremely low (and these low scores were maintained at a repeat SST in August 2024), and we have discussed the fact that I have probably had TAI for up to 10 years. 

I can now look back and see that some of my episodes of pneumonia were accompanied by adrenal crises. I can pinpoint three adrenal crises for sure: one in 2015 when I was in hospital with double pneumonia, one in 2017 when I became unwell with pneumonia during a flight to Aberdeen, and a third crisis in September 2023 following my hip replacement. 

I hate to think what could have happened.

12 months on...   Life now

I have to confess it’s been a hard year. 

I have learned a lot about adrenal insufficiency with the help of the amazing team at the hospital, and through the ADSHG, in particular from the London Roadshow, which I watched online. I have learned to implement the sick day rules on more than one occasion!  I have learned I need to be the “expert patient” when seeing the GP or attending A&E, and I have learned to carry my emergency injection kit with me everywhere I go. I have also learned to tell people about my condition, on a need to know basis, but something that has been a challenge for me. 

However, one of the hardest adjustments I have had to make is to learn that, in all likelihood, the Seretide prescribed to keep me well due to my severe asthma, has probably led to my diagnosis.  And although we have been successfully reducing my inhaled glucocorticoids (GCs), my adrenal glands are not recovering yet (and may never do so), confirmed by repeat SSTs and morning cortisol blood tests.

So I am processing the fact that a drug that I was being prescribed to keep me well, has, in fact, led to me being steroid dependent for the rest of my life. This will take time to adjust to.  

Why wasn't I told this was a risk?

I began to ask the question, “why didn’t someone tell me that Seretide could do this?” I have had a few conversations with my new respiratory consultant about this, which have been really helpful, and I then reached out to the ADSHG to ask if they had any information about this form of adrenal insufficiency and whether they can offer me any support.   

As luck would have it, the charity had been working on a new information video about this form of adrenal insufficiency, and I recommend you watch it for a clear, illustrative guide to the condition. 

CoMICs Lite: Glucocorticoid-Induced Adrenal Insufficiency 

We ask Ruth our most asked "Addison's Admin" questions here at ADSHG!

How do you remember to take your tablets? 

I have a reminder on my phone for the dose I need to take first thing in the morning, which for me is 7.15am. But actually, I never forget this one! I use an alarm on my phone for my doses at 12 noon and 4pm - without this, I would often forget. 

How do you carry your injection kit?

I carry my emergency injection kit in a box I bought from the ADSHG shop, which I carry in a bright orange medical emergency pouch. I also carry spare hydrocortisone tablets and my steroid dependency card in the pouch. 

What type of medical alert identification do you have? 

I wear a metal emergency bracelet with my name and condition on it. I also carry a steroid dependency card in the back of my phone and in my emergency medical kit. I have also set up Medical ID on my iPhone with details of my condition. 

Understand more about tertiary adrenal insufficiency and the use of inhaled glucocorticoids

As an academic, Ruth's career has been centred around evidence-based practice, and so she decided to take a look at the evidence for adrenal compromise as a result of inhaled glucocorticoids. If you would like to understand more about tertiary adrenal insufficiency as a result of inhaled steroid medication (glucocorticoids), her article gives a fantastic overview.  

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