Secondary Adrenal Insufficiency is a serious and life-threatening illness often caused when the Pituitary gland in the brain fails to send sufficient amounts of the hormone ACTH to the Adrenal glands. This results in insufficient amounts of cortisol being released into the bloodstream and can lead to low cortisol symptoms and adrenal crisis.
What You Need To Know About Secondary Adrenal Insufficiency
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Being diagnosed with Adrenal insufficiency can be a scary and life-changing experience. Today I am sharing 15 facts about Secondary Adrenal Insufficiency to help you better understand the illness and how it affects those suffering from Adrenal Insufficiency symptoms.
There is a lot to learn about Secondary Adrenal Insufficiency and whether you’re a patient, a doctor or a medical professional, it is important to understand the cause of the condition. This includes how dangerous it can be and how to treat a patient on a daily basis and during an adrenal crisis or medical emergency.
These facts are important for the following people:
- A newly diagnosed patient of secondary insufficiency
- Parents of infants and children with secondary insufficiency
- Medical professionals dealing with Secondary AI patients
- Surgeons operating on someone with Secondary Adrenal Insufficiency
- Ambulance and Medical Emergency staff
- Dentists who perform fillings and dental treatment
- Your local GP or Doctor
- Family members of patients with Adrenal Insufficiency
- School staff of a child diagnosed with secondary adrenal insufficiency
The list goes on. It is very important for all to understand this serious condition as knowledge can help manage low cortisol and prevent unnecessary death.
What Is Secondary Adrenal Insufficiency?
Secondary Adrenal Insufficiency is just as life-threatening as Primary Adrenal Insufficiency known as Addison’s Disease. Secondary Adrenal Insufficiency is not Addison’s Disease. Addison’s Disease is when the Adrenal glands cannot function properly due to the adrenal glands failing to work directly.
Secondary Adrenal Insufficiency is due to a lack of ACTH being produced in the Pituitary, a small part in the brain and this pituitary problem results in a secondary problem in the adrenals being the life-threatening condition of insufficient Cortisol production.
Secondary Adrenal Insufficiency Symptoms
Some of the major Secondary Adrenal Insufficiency symptoms include severe fatigue and weakness, ongoing exhaustion, loss of appetite, weight loss, nausea, vomiting, painful muscles and joints, diarrhea, irritability, and depression.
As Aldosterone is usually present in Secondary AI, low blood pressure is not always a major symptom of Secondary Adrenal Insufficiency although low blood pressure can happen in some cases.
Causes Of Secondary Adrenal Insufficiency
There are two main causes of Secondary Adrenal Insufficiency. The first cause being damage to the Pituitary or having a Pituitary tumour. A Tumour in the Pituitary can cause the pituitary to stop secreting ATCH hence causing the Adrenals to stop producing Cortisol.
A secondary cause of adrenal insufficiency can be a Pituitary Tumour is usually picked up via MRI scan and a patient may have the tumour removed followed by radiation therapy. In this case, the ability of the pituitary to produce ACTH is generally damaged forever and the so the patient becomes life long dependent on Cortisol (steroid) replacement therapy to ensure sufficient cortisol is available in the body.
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Steroid Use Can Cause Secondary Adrenal Insufficiency
The second cause of Secondary Adrenal Insufficiency is through the use of glucocorticoid medications which are often used to treat a variety of illnesses. Glucocorticoids are steroid hormones that function the same as Cortisol. For example medications such as Cortisone, hydrocortisone, prednisone, prednisolone, inhaled and topical steroids.
All these medications can have an effect upon ACTH as the Pituitary only produces ACTH is a response to the body’s need for Cortisol. If the pituitary thinks the body has enough Cortisol from steroid medication, then the adrenals will slow down and once the medications are stopped the patient may suddenly become Adrenal Insufficient. Once again need to be placed upon steroid replacement medication permanently.
Is Secondary Adrenal Insufficiency Permanent?
Some patients, certainly not all, who develop secondary AI due to Glucocorticoid medications have the potential to recover their adrenal function. This can take between 9 months to a year and the patient may eventually be able to produce the correct amount of ACTH and Cortisol once again.
This, however, is not always the case and many who develop Secondary AI, will become steroid dependent for life. It’s advised you discuss this with your doctor if diagnosed with Secondary Adrenal Insufficiency as recovering from the condition is always better than being cortisol dependent for life.
Taking Medication For Secondary Adrenal Insufficiency
People with Secondary Adrenal Insufficiency are steroid dependent. This means they are reliant upon taking cortisol medication every day.
This medication is called Hydrocortisone replacement therapy. Cortisol is the “stress hormone” and without it the body would go into adrenal crisis and eventually die.
Stress Dose Steroids For Adrenal Insufficiency
People on steroid replacement therapy will need stress dose steroids during times of illness such as infection, high temperature, and fever. Secondary AI patients will need to be aware of their wellbeing and any illness will need to be compensated to prevent an Adrenal Crisis. You may need to stress dose for a sudden Allergic reaction.
There may be many different reasons to take stress dose hydrocortisone in addition to your usual daily steroid amounts. You can read about this by clicking the link above.
Adrenal Insufficiency And Exercise
When someone with Adrenal Insufficiency exercises in a way that is more physically demanding than usual, they may need to take a little extra steroid medication beforehand to help the body cope with the added stress.
Sudden Shock With Adrenal Insufficiency
Often sudden shocks such as being in a car crash, learning of the death of a loved one or a big argument can result in a need to increase Steroid coverage. Additional emotional stress can clear cortisol faster than usual and make an Adrenally Insufficiency patient very unwell.
Dental Treatment With Adrenal Insufficiency
Secondary Adrenal Insufficient Patients will always need extra steroid coverage during dental procedures, operations and certain hospital tests which place more than usual stress on the body. For example during the preparation phase and during a colonoscopy.
You can read about my experience at the dentist here.
What Are The Symptoms Of Low Cortisol?
Often when low in cortisol, patients with Secondary Adrenal Insufficiency can develop brain fog and poor concentration levels. This can affect the ability to work out what medication is needed. Therefore it is important to always wear a medic alert band and have someone with you who can help to work out how much extra hydrocortisone to take.
When low in cortisol, there are many symptoms. This could be feeling dizzy and being low in blood pressure, having stabbing pains, feeling weak, having an inability to stand, feeling nausea and having diarrhea. For a full list of symptoms visit the following article.
What Is The Hydrocortisone Emergency Injection?
Secondary Adrenal Insufficiency patients will need to carry an emergency injection with them in case of sudden adrenal crisis. The hydrocortisone emergency injection can be life-saving. Many patients have died from an adrenal crisis and the condition should be taken seriously and can be life-threatening. Carrying an emergency injection will enable you to get treatment quickly in the case of sudden adrenal crisis.
Vomiting With Secondary Adrenal Insufficiency
If someone with Secondary Adrenal Crisis has prolonged vomiting due to an illness or a stomach bug, they will need an emergency injection and immediate hospital treatment.
How Much Is Too Much Steroid Coverage
Too much steroid coverage on a regular basis can result in Cushing’s Symptoms, hypercortisolim, weight gain, bone problems, diabetes, and a moon-shaped face. It is important for a patient to be on the correct dose so as to ensure they are not under or over replaced as both not enough and too much cortisol can have serious consequences.
Raising Awareness For Secondary Adrenal Insufficiency
Secondary Adrenal Insufficiency is not an illness that is commonly talked about or researched in the same way as more well-known illnesses such as diabetes and Asthma. There is much yet to be done to help people suffering from this condition to have a better quality of life.
More research needs to be carried out to help patients affected by the condition, in particular, monitoring cortisol levels and providing cortisol medication to match the Cortisol circadian Rhythm.
I hope these 15 facts are useful and helpful. Please do share this post to help spread the word and awareness for Secondary Adrenal Insufficiency.
You may find the following content useful.
15 Facts About Addison’s Disease
What’s it really Like to Have Adrenal Insufficiency
Children have Adrenal Insufficiency Too
Why the Adrenal Pump is a brilliant treatment for Adrenal Insufficiency
From Cancer to Adrenal Insufficiency – A Brave Story
My First Magazine Appearance and the fight to Kick Adrenal Insufficiency in the Butt!
I see this say that sai is only cuased by 2 things which is false. My daughter was born with a ectopic pituitary glad, which also causes SAI. Please update this article so people can be properly educated. Thank you
This article states that their are two main causes for SAI, This is true and correct. The only way to get SAI is via pituitary damage (damaged caused for different reasons) or from taking excess steroids.
Pituitary damage can be caused by a tumour (which is the most common reason for pit damage) or damage can occur during an accident such as a car crash or blow to the head or in your child’s case being born with damage due to an ectopic Pituitary.
So I will not be altering this article as it is correct and your clearly taking a personal stance because It did not mention the specific cause of your child’s illness.
Just because I say, “the two main way” does not rule out every single other option. This article is about SAI and the most common cause of the illness. It is not an article about every possible cause and clearly you have taken this personally.
Thanks for posting this article. I haves shared it with everyone because it’s simple and to the point. I have SAI due to taking asthma medication. There is very little information out there about SAI and the symptoms don’t necessarily match AI. I developed severe fatigue for six months before other symptoms occurred. I have never had low blood pressure. So your article is correct that SAI patients don’t always have low blood pressure. I was the first documented patient at a major hospital to develop SAI from an inhaled steroid. Four years later I am still steroid dependent and suffer from chronic fatigue. A couple of your articles mention dosing for above normal exercise? Do you know where I can find information on this topic?
Hi sorry to here you have Secondary AI too. I think the best place for advice is http://www.addisons.org.uk/ . I was given a leaflet from my NHS trust which said when and how to increase doses which is what i follow.
Jan martell says
No mention of SAI being caused by hemorrhaging after childbirth.
Your right in a way… It’s called sheehans syndrome which is what I have…. bleeding during giving birth can damage the pituitary and as stated above pituitary damage is one of the main causes of SAI. I haven’t gone into details about every way the pituitary can become damaged but the end result of pituitary damage can be adrenal insufficiency. Maybe I will write an article on different ways the pituitary can become damages, eg, tumour, injury and losing blood after giving birth. However pituitary damage is clearly discussed above. 🙂
Terry Jones says
My SAI developed after immunotherapy for stage 3/4 melanoma. SAI for me is a small price to pay for the immunotherapy saving my life. While I live in a built up area, no problems. But we are about to travel to remote areas of Australia. Preparing for an emergency injection is scary. Thankfully my GP is very supportive.
Thank you so much Angela for all your work and efforts you’ve quite obviously gone to, as sharing this article amongst my family & friends will make it SO much easier for them to understand what someone with SAI (which was first discovered in my Blood Tests in 2016.
I live in Australia, and I am disturbed at the combined lack of knowledge from the 5 different Endocrinologists I’ve seen between 2016 & 2018. The fifth Endo I saw, I sat quietly as he read 2 years worth of reports – after which he asked me extremely relevant questions (by this time – as I knew from the beginning that my body had SAI) and after his reading and Q & A with me, he told me that it was extremely clear that I most certainly did have SAI and then he made a bunch of notes and then gave me the bad news!
He had then informed me, that despite my clearly having SAI, he was ‘not’ willing to prescribe me the life saving Medicines, the Corticosteroids that are amongst the most commonly used medicines, as he did not want to start me on a medicine I would have to take for the rest of my life.
My GP was no help at all – he said he wasn’t capable of prescribing the medicine for a medical condition he didn’t know a single thing about. I knew he was being truthful, as even at the first Cortisol blood test he ran as part of his out of the box thinking, as he was trying to figure out why my body needed so much excessive sleep. When my blood test results were available, he called me to make an appointment to come and see him.My Cortisol level was “extremely” low, it was 50 nmol/L and the range with that Pathology lab was 220 to 700 nmol/L and he’d looked at me and said that I had Cushings … I told him it wasn’t cushings, as Cushings is the opposite, it woud mean my Cortisol was way too high.
The reasons I knew that, as I had done research on Adrenal Disorders previoiusly, after my Mother was diagnosed over 30 years ago now, with Conn’s Syndrome (aka Primary Aldosteronism. I have a brother who went to his GP and told him he believed his testorone levels were too low, so his GP “only” tested that one hormone and found that yes, it was lacking a LOT. My Brother has a cream he rubs into his skin that treats that – I just wish he got more than just the one hormone tested, as I now wonder if he has Hypopituitarism, or if like me when I was last tested for my hormone levels (6 years ago), I now have a new pathology request that will test a few more of the common hormones that are produced by the Pituitary Gland, though it does not appear that he’s included any of the Hormones produced by the Hypothalamus. Anyway, fingers crossed.
I am now finally & officially diagnosed with SAI after 6 years, the saddest part of the diagnosis is that I had to go into an Adrenal Crisis before anyone would help me! At least now I am taking Hydrocortisone every day (since just the 3rd week of May this year 🙁 when my blood tests came back 8 days post crisis, my ACTH was 100% non-existent at all :'( and the Cortisol was amazingly present, but at 60 nmol/L. Considering the range though was 220 to 700 nmol/L my doctors FINALLY got with the program and I am now on meds. Next stop will be the hospital hopefully within a few weeks, where they want to try and figure out the “Why” this is happening. So in the meantime, I’ve been asking this other GP I’ve been seeing throughout – as 2 days after the Adrenal Crisis, when I could stay awake longer, I had asked my GP’s clinic (he owns it and the GP I am seeing works for (is employed by) my regular GP who was unable to help me before – but yes when I rang them, I just asked for whichever GP I could get in to see first! He’s been fantastic – he rang a colleague who works for the Endocrinology Department at the hospital, early the next morning for advice on what to prescribe me and how much – so I first was taking “Dexamethasone”, then I was prescribed “Cortate” and I am now taking “Hydrocortisone” (*rolls eyes*) they only had me on Dex for 2 days, Cortate long enough to use the single bottle, and now on Hydrocortisone for 3 days, today is day 4.
My first symptom of low cortisol seems to be episodes of the “confusion”, which my Mother has now witnessed twice in the past 30 days. We were on the phone, I had been talking about how I was having episodes that came out of the blue, where I was experiencing feelings of “Adrenaline”, and trying to explain to my Mother why it was not making me want to jump up and become active with the Adrenaline, when instead it was making me feel ill & exhausted. I did not know then, but a rather new but amazing new best friend, explained to me my need to updose as the Adrenaline was draining what Cortisol I had in my body – and it was happening half way between my Circadian Rhythm dosing schedule.
What they call confusion though – I believe is also partly a ‘delerium’, as my Mum talked to me during it, it was our usual evening phone call it happened in the middle of. It lasted about 15 minutes and then I came out of it. Thank goodness, Mum was getting ready to drive the nearly hours drive to my place here in Australia and then drive me to the hospital (so would have been a 2 hour round trip for her!) But probably faster than it would have been for me to wait for an ambulance. What freaks me out about these “confusion” episodes, is I have no recollection of the event happening, what was said or asked of me, nor any of my replies. To me, that 15 minutes was just non-existent, it was missing time. How am I supposed to recognise a low cortisol episode, if there’s no one around to witness it and afterwards I have NO memory of it happening? That is very scary for me. I live alone, with my Dogs and cat, chickens and sheep!
I also still have a great difficulty in waking up of a morning to get that morning dose in me – 99% of the time I just do not wake up – no matter how many alarms I set – and my Mum and I also have a standing arrangement, where if I don’t text her by a certain time to let her know I’m up and about – she will start continuously phoning my landline phone, to make more noise besides the 3 seperate alarms blaring… :'(
I feel so scared all the time now Angela :'(