Addisons Disease is a serious and life-threatening illness where the Adrenal glands fail to function resulting in insufficient amounts of Cortisol and Aldosterone in the body. Here are 15 facts about Addisons Disease to help you better understand the condition.
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Addisons Disease 15 Facts About You Need To Know
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Addison’s Disease is not easily diagnosed
Addison’s disease is not usually diagnosed until at least 90% of the adrenal cortex has been destroyed. This can take months or years and is often referred to as primary adrenal insufficiency.
Symptoms are common to other diseases
Some of the symptoms of Addison’s Disease include severe fatigue and weakness, loss of weight, pigmentation of the skin, dizziness and low blood pressure, nausea, vomiting, salt cravings, painful muscles, and joints. These symptoms are common with many illnesses and diseases, so can be missed or misdiagnosed easily.
Addison’s was identified in 1855
Addisons Disease was first identified in the UK in 1855. The condition is named after Thomas Addison a doctor who first wrote about the illness whilst working at Guys Hospital in London.
Addison’s Disease requires daily steroid therapy
People with Addisons Disease are steroid dependent. This means they are reliant upon taking cortisol medication every day. Cortisol is the “stress hormone” and without it, the body would go into adrenal crisis and eventually die.
Electrolyte imbalances are a real issue
If you have Addison’s Disease, you will also need to take a medication called Fludrocortisone. This is prescribed to replace the aldosterone steroid normally produced by the adrenal glands. Without Aldosterone in the body, there would be an electrolyte imbalance leading to low blood pressure and dehydration.
Common illnesses cause even more stress on an Addison’s patient
People on steroid replacement therapy will need to stress dose during times of illness such as infection, high temperature, and fever. Addisons patients will need to be aware of their wellbeing and any illness will need to be compensated to prevent Adrenal crisis.
Exercise can be dangerous
When someone with Addison’s exercises in a way that is more physically demanding than usual, they will need to take a little extra steroid medication beforehand to help the body cope with the added stress.
Emotional stress can cause issues in an Addison’s patient
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 Addisons patient very unwell.
Something as simple as a dental procedure can be dangerous
Addisons Patients will always need extra steroid coverage during dental procedures, operations and certain hospital tests which place more than usual stress on the body.
The brain fog is real
Often when low in cortisol, patients with Addisons disease 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.
Adrenal crisis can be fatal
Addisons patients will need to carry an emergency injection with them in case of sudden adrenal crisis. 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.
Stomach viruses can be deadly
If someone with Addison’s has prolonged vomiting due to an illness or stomach bug, they will need an emergency injection and immediate hospital treatment.
Temperature changes can cause steroid needs to change
Some Addisonians will need to increase their fludrocortisone medication when on holiday or under extreme temperature climbs around 30Ëš Celsius. this will help to avoid dehydration and becoming dangerously unwell.
Steroid dosage must be monitored closely
Too much steroid coverage on a regular basis can result in Cushing’s Disease, 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.
Addison’s Disease is still misunderstood
Many people have not heard of Addison’s and it is not always familiar to some doctors or medical staff. It is always a good idea to carry a letter about the illness in case of emergency and just in case the people treating the illness do not understand the importance of emergency cortisol replacement.
I hope these 15 facts are useful and helpful. Please do share this post to help spread the word and awareness for Addisons Disease and Adrenal Insufficiency.
Angela x
About Angela Milnes
Angela Milnes is a Qualified Early Years Teacher who has specialised in Preschool and Kindergarten teaching. She has a wealth of experience teaching young children and is passionate about kids crafts and having fun as a family. Angela has also taught cooking skills and loves to share both family recipes and easy instant pot recipes here on The Inspiration Edit. Follow her on Pinterest!
Thank you so much for sharing this. My spaniel has Addison’s and is on the human medication. We nearly lost him last year and through sheer luck the vet tested him. I’ve never fully understood what it means and I’m sure it’s very similar for dogs as it is humans. I honestly didn’t realise how dangerous it is as any info on dogs having it is very complacent.
yes it’s a illness that dogs can get as well as children and adults! Thanks for stopping by.
I’d honestly never heard of this before so I’ve certainly learnt something by stopping by today. Thank you for making me aware and best of luck sharing this with others. Xx
I’m glad i was able to help educate you on the illness.
The thing that amazes me is how medical professionals will completely ignore how cortisol is the STRESS HORMONE. and it’s role in keeping your thought processes even and intelligent during stressful situations. Experts know so little about the disease. Understandably, considering how few people have been diagnosed while they still have some quality of life left.
When a person is dealing with so many symptoms that have literally made them question their sanity at the even the best of times it is unlikely that they have enough fight to make sure the nearest learning hospitals get to take part in their treatment plan for educational purposes.
. Medical personnel will treat an Addisons sufferer like an addict seeking drugs or a junkie who hit bottom. Not because they think less of Addisons patients or the disease. It is literally because so little is known about it. As soon as someone thinks they understand the disease it changes.
If you love someone who has Addison’s disease you need to learn everything you can about it and how it has affected your loved one. All the way down to knowing which meds they take, where they keep them and how much they take. I learned how to tell when my sister wasn’t acting right, how to bully her until she took her cortisol, and how to give her epinephrine injection in an emergency. I did this because she wanted to travel home to visit with me for a week at the most and her symptoms were so sporadic and acute..
I have seen my sister through an ambulance ride where one EMT was so disrespectful and rude when I gave him very informative pamphlets about Addisons Disease. He literally threw them at me in my own home THEN called the police on me for calling him a bad word! – I got him fired.
I then watched the ED doctor treat my sister like she was stupid and had no idea of what she was talking about. Meanwhile we are telling him that you cannot talk to someone in adrenal crisis like they are giving testimony in court.. He literally told her he knows all about adrenal crisis and then asked her if she knows where her adrenal glands are….. She promptly asked to speak with the hospital lawyer and told him she will be leaving against medical advise and WILL NOT be signing the AMA document they chase you out the door with. This is the short version of the 2 times I advocated for my sister while she was in our hometown for a visit.
I am doing what I can to learn everything I can about this and other adrenal diseases where a crisis can mean 30 min. between life and death so that I can advocate for others.
This disease takes so much from a patient that they cannot stand up and match wits with doctors, nurses, and hospital lawyers while trying to get the URGENT care they need in time to live through the crisis. I want every person with Addisons to have someone with them at the hospital who knows their medical history, which meds they are on, how much they normally take, and their legal right to be administered that dosage en route to or at the emergency department, plus stand with them and speak on their behalf to any medical staff who would try to deprive them of their patient rights, human rights or maybe even their dignity & reputation.
I wanted people to see this so they may know how their loved ones desperately need them in their corner even if they don’t always understand or wish to be. I also wanted other people to see how ugly the simple lack of knowledge or understanding can be to a person who may not have the ability to explain it or even recognize their own crisis when they are in desperate need of medical attention within a very short amount of time.
Why does it take so.long to get a diagnoses for Addisons? They have told me several times I. Probably have it but. T he test never comes back positive
I continue to be diagnosed with Adrenal Insufficiency and take hydrocortisone daily. Any information would be appreciated. TY
Because there are so many causes for adrenal insufficiency it can take time to work out what type you have and why you have it. It is easy to say you have adrenal insufficiency but to work out the type you may need much more testing to be done from MRI scans for pituitary damage and other tests so it will take time. The important thing is to get treatment but it is frustrating not knowing the cause of your issue.
So you have to have damage to the pituitary? They found a mass an are telling me that it hasn’t grown im fine. But my dhea sulfate is 14. An i dont know what type of dr to go see
Thank you
No… you do not need pituitary damage to have Addisons Disease. Addisons is caused by failure of the adrenal glands. Pituitary damage can cause secondary adrenal insufficiency. If you have endocrine issues I would advise you see an endocrinologist.
I’ll be honest, i’d never heard of Addisons Disease until i started reading your blog so thanks for sharing this, it’s really helped me to better understand it. Sounds like such a life-limiting and debilitating condition to live with *hugs*. xxx.
Thanks Vikki. It can be tough but can be managed with the right medications support and things. I have my hubby with me most of the time and we live near the hospital just incase i collapse from my secondary adrenal insufficiency.
What a fantastically useful post for anyone suffering from Addisons, or who knows someone who is. It must be incredibly hard waiting for a diagnosis, as I’m guessing the symptoms might take a while to pin down, and then remembering how anything and everything (heat, exercise, illness) can affect you.
Thanks Cathy. It is hard to get a diagnosis and very hard to figure out what’s wrong. Sadly some people de before it is too late.
God bless you!!!
Did you find it necessary to go to a Naturopath to get a diagnosis or was it your PCP who helped you?
I was diagnosed by an Endocrinologist at the hospital.
I would like to thank you for putting this summary together. My wife has Addison’s and I have tried to explain to people what we are dealing with and your summary will help me. I still get emotional when trying to explain her condition to people so I am going print your article and share it with people.
My lovely wife has been dealing with Addison’s since 2012 and she has shown great resolve in taking care of herself and helping deal with not being able to “fix this” as I say.
Addison’s not only affects the person that has it but also the entire family because you have to learn to live a little differently and help monitor the person to aid in assuring their continued success with dealing with the disease.
Your welcome. It can be difficult explaining addisons. it is very complicated and one minute we can be fine and the next not. I’m pleased you are finding this useful.
This is really interesting. My mum’s dog had Addisons but I haven’t met a person yet although I am guessing the symptoms are similar. Very informative and useful. Thanks
Yes there are a lot of dogs that get Addisons. Lol It seems to be known more in the dog world lol
Such a great informative post – I was unaware of Addisons disease, thank you for raising awareness and highlighting this awful disease. Kaz x
Thanks. It is something that more people need to know about. ANgela
It has just clicked that you have addisons disease, I don’t know why I did not realize sooner as one of my friends has Addisons and gastropresis ( she has a pacemaker fitted) and is constantly going into crisis. She was diagnosed when she was 14 and is very unwell bless her x
Lol. Yes I have secondary adrenal Insufficiency and Addison’s is primary AI. Many of the symptoms are very similar.
There’s so many diseases out there that were never diagnosed before. So it’s important to get the information out there as much as possible
Yes thats true. There are tons of illnesses which people are unaware of and that can make diagnosis very difficult! For example i was told i had fibro or anxiety and it was all in my head- they finally worked it out but it took time.
Since reading your blog I’ve started to understand more about Addisions Desease but I had no idea you had to be so careful with the medication! It sounds as thought almost anything can lead to you having to adapt your steroids! It must be very hard to monitor and always in the back of your head, if I do this then the consequence is X. You are doing a great job at raising awareness and I hope that you get the adrinial pump you need xx
Thanks Clare. I’m pleased people are beginning to learn more about Addisons and Adrenal Insufficiency
I have heard of the disease but was never too sure what it affected, so thank you for sharing x
your welcome. Thanks fro stopping by and commenting. Angela
I was diagnosed with Addison’s in October of ’04 and was surprised when I googled it and could find almost no information pertaining to humans; almost all the info was about dogs!! I always love finding info about Addison’s in humans! Thank you for this article!
I would like to disagree with one fact though. Not all patients with Addison’s take fludro.
Thanks. i’m glad you found this and hope it was useful. Angela
My daughter is a veterinarian and I had an adrenal crisis after driving across country to see her…at that time I was undiagnosed but she looked at me and said, “If you were a dog I would say you were having an Addisonian crisis! Take some of your prednisone!” And I did, and when I got home my doctors said that was a good call, and I got an “official” diagnosis from a (human) endocrinologist. However, the fact that this condition is better known among veterinarians probably saved my life.
Oh sorry to hear that but glad she picked up on it for you and helped you.
Can you please tell me who gave you the pump and emergency injections? I have Addison’s even the doctor diagnosing me does not understand treating. I think I am his only case and he gets very frustrated. I am in need of a doctor with experience.
I’m in hospital right now but will try to respond when well.
Thank you for bringing awareness to Addisons. I have Addison’s disease as well as Hashimoto Hypothyroidism. I’ve had Hashimoto for 19 years and Addisons for 12 years. I too had a hard time finding information on either diseases. I too could only find information on dogs having the disease. I was originally diagnosed with hypothyroidism. I went in to see my doctor because I kept thinking I was pregnant. Then Several years later I started to loose weight, to the point of being skeletal. My skin turned an orange color and I had no energy. I went to a new doctor who just so happened to go to a conference where Addisons was discussed. Saved my life! Please keep sharing with the world the effects of this disease!! Thank you!!!
Your welcome and I hope your feeling well.
Hello,
I am so glad I found this blog! I was diagnosed with Addisons in 2015 and I just survived my first
Crisis.
Even when you do everything right, things can go incredibly wrong, incredibly fast.
My family is well versed with my medications and was able to speak for me , which made the ER staff move quickly.
Having this disease is so lonely because it’s so rare and meeting others is impossible.
So I am very grateful to have found you and your blog.
Oh nice to meet you and please do visit whenever you can. I hope my posts are useful!
my name is Judy adrenalin insufficientsey2013 one year in bed without knowing what was wrong now i have been diagnosed and taking hyson daily i also have hypothyrodism just reading this today has taught me so much i will keep following thanks so much
I hope you find it useful 🙂 Lovely to connect.
Hi Angela,
I’ve recently been diagnosed with secondary AI and I too have many of the problems that you describe so clearly. I’m waiting to go to Addenbrookes hospital in Cambridge as they are a centre of excellence for Addison’s. Most smaller general hospitals do not have enough experience of Addison’s patients as the illness is so rare. I don’t know if you are aware of the Addison’s Disease Self Help Group who are a support group and forum for Addison folk and families. They are full of experience and good advice including lots of literature written by eminent professors who specialise in this illness.
I hope you are more stable now and I hope to be after my appointment in May.
Best wishes. Margaret.x
Hello, Thanks for sharing, my husband was diagnosed in Dec. 2016, after almost dying. we knew he was sick for a while but in no way thought it was serious. His BP dropped to 70/40 after 3 days of vomiting. This is a note in my journal of his journey to help me remember things i might forget. Again Thanks for sharing
Thank you for sharing. I was diagnosed with viral meningitis in 1986 and ended up with Addison’s disease. With God’s grace, I truly appreciate each day I am blesses with..
My God bless y’all.
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