Adrenal Insufficiency. The truth, the whole truth and nothing but the truth

 

 

 

So you or your loved one have been diagnosed with Adrenal insufficiency?

 I guess i am correct or you wouldn't be here, feeling the way you are, tapping away at google desperately trying to make sense of it all.

This was me two years ago and I wish I could have read this then.

So you are looking for answers? Feeling like your world is collapsing around you? You can't breathe or sleep for worrying and have no idea what the future holds.

I also guess you have googled this thing a thousand times right? And you now feel even more scared? Because absolutely nothing is making sense?

Let me guess too that information from your doctor has not been forthcoming? The whole world seems oblivious to you and your new diagnosis and to be truthful you have never heard of it either?

STOP PLEASE STOP! Take a breath, and let’s go through this together.

Yes this is a life threatening disorder, but it is all going to be ok.

I write to you as a Mum, so the subject here is the most important thing in my life, my daughter.

I relay this to you with of the utmost importance to me, and I want you to know from the beginning, you are not alone.

Adrenal insufficiency is caused by many different health conditions.

It may be that you or your loved one has had to go through some quite horrific tests to get here, or you have been long awaiting a diagnosis. Sadly, this is often the case.

What in heaven’s name is it?

Adrenal insufficiency means that the body does not produce enough of the stress hormone called cortisol. Cortisol is a steroid and one of the only hormones in the body needed daily to survive. Our bodies steadily produce it, day and night, and also give us a rush of cortisol when we are stressed. You cannot live without it. Simple.

As you are aware, being a human and all that, stress happens to us ALL of the time! 

For example, in times of trauma such as a car accident.

 A fright is another example i.e. stepping off of a pavement not realising a car is coming.  Even emotional stress sends that cortisol racing! We as human beings all have the fight or flight mechanism inside us (a rush of cortisol and adrenaline) which prepares us to fight or flee. 

People with adrenal insufficiency do not have this cortisol rush, so if they are in a car accident (or any type of severe trauma) they need an emergency cortisol injection. You know, to replace what they do not have.

Please insure incidentally that you are prescribed this kit by a doctor. 

 It is a life saving medication and needs to be given within 30 minutes of a severe trauma to prevent adrenal crisis, which can lead to death.

Everyone with adrenal insufficiency MUST have this injection kit.

 If you have been told you do not need it, please contact another endocrinologist because this advice is not acceptable or correct. 

In my experiences (of which there are many) medical care and knowledge of this disorder varies widely. 

Even if you read no more of this, just always be your own advocate.

Other times, you will need an emergency injection when you have severe diarrhoea/vomiting and you cannot absorb your oral medication.

Always be sure to call the emergency services if you have had the injection, you will need to be monitored in hospital.

Other forms of stress dosing are in times of illness, when medication is doubled.

Medical advice is important, so always check with your doctor for your individual needs.

I will leave links to support websites who have medical teams that can help you.

The Pituitary Foundation has endocrine nurses available to speak to if you are finding it difficult to speak to those who have been appointed to you.

There are different types of adrenal insufficiency, primary and secondary. This also confused me a lot because people kept mentioning Addison’s disease. 

My daughter’s condition is hypopituritsm, which causes secondary adrenal insufficiency. This means that her adrenal glands do work, but are not told to by the pituitary gland her brain.

Upon this discovery we tried to simplify it for her. We explained it as signalling problems.

For example: if she sent a letter from her brain (the post box) to her adrenal glands (granny's house), it would not get there.

This meant she would have to take replacement medication so that her body worked in the way it should. Just a small tip if explaining it to a child.

Primary Adrenal insufficiency is different.

This happens when the adrenal glands do not work, for example in Addison's disease

Both have very different causes, but steroid replacement medication is the same.

To you and I the doses along with the chopping up of small tablets 4 times a day in order for your child to survive may seem quite unscientific for such a serious condition.

You would be right to assume this and you are not going mad, to be brutally honest with you I cannot dress this up. You have to be aware that medical science has not progressed in this area due to the rareness of the condition. Hence, my advice to always be your own advocate.

It is rare, but the over use of corticoids/steroids is actually  causing a growing number of people to develop the condition.

Your body stops producing its own because it’s been oversubscribed.

Another huge thing I have learned:

Make sure you or your loved one have optimum steroid replacement. You can do this by having 24 hour profiles done in hospital to make sure steroid dosage is as good as it should be. And that your body is absorbing the correct dosage at the correct times.

This will make living with this a bit safer and symptoms will be more controlled.

Why do I spend my life raising awareness and support? 

Because Molly has been worn down by this.

14 years without diagnosis has made her very weak and poorly. Her body could simply not cope without medication any longer. Had she been diagnosed as a baby she would be relatively healthy now.

She would have gone through school, had her prom, had a good education, and had many friends. She would be at college now, working toward her future.

Instead she is in a wheelchair, her chest scarred from all of the lung infections.

She is allergic to 4 types of antibiotics, she is a chronic asthmatic, and she has a fatty liver and is dangerously over weight. 

She cries every night in pain. I have seen her go from a tiny little girl full of energy (albeit in the breaks from illness), to this poorly 17 year old who cannot even walk let alone go to school or have any social life.

People see this and say to me "why do you focus on Molly's adrenal insufficiency and not all the other problems she faces?"

I say blimey, give me a chance, this battle has to be conquered first!

I am starting here and working my way down....( I expect to live a very long time).

Molly's condition also causes no thyroid function (bad enough in itself), no growth hormone production, and she now has severe ME, making her wheelchair bound.

To add to that (if that's not bad enough), she also has a very low immune system and catches every virus going, which often ends her up in the hospital. 

My serious answer to the question?  I concentrate on this one problem because Adrenal insufficiency is the only thing i fear could take her away from me. And I’m scared.

It needs to be fully understood.

There needs to be a worldwide protocol for emergencies.

Doctors need to be made more aware of this so diagnosis can be made quickly and safely before, as in some cases, it is too late. 

Research needs to happen to make people safer, medication and the use of pumps and slow release drugs need to be made available.

I liken it to a person at risk of anaphylactic shock because of a peanut allergy not being given an epipen, or an asthmatic not being given an inhaler.

It has been well documented that people with adrenal insufficiency suffer poor quality of life. 

This is because Medication has not improved in 50 years, and this is why we need to make a change; better education and shouting about this until we are heard will work.

Ok, so enough of the scary stuff. Please don't despair, we all now know the risks, you cannot dress this up or play it down, it is serious.

 We all know it is important to maintain a high understanding of this condition and how to care for someone with it.

Now for the other side of this, what I said about not feeling alone. The AI patient family and friend community is huge!

With such a serious condition which seems to be swept under the carpet, as you can imagine it often raises many questions.

As I said, there are many different causes for adrenal insufficiency so there are many different support groups.

I felt so alone when Molly was diagnosed. After all of the years she has been poorly, when she was finally diagnosed I thought she would get better.

I've never been one for asking for help or doing much in the way of protesting, but when I started to unravel the unbelievably sparse world of medication I now seem to live in I knew I had to do something!

Surely now we know what is wrong with Moll she should have the best chance at living. I tried to change things by way of petitioning for a quick injection pen.

You may have noticed your injection kit is Victorian to say the least.

A one shot quick pen is desperately needed to ensure the safety of AI patients. It’s a life saving medication for goodness sake!

This campaign was amazing!!  Within weeks we had thousands of signatures. The progress in this development is good now and we had 10,000 signatures in just one year.

This campaign bought me my first new totally understanding friend Natalie! She has 2 small children each with adrenal insufficiency. She introduced me to do many mums and others who suffered with this. I have so many friends now all over the world, we share good times and bad, and I class them as family.

We vent, share questions, support each other, and give each other advice... One day I was really worried about Moll. Probably a year or so ago, when I was not as knowing about these things as I am now, I put a question out to all of my AI mummy's in one of the groups, worried and with nervous tummy ache myself .Within minutes I had a barrage of  friendly caring answers and advice.

 You will find that every parent is an expert.

 Molly often says oh god mum are you discussing my poo again on the internet? I always laugh and say yes! Yes I am! 

We, all of us mummies and daddies, friends and relations, are a very solid unit and are always there for each other. 

It’s great; seriously, I thought I had found all the friends I needed in my life but really I have so many more now! And I'm sure, in fact I know, they will be lifelong friends. Because we are all in the same boat, we all love someone with the same thing, we all want them to have the best care and to be the safest they can be. 

 We will always make it our priority to make this happen, there is no more powerful love than a parent for their child. And that is why we will win.

Molly too has many more friends now but with the same problems, so it is much easier for her to understand.

Yes that's it! That’s what I really need to tell you...

Things may not be perfect; you may be worried about current medications, awareness and management of the whole condition, but please be aware there are a lot of people out there working very very hard to change things . 

Just please look after yourselves, join our groups; you will learn so much. We are all normal people in normal families with just this extra thing in common. 

Always advocate for yourself or your loved one, and together we can make the scary world of Adrenal insufficiency a better one.

At least I suppose if you stick to the rules according to dosing and emergencies, you can manage this thing. 

One day the time will come where AI is as recognisable as diabetes (I mean diabetes had to start somewhere. That too was once an unknown condition with no real advances).

Now we have diabetes pumps, level checkers, and massive awareness; “type 1” and “type 2” is a commonly known description.

Maybe “primary” and “secondary” Adrenal insufficiency will be too one day. Hear the ring? 

And maybe we too will have massive awareness campaigns and a charity which is in every supermarket in the UK raising money for research. 

For now though join in our Molly's picnics as the adrenal insufficiency awareness day! 

We are in to our 3rd this year, last year we held well over 100 picnics all across the world.

So yes! You are not alone! 

I myself was utterly devastated by the crushing truth that my precious little girl has been diagnosed with a lifelong and life threatening condition I did not understand; I felt absolutely shattered, not really giving a fig about anything else at all.

Two years later, I finally realised that while this is true, I cannot live in fear of this, I cannot wrap her up in cotton wool; her risk is more than anyone else's yes, but we all take risks every day.

It is risky just driving down my lane on football Saturday, but that's life! We just need to look out for our loved ones with this condition, and care for them a bit more.

Nothing has changed; they are still the same person they always were! But with an extra sprinkle of gold dust which we need to keep an eye on.

If you would like more information on adrenal insufficiency, please check out Molly's awareness page link below, where I have listed some amazingly resourceful websites.

The Pituitary Foundation in particular have an endocrine nurse you can call if you need advice.

Many thanks for reading this, I hope it has helped.

Please feel free to contact me so that I can put you in touch with the amazing groups I have found and the beautiful new friends I have.

Much love to you, stay safe and one day we and the world will change this thing.

Rachel- Molly’s Mum and warrior dedicated to making this better.

https://www.facebook.com/rachelpeglersavinglivesforsterioddependants/ 

 http://themighty.com/2016/04/adrenal-insufficiency-what-to-know-if-you-just-googled-the-diagnosis/