Addison's disease/adrenal insufficiency

[cobaltblue27]

Hi,

After being very well last autumn (ended up in intensive care after getting a urine infection...), and many many tests, we have found out that I have Addison's disease, and autoimmune condition where the body attacks the adrenal gland, eventually leaving you with no adrenal response. This is pretty scary, as I will be steroid-dependent for life, and I have an elevated chance of developing other autoimmune conditions.

Anyone else out there? Would love to hear any reassurance that I will manage this.

These people will help you.

www.addisons.org.uk/

I've had addisons for 16 years after having cushings.
It's not to bad apart from the crisis which come on so quick.
Just had a crisis last Wednesday after having a urine infection ,
Went to bed fine Tuesday night woke up on the middle of the night in full crisis.'By the time dr came at 10am blood pressure was dangerously low.
I've been on double steroids since.
Make sure you always have an emergency injection at home just incase.
Don't worry though the majority of the time I don't know I have it.

Can I highjack slightly and ask for advice ?

My son is going to America for a 2 week holiday with 3 friends ,one of whom was dx with Addisons 12 months ago .

They're all in the early 20's and I'm worried about the effect of stress from travelling ,heat ,holiday madness ( my son doesn't drink but the others do ) on the Addisons disease sufferer .And whether they will be prepared if she becomes ill .

Is it mainly infections that can bring on a crisis ? Or would jetlag etc make one prone ? What should her friends look out for ,do if she becomes ill ?

My son is doing all the planning and organising and after months of nagging about health insurance and vague replies I've texted girl's father .Who thanked me and said he'd speak to daughter and monitor insurance stuff .

Any advice ?

Hi Ginger, So sorry for the delay in response. With regard to your son's friend, I'm relatively new to this but from what I understand the risks of an adrenal crisis are associated with infections, particularly vomiting bugs. Your son's friend should have an emergency injection and should have been well-informed with regard to what to do with his steroid doses in the event of illness. There are something called the 'Sick Day Rules' which give guidance with regard to what to do with medication in the event of fever/certain illnesses. I found this site really helpful: www.imperialendo.com/for-doctors/hydrocortisone-replacement/hydrocortisone-replacement-patient-information. In the U.S. there should be good access to hospital care, but encourage the friend to take a doctor's letter and prescriptions, and to take all medication in hand luggage!

Olliecollie thanks so much for your response. It was cystitis which gave me my first adrenal crisis so I know how quickly it happened. How many crises have you had? I'm glad to know that most of the time you have had no problems with it. It is all quite scary! Have you had any children since diagnosis? I really want to have a second child (had always dreamt of three) and now a little freaked out about the whole thing and whether I'll be able to or not. X

Thank you cobalt that's really helpful .

The holidaymakers are in their early 20's - old enough to be arranging stuff well out of my micro managing reach but inexperienced enough to make me anxious .

Not a good combination for my mental health !

The girl with Addisons has now developed water retention - in her leg joints ? ,legs and feet are very swollen .I think her docs are trying to work out why .

They travel in June ...

My mum has had Addison's disease for 50 yrs this year , she was very ill when diagnosed and has had a few addisons related problems over the years but on the whole it's easy to manage , you just need to work out how much you need to increase your steroids when you are ill etc .

I don't have Addisons but my pituitary gland does not send the right signal for me to produce any cortisol, so am also steroid dependent. On a day to day basis it is fine, but I do really worry about having a crisis and not knowing what to do, as I was only diagnosed in the last couple of years.

Ginger, the girl may need to increase her steroid dose on the flights to account for the time difference - I had to take mine more frequently on a recent long haul trip.

Thanks floral and wilderness for your input. Sorry to hear wilderness about the secondary adrenal failure (? Think that's it?) but glad to hear you manage it ok. It all feels quite unknown to me at the moment. I'm trying to tell myself that I'm safer now than I was before my intensive care trip, and that because we know what we're facing it should be less likely that I'll go through that again, but nonetheless would be nicer not to have it!

Floral-did your mother have children after she was diagnosed? Very keen to hear any positive stories about childbearing/fertility. Doctors say it is possible, I'll just need a lot of extra monitoring. X

She got it almost immediately after having me ( last child) so no ,but back in those days it was extremely rare and she was seriously ill for months in hospital before a diagnosis was made .

Reviving this thread as coincidentally after being very unwell since early May I have just received my diagnosis of Addison's disease . May sound weird but we are having a big celebration in here this afternoon it's such a relief after a completely shit year where I've been more or less housebound . Just need to get the doses correct and my ridiculously low blood pressure under control so that I can drive and walk about and then I can crack on with my life !