Possible to have an Addisonian crisis and recover without treatment?

Hormones
1

Hi,

Apologies for the wall of text, I thought I should give you some background as to why I'm posting here as well as the reason for my question.

I've been ill for almost a year now, with progressively worse symptoms. I've been passed from specialist to specialist, and it wasn't until I saw a neurologist last week and presented her with a list of symptoms (some of which I knew weren't neurological but I wanted her to have the full picture) that the possibility of Addison's Disease was raised. My mum and I looked it up when we got back to the car, and discovered that literally every symptom I have can be explained by it, even things I hadn't really paid much attention to like salt craving (I have been making my way through packets of Wotsits like you wouldn't believe, and each packet contains 5% of your RDA for salt) and often getting dizzy when I stand up (thought it was just because I find it hard to eat much - which is also a symptom!).

I had a moment of shock when I read about Addisonian crises, as in the summer I went on holiday with my partner. I got a stomach bug, as did she, but as she put it, "I was a bit sick. You were the sickest I have ever seen a human being." I know that if we hadn't been abroad she would probably have phoned an ambulance, as I was vomiting, passing in and out of consciousness, radiating heat (I often have fevers but this was in another league), and completely limp. One of the few things I remember from those four or so hours was that she phoned my mum and put the phone next to me on the floor (where I had ended up at some point). I was trying to tell my mum that I was floppy, and getting frustrated with her when she couldn't understand me. It wasn't until later that my partner told me that the words I was trying to say were not making it out of my mouth intact.

My girlfriend was trying to get me to drink some of those hydration sachets in water. I think some of it stayed down, and after about four hours I was slightly more conscious. I then promptly fell asleep for quite a long time, utterly exhausted.

So, after all the background, I have one question. Is it possible to recover from an Addisonian crisis with the only intervention being a small amount of rehydration, and not in hospital? I'm sure I did have a bug in the first place, as my partner also got ill, but I started going downhill very quickly after I first vomited. I had an upset stomach first, but didn't start to feel really awful until a little while after I actually threw up. Or would I be dead by now if it was a crisis? (Sorry for the bluntness, I just didn't know any better way to phrase it.)

Thanks to anyone who gets all the way through that dense bit of writing, and I hope you can help me out.

P.S. Because the neurologist was in a different area from where I live, she needs to tell her suspicions to rheumatology, who I've been under due to my joint pain, and they need to make a referral, so I have no idea how long I'll have to wait for the blood test. Just in case anyone is wondering why I'm posting without having been diagnosed. I just want to get things straight in my head.

2

Hi Juliapeel,

1. When/if your adrenals are basically dying, that's when you are diagnosed with Addidons Disease.

The glands start declined in function (outter ring) until they cease to function. When it's found that this occurring you will be started on hormone replacement. Your gland could very well be doing just this, but there must still be some function/output or you would have died. That is why they call it Crisis.

Example: When I have a crisis, unless I have steroid replacement, I'm dead.

You would go into a coma and not wake up. The only revival method is through steroid/cortisol medication injection.

2. When the process occurs you will feel as follows:

Weaker and weaker

Your strength declines

Light headed

Hard to concentrate

Hyper pigmentation- knees, elbows, look at the lines in hands go dark

Nauseous

Weight loss

In a nutshell - It feels the life is being drained from you.

I hope this helps.

I've had Addison's for 24 years.

Take Care

Darlene

3

Hi Julia

Ditto Darlene. An Addisonian Crisis is final. When I went in to hospital and was stared on Hydrocortisone and (as we call it here) Fludrcortisone I was out and about almost immediately. In fact, as they had given me boosts of Hydrocortisone, I was going around looking for things to do. Why not just buy some Hydrocortisone over the counter, if you are able to in the states, and try it? My regular dose is 20mgs in the morning (there, just taken it) and 10mgs in the evening after dinner. However, it is the Fludrcortisone which increases your blood pressure. I take 50 microgrammes. It is a very powerful drug. I guess you are less likely to be able to buy it over the counter?

4

You don,t need to go in hospital when you have a crisis. What you need is a minimum injection of 100ml of Hydrocortisone, may be more depending on the severity of y condition. Without that or a triple dose of your normal tablets it will take a v long-time to recover.

Best wishes

John

5

Hello Julia,

What a frightening experience and one I can empathise with. And don't worry about the length of your email: it was clear and thorough.

I was diagnosed with Addison's summer, 2015 after three years of steadily deteriorating symptoms just as you've described. The first synacthen test, in 2012, was negative, though my potassium levels were high and sodium consistently very low. I was referred to Rheumatology for possible Sjogren's Syndrome: dryness everywhere, particulalry eyes and mouth – all consistent with Addison's, apparently. The fatigue was profound and the most debiliating symptom. Finally, an excellent rheumatologist discovered that my cortisone levels were low, referred me to an endochrinologist and after a second synacthen test came diagnosis and treatment.

I think it's absolutely essential, in the light of your stomach bug, that you get your synacthen test urgently. Could your rheumatologist speed things up perhaps? It's also vital that you discuss your stomach bug symptoms – vomiting, diarrhoea, fainting etc as it's all possible evidence for AD. Recently I had a similar attack and because I'm already on hydrocortisone was able to take an extra 10 mg immediately. I fell into a long sleep and felt better in the morning, though completely wiped out. I'd also had plenty of water. But it's too much of a risk to assume that just rehydrating will cure everything. Addisonian crisis is very serious and can be fatal if not treated with cortisone asap. 

I do hope this is of some help.

Good luck,

Miriam Hancock

All my info comes from the excellent website: addisons.org.uk

But really you need to see a specialist.

 

6

I dont know much about addisons but there a few great facebook groups 

7

Hi Darlene, thanks for your reply.

I see what you mean. So, I could have low enough function to have all of my symptoms, and to have been hit very hard by my tummy bug symptoms, but still have enough left that my body could pull itself back out of what was definitely not a good situation.

I've definitely been getting more and more fatigued. I've also lost over four stone in 15 months, although the rate has thankfully slowed for the past four or five - I think it's because the fairly small amount I can eat is managing to give me enough energy now that I can't do much physically. I have had a lot of muscle wasting, which obviouslt doesn't help with my weakness, and I've had nausea most mornings since about May (my inital symptoms started in December last year) and often late at night as well.

I have patches of darker skin that have been becoming more and more numerous since March (it was actually my partner who noticed the first one, we didn't tie it to other ones until around July).

I understand better now what's meant by crisis.

8

Hi patlon,

I'm in the UK, and as much as I would like to go find something that might work I would be very reluctant to take anything prior to having blood tests, in case it interfered with the results.

Thank you for replying :-)

9

Hi John,

I feel like Darlene's comment above about how my adrenal function could be declining but not gone is probably the case. I don't have a diagnosis or tablets yet, unfortunately, but your informations is still useful - thank you!

I was pretty wiped out for the rest of the holiday. My mum said I'm the only person she knows who can go on an all-inclusive holiday and lose weight.

10

Hi Miriam, thank you for replying.

I haven't heard from Rheumatology since seeing the neurologist. I'm not sure how long I should leave it before I phone to ask when I'll be seeing someone. It's been a week so far.

I didn't actually mention the stomach bug symptoms to the neurologist when I saw her - it hadn't crossed my mind that it could be important.

I was actually getting a very dry mouth back at the beginning of the year, and I often have quite dry eyes.

I've been ill for nearly a year now, I can't imagine how soul-destroying it must be to have no answers for three whole years.

It might sound weird (although you'll probably understand where I'm coming from) but at this stage I'm almost hoping it's Addisons, just because nothing else that's been queried fits my symptoms so well, and as well as having a (fairly) straightforward treatment plan (I don't mean easy, but there are medications that help), I would finally know what's wrong with me, and when you know you can actually deal with it instead of just wondering.

11

Hi Jazzyanne, I'll have a look, although I'd imagine most of them probably prefer somene who's been diagnosed already.

12

Yes, that's exactly how I felt when I was finally diagnosed. It is a relief to know that there is an explanation for symptoms that are clearly not just imagined. I do hope you have some progress very soon. Maybe rheumatology or your GP need to know about your stomach bug and how you reacted to it.

Something will reveal itself before long, I hope.

All the best, Miriam

13

Julia

Hi, me again. Further to subsequent discussion, a few days before I had my Addisions crisis, I was mis-diagnosed by a locum GP has having viral gastritis. Clearly, my symptoms were a bad stomach. However, it has always seemed to me that the most 'unique' symptom of Addisons is the dark skin, particularly on the upper body. Whilst I was being treated in hospital, they took photos of my upper body to use for training purposes. In the weeks before my crisis I compared the skin on my forearm with that of the local pakistani shopkeeper and my skin was darker! This skin darkening came on gradually as did the lowering blood pressure. Towards the end, I could not even sit upright in a chair, I had to lie horizontally. I would insist on an ACTH test, if I were you.

14

Hi patlon,

Can I ask, when your skin was darkening, was it the same texture as the surrounding skin, just darker, or was it different at all?

I think I might phone Rheumatology on Monday afternoon to ask about when I'll be getting an appointment, I'm finding differing opinions on what the recommended minimum timeline for referral is.

15

The skin was just darker. It was not patches of dark skin, but whole areas. I was told that the darkening is caused by the fact that 12 consecutive molecules of the (excess) ACTH interact with the melanin in the skin and make it the skin dark. So, it is purely a change in colour, not any other 'disfigurement. This also means that any 'scars' or similar show up 'white' because, for whatever reason, they are not effected.

16

This is interesting as you sound a lot like me! I had a weird collapse last year where my blood pressure dropped to 55 over something, recovered magically after steroid injection and they never found out why because my morning cortisol was ok. I wonder whether it is in the process of failing. But I too have been really weak and dizzy for a year (I passed out after walking half a mile) and can hardly walk anywhere as I feel faint when I stand up or walk along, I have 'morning sickness' where I vomit all morning (not pregnant) and am always thirsty and I have muscle cramps. I've always craved salty food. I don't have the hyperpigmentation though. I was completely normal til a year ago and now I'm a non working sofa dwelling retching mess!! Hope we get it sorted soon - good luck.