Just diagnosed with Addison's. How do I recognise a "crisis"?

Hormones
1

I am hoping someone can explain to me how to recognise an adrenal crisis and how to deal with it?

I have just been diagnosed with Addison's Disease. I am 26 and it came as a bit of a shock as every specialist I have seen over the last 2 years put my fever, stomach pain etc down to gall stones and removed my gall bladder. But the symptoms continued. I have been very ill over the last couple of years, so this news was bitter sweet as it was a relief to finally have a diagnosis. I was started on 20mg of Hydrocortisone a day, but still have horrible relapses often which consists of a terrible pain in my stomach, low blood pressure (resulting in fainting), loss of appetite, nausea/vomiting and everything else that comes with it.

My question is how do I know if I am having an adrenal crisis?? If I went into hospital every time I had an episode I would practically live there. When should I seriously consider seeking medical help when I'm ill? Reading up about it on the internet terrifies me as it makes it clear that a crisis can lead to coma or death! Also, when will the Hydrocortisone start making me feel better? I'm waiting to start my new job but I'm worried I will be constantly off sick and it makes me so anxious.

Would like to get back to being a normal 26 year old and as I just got married, I'm feeling a lot of pressure to get back to normal for my Husbands sake too. Right now he has a wife who spends way to much time sleeping or at the doctors.

Apologies for the long discussion! Just wanted to give as much info as possible so I can hopefully get any advice from someone

Thank you.

2

Hi,

I have had Addisons disease for 29 years now (now 50). Pre-diagnosis (which took about 5 months) I was very ill with repeating adrenal crisis'. Was submitted to hospital with vomiting, dehydration, low blood pressure, dizzyness and even an inability to speak coherently. First was ill in Spain and was in a right state, renal failure and swelling of heart, was flown back by medics. Thats the end of the horror story. Once diagnosed and prescribed Hydrocortisone and Fludrocortisone I have been really very well (and very quickly), never really terribly ill. Had one episode (7 yrs ago) that my Specialist reckons was a minor crisis, vomiting, flu type symptoms (maybe thats what it was though, nothing like I was pre-diagnosis). I never need time off work and the Addisons never causes any real probs.....The future is bright. Hope you have a syringe and viall of hydrocortisone, for if required when unable to take the tabs!! I got one.....never used it. Good luck

3

Hi

Like Sean, I have had Addisons for over 20 years. In principle, once diagnosed, and not everybody is diagnosed in sufficent time, you should have no more crises. I was once given a syringe but never used it. You would only need one if anticipating go somewhere alone and dangerous. That is, in case you have a trauma. However, if you had a road accident, and you carry a medic alert, the paramedics should know to give you a Hydrocortisone boost. The other 'traumas' I have experienced are 'simply' flu or similar bad viruses and you will only recover slowly unless you have a Hydrocortisone boost, typically 100mgs. On one occasion I simply ordered the doctor to bring me such!

You do not mention Fludrocortisone, though Sean does. I started out on 100 micro grammes, but am now on either 0 or 25. this is because I measure my blood pressure every day and keep a runing average of same in a spreadsheet. I endeavour to keep the latter between 100 and 120 Systolic. My average today is 118.1 and I am taking 25 microgrammes. As soon as the average exceeds 120, I will drop to zero. Note that I don't change from day to day as there is natural variation in the blood pressure, so base my decision on the average and this changes more 'smoothly' and steadily. I can attach a graph if you would like to see it.

4

Hi

like you I am new to the adrenal crisis, and only been placed on hydrocortisone tablets, but at the moment they are having trouble finding a correct dose for me. Which is meaning a few trips to hospital to be topped up with the injection and fluids, which the keep me going but it always feels like you've been kicked in the stomach for a couple of days after. The way I seem to be able to tell that I am going into crisis my legs start to shake, which I am unable to stop or get control of, I also turn hot and cold very quickly as well as the usual systoms you have been experiencing. 

Like me you I would like to know more about how to control this better and get to grips with this, but my test results are extremely low not even reaching 20 on a 9 am blood test! 

Has any one had any issues with the side effects of the medications, if so any tips how to deal with them? My ankles seem to like the water retention and aiding weight gain?

5

I think you may be asking yourself the wrong question. The key point is surely how can I avoid a crisis since, as sure as eggs are eggs, you will get one over the years and generally you will know when you are having one. Think back to the worst days of your illness before diagnosis and I expect you will feel like that i.e. like death warmed up.

1. Avoid infections if at all poss. I know that sounds simple but it is so easy to  get a gastric bug eating the wrong things e.g. on holiday abroad

2. Carry your Steroid card at all times, since if you are knocked down by a car you won't know you are having a crisis but the medics will need to know. 

3. If you are getting obvious signs of an infection e.g. the flu, make sure you double/triple your daily dose of Hydrocortisone straight away and keep it at that level until you feel well.

Also;

4. You should be going at least yearly for a proper check up in an Endocrinology Dept

5. Make sure your partner/v close friends know of your condition and that you might need special medical assistance in certain situations.

I was diagnosed with Addison's in Nov 1965 so in 50 years I've had a few crises. Incidentally, at that time Cortisone Replacement Therapy was relatively new and when I asked about future life expectancy I didn't get a v clear answer from the Consultant, though he did tell me that I shouldn't worry as President Kennedy had Addison's!

As this was to do with 'hormones' I asked about the effect on my sex life; I can confirm that there wasn't any (effect).

1. Asian Flu 1970 - I didn't understand the need to increase my dose of (then) Prednisone

2. Mexico 2006/Turkey2014 Gastro-enteritis brought on by eating prawns/chicken in the wrong places.

3 UK 1997 Ear infection Went from being OK to a nil reading for BP in 4 hours after which my wife had to virtualy knock the Doctors heads together as they were unsure of  what to do.

I notice that a couple of people appear still to be having problems after diagnosis. I can only say that for me, starting on Prednisone, was a miracle cure. I am 6' 2" tall and normally weighed 85kilos and was a fit young man; at the nadir I weighed 58 kilos and had a BP of 80/50. Once on the new tablets I was up & about after 3 days and home a week later and my weight went up to 100kilos too quickly, such that some friends/workmates did not recognise me.