My husband was throwing up.  I threw up my evening dose of hydrocortisone (20mg), so my husband rang the GP’s After Hours service.  It was 7pm.  The after hours doctor refused to come out as he didn’t see the need.

It was so soon after my diagnosis I hadn’t ordered a MedicAlert.  I did have the ADSHG emergency letter, which I had found on the website.  My husband read it aloud to the GP over the phone.  But neither my endocrinologist nor my GP had issued me an emergency injection kit, even through I had requested one. 

Despite my husband’s protestations, the doctor was more concerned with my low blood sugar.  I've been diabetic for 27 years; I can cope perfectly well with low blood sugar, but at the moment not the Addison's.  He kept phoning up to check the blood sugars, but still wouldn't come out. I didn’t attempt to take any further medication. I didn't do my bedtime insulin or take my usual dose of Simvastatin. I drank lots of Ribena (and chucked it up again) to keep my blood sugar at a reasonable level

So both my husband and I spent the night with vomiting and diarrhoea. I was terribly tired, irritable, tearful and fuzzy headed as though my brain was wading through treacle.  I don't know if I felt like this as result of the sickness and diarrhoea, low blood sugar or an impending Addisonian crisis - or all three!

At 4am my husband asked the GP to "clarify the spelling of his name, so I get it right for the coroner" and he finally decided to send an ambulance to collect me and take me to A&E.

Off I went to A&E, clutching my emergency letter. The GP had not told them he was sending me.  They were slightly miffed that I was there just because I was being sick. A&E then decided that as they couldn't find my hospital notes, they wouldn't give me anything until they could speak to someone from Endocrinology. I pleaded and even begged.

By now I was more frightened than anything else.  I knew what I needed and couldn't understand why nobody would give it to me. Once I'd stopped throwing up at around 6am, I felt better.  I needed a wee and I was incredibly thirsty, but they wouldn't let me drink anything "until we've spoken to someone". 

So around 8am I got up to go to the loo and passed out on the floor. I came round, got myself to the toilet, had a drink from the tap in there - and passed out again. I then called for help.

Apparently my blood pressure was now dangerously low.  I was put on a trolley with my head pointing at the ground and my feet in the air and whizzed around to resuscitation.  I was then given a saline drip.  But I was told not to take my normal morning dose "until we've spoken to someone".

I thought there was a good chance that my body wouldn’t wait that long, so I ignored the staff and took my tablets (30mg hydrocortisone) when they were out of the room.   This is quite difficult without a drink, when you have been throwing up all night and have a horribly dry mouth. I immediately started to feel better.

At 11am someone turned up to give me some intravenous hydrocortisone and tell me that I should take my normal medication. I confessed that I had.

While I was in the hospital recovering from this bug I asked for an emergency injection kit.  A member of the endocrinology team told me: "We don't give those out in this country - they only do it in South Africa".  I knew from reading the ADSHG web site that it simply wasn't true, but at that stage I wasn't confident enough - or well enough - to argue. I think that all this would have been avoidable if I'd had an emergency injection kit at home. I feel nobody's that bothered, as long as I'm someone else's problem.

In retrospect, I should have taken someone - anyone - with me to the hospital. I suppose it was quite easy for the hospital staff to ignore the protestations of a slightly mad woman waving a piece of paper. My husband was still on the loo and throwing up when the ambulance came and our son, who had recovered, was asleep in bed.  So they couldn't come with me to the hospital. That's also why my husband didn't take me to hospital himself, earlier in the evening. My parents live fairly close by, and I wish I'd got one of them to come with me to fight my case.   But I suppose that's the benefit of hindsight.

Sue

September 2003

A Lucky Escape - The doctor's view

The treatment Sue received was not of an acceptable standard and she is lucky that her low blood pressure did not cause major complications including shock.  From my personal experience, it is unusual to come across a GP with such a cavalier attitude; the vast majority of GPs do know about Addison’s and the importance of hydrocortisone therapy.

A patient with Addison’s must never stop taking steroid medication under any circumstances. 

The medical advice Sue was given by A & E staff was not correct and could have been dangerous.  Fortunately she ignored their views and took her medication.

Sue also did the right thing in sipping Ribena through the night, despite her vomiting.  This fluid intake would have helped to lessen the effects of dehydration and thus to prevent a full Addisonian crisis. 

Sue is correct that it is always helpful for an Addison’s patient to take someone with them to hospital when they need emergency care.  An Addison’s patient easily becomes confused when they are close to crisis and often cannot explain their needs clearly.  If Sue had had an advocate to argue her case, she may have received the intravenous hydrocortisone she needed much more promptly.

Sue was also unfortunate that her illness occurred shortly after diagnosis, before she had time to get a MedicAlert.  A MedicAlert would have helped A & E staff to appreciate the need for prompt treatment with intravenous hydrocortisone.

Sue should have been given a steroid card by her pharmacy along with her first set of tablets.  Showing the A & E staff a steroid card would have helped them appreciate that she was potentially very seriously ill.

In general, the rules for treatment of vomiting are:

1.   Take 20mg hydrocortisone immediately after the first episode of vomiting

2.   Use your emergency injection of 100mg hydrocortisone immediately after the second episode of vomiting

3.   Then call your GP and request a home visit to monitor your condition.  When you call, remind the GP that you have Addison’s and are steroid-dependent.

4.   If you are extremely unwell and there is any doubt as to how quickly your GP can come and see you, ask them to arrange for you to go straight to Accident & Emergency.

5.   Always take a companion with you when you go to Accident & Emergency.  Your companion may need to explain your condition.  They should be ready to show medical staff your steroid card or MedicAlert tag, as well as your copy of the ADSHG emergency letter, and to insist that the instructions in the emergency letter are followed promptly.

If an Addison’s patient experiences repeated vomiting and, for any reason, does not have access to an emergency injection and proper medical care, they should make every attempt to keep oral medication down:

•       Swallow a hydrocortisone tablet immediately after vomiting, with just a small sip of water.   It is sometimes possible to keep a tablet down for longer when taken just after an episode of vomiting.  Within 15 minutes enough medication will have been absorbed to do you good.

•       If the hydrocortisone tablet is vomited up again within 15 minutes, then try placing a tablet under the tongue so it gradually dissolves in the mouth.  This will taste terrible, but should ensure that a little hydrocortisone is absorbed. 

•       Keep swallowing a tablet after each episode of vomiting.

•       Keep dissolving a tablet under the tongue between episodes of vomiting.

•       Keep sipping salted water, Diaralyte or a similar rehydration fluid.

John Wass

Professor of Endocrinology,

The Radcliffe Infirmary,

Oxford

UK