There was a prompt ambulance response and good recognition of her medical needs from both the ambulance crew and the emergency medical unit. Registering her condition with the ambulance service made all the difference.
My mystery condition
I am 48 years old and I live alone. I was diagnosed with Addison’s less than a year ago, after losing 28 kilos (4 stone 7 pounds) and being “ill” for what seemed like forever. I was aware that if I got something minor like a cold or sore throat, I was so unwell that I couldn’t make it to work, when other colleagues could. I felt I was letting myself and other people down. I’m a teacher so it’s not good for the children if you’re ill all the time. I went to the doctor and was given a range of medicines and tests. Nothing was diagnosed.
A scary diagnosis
I really began to worry when I lost my appetite. I was getting palpitations and felt unsteady when I stood up. Things came to a head during preparations for my daughter’s wedding; I fainted while having a harp lesson. I continued to faint throughout that day and realised I should see a doctor. The GP referred me to the medical assessment unit, where I was admitted for telemetry. This sounded scary but I later found out it was simply a means of studying the way my heart was functioning. I continued to faint and my blood pressure was extremely low. After a week of tests on my heart the hospital was going to send me home but I insisted I wasn’t going until my blood pressure improved. After a further week, and much discussion, the doctors decided it might be something rare - but I wasn’t told what. They said I was going to have a special blood test and that the test was very expensive. A nurse came first thing in the morning, injected something then took blood an hour later. The same nurse came back the following day and again injected something, then took a series of blood tests at hourly intervals. The next day I was transferred to the endocrine department where I was prescribed hydrocortisone and fludrocortisone. I still was not told what was wrong with me. I had to look the drugs up on the internet to find out what it was: adrenal insufficiency/Addison’s. I was so scared.
My unstable condition
I was very poorly at this stage but was glad that I was now being treated with the correct drugs. I remained in hospital for a further 10 days with the bed tilted and full length surgical stockings to help with the postural drops I was experiencing. Eventually I did make it home, large bag of medicines in hand. Even more scared. I’m useless at taking medicine, so faced with tablets for life I was concerned. I made a tick list and boxed my meds for the week. Ten months later and it’s second nature now. Since my initial visit to hospital I’ve been admitted several times and have become practiced at giving myself an intramuscular injection of hydrocortisone at home.
Despite a lot of medical attention, my Addison’s remains unstable. Along the way, I have been diagnosed with kidney stones after several bouts of acute pain and vomiting. When I am about to go into an Addison’s crisis, I get the tell-tale headache, vomiting and collapse - that’s when I know I need intravenous hydrocortisone with fluids and can’t manage it myself. I have an amazing group of GP’s who do everything in their power to keep me out of hospital. They have even had my endocrinologist to a staff meeting to discuss my treatment. There is an alert on my notes at the GP’s, so I can always get an immediate appointment. The same cannot be said of my local A & E department.
A nasty gastric bug
When I picked up a gastric bug recently, I was so poorly with diarrhoea and vomiting that I collapsed several times in one morning. My parents and daughter were away and I had to ring 999 for an ambulance. In retrospect, I almost wish I hadn’t bothered. After a super visit to the same hospital earlier in the month to have minor operation, I find it hard to understand how I experienced such a bad time in Accident & Emergency.
Background: Monday severe diarrhoea, then vomiting. I visited the GP, wanting to stay out of hospital, so she gave me extra intramuscular hydrocortisone for self-injection in case I continued being sick. But she told me to go immediately to hospital if the diarrhoea and vomiting didn’t settle. The vomiting settled, so I thought I was okay. On the Saturday, vomiting started again, plus the tell-tale headache and I collapsed on several occasions. I live alone, so I rang 999 and asked for an ambulance.
The ambulance response
The first responder took over an hour to arrive. He phoned for an ambulance, which took a further half hour to come. The ambulance man knew nothing of Addisonian crisis and told me I should not have rung 999 but instead should have rung the emergency doctor to arrange admission to hospital. I was confused and drowsy and unable to stand without help. He made me cry. He eventually looked at the ADSHG emergency letter in my hall - then apologised and told me to ring 999 whenever I needed.
A trolley queue at A & E
In the ambulance he did warn me there was a queue in A & E. A queue was an understatement: my trolley was just inside the door and the trolleys queued all around three sides of the department. It took me over an hour to get to the front of the queue to see a doctor. She agreed I was possibly on the way to Addisonian crisis and prescribed intravenous hydrocortisone and fluids, cyclizine and painkillers. Result! I thought … silly me. I was whisked off to x-ray then put at the end of the trolley queue again. I kept asking for my meds but there was no nurse to be seen. I asked every ambulance person who walked passed - I was like a nagging woman. An hour and half later a nurse came to tell me I couldn’t have meds in the corridor and would have to wait till there was a cubicle available. I eventually managed to grab the doctor as she was passing and she was amazed that two hours after her prescribing the meds I hadn’t had any. I was promised the next available cubicle.
Half an hour later the ambulance men pushed me to a cubicle then transferred me to a trolley. All I could think was my meds - silly me again. The trolley wasn’t actually empty, some poorly old man had got off it to go to the toilet on a commode. He was pushed back as the trolley sides were being put up. A massive row ensued between the ambulance men and two nurses. Bottom line, the ambulance men walked off saying they’d done as they were told, two nurses continued to argue. I’m lying on a cross-contaminated bed and the old guy is still on the commode. It was eventually decided I should stay on the trolley and the old guy on the commode until another trolley became available. He was on the commode for over an hour.
Dog eats dog
I was feeling so awful but it seemed like dog eat dog. I did get my meds and within an hour I felt much better. The doctors decided I should stay overnight, just to make sure. After a few more hours they moved me to a second cubicle that was tiny, no windows, and they kept shutting the door. It was awful. No one came to see me for hours - if I’d gone in a full crisis I could have died before anyone noticed.
After about eight hours the pain in my head returned and I started crying. I began to vomit again. I had to get up to find a nurse. She said I could have paracaetamol and cyclizine. I explained the hydrocortisone would have all metabolised because of its intravenous administration. She told me to calm down and try to rest as I was keeping other patients awake. I continued to have pain and to cry. I tried not to make a fuss but after a further hour I asked her again for some help. She said I’d had all the meds prescribed and to stop bothering her as she had other patients who were seriously ill. After a further two hours I asked to see her again and told her that I wanted to see a doctor. She was furious with me by now and was huffing and puffing and spitting her words at me.
The doctor apologises
A different doctor came, but this took a further hour. At first the new doctor didn’t really want to do anything, telling me to calm down or the stress might cause a panic attack. I asked her to go read the ADSHG emergency letter and again said that the hydrocortisone would have all metabolised in six hours due to intravenous administration. She came back and apologized, then prescribed six-hourly hydrocortisone and fluids plus cyclizine (an anti-emetic). Just one hour after getting my meds, I was much more comfortable. Then I was transferred to a ward. I could have died. Such ignorance. Such attitude. I really felt hurt when I was told not to bother the nursing staff as they had seriously ill patients to deal with - meaning that I wasn’t one of them.
If it were not for the emergency letter produced by ADSHG, the doctor would also have left me till the following morning, by which time I might have been dead. I had the knowledge to fight my case with confidence because of the information produced by ADSHG and made available to members. Thank you.
This experience was frightening and one I would not like to repeat. After three days of intravenous hydrocortisone due to the vomiting, I was allowed back home. I am now well.
A happier occasion
Fast forward to November and I was back in hospital with another infection, they couldn’t tell what. I developed a temperature of 39°C with diarrhoea and vomiting. This time my treatment was very different and reassuringly on the ball. After my last hospital experience, I rang my Ambulance Services Trust. They asked me to write to the ambulance controller, which I did. I followed up by ringing again to confirm that I had been registered on their alert system. And thank goodness, I was. My next experience with 999 was completely different! The ambulance men were swift to arrive, empathetic and well informed about Addison’s. In Accident & Emergency I was immediately taken in to a cubicle and seen by a doctor within half an hour. The doctor realized how poorly I was and they started IV treatment straight away. Although I was on a trolley in A & E for 13 hours because of a bed crisis, I was well treated. I even got a visit from my endocrinologist, who reassured me that I had an infection and required IV hydrocortisone, antibiotics and fluids. Within three days I felt so much better. The nurses even noticed how frequently I needed to urinate and decided to monitor my urine. Unfortunately, it seems there was glucose in it so now they are querying diabetes. This might help to explain why my has been so unstable this year.
You can find more information about the process for registering with your ambulance service in the Managing your Addison's and GP Care leaflets. There are regular articles in the ADSHG newsletter on this topic and back issues can be viewed ADSHG newsletter back issues (members only).